The Lupus Magazine Archive

The Lupus Notebook official website

2011-11-17T20:34:00.000-08:00

The Lupus Notebook now has its very own website. You can learn all about the research program we will be assisting, preview the book and also purchase a copy to help fund lupus research. There's also a link to our facebook page, where author Geoff Thomas gives some background info behind the images contained in The Lupus Notebook ~ www.thelupusnotebook.com

The Lupus Notebook

2011-11-16T22:33:00.000-08:00

The lupus notebook is a helpful resource to document all things personally lupus related. The lupus notebook is a compact little journal helping you to record every aspect of your health. It also makes an excellent gift for someone close to you dealing with lupus.

By detailing your lupus history, you can keep track of illnesses, medicines, treatments and procedures. Be sure to take the lupus notebook to your medical appointments. You will have a complete record of illness, hospitalization, surgeries, medicines and the frequency that you are taking them.

Primarily, you'll document notes during consultations for later reference. You'll also be able to record future appointments, addresses, organizations, telephone numbers and useful lupus related websites and information. The lupus notebook is your personal lupus journal and diary with all proceeds donated to lupus research.

Why the lupus notebook?

Accredited photographer Geoff Thomas was diagnosed with cutaneous lupus and subsequently became passionate about raising awareness for his disease, including cycling 9018 miles around America.

The majority of the 112 images in this book were captured while cycling around America, across Australia and at various world sporting events.

Geoff has decided to put these previously unpublished photographs to good use by raising funds for lupus research.

All proceeds from the sale of this book will benefit lupus patients worldwide via lupus research conducted at The Australian National University's John Curtin School of Medical Research.

For more details please visit: Humoral Immunity & Autoimmunity - JCSMR - ANU

© Geoff Thomas
A book by DDM + Publishing www.dirtydogpublishing.com

The Lupus Notebook

(80 pages - pocket book)

ISBN: 978 0 9808598 4 3

All rights reserved

The Lupus Notebook by geoff thomas

Welcome to the new look lupus magazine - a message from the editor

2011-08-22T23:50:00.000-07:00

Welcome to the 'new-look' Lupus Magazine - www.thelupusmagazine.com
a message from the editor

Dear Readers...

Over the past few years it has been an absolute pleasure to bring you informative news from the lupus world and also highlighting the fine art and writing of some very talented contributors. Publishing the magazine monthly has been a huge task for all involved, considering it's 100% voluntary and we all have a form of lupus. And as all things evolve, we've decided to make a few changes to the format of The Lupus Magazine.

To make the magazine more user friendly and up-to-date, the biggest change will be transforming the magazine into a global hub for those with relevant lupus websites and blogs. We will be able to feature links to sites and blogs worldwide and hope the choice offered to readers will grow over the months and years to come. Basically, anyone discovering The Lupus Magazine will then have the opportunity to search through all the listed sites and blogs right from within our website.
We will still be offering feature articles, events, news and photos from around the world, not to mention our most popular features like Teen Lupus, exPEERiences and Meet Someone with Lupus to name a few. You'll also be able to read the latest articles direct from our writer's sites so there's no need to wait a month for the best lupus writing there is.

Naturally, we'd welcome your feedback as we continue to grow and evolve. And you're also welcome to submit your lupus website or blog for consideration to be included in what we hope will be the biggest and best lupus directory there is.

My many thanks to everyone who made The Lupus Magazine what it is today and to all our readers for your wonderful messages of support. It is really appreciated.

Geoff Thomas

Editor ~

How's it Hangin' by Annessa Babic

2011-08-22T23:43:00.000-07:00

How's it Hangin'
by Annessa Ann Babic ©

In the summer of 1988 my family and I still lived in Fort Wayne, IN. That summer, during the Three Rivers Festival I think, my sister and I enjoyed the high-time entertainment of carnival rides. After a few rounds without a distinct memory, we ended up on something called the Loop O’ Plane. At this point, we welcomed the ride because standing in line in the stagnant Midwest summer heat was almost too much to bear. Loop O’ Place may have not been the exact name of it, but the gist is the same. The ride puts two people in a container and swings them at volatile speeds. Eventually the contraption swings the riders to the top, hanging them upside down, and leaves them there for a minute before continuing the motion. So, the Babic kids were always a little fierce and ferocious, and the Babic girls were no exception. When we swung up to hang upside down for a moment of stationary and self-imposed fright I yelled out “How’s it hangin’?”

Did I tell you that I was twelve and my sister was seventeen?
My sister turned the brightest shade of red I have ever seen, yelled “Oh my god,” and we continued to laugh hysterically. Though, she was hiding her face and dying of embarrassment. Why? She, being in high school and all, faced the real teenage angst of a pesky little sister. More so, the Werth boys were down below. Steve, the youngest Werth boy, was my friend. Steve and I had a unique place in middle school, our siblings kind of made us cool. They were in high school, and . . . they had cars. We totally rocked. More so, Steve made me cool just by knowing him, and since we were friends and all I didn’t really care if I was yelling something asinine. We did worse when we were together. He and his brothers laughed, later he and I joked about it, but my sister . . . I’m not sure if she ever recovered.

That moment, of childhood and teenaged bliss, still represents much of my life. A life with Lupus (SLE to be more precise) often leaves you swinging within a cage, hung upside down, and when released from the state of flux you are still spinning and whirling. I was sixteen when I was diagnosed, and the news was not well received by anyone involved. By this time, we were living in a small Kentucky town along the Ohio River. Days of fear, shame, and self-loathing followed. You know, the usual Lupus based insanity. Yet, the nature of my personality, life, and karma didn’t really change.

In the days that followed, I desperately tried to cope with what was now my new condition for this life. A close friend—Milton— asked his father about Lupus; his Daddy is a Doctor. To this day I don’t really know what he told him, but I do know that we all went kind of crazy right after that. Me especially. I played soccer, twirled my flag in Colorguard, ran track (badly, but I did), and I developed a wry sense of humor about my illness. I did stupid teenage things, and my friends nearly died when I would hang out car windows, cling to truck cabs, and chase cars on roller skates down winding Kentucky hills. I should note that my parents are learning that as they read this, and I am sure they just exclaimed a few explicative words at me. I told my closest friends that my bruises were badges of honor, since the color for Lupus is purple. I said it was only fitting that I have Lupus since my favorite color is purple. When I got another chronic nose bleed, I would outstretch the bloody tissue to the nearest person and ask “Want some Lupus? I’m giving it away.” On a side note, I do not recommend you do this one. Milton nearly threw up on me in English class, and my doctor in Virginia (Dr. John Prince, Jr.) looked at me in shock and horror as I cackled like a jackass. I was seventeen when I did that to John, and since he has told me that he still tells folks out my disturbing sense of humor (and he laughs about it now). Poor guy, he had only been done with medical school and residency for a couple of years when he met my crazy self.

Over the next couple of years, I got sick, the blood work came back progressively bad, blood showed up in the urine, I had so many bladder infections that you could have said I was involved on a long, heated affair with them. I developed a sense of “oh well, another script to fill,” and my parents grew progressively frightened. Then at nineteen I had my first Lupus related hospitalization. That came from a kidney infection. I took the autoimmune disorder side of Lupus and made jokes. My favorite, which I still use, is that my body was allergic to itself and perhaps it was developing a new way to pee so I wouldn’t have to spend so much time in the bathroom. Very few people found the latter half of that joke amusing. Oh well, they don’t battle the butterfly on the daily basis.

Years have gone by, as I’m now closer to thirty-five than not. Part of me is still that half scared kid in Kentucky seeking acceptance from friends, yet a larger part of me is the woman who runs half marathons, rides her bike on off roads just to enjoy the thrill of dirt and near falling (or outright falling as I’ve been known to do), and no longer keeps the Lupus help within. I loved a man for nearly three years who bailed on me when I came out of remission and ended up in the hospital. Sadly, he knew I had Lupus. Even sadder, I wasted love on him. Yet, with so many things there is a silver lining so to speak. I learned from him that if you are going to slinker away in the night like a spineless weakling, then it is better you do that early on. I don’t have the patience for such nonsense.

These days I’m a hardened New Yorker who runs in her nearby park, has typical and hysterical encounters on the subway, and a woman finally comfortable in her own skin. I’m training for a full marathon in November, and in the course of that I know that my body will scream, my joints will cry, and my skin will speckle itself in various shades of red. I wear sunscreen like most women wear perfume, and I wear a tattered Yankees hat for the love of my team and the protection of my face. I came in from a lackluster run last night and sent a picture of the rash to a couple of girlfriends with the message “What’s a little Lupus rash when 26.2 is at stake?”. One wrote back, “Life is never easy, is it?” No, it is not. But, much like that twelve year old who made her big sister turn a brilliant shade of crimson I’m still hangin’ on, feelin’ like I am upside down, and finding the laugh point along the way.

meet someone with lupus - mary

2011-08-22T22:18:00.000-07:00

Meet Someone With Lupus

Having Lupus and What it Means to Survive

By Mary Vanna Campbell

The definition of a survivor is a person who continues to function or prosper in spite of opposition, hardship, or setback. Everyone has a story to tell and everyone has survived one way or another. Well I am going to share another part of my life with you.

As the Vietnam War in 1975 was ending another uprising was starting. If you have ever seen the movie "The Killing Fields," that movie will give you an idea about what is was like being born a Cambodian.

It was a time of sorrow and pain. Thousands of people died as a result of one person who was basically an evil dictator. Most would say that he was a Asian version of Hitler. His name was Pol Pot. He had a regime that was called the Khmer Rouge (his army) and whoever didn't follow him were killed. He had ordered landmines that were placed in the rice paddies and Pol Pot had them placed for each and every Cambodian. Whoever stepped on one was killed instantly. Others lost more than just their dignity they lost their limbs.

I only have bits and pieces of stories that may have or have not happened to my biological parents. According to the information that my adoptive parents were given when they adopted me, my biological parents were killed in a rocket attack and judging from a shrapnel scar on the back of my leg, I believe that my mother was holding me when she died. I was 9 or 10 months old when I was adopted. I was one of many babies and children who were orphaned in the massacre. There was a wealthy gentlemen who wanted to help. He had sent a few commercial airplanes for the orphaned children and babies. They called it "Operation Baby Lift." Over 3,000 children were rescued one of the planes that was caring the orphans actually didn't even make it off the ground it crashed into a rice paddy. That particular plane was carrying 350 people on it and only 154 survived.

When I was a baby my prognosis of my developmental abilities were slow. I was malnourished and very sick. My birthday wasn't even my real my birthday at all. It was given to me. I spent most of my life wondering what my mother was like or if I had any family that was still alive. I would love to visit Cambodia one day, because it really is a beautiful place. I had a really healthy childhood for the most part. Then things changed and there really wasn't any explanation for it.

When I was 10 years old I had a grand mal seizure and it was so bad that I was put into a drug induced coma. The seizure really baffled doctor's and my family. Then 6 years later to the day I was diagnosed with lupus. I was put on all kinds of medication that eventually started to work. I had my lupus under control and was afraid to even have kids and I really didn't know if I could have kids due to all the medications I was on. Well I had 2 beautiful daughter's in '94 and '96.

Then in the summer of '97 is when I had a flare up and it almost nearly killed me. All the things that I have gone through I went through for a reason. For the longest time I didn't know what do to do with the burdens that I was carrying. I fought my hardest to stay healthy so I could watch my girls become young ladies and eventually watch them get married and have children of their own. Having survived all those things in my life has helped me be a better person, a better mother, and a better wife. My family is what I am inspired by.

I know that for some people it is not always easy for them to live with lupus and be happy about their situation whatever it may be. Honestly I don't know when and if I will have another really bad flare up. What I do know is that I think I was born to survive. My wish is to reach out to others who are suffering. There is always a light at the end of this tunnel.

A Rose Among Thorns by Geoff Thomas - an interview with Kimberly Dansby - The Purple Rose Foundation

2011-06-06T06:29:00.000-07:00

A Rose Among Thorns by Geoff Thomas ©

This month we meet the remarkable Kimberly Dansby. Geoff Thomas interviews the founder of The Purple Rose Foundation, an organisation focused on fundraising efforts; thus providing academic scholarships to students with lupus, as well as dependants of those fighting the disease...

First Published in The Lupus Magazine by Dirty Dog Media + Publishing

As people affected by lupus, we are all students in a sense. We are constantly learning about lupus and how it affects us. We are educating ourselves as we search for information. We listen to the experiences of fellow lupus patients and decipher the language of experts in the medical field.

And often, we become teachers ourselves, as we pass on information to others as the cycle of lupus involves a new inquisitive face daily. And as a result of our medical conditions, our families and friends also become students of lupus too.

Despite the illness, we are able to compare notes with fellow lupies relatively easily and usually from the comfort of our own surroundings, via support groups and online. However, one must spare a thought for those who actually want to study another subject altogether.

Enter Kimberly Dansby, an inspiring woman who is striving to make this a reality. Kimberly is the founder of The Purple Rose Foundation, an organisation focused on fundraising efforts; thus providing academic scholarships to students with lupus, as well as dependants of those fighting the disease. Students will be awarded their scholarships in the fall of each year.

More often than not, it takes someone within the lupus community to share their personal experience of lupus in order to assist others. Kimberly is no exception as she explains how lupus entered her life.

“My story is different. I never had any idea that I had lupus. I didn't do numerous tests in order to find out what was wrong with me. After I had my daughter, I began to lose my hair. I attributed it to stress and just figured I was a mom, a student and working fulltime, so it was something normal. I then began to wear weaves and wigs to cover it up. One of my friends kept asking me why I never wore my own hair. This friend is a RN. When I told her why and showed her my hair, she said I needed to tell my doctor. I did, and when he saw it, he said my body was attacking itself and did the ANA test. This test came back positive. This was in October of 2009,” recalls Kimberly.

As a result, it took a while before she was ‘officially’ diagnosed.

“I was diagnosed with lupus March 12, 2010. It took me five months to get into a Rheumatologist who could see me. Once I went and saw her, she knew right away I had lupus. Over the course of that year, I would learn I also had RA, Sjogren's Syndrome and Raynaud's,” explained Kimberly.

As someone who’d never heard of lupus before being diagnosed with cutaneous or discoid lupus myself, Kimberly tells a similar story of her familiarity of lupus prior to her SLE diagnosis.

“When I got diagnosed I’d only heard of lupus indirectly from other people. I had absolutely no idea what it was. I instantly feared my daughter would have it. After that I feared that the diagnosis was a death sentence. I was so scared and all of the information I had, or the few people I would talk to, concerned death or major surgeries so I was absolutely terrified.”

There’s also a familiar trend in Kimberley’s family and friend’s knowledge of lupus at the time of her diagnosis.

“My friends and family didn’t understand lupus at all. Even those who knew someone with lupus didn’t understand. I lost many friends to ignorance about the disease. They thought I was a flake because I wouldn't always have the energy, or would be in too much pain to attend certain events. They didn’t understand why I was so forgetful or why I would have mood swings. The main problem was, because I looked fine, people automatically assumed I was fine and that simply was not the case,” says Kimberly.

With this duly noted, I’m interested to learn how important lupus awareness is to Kimberly.

“Lupus awareness is extremely important to me. Not one day goes by that I do not educate someone about the disease. The more awareness we have about the disease, then the more funding and research will be devoted to it as well.” Kimberly adds, “I believe there is a greater sense of awareness in general regarding lupus. People who formerly knew nothing about the disease are now my biggest supporters. I am very active in the community and reach out to local politicians and also work with larger lupus foundations.”

Today, lupus affects Kimberly’s brain and lungs. Her white blood cell count was sixty times higher than what it was supposed to be and she tried several medicines but ended up having to have chemotherapy. The side effects were horrible.

“The first time I had terrible headaches and dizziness. The second time I actually had trouble breathing and staying conscious and I was rushed to the hospital via ambulance. While I respect lupus, I try not to let it keep me from doing the things I want to do in life. I take breaks and I rest as much as possible, but I am still able to do some of the things that I used to do with my family,” explained Kimberly.

So where did the idea come from regarding establishing The Purple Rose Foundation?

“When I was diagnosed I felt very alone because I did not know anyone else who had lupus. I also then realized I had lupus for six years and didn’t know. Had I known more about the disease, then perhaps I would have been able to recognize the symptoms and get diagnosed sooner. As I spoke with people about lupus, many times they didn’t know what it was, so my friends and I decided to start a foundation to spread awareness about the disease,” reflects Kimberly.

The Purple Rose Foundation is committed to spreading awareness about lupus and also providing college scholarships for people who have lupus, or children of people who do. So is it primarily to assist those in your region or is it a nationwide project?

An ambitious Kimberly explained, “Right now we are primarily focused on the Southern Californian region. As Purple Rose grows and becomes better known, we will expand to a nationwide and maybe even worldwide foundation. In the future we will increase our reach to help people with lupus in their day to day lives and assist with purchasing prescriptions and providing other financial aid to those who need it.”

So was it a matter of being a student yourself that gave you the idea to establish a scholarship fund?

“Yes. Because I am a student I understand the challenges people with lupus can face. I go to school fulltime and it can be very difficult but not impossible. But I wanted to do something to help people so they would not have to give up their dreams due to diagnosis. In the future Purple Rose will expand its reach to help a broader base of people with lupus, but for now we are focusing on helping people make a better future for themselves by assisting with their college education.”

And as a student, what are you studying and do your fellow students have an awareness of your lupus?

“I am currently seven months away from having my Bachelors of Science in Human Services Management at University of Phoenix. Once done with this, I will begin my Masters Program at University of Laverne in Leadership Management with an emphasis in non-profit management. I inform my classmates about lupus at every chance I get. My fellow students help me out a lot when I’m not feeling well enough to get my work done. I still hold my weight, but they help me so that I don’t stress about our projects. I’m also in the process of applying for assistance through the American Disabilities Act which will help to extend deadlines and provide note takers when needed.”

It’s difficult to commit to study at the best of times, let alone when you’re struggling with a chronic illness. Kimberly discusses some of the hurdles she’s faced as a student with lupus.

“It can be very challenging to go to school especially if I’m having a flare. There are times I am too tired to even do anything, or my fingers lock up so I’m unable to even move them to type. This can be frustrating because I know what I want to say, I just can’t type it. My grades were getting affected because I would turn in things late because I forgot due to lupus fog, or I was in pain, or even one time I was in the hospital and I missed my due date. That is one thing that Purple Rose educates people about. Under the American Disabilities Act, there are accommodations that can be made to help make our college experience easier,” she informs me.

I’m interested if Kimberly’s scholarship idea was established primarily to take the pressure off those with lupus financially, or to display that you can have lupus and gain an education too. It appears that both instances apply.

Kimberly tells me, “I really want people with lupus to understand that they can still accomplish their dreams. Although we may have a tougher road than others, we can still reach our destination. Financially it helps because many times people cannot get scholarships because they’re not taking enough units. If you have lupus and you can only manage to take one class, I don’t feel that there shouldn’t be assistance for you just because you are ‘only’ taking one class. It may be the biggest accomplishment being able to take that one class and not simply dropping all of your classes because of the disease.”

For Kimberly, there have been so many positives to come from having lupus. Her relationship with her family has improved tremendously. She’s very close to her friends and she’s met some amazing people who are fighting this disease as well. Her faith in God is stronger than ever and she’s also able to share her story and help people who, like her and many others, didn’t know anyone with lupus previously. Aside of the medical issues, Kimberly also has a message for those new to lupus.

“Don’t be scared. I tell people who are newly diagnosed to really learn about their body and to understand when they need to rest. They shouldn’t be hard on themselves and recognize it’s normal to feel depressed sometimes… And that we’re still pretty whether we lose our hair, have scars on our face or anything else this disease can cause… That even though we have this disease it’s not a death sentence,” Kimberly offers quite positively.

The more I’ve discovered about Kimberly and her intentions with The Purple Rose Foundation throughout this interview, the more inspiring I’ve found her to be. As for her inspiration, her faith in God plays a major part along with those who are suffering with more severe symptoms than herself and who are still able live their lives.

Kimberly adds, “I’m inspired by people who have been close to death but are still here and fighting. I am driven by my family. I want so much to make them proud and to show them that I am going to be okay… I am a lupus survivor.”

On more than one account, I tend to get the impression that Kimberly Dansby’s already graduated. From the college of life, that is.

Search for:
The Purple Rose Foundation - Website
The Purple Rose Foundation - Facebook
Learn more about The Purple Rose Foundation Scholarships
The Purple Rose Foundation: P.O.Box 262 Bloomington Ca, 92316

exPEERiences - June 2011 - Katherine - edited by Hannah

2011-06-06T06:19:00.000-07:00

Welcome to exPEERiences

ExPEERiences edited by Hannah
First Published in The Lupus Magazine by Dirty Dog Media + Publishing

We now present you with the personal experiences of teens who are all going through different types of lupus. And, who are still striving to find the bright side. One can only hope that this new addition will inspire you to do the same. In other words, the experiences of your peers. Get it? Ex-PEER-iences? I thought that was pretty clever…

This month’s “exPEERience” submission is a 17 year old girl named Katherine Damerst. Here is her story:

“My name is Katherine and I have been dealing with Lupus for almost a year. Now 17, I found out I had Lupus at age 16. I haven’t gotten a full diagnosis yet but we’re going down that road, along with the diagnoses of Fibromyalgia. Honestly, lupus is a daily struggle. Although I may have Lupus, I still try to fit in as best I can. I’m a junior in high school and I can luckily still attend most of my classes. I may be looked at differently and teachers may give me different treatment than others, but I still try to be like the rest of my classmates.

My days usually involve dealing with pain at school, then coming home to sleep for hours because of those horrible high school early mornings. I’ve been on high doses of Prednisone and Plaquenil for a while now. The Prednisone has been very difficult to be on. Luckily for me, I do not experience face rashes or hair loss. My main concern is the pain in my joints.

Even though I’m not healthy like everyone else, I am at least happy to say that I am alive and I have family and friends that support me throughout this journey. Without them, I don’t know how I would deal. I would say that the best medicine of all is the love and support of others.

Lupus may be hard to deal with, but we still need to take steps forward and be strong for others and ourselves. Lupus has given me strength and taught me how to show others to be strong. It has shown me the true values of life and taught me to treat each day as a gift. I’m glad I have Lupus so that I can be who I am today. It has opened my eyes to the more difficult experiences that others may struggle with. And ya know what? I’m a better person for it.”

Thank you so much to Katherine Damerst for sharing her “exPEERience”! For those of you who would like to get in touch with Katherine, please email me and I will be sure to forward your message to her.

*To submit your own “exPEERience”, please send your story to hannah.tubbs@hotmail.com

Stories concerning teens you may know with lupus are also welcome.

The Inner Me by Nelly Chester Bean

2011-06-06T06:13:00.000-07:00

The Inner Me... by Nelly Chester
First Published in The Lupus Magazine by Dirty Dog Media + Publishing

Having Lupus can impact one’s life not only physically and emotionally, but it can also do a number on us mentally and spiritually.

Many of us Lupies try to take care of our body by taking our meds, eating well and some can even muster up the energy to exercise… But what about your spirit, the person you are? Hmm, did I stump you here? Our spirit is what makes us unique. It’s our character, our soul. Our spiritual perspective explains all the hard questions – love, life, death, tragedy, hope… our overall existence.

How do you keep yourself spiritually grounded, especially on those days when the wicked flare man rears its ugly head? I took a trip within myself and did some serious reflection. I now have a deeper understanding of myself spiritually, of my inner person. On those dreadful days when simply lifting myself out of bed isn’t even an option I seek out that inner strength… my core.

Within that core lies all my loves, all my pain, successes, failures, happiness, sadness, life and even death. One may wonder how does pain, failure, sadness and death fall within that core? Well, because of the pain and sadness, I now know the meaning of true love and happiness; having experienced failure I know realize all my successes; and from death, I have learned how to live.

In the center of that core I find such strength… strength from knowing I have a great support system that doesn’t end with just my family and friends. It extends far greater than that. My strength also comes from mere strangers in passing that are willing to hear my story, thus continuing to spread Lupus awareness. Having been Lupus Awareness Month in May, I came across so many amazing people, non-inclusive of fellow Lupies that have inspired me with their words of encouragement and support and their own stories.

In honor of just a tiny fraction of the wonderful people in my life, enjoy a picture of what in fact gives me strength and what Lupus can’t take from me…my “inner me.”

A Lupie Bucket List by Maddie Pearce - Lista final de deseos de una lupis

2011-06-06T06:07:00.000-07:00

A Lupie Bucket List by Maddie Pearce ©

First Published in The Lupus Magazine/La Revista de Lupus by Dirty Dog Media + Publishing

There are many people out there who, because we have a chronic illness, will tell us that we can’t do something. There are people who will say no, who will oppress and who will judge. But, I find that if you care what people think, then you aren’t really living your life the way you want to.

I have Raynaud’s. I have Antiphospholipid Antibody Syndrome. And I have Lupus.

But that doesn’t stop me from making a to-do list. Despite the difficulty of living with a disease, I plan on doing every one of these things before I die… in no particular order, I might add!

1. Go to all of the major tournaments for tennis. (I can already cross off the U.S. Open!)

2. Go skydiving. (I might try and back out… we’ll see about this one!)

3. I want to be able to tell someone the story of my life, sparing no details, and taking as long as it takes.

4. Be an audience member in a TV show. (I’m not picky!)

5. Send a message in a bottle. (To anyone, anywhere.)

6. Learn to not say yes, when I really mean no. (This is a hard one.)

7. Write a book. (A completely finished, published book. With a dedication and everything!)

8. Be someone’s mentor.

9. I want to build the courage to ask someone I’ve just met to go on a date.

10. I want to find a job that I LOVE. (Yes, I’m still in college, but why work a job that you don’t enjoy?)

11. Accept myself for who I am.

Having a disease will not stop me from crossing off any of these things on my list. And I plan to do just that. Maybe even add more! And cross every single item off.

Setting goals like these can help make your ambitions and dreams in life a reality. By achieving this, you can become the greatest person you can be. Lupus has made me a stronger, better person. So, go out there and start a list!

Nothing can stop you.

© Maddie Pearce & The Lupus Magazine

..................................

Lista final de deseos de una lupis por Maddie Pearce ©

Hay mucha gente allá afuera que, debido a que tenemos una enfermedad crónica, nos dirá que no podemos hacer algo. Hay gente que dirá que no, que oprimen y que ha de juzgar. Pero, me parece que si te importa lo que la gente piensa, entonces usted no está realmente viviendo su vida de la manera que desea.

Tengo Raynaud’s. Tengo el síndrome de anticuerpos antifosfolípidos. Y yo tengo lupus. Pero eso no me impide hacer una lista de tareas pendientes. A pesar de la dificultad de vivir con una enfermedad, pienso en hacer cada una de estas cosas antes de morir... sin ningún orden en particular, debo añadir!

1. Ir a todos los grandes torneos de tenis. (Ya puedo tachar el E.E.UU Abierto!)

2. Paracaidismo. (Puede que lo intente y me arrepienta… vamos a ver acerca de esto!)

3. Quiero ser capaz de decirle a alguien la historia de mi vida, sin escatimar detalles, y tomando el tiempo que sea necesario.

4. Ser un miembro de la audiencia en un programa de televisión. (No soy exigente!)

5. Enviar un mensaje en una botella. (Para cualquier persona, dondequiera.)

6. Aprender a no decir que sí, cuando realmente quiero decir que no. (Esta es difícil.)

7. Escribir un libro. (Un completamente terminado, un libro publicado. Con una dedicatoria y todo!)

8. Ser mentor de alguien.

9. Quiero tener el valor de pedir a alguien a quien acabo de conocer a ir a una cita.

10. Quiero encontrar un trabajo que me encante. (Sí, todavía estoy en la universidad, pero ¿por qué tener un trabajo que no disfrutas?)

11. Aceptarme como soy.

Tener una enfermedad no me va a dejar de tachar ninguna de estas cosas en mi lista. Y pienso hacer exactamente eso. Tal vez incluso agregar más! Establecer objetivos como estos pueden ayudar a que sus ambiciones y sueños en su vida se hagan realidad. Al lograr esto, puede ser la mejor persona que puedas ser. Lupus me ha hecho una persona más fuerte y mejor. Por lo tanto, salga y comenze una lista! Nada puede detenerte.

© Maddie Pearce y La Revista de Lupus

Teen Lupus - Distractions by Hannah Tubbs

2011-06-06T05:58:00.000-07:00

Distractions by Hannah
First Published in The Lupus Magazine by Dirty Dog Media + Publishing

Disclaimer: Hi, everybody! I just wanted to add a little blurb before jumping into this month’s article. I have been going through a flare as of late, not feeling well at all. In addition to not being able to be all that active on account of painful, swollen joints, I feel like this article has some major room for improvement. I hate not feeling like I am giving you 110%, but I didn’t want to leave you hanging either! So with that said, I want to say sorry if this article is a bit less than stellar. I do hope you enjoy it all the same.

Have you ever heard the saying, “Necessity is the mother of invention”?

Well, ladies and gentleman, I have a new saying for you…”Distraction is the mother of taste”. Now, I know what you must be thinking... It does not exactly roll off the tongue. It is probably even downright confusing at this point. Do not fret. It should make sense by the end of this article. At least, I hope so.

Now let’s face it…this disease is a package. It comes with all sorts of fun consolation prizes on top of its many physical manifestations. Insomnia, isolation, insecurities… they just come with the territory. Copious amounts of time spent sitting around on your butt is definitely one of those annoyances. Oh, so much time to think. Lovely.

Lupus aside, I have always had a rather introspective personality. I over-think and over-analyze things to the point of annoyance, quite frankly. So falling into the habit of constantly living in my own head just came naturally to me. It was not until I started really learning about lupus that I truly understood how counterproductive such a practice can be to my health. As each pain or worry reverberates through my brain, the stress on my mental health is mirrored in my physical health. In other words, the two go hand in hand.

I am sure I am not the first to tell you so, but the bottom line is… stress is bad, especially when lupus is part of the equation. When my mind or body is under stress, my body instantly reacts. My heart rate and blood pressure elevate in accordance with my stress level. With lupus, not only do these reactions occur but an already overactive immune system kicks into super-drive. This is why when I am under stress, it feels as though my body is under attack.

Believe me, more than anyone I understand that stress, in any form, cannot just be turned off like a switch (oh, wouldn’t that be nice?). However, when such stress is the result of constantly being alone with your own thoughts, there must be some way to keep your sanity and prevent one of those gnarly, stress-induced flares.

This is where distractions are your very best friends. Some may read this and think of it as trivial. With all the struggles and hardships that teens with lupus face, there are so many more important things to write about. To those people, I wholeheartedly beg to differ. In the face of such struggles, what could be more important than finding some way to distract oneself? Less eloquently put... to keep one from living in one’s head… which, I must say, I am guilty of doing a majority of the time.

If you know me, you can probably guess what means of distraction I find most useful. It is my opinion that even if I had not been through such difficult times in my life, music would still be one of my passions. I was born into a household under perpetual debate… on what music was to set the soundtrack for the day, that is. Battling it out between The Smiths and Talking Heads, or Led Zeppelin and Fleetwood Mac, my parents had brilliant and differing tastes. Inevitably, the only outcome was to pass them on to two of the most musically diverse children in the universe…my sister and I.

It has been my personal experience that in times of struggle I find out who I really am. Abstractly, we find strengths and personality traits that we otherwise would have never discovered. For the sake of this article though, I will be a tad more specific. In times of struggle, one discovers personal taste. Without any outside interference, one discovers what distracts them; what gets them through the hard times.

When I was younger, I always knew I was a bit odd. An eight year old singing the best of Sting & The Police at the top of her lungs, or writing fan mail to Van Morrison. I realize now that it was just another bright side in disguise. In finding something to distract myself from whatever struggle was going on in my life (including, but not limited to, lupus), I began to develop my own eclectic taste. Beyond that, I began to develop my own eclectic personality.

In so many more ways than just my taste in music, having lupus has made me realize who I am. I would not trade that for the world.

*This article was based solely on personal experience. Of course, everyone is different. For some, it is music. For others, it is work, TV shows, art, or even people. Find a distraction that works for you.

Until next time!
Hannah

* Hannah is the founding Editor of this exciting new page for teenagers with lupus and also exPEERiences - a new page for teens to share their lupus journey.

An Open Letter to a Health Care Provider by Annie Taylor

2011-06-06T05:51:00.000-07:00

An open letter to a Health Care Provider

by Annie Taylor ©

FirstPublished in The Lupus Magazine by Dirty Dog Media + Publishing

Dear (insert Doctor/Specialist/Phlebotomist/Physiotherapist’s name here)

Following my latest appointment, I am dropping you a line to let you know a few things about me. I am not a nameless patient. I have lupus, but I am not lupus. I am an individual. Please do not roll your eyes and give me that ‘here we go again' look. Try getting to know me. You might learn something.

Please do not give then take away my Lupus diagnosis without looking carefully at the history. One spotty young intern’s comments do not a diagnosis take away. Oh and never say to a patient, "Well you have something auto immune going on but we don't know what. Come back if you feel worse."

Please do not trivialize my symptoms without investigating them. I know my body. That will come back to bite you and me in the arse... I have lupus, the Great Imitator.

Please do not poo poo my comments, opinions and remarks. I have been right, often! Sometimes the informed patient does know better than the doctor. I have lupus but I have to research because you won't.

Please do not presume I am making up my symptoms just because they are not present at examination. I am keeping photos and a diary now!!! I have lupus... Things do come and go.

Please do not feel it is necessary to inflict maximum pain in a procedure like an EMG just because you can. It is not necessary. I have lupus and have those tests over and over again. I have a Benchmark to compare it to, you sadistic hag. I really did not enjoy having muscle spasms in my legs for the next four days. Oh and please learn some bedside manners. A smile won’t crack your face. Oh, and shave your pits or learn about d-e-o-d-o-r-a-n-t. I have lupus, I am not a lab rat.

Please take note of my comments about drawing blood. I've probably had more blood drawn than you've ever seen, you snotty nosed pimple faced geek. I have lupus you fool!

Please do not gloss over my questions or ignore them. I am a "need to know "person and I have the right to understand what you are saying. I have lupus, if you don't know about it I have to!

I have a right to know about my medications. Do not expect me not to query them.

And Doc, if I present at your office and say I need help now, I am right - I am strong but I have lupus. I know my body, my disease and my capacity for recovery. I am not a nut, a hypochondriac, a schizophrenic, menopausal, bored, lazy or a fool. I have lupus.

In closing Doc, thanks for all anguish, the tears, the frustration, the self doubt and the grief. I have lupus. Listen, learn, educate and support. It's not hard. Remember, I pay you.

Yours,

The Lupie lady who helps put your kids through school and university, pays for their braces (that she couldn’t afford for her own kids), and is still working in order to pay for her meds.

© Annie Taylor & The Lupus Magazine

Lupus Flare Burn Out? - by Kristel Goodspeed-Correa

2011-06-06T05:45:00.000-07:00

Hope beyond the Crystal Pane

by Kristel Goodspeed-Correa ©

Lupus Flare burn out?... And how my phenomenal online friends help me through

First Published in The Lupus Magazine by Dirty Dog Media + Publishing

Wow! What a crazy couple of months this has been for me. I’ve been in a Lupus flare for close to two months now and it’s really starting to take it’s toll on me. I am really beginning to wonder if I might be in the midst of a Lupus flare burn out. Is there even such a thing? I think so…

I’ve been sitting here, staring at a blank screen for awhile now trying to think on something positive to say. Hmmm interesting dilemma. This particular flare has been the worst I have had since being diagnosed. It is very difficult to have a positive spin on this disease when you have felt like a Mack truck has run you over and over... Then backed up and ran over you again… Where’d that wolf get his license anyhow? Must have found some app on the internet is my best guess ;)

Despite it all though, sometimes positive and inspirational things can be found underneath our noses in the most unlikeliest of places. We just have to look for them. For me, it has been the support and encouragement of my online friends. They are the best group of people in the entire world. I will say that over and over again because it is the truth. I can always count on them to help pick up my spirits when I am down.

Anyone who knows me, knows I am a talker and can often ramble on sometimes. Usually people have to tell me to shut up LOL. With this particular flare, I have withdrawn dramatically to try to get rest and battle to regain control of my own body. I’ve even seen personality changes from my usual funny self to some crabby person I don’t even recognize. (I didn’t even know that mean person lived in me, but apparently it does).

It’s amazing to me how my online friends just seem to know when I need a hug and send me words of encouragement. I appreciate them so very much. We aren’t alone in this disease. I need them just as much as they need me, sometimes more so. I think they have all gotten to know me so well, that they sense when “something” isn’t right. I have had so many message me to inquire if I am ok, etc. It is just phenomenal at the amount of caring we have for one another online. People we have never met, but we share this common bond - Lupus.

I recently celebrated my 43rd birthday. People around the world took time out of their busy days (and on Mother’s Day too, mind you) to wish me a Happy Birthday. That’s pretty inspirational. Friends sang Happy Birthday to me in different languages. Some left beautiful pictures for me and others left me messages to make me smile. You all really made my day special. Thank you so much for that.

Rather than wearing purple for World Lupus Day this year, I chose to honor my international friends by wearing Orange, the international color of Lupus Awareness. They are the ones who have helped me through this nasty flare over the past few months. I did put some orange and purple hair extensions in my hair too because I didn’t forget about the Lupus patients here in the US as well. They deserve recognition too. They were there for me in my time of need. Last year, I wore purple... This year was orange. Perhaps maybe I will alternate the colors each year. Maybe as each year passes, I will get better at color coordinating BOTH colors together somehow.

While I can only hope that this Lupus flare comes to a close in the near future. Maybe it will, maybe it wont - but its wonderful to know that I have such an amazing group of online friends from around the world who will help me get through it. Thank you so much for all that you do for me from the bottom of my heart. Love you guys !

Kristel ~

Trash Talk by Johnny Trash - Easter Hospital Tales

2011-06-06T05:39:00.000-07:00

Trash Talk

by Johnny Trash ©
Warning: Some language may offend!
Easter Hospital Tales

First Published in The Lupus Magazine by Dirty Dog Media + Publishing

Greetings earthling human types and all you others : )

So yeesssss… Yet again on April 20th I was admitted to Ward 2 of Chapel Allerton Hospital (Aren’t you bored of these stories yet?) Haha …

My ‘home from home’ was a new four- bed ward which in actual fact, was really fucking good! It had a door on the end of the ward where I could cut through the day room on my 2am fag jaunts, thus avoiding the nurse’s station… Sneaky plan!

My room mates for the week – two girls and Val, a 70 something spirited old lady. On first meeting her, I knew I had met my match. Her first words to me were “Do you smoke?” before she went on to say, “Fuck, piss and bitch” in the same sentence!

The girl next to me had a supply of ‘Yorkshire Tea bags’ which meant avoiding the NHS crappy cheap ‘turn your tea grey’ ones. So yep… All settled in and with some ace room mates to keep me entertained, I was more than happy. Well, as happy as one can be stuck in a hospital ward for a week.

On the second day however, I met ‘Nurse Cunty Troglodyte’ as I had nicknamed her. On my way out with a book and fag to enjoy in the Easter sun, she stopped me and said, “You can’t leave the ward. It’s not allowed.”

I said, “I think I can fucking do as I like” and went on my merry way for a roll up and to read Jonathan Livingston Seagull in the hospital garden. She made my life hell after that. She was very gruff, almost manly in nature and swore profusely at poor Val making her really upset on many occasions. She also moaned about every patient in earshot upsetting many more on the other wards – fucking bitch!

Ah… but revenge was oh sooooooo sweet. I had the remote control on my bed when ‘Nurse Cunty Troglodyte’ came in looking for it, whinging that they always went missing. I didn’t want to miss this chance. Quickly I hid it in my wardrobe and said, “Oh I think the girl who has just been discharged had it on her bed this morning.”

Holy fuck she hit the roof! Shouting and swearing that she’d have to go and look through all the dirty (and soiled - teehee) laundry bags until she found it. She came back over an hour later really, really sweaty, flustered and seething. I have never seen anyone so angry. She had the look of the deranged Annie Wilkes from the film Misery.

I said, “Oops my mistake, I had it on my bed. I’m ever so sorry.”

(Cue sweet smile!)

Pahahahahahahaha!

Val was a fucking star! I loved her. My elderly foul mouthed smoking buddy. She constantly made me almost pee my pants laughing. Especially the night she crashed her motability scooter into the table on the ward and shouted, “OOOOOOHHHHH FOOOOOOOOOOK.”

I really almost did have to change my pants! She also had a habit of ‘popping down the road to the shop for fags and a calippo. She’d do a round of the wards collecting orders for fags and then she’d zoom off to the shop in her nightie!

Over the Easter weekend, everyone had been sent home leaving seven of us in the whole hospital. We’d all meet up for a fag and a natter in the sun. One afternoon I was sitting on the bench when I got a waft of weed. The following day I followed the smell and found a lad in a wheelchair having a ‘medicinal’ joint. Bless him, though he shared his ‘medicine’ and we had a bench party! What a picture! Me on my drug pump, Val in her nightie sat on her motability scooter and the rest in pyjamas and slippers sitting in wheelchairs. It was always like a fucking convoy when we all made our way back onto the various wards. Much to the disgrace of ‘Nurse Cunty Troglodyte’ who had started to panic when she couldn’t find any patients on the wards.

The evening after the ‘bench party’ the night shift had just come on when I spotted ‘Nurse retard’ Y’know the one who upon forcing my canula back in my arm gave me blood clots and blood poisoning? I thought to myself, “Don’t fucking even come near me.”

She was a dopey bitch. It took her about twenty minutes one day to make a cup of tea for Val cause she couldn’t remember black tea and two sugars. She constantly gave me the wrong tablets (damn good job I always count and check them) and one evening when my drug pump alarm went off, she couldn’t work out what to do. It kept coming up with ‘KVO’ on the display panel. I said to her, “Doesn’t that mean keep vein open, and if so, doesn’t it mean my vein is occluded?”
I felt like adding, “You know… Like last time when you gave me fucking blood clots?”

Anyway, off she went in a fluster. I overheard her say to a fellow nurse, “Does KVO mean keep vein open?” Well duuuuuuuuuuuuuuuuuuh. And so she came back and said, “Yes you were right. We need to change the canular to the other arm. Would you like me to do it, or shall I get a doctor?”

Hmmm, now which did I choose?

So yep, that was my stay. Must admit it wasn’t too bad, as we had amazing weather over Easter and I spent a lot of time with my drug pump (carefully removed from the stand) lying in the grass and reading. Food was shit as per though, but I’ve become accustomed to jacket potatoes and salad now!

Be good now!
Naaah… actually don’t : )
JT xx

Choices by Debra Freeman Highberger

2011-06-06T05:31:00.000-07:00

Choices

By Debra Freeman Highberger ©

First Published by The Lupus Magazine by Dirty Dog Media + Publishing

What comes to mind when you think of the word choices? Perhaps it’s a meal or a partner or a job. For me it means choosing to live. Others will only think of the word choices when they no longer have any. I have never felt I do not have a choice. It is this stubborn pigheadedness that has taught me to battle the wolf.

For the lupus patient our bodies no longer have rules. Our world inside us is in chaos. Armies of our immune system are fighting wars without orders; while our bodies lay back and except it. It creates an environment where the meek rarely survive. Although I know the day will at some time come when I am too tired to fight anymore and the wolf will inevitably win. But until that day comes I am my own warrior. We can fight back to some extent. We actually do have choices in the ridged process of keeping ourselves alive. First and foremost we choose the right doctors that understand our needs. We also have choices of medications (not many but some). And then there is a lifestyle we must choose from. Do I still work? What happens if I exercise? Will I hurt myself?

The bombardment of information that hits us from all sides is often overwhelming. Sometimes this onslaught of advice is from good intentioned individuals and yet other times from people wanting to take advantage. So how does the lupus patient sort through all these things that are hitting them all at once and take charge?

The answer is easy really. Just take the reins… Become your own advocate. Set the rules and govern your own life. There may be a bit of resistance on the part of the people around you. But if you are practical to your own standards and stick to your principles it should prove to be a much more fulfilled life with purpose and excitement, instead of someone waiting for the wolf to dig the hole. It was this attitude that brought me on a journey that took me half way around the world.

When the wolf knocked at my door five years ago… I unintentionally opened it. And found standing before me a master of disguises and symptoms. An uncontrollable beast that was sure to surprise me at every turn. So how does one tame this beast? Well for me it reminded me of the monster in the closet when I was a child. My mother said to me when I was a frightened little girl, “Stand up to that monster, and tell him you are not playing. Then turn your back on him and ignore him.” That’s exactly what I did when I decided to fly from Boston, Massachusetts in the USA to Brisbane, Australia. I lost my mother to breast cancer when I was in my 20s and although she has never seen me sick, she is often with me when I need her most.

Several years ago through this magazine and facebook I met an incredible group of women. They all had lupus and like me they were just trying to reach out to someone who understood what it means to have a chronic illness. I became real close with many of them. We laughed together, cried together and mourned the loss of others who finally laid down their swords to the wolf. Through solidarity we learn to cope. One particular woman Annie Taylor was always there for me. We mostly talked about life and we sometimes compared new symptoms when they would arise, but we rarely complained to each other about the situation lupus has put us in. In that way we were good for each other. We were women first and lupus patients second. We watched out for each other making sure the other was ok and asked each other about results to the latest tests. In the course of this developing friendship we found a common bond in tracking down individuals that were trying to take advantage of sick woman. Together with a small group of other women we would expose them for who they were. Many people began to become dependent on our crusade and it was an empowerment that not only set them free but gave us strength as well.

Then the most amazing thing happened to me about six months ago. I was contacted by a woman who claimed she was my cousin. She not only was my cousin, but lived in Australia as well. She was a mere two hours away from Annie. Her name is Sonya. Her grandfather and my grandfather had been brothers. Through circumstances that were out of his control her father had been separated from my side of the family. His name is Jim. We never knew that each other existed. Sonya told her boyfriend Shane that as a gift to her father she wanted to find his family and that is how Shane found me. The first day we made contact on facebook Sonya and I hit it off wonderfully. Despite the time difference we chatted on line that first day for five hours. At the end of this conversation she said in a slow and simple type…”Debra, my father has lupus.” I stood there looking at the letters on my chat screen. I didn’t know how to respond. I until this point could not find my genetic link to this disease. And of course neither could he. Half way across the world a tear rolled down my cheek. I suddenly felt for certain that answering the door to the wolf was not in fact anything I did, but was something that was destined to be. I had never met Jim before. But our bodies knew. Deep down in the DNA markers that claim us; Jim and I was a match: a lupus match.

Over a short period of time, Sonya and I became close. We talked every day sometimes twice a day. I introduced her to Annie Taylor and told her about the different lupus organizations in Australia. I told her that I wanted to go there and see her,Jim, Annie and Geoff Thomas (the Editor of this magazine). I said I wanted to go to the Lupus Association Queensland’s annual High Tea and introduce everyone to my uncle Jim. Sonya was the one who made me believe it was possible. And then a friend I went to high school with said out of the blue to me not knowing I had these conversations…”Debra you need to go to Australia.”

That was it…for me it was a sign. But where was I going to get the money for round trip tickets to Australia. The event was less than a month away. The next morning Sonya said to me, ”Debra this is meant to be. You have to have some way you can get yourself here.”

And then it dawned on me. My friend Tom had asked me about a year ago to do a portrait of his girlfriend Alex. I know if I were to ask him he would pay me now so that I could pay for part of the ticket. And when I get back I will do the painting. He already had many paintings of mine he knew I was good for it. When I sent him the email I got a reply back in less than an hour …it simply said, “You deserve this…I sent you a check for the full ticket…enjoy, Tom.”

My aunt Tish was there when that happened. She was intrigued by this whole chain of events. Although she didn’t recall Jim, she did recall the stories that he existed. Tish then became my advocate to make sure I had what I needed to take this incredible trip, and to do it safely.

Everyone around me thought I was crazy. Especially since I insisted I go alone… In some ways it was “my walkabout” I had to prove to myself and the wolf that I had a choice. My husband was supportive right from the start. After knowing me for over 30 years he knew there was little he could do to stop me. My daughter on the other hand was very hesitant. At the age of 19 when the wolf knocked at our door looking for her mother she found herself thrown into an early adulthood. Now five years later she feels she is the parent. It is her own personal way of taking charge of this beast. So I often let her take over, but not this time. This adventure was going to be mine. People’s reactions to this trip were often filled with surprised and shocking faces. Many came right out and said I don’t think you should go. What if you collapse just during the journey? You have been hospitalized four times in the past years for heart related issues. What if that happens over the Pacific Ocean where there are no emergency rooms to attend to you? My response was simple and very honest…”Then it was meant to be.” My doctor was an interesting reaction. In an email he wrote “GREAT! Good for you!” It was the most reassuring response I had received so far.

The flight was difficult I’ll admit. For a 22 hour plane ride my biggest fear was DVT (deep vein thrombosis; a blood clotting disorder that can cause a heart attack, stroke and even death). So I naturally spoke to my doctor ahead of time and he advised me what to do. I had been on aspirin therapy already so he wanted me to wear the proper socks, do the exercises on the plane, and walk every 1-2 hours, which I did. I was very prepared for all the physical aspects and limitations I would have. What I didn’t expect was the psychological toll it would have on me.

At midnight after a six hour flight, where I had been doing all that was suppose to in the form of exercise and hydration from Boston to Los Angeles, I found myself alone and exhausted. With no one to help me with my bags I was walked three blocks through Lax to get to the international terminal. The weather in Los Angeles hit me like an oven door opening. The fatigue of having traveled for that many hours was wearing on me. I could hear the wolf shuffling behind me laughing in my ear…”You thought you could ignore me… to outsmart me …well you didn’t …I will always be close behind you!” I could feel his hot breath trickling sweat down the back of my neck. I wanted to cry. I didn’t have that luxury. I knew I couldn’t waist time or I would miss my connecting flight. I had to press on.

What I was feeling in my body was equally scary. My heart was pounding and skipping beats. I’d been hydrating myself constantly so I knew I had enough fluid, but with the sweat now poring off me I was no longer sure. Maybe it was anxiety. Something I have not had issues with before. Moisture was streaming down around my face from under my wig. The sunscreen was trickling down as well and stinging my eyes. Every joint in my body ached. And it also didn’t help that people were plowing through me nearly knocking me down in their own haste to grab a connecting flight. Then it struck me…My mother’s words began whispering in my other ear...as she pushed the wolf off me she said, “Debra tell him you don’t want to play …and then ignore him.”

My heart began to be filled with strength. There was a determination in my step that hadn’t been there. I was using the adrenaline that was pumping through my veins as something to help me and not something to be afraid of. When I arrived at terminal four at the international section of the airport I was hot and tired but also angry and unwavering. When I walked into the waiting area I was hit by another obstacle. There were no seats and the place was packed. Here I was all disheveled walking with a cane and the flare on my face turning a lovely shade of purple. It was my anger that gave me the courage to go up to a young man in his 20s and insist he let me have the seat that was occupying his luggage. I must have looked like a crazy person because he took one look at me and immediately obeyed.

When I boarded the plane bound for Brisbane I was so worked up. I knew this was an over tiredness that I had to get a handle on. I couldn’t allow this to get a hold of me. With a fourteen hour flight ahead of me I needed to calm the skips that were pounding my chest. I grabbed my water bottle and smiled consciously at my mother who now decided to sit next to me. I forced myself to drink and ate a protein bar I had in my purse. I then took a pillow that was on my seat and tried my best to ignore all the things around me and sleep. I must have looked a train wreck because the man next to me handed me his pillow and said, “Here, it might be easier with two.” There were three screaming babies under the age of two all around me. Every time I started to drop off to sleep my body would jump awake with a start at their outburst. At one point I looked up to see the wolf leaning up against the galley wall just past the curtain. He was smiling and laughing at me…he said, “If you need to leave and abort this plane you better do it now.”

My mother whispered in my ear “Just close your eyes Debra, all you need is sleep.” The pain in my joints also played another important role in this mission. Every 1-2 hours my hips hurt so bad it forced me to get up and walk. On the first stretch of the walk I would see the wolf down at the end sitting in a seat and reading a magazine. He glanced up at me with an evil look. I would walk past him and turn to head back… at the other end was Mom waiting for me at my own seat. She had a look of pride on her face. It was a calming feeling knowing she was with me. I would then plop back down and sleep another 1-2 hours. My mother appeared again at dinner time. This time she took over the body of the man sitting next to me. He touched my shoulder gently to waken me and said I think you should eat something. Mind you, he knew nothing of my condition we had not spoken other than him giving me the pillow (which I am now convinced were also my mother’s doing). He could see by my face that I was in a bad way and out of the goodness of his heart he kept an eye on me. I was not hungry and was so tired that had he not waken me I would have slept through it; an act that would have resulted in a very bad outcome.

I arrived in Brisbane wrinkled and disheveled. But my journey was not yet over , I still had to get myself through customs and security. After a half hour of waiting in those lines I walked through the glass door and was met by Sonya, Shane and Annie. I was so happy I threw my arms around them and Annie handed me a cup of coffee. I wanted to cry with the feeling of pride and accomplishment that was racing through my body. I wanted to tell them what this actually meant to me. The difficulty I had and how I got through it. Instead all I said was…”I did it…all by myself.” They laughed and hugged me. Looking across the room while I was still in their embrace I saw a woman smiling over at us she nodded in my direction as she opened the door and left … it was my mother. Thank you Mom…I couldn’t have done it without you.

A Lupie Guide to Brain Fog by Kimberly Lehanka - Una guía para Lupis : Cerebro Nublado

2011-06-06T05:23:00.000-07:00

Lupie Guide to: Brain Fog

Don't leave home without it!

No seriously --- because if you have this guide you probably have brain fog and won't remember!

by Kimberly Lehanka ©

First published in The Lupus Magazine/La Revista de Lupus by Dirty Dog Media + Publishing

Tip 1: Post it notes!

Write it down! I cannot emphasize this enough. If your brain fog is really at its worst, make a post it note that reminds you to write things down so that you will not forget. It may sound tedious at times but it can be a real life savor, especially when it comes to little chores and tasks you wish to accomplish during the day, from a simple phone call you wish to place, to switching the laundry.

A bonus: They come in all sorts of shapes, colors, sizes etc… So find some fun ones... Maybe show some support and awareness for your chronic illness. If you’re a Lupie, rock some purple and orange awareness post its (or if you’re like me, and are obsessed with neon colors - they make hot pink ones!)

Tip 2: Get a planner/agenda book

Again write it down! This is so crucial in remembering little tasks and a planner has been my savior when it comes to managing and trying to remember all of my various doctor appointments, tests, scans, blood work, etc... I keep my planner in my purse at all times and whenever I am making an appointment I not only take the appointment card from my wallet and put it on the fridge when I return home, but I also write it directly in my planner before I even leave the office.

Also, you mind find it helpful to put a reminder in your cellular phone - many phones now have calendars in them that allow you to schedule for an alarm to go off how ever many minutes/hours/days prior to your event that you have entered. Technology is most certainly our friend these days!

Tip 3: Put things in the same place habitually

This is a simple tried and true strategy that has been going on almost sub-consciously in many households for decades... Simply said: Keep your things in the same place. Hang your keys on the same hook, put your slippers on the same side of your bed in the same location, etc. and you get the picture.

In order to make life easier for you, don't work against yourself and hide things by placing them down somewhere you usually wouldn't. It will save you a lot of frustration and strife down the road when you cannot find that particular item. In my home, I keep my keys on the same hook everyday and never have to worry where they are, however if for some reason I do not place them there, it turns into a half day adventure trying to find them.

Tip 4: Get a pill case

Now if any of you are like me, you take on average 28 pills daily. Yes 28. That's right. Everyone who is chronically ill is thinking that sounds about right, while anyone who is not ill is thinking "My God!" -- Welcome to the life of a chronically ill individual.

Well, in order to remember when to take all of these pills and to ensure I do not forget any, I use a pill case of epic proportions. Let's just say it's the Bentley of pill cases and serves my entire daily drug taking needs. While I still have to remember to take each set of pills around the same time each day, I usually do not forget a pill when it is organized in my pill case (The only down side, Sunday nights are "refill the pill case" nights which has now turned into a 30 minute production at a minimum, and it is a very stressful and frustrating 30 minutes trying to figure out what I take when.)

You would think I would have it down, but it seems every time I am getting into a routine, this pill's dose is cut, while this one's being increased. And now, before you know it, you have three new medications that need to be taken twice daily, cannot be taking simultaneously with any other medications and need to be taken two hours after eating and at least an hour before...

You get the picture!

Kimberly ~
Kimberly's Blog: CHRONICLYsILLy

......................................

Una guía para Lupis : Cerebro Nublado

Por Kimberly Lehanka©

No salgas de casa sin ella!

--- No, en serio, porque si usted tiene esta guía es probable que tenga dificultades para pensar y se le olvide!

Consejo 1: pegue notitas!

Escríbelo! No puedo enfatizar esto lo suficiente. Si la niebla del cerebro realmente está en su peor momento, pegue notas que le recuerde que debe escribir las cosas para que no se olvide. Puede sonar aburrido, pero a veces puede salvarle la vida, especialmente cuando se trata de pequeñas tareas y las tareas que desea llevar a cabo durante el día, desde una simple llamada de teléfono que desee realizar, a cambiar la ropa de la lavadora.

Un bono: Vienen en todo tipo de formas, colores, tamaños, etc ... Así que encuentre unos divertidos ... Tal vez mostrar el resultado de algún tipo de apoyo y conciencia de su enfermedad crónica. Si usted es un Lupis, utilice papelitos morados y naranjas de concientización y escriba su mensaje.

Consejo 2: Obtener un planificador / libro de agenda

Una vez más, escribir! Esto es tan crucial en el recuerdo de pequeñas tareas y una agenda ha sido mi salvador cuando se trata de gestionar y tratar de recordar todas mis citas con diversos médicos, ensayos, examenes, análisis de sangre, etc .. Mantengo mi agenda en mi cartera en cada momento y cada vez que estoy haciendo una cita no sólo tengo la tarjeta de citas de mi bolsillo y lo pongo en la nevera cuando vuelvo a casa, pero yo también escribo directamente en mi agenda antes de salir de la oficina.

Además, puede que le resulte útil poner un recordatorio en su teléfono móvil - muchos teléfonos ahora tienen calendarios en los que le permiten programar una alarma para que suene como siempre muchos minutos / horas / días antes del evento que ha introducido . La tecnología es sin duda es nuestra amiga en estos días!

Consejo 3: Ponga las cosas en el mismo lugar habitual

Se trata de una simple estrategia probada y verdadera que ha estado sucediendo casi de manera inconsciente en muchos hogares durante décadas... Simplemente digo: Mantenga las cosas en el mismo lugar. Colgar las llaves en el mismo gancho, puso sus zapatillas en el mismo lado de su cama en la misma ubicación, etc., y te haces una idea.

Con el fin de hacer la vida más fácil para usted, no trabaje en contra de sí mismo y no oculte las cosas en algún lugar por lo general no acostumbra. Esto le ahorrará una gran cantidad de frustración y conflictos en el futuro cuando usted no puede encontrar ese elemento en particular. En mi casa, pongo mis llaves en el mismo gancho de todos los días y nunca tiene que preocuparse de dónde están, sin embargo, si por alguna razón decide no ponerlos allí, se convierte en una aventura de medio día tratando de encontrarlos.

Consejo 4: Obtenga una caja para píldoras

Ahora bien, si alguno de ustedes son como yo, se toma en promedio de 28 pastillas diarias. Sí 28. Eso es correcto. Todo el que tiene una enfermedad crónica ha de pensar que si suena bastante bien, mientras que alguien que no está enfermo está pensando "¡Dios mío!" - Bienvenido a la vida de una persona con enfermedades crónicas.

Bueno, para recordar cuándo tomar todas estas pastillas y para garantizar que no me olvide de alguna, yo uso una caja de píldoras de proporciones épicas. Si bien todavía tiene que acordarse de tomar cada grupo de pastillas a la misma hora cada día, por lo general no me olvido de una pastilla cuando organizo mi caja de píldoras (El único aspecto negativo, domingos por la noche son "volver a llenar la caja de píldoras" noches que ahora se han convertido en una producción de 30 minutos como mínimo, y es muy estresante y frustrante 30 minutos tratando de averiguar lo que tomar y cuando.)

Se podría pensar que ya me las se todas, pero parece que cada vez que estoy entrando en una rutina, la dosis de una píldora baja, mientras que éste otra va aumentando. Y ahora, antes de que usted lo sepa, usted tiene tres nuevos medicamentos que deben tomarse dos veces al día, no se pueden tomar simultáneamente con otros medicamentos y deben tomarse dos horas después de comer y por lo menos una hora antes del ...

Ya tienes idea!

Smell the Roses by by Tiffany-Marie Peterson

2011-06-06T05:10:00.000-07:00

Smell the Roses

by Tiffany-Marie Peterson ©

First Published in The Lupus Magazine by Dirty Dog Media + Publishing

Life can be filled with gleeful surprises or bitter tasting challenges. It all depends on which box of chocolates you've been dealt with and whether or not you've been whacked with a lactose intolerant stick therefore unable to enjoy them!

I never imagined my life would be forever changed until the morning I opened my eyes without the ability to lift my head off the bed. Unable to stretch an arm or move a leg. Every desperate attempt to move a limb resulting in earth-shattering pain.

It's been exactly one year, three months, and 12 days since I was diagnosed with Systemic Lupus Erythematosus.

Even though I am blessed to say I can stand alone on my own two feet once more; it seems like just yesterday I had to wait on my mother to clothe, feed, and bathe me. Never again will I take for granted the simple joys that come with living!

This is why I dedicate my steps each year towards "Walking for the Cure" with different lupus non-profit organizations and together we raise funds, awareness, and support for those who are living with lupus. I may not have been gifted with the knowledge to investigate how B and T cells work but I was given legs which, thanks to prednisone, are functionable once again and as long as they work I'll use them in the fight against lupus!

What I love best about "Walking for the Cure" is how it brings all different kinds of people together all striving towards the same goal: A lupus cure!

Whether it's a fellow lupus brother/sister, a friend or family member, or someone whos life has been touched by a patient. Regardless of age, sex, race, or creed we are all on the same team.

So remember to stop and "smell the roses" and cherish the blessings we are gifted with each day.

Rolling with the Changes by Patty Gaetz

2011-06-06T05:03:00.000-07:00

Rolling with the Changes

by Patty Gaetz ©

First published in The Lupus Magazine by Dirty Dog Media + Publishing

Change is good. Change is best when you’re ready for it, but sometimes change is necessary.

My life has changed in many ways since lupus moved in. My routines and my limits have changed, but my expectations are higher now than ever before.

I find that most days I have to get up earlier and stay up later to accomplish everything I need to do and I don’t always get it done. I used to roll through the day, multi-tasking and juggling with the best of them, but since lupus moved in I’ve had to choose which activities are most important and leave the rest behind. Lately, I often choose work over leisure and resting over spending time with family and friends.

Change is scary. I live day to day, flare to flare. Of course I set goals and make plans, but I always have a backup plan. Lupus is unpredictable. I’ve come to accept that no matter how independent I am today and no matter how much I take care of myself, lupus can affect that and I may not be an independent person one day.

Change has also opened new doors and led me to new successes. I started a new career in February and am happily settling into a new role. I’ve met people and made friends and connections with people that I otherwise would never had crossed paths with. I’ve moved past the anger that comes with inoperable change. Fear of the unknown is always looming but I’ll roll with the changes.

Patty Gaetz

* Also, the Lupus Foundation of Minnesota is planning our first annual Walk For Lupus in Duluth, MN in September, 2011. This location is a great addition to our Walk For Lupus events in Rochester and the Twin Cities. Watch The Lupus Magazine for more details!

Mothering with Lupus by Elisa Lynee

2011-06-06T04:57:00.000-07:00

Butterfly Blessings

by Elisa Lynee
Mothering with Lupus

First Published in The Lupus Magazine by Dirty Dog Media + Publishing

It was Mother’s Day last month in the US. Happy Mother’s Day to all! This mother’s day was the first mother’s day that I have a name for this lovely illness that has wreaked havoc on my life for at least the past 13 years. This year my children have learned what Lupus is and how Lupus affects their mom. With that, they have learned from my illness what true empathy is and it has developed a rare, gorgeous diamond in their character that I could not have placed there if I specifically tried.

Per Wikopedia (which, I love to quote), empathy has many definitions, the definitions “cover a broad spectrum, ranging from feeling a concern for other people that creates a desire to help them, experiencing emotions that match another person's emotions,” to, “knowing what the other person is thinking or feeling.”

My little boys are 4 and 7 years old. Empathy isn’t something I would think they would normally pickup so strongly at this stage in their lives. Yet, since I’ve been able to give my illness a name, I’ve been able to give my illness a symbol, a color, and even a song that I wrote about it. I’ve never been secretive to my children about what Lupus is nor how I’m feeling on a daily basis. Because of this, they ask questions whenever they wish and they trust that I will answer them truthfully. Instead of creating worry in them, I feel that I’ve allowed them to embrace who I am, fully and completely. They have developed natural deep empathy for others and that is something I am proud to have helped them develop.

Lupus is so unique from many illnesses because although we always have it, we may actually feel fine at times. We may be able to run, dance, jump, etc., yet the next minute we may spike a fever and have to lie down on a couch. The daily and hourly unpredictability of the illness is hard for anyone to understand, let alone children. Yet, my boys have had no choice but to learn to understand the uncertainty. Originally, all I felt was guilt. Guilt that at times I’m not able to be the mom I dreamed of being; guilt that my children have more responsibilities than many children at their age; and, guilt that I’m not a “normal” mom for them. Only recently, did I realize that that my guilt was slowly slipping away because I’ve realized that through all of this, I’ve been raising my boys with true, utter, beautiful compassion… for myself, and for others.

I was shopping for sun hats recently and my 7 year old was helping me pick out the best hat to keep me safe from the sun. I was looking in the mirror wearing one of the hats and he said, “Mom.. my baseball practices are one hour. You can’t get that hat because you have Lupus and there are some holes in it that can let the sun through.”

He was RIGHT! The hat was a loose weave and the sun could penetrate some of the spots in the weaving. I couldn’t believe that at 7 years old, he was that smart and that compassionate to be able to really help me in this important decision about how to keep me as healthy as possible. I kissed him, thanked him and told him he was my angel. Well… seeing this, the little 4 year old pipes in with his own opinions and picks up a few other hats that he says I can wear with Lupus. Really… they were taking care of me… thinking of me, who I am with this illness and not as the illness as a burden, but again, just as part of me.

As mother’s we all have guilt at times about the way we can or cannot parent. But, this past year has shown me that there are blessings inside this crappy illness even in the way of parenting. Both my boys LOVE to make their own sandwiches for lunch. I used to feel bad at times when I was too sick to stand at the counter and put together a cheese sandwich for them. So, as they had to help me and with that, they learned to do it themselves.

That was heart breaking for me. I felt like I was failing them in some way, not being able to make them a simple sandwich by myself. Yet, now I see how much they love the responsibility because they even want to make ME sandwiches now, whenever they make their own. When I’m well, I always offer to make their lunch, yet often they would rather do it themselves and also make me something in the process. I never would have guessed that something that made me feel so guilty actually made them feel so important.

I could go on and on with examples about where I’ve found the blessings in mothering with Lupus… but my article would never end. My boys still act like children making the most of their busy vivacious childhoods. They just have the empathy of older souls. I can’t imagine a better gift to be giving them. I’m already proud of the adults that I know they have the ability to be. I now know that my illness has not been taking away parts of their childhood; yet, instead it has been giving their little souls more to grow with on a daily basis.

Until next time, look around you to find your Butterfly Blessings. Whether they are within you or surrounding you, they are always there!

© Elisa Lynee, 2011

Mission Healthy Alpha by Shoyea - Gaye Grant

2011-06-06T04:46:00.000-07:00

Mission Healthy Alpha

by Shoyea-Gaye Grant

First published in The Lupus Magazine by Dirty Dog Media + Publishing

I have certain defining characteristics. From the list, I will draw on the ones given the highest prestige: I am a Christian, a lady, a Lupie, a daughter, a sister, a loved one, a friend and I am an Alpharian. This last title, and one I wear most proudly, comes from the fact that for all my life, a little place on South Camp Road in Kingston, Jamaica, called ALPHA, has been my second home. My source of education came firstly from Alpha Infant, then Alpha Primary, followed by the Convent of Mercy Academy “Alpha”, otherwise known as Alpha Academy. Thus, it has been written in stone: I am an Alpharian.

Alpha was founded by the Sisters of Mercy on May 1, 1880, and since then, has taken on the huge responsibility of not only offering education to the younger population, but also, that of converting little girls into young ladies. I am not just bragging and boating about this noble institution because I absolutely love and miss this place (well, not totally) but also because some of the products of this factory has seen it fit to extend their hands of kindness and do what Alpha taught them best: to give back.

The Florida chapter of the Alpha Alumni (Past Students’ Association), for two years now, has made the dream of an annual health fair, a welcomed reality: Mission Healthy “Alpha”. This was hosted on the Alpha Academy campus. The students and teachers were given the opportunity to check their blood pressure, blood sugar and cholesterol levels along with height, weight and sight. Additionally due to the fact the Alpha is single sex school (only females), students and staff were given “We Care Packs”, containing all the necessary items a female should always have, such as sanitary napkins, dental floss and deodorant, just to name a few.

The event was aimed at spreading health awareness in many different areas such as dental protection, balanced diet, healthy bones, acne, breast cancer and most surprisingly, Lupus. While a very pleasant one, it came as a surprise because Lupus awareness is not common in Jamaica. While organizations and individuals are trying, the level of ignorance as it relates to Lupus is quite alarming. In a country with such a high risk of getting Lupus and with so many affected, so many still do not have a clue what it is. If I had any doubts about that, this health fair wiped them all away.

I volunteered be the informant on Lupus and was thus stationed at the Lupus tent. Those two days will never be forgotten.

As the crowd of students left their classes, grade by grade, the area selected to host the health fair came alive with little ladies in their blue and white uniforms. As each group approached the Lupus tent, books were issued out and students and teachers were advised that it was important that those books be read. I then asked if they knew what Lupus was. Many said they had no clue. The few that did said it was “a skin disease” or “some form of cancer”. The most common response was “I have heard of it. I knew someone with it but they died.”

Even after explaining that the risk factor is particularly high because they are females, the majority is of African descent and they are in their childbearing years, Lupus was not of much interest to them. Even after informing them that many persons in Jamaica are affected, some were still apathetic and one girl even admitted that she did not care much to learn what it was. It was then that I had to do the Official Lupie Duty and do what I was previously terrified of doing. “Lupus is far-fetched idea… I have Lupus”. Response: Shocked expression… “You do?!... What did you say it was again?”

Telling a crowd of people (non-Lupies) that I have Lupus was not an easy task. The first time was the hardest, but every time that followed was a little easier than the one before. Maybe it was as a result of my being an Alpharian and being known by most of them or maybe it was because an issue that remained just a message in the wind was standing before them in reality, but after my confession, the level of interest rose dramatically. They began asking questions about treatment, if it can be cured and symptoms, even before I reached the point of explaining those to them. The questions even became more personal, in that I was asked how I cope, how I felt when I was diagnosed, my age at diagnosis and so on. I had no reservations and it was an absolute joy to respond.

“Rewarding” is too much of an understatement for the overwhelming feeling which follows spreading lupus awareness. However, my most memorable moments were those spent bonding with fellow Lupies. There was this particular lady who was waging a war on her body (Jqi). As a Lupie, one can see when another Lupie is not so well and internally fighting. This lady came to the point where she almost fainted but when offered a seat by a number of worried past Alparians, she took a couple of deep breaths, smiled and replied, “I’m fine”. I smiled too. I have done that a million times.

The Florida Chapter of the Alpha Alumni should be awarded for the wonderful way in which they have decided to give back to their alma mater. On the topic of giving back, many would focus solely on monetary contributions or those aimed at repairing the physical buildings. However, this way of giving back is one that has tremendous benefits and one that covers an extremely important but often ignored area: health awareness.

Alpha has been the source of my education but the most important lesson it has taught me is that giving back is the only way to ensure that someone else moves forward.

Shoyea-Gaye Grant ©
Jamaica,
West Indies.

Visit Shoyea-Gaye's 'Lupus Butterflies Jamaica'

The Lupus Foundation Jamaica

Voice mail: 1876-803-0082

Email: lupus_foundationja@yahoo.com

meet someone with lupus june 2011 - sabrina

2011-06-06T04:38:00.000-07:00

Meet Someone With Lupus

“A Funny Thing Happened To Me On The Way Back Home”
My Battle With Lupus
By Sabrina Nixon

First published in The Lupus Magazine by Dirty Dog Media + Publishing

Regardless of fatigue, I refused to let anything stop me. I have always been an ambitious woman, known to juggle two and three jobs at a time in addition to attending college credit classes. You can also throw in my single handedly raising two autistic sons, my youngest son being on the more severe spectrum level.

Add this to my years of partying, burning the candle at both ends, putting other’s needs (or wants) before mine, I find myself in an emergency room one hot summer afternoon diagnosed with Thrombotic Thrombocytepenic Purpura, otherwise known as TTP. This strange disorder caused a severe blood platelet deficiency that could have lead to my death without the help of God and blood and plasma transfusions.

I recall coming home from the grocery store when all of a sudden I was so weak that I could not move. I did not have a telephone at the time, so I had managed to make it to a neighbor’s apartment to use theirs to call 911. I tried to explain what was going on in my body to one of my sisters that was present with me at the time, but she could not make out what I was saying. Little did I know, I was suffering from a stroke in the process because of the decrease of oxygen in my brain. When I began to speak, I was making sense to myself, but to my sister and the emergency operator my speech was slurred. The ambulance did arrive and the only thing I remembered after that was being in the emergency room. I was not sure if I was dying or not, but I was not in any pain whatsoever. Actually, there was a calm about the situation. I did not have any fear about dying like most people who are at death’s door.

Prior to this, I had recently given my life to God, becoming a converted Christian, which probably explains the peace that I had. It must have been evident because when my father came to visit me in the hospital that evening he remarked, “If something happens, you’ll be okay”. I could not respond, but it comforted me to know that he was not hysterical. I also did not know at the time that my mother was admitted to the emergency room in the same hospital--no doubt from her reaction of finding out what had happened to me. This first episode of my medical drama happened in the summer of 1999. I have since then had two “flare-ups” until the doctors finally gave me a concrete answer to what was going on with me. In between that time, I was so bewildered because all of this was new to me. I did not understand the medical jargon that was going on between the doctors, but I was able to read their facial expressions that it was something serious. When I regained my faculties, I was told that I had TTP or Mixed Connective Tissue Disorder.

I had lost a lot of blood to the point that I had asked the rheumatologist “Do I have AIDS”? and the doctor responded, “No, if it were that, you would be dead already”. With that being a relief, he went on further to explain what was going on. He labeled my disorder as Mixed Connective Tissue Disorder at that time because so many different things were going on in my body. That is what happens when there is an autoimmune disorder, a disorder where your own cells are attacking healthy tissues. Presently there is not a cure and no one is for sure what actually causes it. All I know is that I had to endure numerous blood and plasma transfusions. My most recent “flare-up” occurred in the summer of 2005, which almost literally lead to my death. This was the worst time in my life regarding my illness.

This time I’m labeled as having Systemic Lupus Erythematosus, or SLE, which sounded more complicated than the TTP or the Mixed Connective Tissue Disorder. I did not realize that there are different forms of lupus, or that lupus can affect certain parts of the body such as the skin, blood, internal organs, muscles, and joints. This time I was affected by all categories. My skin was blotchy which the doctors called a “mask”, because that is how it looked. I lost my hair as well, maybe because of one of the chemo drugs I was given. Of course as usual, a lot of blood was lost and my muscles and joints could be compared to that of an extremely elderly person. This time I looked so bad that my mom refused any hospital visits, other than the ministers from our church. Besides, I was not communicable, as I had lost my memory and speech.

Today, I am still on a slew of medications but I am wiser on how to detect the symptoms to prevent a “flare-up”. I now realize I have to watch my stress level (which is a big contributor), and limit my time in direct sunlight (another contributor). Lupus can be a silent killer, because one may never know when “lightening” may strike. People may use the cliché of saying that they may “have an illness, but the illness does not have them”, which is a positive attitude for any disorder.

As true as one wants to make that statement, it also helps to be realistic in knowing your boundaries when it comes to controlling an incurable disorder. You do not want to be so “gung-ho” and yet forget about the important things that it takes to stay healthy. Lupus affects people in different ways, so there is really no foolproof way of preventing a “flare-up”.

As for me, my faith in God, diet, and moderate exercise and the ability to say “no” more often is just the beginning. Once I accomplish that, I have a feeling that I am going to be around for a very, very, long time.

Fatiga Crónica: Pereza o realdad? - Por Nancy Arocho

2011-06-06T04:29:00.000-07:00

Fatiga Crónica: Pereza o realdad?

Por Nancy Arocho

First Published in The Lupus Magazine/La Revista de Lupus by Dirty Dog Media + Publishing

En otra ocasión les hable sobre la duda que usualmente tenemos sobre si estamos deprimidos por tener lupus o será el lupus que nos causa la depresión. Buena pregunta para hacernos y entender nuestras emociones en nuestros momentos de tristeza y dolor. Este mes les hablo sobre otra pregunta que deberíamos hacernos para entender nuestro estado físico que a la vez es responsable de nuestro estado emocional. La pregunta es, me he vuelto perezoso o será la fatiga crónica en mi enfermedad? Para muchos antes de ser diagnosticados con lupus o cuando no tenemos algún brote hemos tenido suficiente fuerza y energía para funcionar y lograr nuestras metas con mayor facilidad. Luego, llega una etapa que nos cuesta movernos, nos pesa trabajar, hacer las cosas que hacíamos o que tal vez nunca tuvimos las fuerzas para hacer. Y por fuera nos vemos bien, no estamos sangrando ni en el hospital. La gente que nos rodea nos ven y nos dicen “pero tú no te ves enferma”, eres ben perezosa porque siempre dices que estas cansada” o “tu dolor ha de ser inteligente porque te quejas todo el día, llega visita y se te quita el dolor” (no se dan cuenta que te llenas de pastillas para el dolor para que los demás no te vean enferma). Entonces, comienzas a creerte todo lo que te dicen, “seré perezosa, vaga, floja?” y ahí comienza la frustración, la tristeza hasta la depresión.

Alguna gente me ha comentado que su familia más cercana les hace esas mismas críticas porque por fuera no se ven enfermos. Estas personas hasta estudian y trabajan, cosa que mucha gente sin enfermedades crónicas simplemente no les gusta hacer ninguna de estas, y aun así estas personas con lupus y/u otras enfermedades crónicas creen tener pereza y olvidan que su condición viene con un paquete de síntomas que incluyen fatiga crónica. Algunas otras personas, como yo, no podemos trabajar por nuestra condición. Aun así me he encontrado en esta situación. No fue hasta que me encontré con otros que sentían lo mismo y me d cuenta que yo no era perezosa (al menos no del todo, jejeje). Pero qué hacer para evitar o disminuir tanta fatiga? Todo lo contrario de lo que estamos haciendo ahora. No te frustres, relájate, descansa y si tienes dolor y no te gusta tomar tanta pastilla, aunque sea en alguna ocasión en que vayas a hacer alguna a actividad o trabajo (pues en mi caso, tomo tantas pastillas que prefiero no añadir mas a la lista y trato de no tomarlas s la voy a pasar en casa descansando. Y el dolor? Muchas comprenderán cuando les digo que se vuelve costumbre adaptarse e ignorarlo.) Evita las discusiones y sobre esforzarte, luego se pagan las consecuencias con dolor crónico en el cuerpo o con un posible brote. No me refiero que te tires a la cama y dejes de disfrutar la vida pero guarda las energías y procura suficiente descanso. Ríe, ve programas de comedia, disfruta de la familia, recargas tus pilas y tu cuerpo te lo agradecerá. Habla con otros sobre tu condición o al menos sobre lo que estas pasando. Como hemos dicho muchas veces, hay muchísimos grupos de apoyo en el internet y posiblemente en tu comunidad. A veces ayudando a otro, solo conversando te ayudas también a ti mismo. Recuerda que nos puedes hablar en nuestra pagina de facebook: Viviendo con lupus (enlace es el que sigue:)

Facebook-Viviendo-con-Lupus

Encontraras mensajes apoyo diariamente, preguntas y respuestas de personas como tu. Que esperas

Sera hasta la próxima,

Besitos, Nancy

Nancy Arocho ©
Delaware, EE.UU.
Nancy Arocho: tengo_lupus@live.com

El estrés, mi gran enemigo: Por Daniela Ayala

2011-06-06T04:20:00.000-07:00

El estrés, mi gran enemigo:

Por Daniela Ayala

First Published in The Lupus Magazine/La Revista de Lupus

Recientemente leyendo el libro de “Los pilares de la felicidad” de Bernabé Tierno, me sorprendió una imagen de su libro en donde se ve a un hombre agobiado, cabizbajo, agotado, enfermo... ¿sabéis qué le pasaba al hombre? ¡Estaba estresado!

Debido a dicho estrés, su ritmo cardíaco se aceleraba y sudaba muchísimo...

Nosotros tenemos que ser conscientes de esta imagen en nuestra cabeza, cuando estamos acelerados y estresados nuestro cuerpo lo siente, y nuestras fuerzas comienzan a flaquear. Todo esto puede traernos consecuencias terribles, como un brote de lupus.

El estrés debe evitarse y una de las mejores maneras para conseguir esto es SER POSITIVO. Ver la vida desde el otro lado, sonreír a los problemas y buscar soluciones.

Para ayudar a relajarnos, nada mejor como unos buenos ejercicios de respiración acompañados de una música suave. Regálate unos minutos al día para ti mism@.

Además, puedes salir a dar largos paseos, para así entrar en contacto con la naturaleza y olvidar todo aquello que te estresa, y ¿qué tal si das ese paseo con alguien que te escuche?, esto también es una excelente solución.

Otra forma estupenda para relajarse, la cuál yo adoro, es ir al balneario o spa, darse un baño relajante y un buen masaje. ¡Quedas como nuevo! Claro que... no basta con esto, debes ser POSITIVO y buscar soluciones.

Recuerda que el estrés no es para siempre, es algo temporal que está en tu mano el que se quede o se vaya. ¡Ánimo!

“El amor y el humor son los componentes fundamentales de una vida sana” Dr. Match Adams.

Un fuerte abrazo,

Daniela A. Ayala M.
lupusyamigos.blogspost.com

Facebook: Amigos Con Lupus

Toc, toc, toc, - ¿quién es?... - así sonaba aquello en mi cabeza una y otra vez, pero por más que yo preguntaba,- ¿quién es?-, allí nadie respondía...

Muchos días oía ese toc, toc en la puerta de mi cabeza, y no podía hallar una solución.

Intentaba abrir la puerta, pero no podía.

Cierto día, volví a escuchar el “toc, toc”, de pronto respiré hondo, me senté a meditar y empecé a oír... las ideas empezaron a fluir en mi mente y así, llegó a mi ser la idea de formar un blog que complementara lo ya existente. Un blog en el que todos los que quisieran pudiesen participar y colaborar en él. Integrando las noticias que encontremos, los avances médicos, las asociaciones que existen o se van formando, enlaces a webs de ayuda para personas con lupus, etc.

Así ha sido el nacimiento de Lupus y Amigos. Espero que todos lo visitéis y forméis parte de él. Es un proyecto que lleva años llamando a la puerta, y que por fin ahora, la abre para todos vosotros.

¡Un saludo!

Daniela A. Ayala M.
lupusyamigos.blogspot.com

Si quieres colaborar con nosotros en alguna sección sobre salud, nutrición, noticias, etc, contacta con nosotros en : amigosconlupus@gmail.com ¡GRACIAS!

Reconocimiento por Karin Lange - Testimonial desde Guatemala.

2011-06-06T04:01:00.000-07:00

Reconocimiento por Karin Lange - Testimonial desde Guatemala.

First published in The Lupus Magazine - La Revista de Lupus

Es característica del ser Humano, ser agradecido, caritativo, entregado, y esforzarse en tener un buen desempeño en lo que realiza, ya que está aunado a los valores que en su familia le han inculcado, así como el aprovechamiento en sus estudios, y ocupación profesional, o laboral .

Estas son una de las tantas características en las que me baso para poder escribir en la página del Facebook: Lupus Eritematoso Guatemala, en donde la idea de su creación fue, prestar apoyo psicológico, a su vez el ir informando que era el Lupus y educar tanto a quienes visitan la página, como a los familiares y amigos. Queriendo ser como una lluvia de ideas que va cayendo y a su vez se va transmitiendo de una forma interactuada por la línea del Internet o verbalmente.

Me involucre con THE LUPUS MAGAZINE, cuando Geoff Thomas, nos puso, por el Facebook que nos tenía una sorpresa. Y cuando esta se supo, que iban a tener páginas en español; para mí fue de mucha felicidad, ya que inmediatamente me comunique y pregunte si podría prestar mí apoyo escribiendo los Artículos-Testimoniales desde Guatemala, cómo la titule.

Inmediatamente Geoff me respondió que bienvenida, y así me inicie con esta gran familia, donde ya llevo 6° artículos escritos.

Hago toda esta referencia de introducción, porque en el mes de febrero 2011, publique en mí página UN RECONOCIMIENTO DEL “FARO DE LUZ”, a todas las páginas que estaban registradas en la mía, ya que me parecía que era muy del caso, iniciando un año nuevo 2011, se les debía de reconocer su esfuerzo, carisma, entrega, cariño, amor, y entrega en investigar y poner los diferentes temas: sobre qué es el Lupus?. Muy pocas y pocos, comprendieron el significado de ese Reconocimiento, y lo hice por que cada esfuerzo realizado por el ser humano: debe de gozar a su vez de un estímulo, y agradecimiento y motivación, para que se siga realizando, máxime en nuestra condición de enfermos crónicos catastróficos, como es el lupus Eritematoso Sistémico y sus otras variantes, dentro del Lupus. La Foto que copie fue la de un Faro en el mar, una toma bellísima, de un atardecer, con sus celajes, dorados, rosados, y lleno de luz, así visualizo yo nuestra lucha constante , debemos de ser guías de nuestros amigos en cada página, para que no decaigan, ni se depriman, y estén preparados e informados. El poder darles un rayo de luz de la esperanza a través de nuestro interés personal, individual, y ante todo, el poder manifestar la grandeza y misericordia de Dios, que no estamos solos, ni solas.

Reconocimiento al faro de luz: 28 DE febrero 2011

Entrega el presente RECONOCIMIENTO DEL FARO DE LUZ; a todas las páginas de LUPUS DEL MUNDO, por su constante apoyo, información, educación y lucha por nuestra Dignidad, para que EL LUPUS, sea reconocido como una enfermedad incapacitante. Que luchamos día a día, con nuestro dolor y vamos agotándonos lentamente, pero NO nos daremos por vencido. Yo les bendigo en el nombre de nuestra Madre Virgen María y nuestro Dios, que nos abre día a día la entereza y fuerza, para no desfallecer, por que Dios está con nosotros. Los Amo a cada uno y una de mis hermanos y hermanas en está lucha por la VIDA. Karin Lange. Gracias a mis amigas del alma, nos merecemos ser reconocidas por nuestro arduo esfuerzo.

En el mes de Abril, The Lupus Magazine, estuvo de aniversario, y nos dio un reconocimiento a través de un Video a todas sus escritoras.En lo personal lo agradezco mucho, así como las palabras del Editor Geoff Thomas, en la revista del mes de Abril, donde nos relata, como fue su interés por crear el blog, y llegara a difundirse por todo el mundo, un enlace de información, experiencias y testimonios muy enriquecedores para quienes padecemos de la enfermedad del Lupus. Ciertamente coincido con Geoff al decir que somos como sus hermanas, ya que así me siento yo, desde que le solicite a Geoff si podía colaborar con ellos escribiendo en las páginas en español, desde Guatemala.

Entre en una gran familia, en la que a pesar que no nos conocemos, nos interesamos, respetamos y somos solidarios con todos, no importando la creencia religiosa, ni la raza.

La única condiciendo y así lo entendimos todos es el ser positivos, es el dar esperanza, el informar de cada unas de las características del Lupus y sus diferentes etapas. Para prepararnos y saber que decirle a nuestros médicos especialistas, y poder ir comprendiendo el porque de los diferentes tratamientos.

El trascender, repercutir, difundir son todos sinónimos de la misma palabra, pero así me sentí, al recibir el reconocimiento de la revista, además que era totalmente aceptada en un medio, donde hay escritoras verdaderas, y uno es un aprendiz. Si un aprendiz con el corazón llenó de amor y entrega, donde sé desea que las palabras que uno escriba, le lleguen a muchos a ayudar en una parte de su vida. A poder salir adelante y no sentirse solo o aislado por la enfermedad que nos aqueja.

Gracias compañeros The Lupus Magazine, por permitir colaborar con los Artículos –Testimoniales desde Guatemala. Muchas veces no se puede cumplir con el compromiso de escribir mensualmente, debido a los altibajos de nuestra salud, y muchas veces: cómo a mí me ha pasado mí computadora ya es viejita y se descompone muy seguido.

Pero mi compromiso siempre esta presente, para poder brindar mí testimonio, y colaboración a The Lupus Magazine.

Aprovecho a su vez el felicitar a todas nuestras compañeras y compañeros de Lupus, porque desde nuestras trincheras, países y condiciones, escritas, televisivas, por radio, y otros medios el llegar a difundir el 10 de Mayo Día Mundial del Lupus.

Unas de las varias notas sobre el evento del Lupus, fue el siguiente a través de la página de Lupus Eritematoso Guatemala:

“ El Lupus es una enfermedad Multisistémica, que afecta a varios órganos de nuestro cuerpo. Tú puedes ayudar a marcar la diferencia: Informándote y Divulgando nuestra Lucha y Reconocimiento de esta enfermedad Incapacitante como es el Lupus.” 10 de Mayo Día Mundial del Lupus”. Necesitamos de muchas manos amigas, para lograr que nos reconozcan.”

Todas las que padecemos de Lupus, a nivel Nacional e Internacional, estamos Unidas en un solo clamor: El LUPUS es sinónimo de Vida, Lucha constante, y No de una Muerte Inminente. Es una enfermedad que no se contagia, lo único que se te puede contagiar es nuestro deseo de Vivir a plenitud. Pero necesitamos de su paciencia, cariño, respeto y mucho Amor, ya que sin ello, las crisis del Lupus se hacen más presentes y nos pueden agravar nuestra condición de enfermo. No seas indiferente, infórmate. El 10 de Mayo es el Día Mundial del Lupus.

Estamos a tres días, del 10 de Mayo Día Mundial del Lupus, ánimo, no podemos dejar que el reloj de la Vida nos venza, Luchemos por Vencer al Lupus.
Reciban todos un fraterno y cariñoso saludo.
Ecribió: Licda. Karin Lange.
RECONOCIMIENTO
sustantivo masculino
1 agradecimiento, gratitud.
«Publicar un beneficio es un acto de reconocimiento; querer a su bienhechor es el acto propio de la gratitud. El que se da prisa a pagar un servicio generoso que le hicieron con otro servicio, para quitarse el peso del reconocimiento, es un ingrato; y rebosa gratitud el que, no pagando su deuda, ni aun atreviéndose a desplegar sus labios sobre ello, acompaña a un bienhechor en sus placeres, ríe en sus gozos y llora en sus desdichas. El reconocimiento de lo que debe, paga; pero la gratitud no cuenta lo que da, porque siempre debe.»
Nicasio Álvarez de Cienfuegos

El término reconocimiento puede referirse a:
La acción de distinguir a una persona o cosa entre las demás como consecuencia de sus características y rasgos se la designa como reconocimiento. También sirve para expresar la gratitud que se experimenta como consecuencia de algún favor o beneficio

.Referencia: Diccionario de la Lengua Española.
Lupus Eritematoso Guatemala

Lupus from a parent/caretaker's perspective - by Kimberly Lehanka

2011-05-16T21:22:00.000-07:00

The Lupie Life by Kimberly Lehanka ©

First published in The Lupus Magazine

Lupus from a Parent’s/Caretaker’s perspective: How to manage and cope when you have a child that is chronically ill

Usually, for my column, “The Lupie Life,” I write about my own personal experiences living with Lupus, and how I manage my illness on a day-to-day basis… But what most people do not realize is that Lupus and any chronic illness for that matter, affects more than just the person who is diagnosed.

While my parents and I have always been very open with regards to my Lupus, I have never been quite sure just how they manage being a “caretaker” and was curious as to what Lupus is like, and looks like, to someone who loves and cares for someone’s who is chronically ill, especially their child.

My parents have always supported me, loved me unconditionally, and have given me every possible opportunity to reach my full potential... So I was intrigued to sit down with them (my “Momma-dukes” & “Poppa Bear”) and find out just how they coped with my initial diagnosis, how it impacted their day-to-day lives, and how they have learned to cope and manage being the caretaker for their child, when it seems as if it should be the other way around (the child taking care of the parents…)

Q: What was your initial reaction to my diagnosis in June 2009?

A: (Father) There was definitely a bit of shock, initially, which was followed up by a little relief because we had been dealing with it (these random symptoms) for over 3 years trying to figure out WHAT you had… Now we knew what it was, it has a label and name... But once the initial relief of finally having an answer dissipates, the reality of the situation and its’ potential severity and ramifications hit you.

Q: Did you know or had you heard of Lupus prior to my diagnosis?

A: (Mother/Father) Yes I had heard of it vaguely, and I (father) knew someone who had it through a friend (at a distance), but had never realized all it entailed, because I had not been touched personally by it, until your diagnosis.

Q: What did you do to educate yourself about Lupus?

A: (Father) “The Internet, thank god for the Internet!” The Internet is such a new resource for my generation and what a tremendous aid it was to help us understand and find out more about Lupus and what it entails. We also attended a seminar at NYU to learn more and hear what others who were living with the disease were able to manage and deal with their highly unique and individual case of Lupus, as no two cases are alike.

Q: What was your biggest concern/fear upon finding out and researching about Lupus?

A: (Father) Your future and the unknowns that come with an illness as illusive and mysterious as Lupus… Also, I (mother) recall your rheumatologist saying that he was going to give you some medication to help better your quality of life, and those words have stayed with me since that day, because it was not until your Lupus started to flare and you were dealing with some more serious complications of it that I realized what he meant by “quality of life.”

Q: What is it like to care and be considered a “caretaker” for your child?

A: (Father) It’s someone I love so it wouldn’t matter if they were older, younger a parent, child, sibling, wife, etc. You take care of the ones you love, I don’t consider it being a caretaker, It’s more of being a parent, and loving your child unconditionally and wanting what’s best for them.

Q: How, as a caretaker and parent of a daughter who is chronically ill, does Lupus affect your daily life, activities etc.?

A: (Father) It makes you manage your time better… You learn to work around appointments, reschedule your work schedule and you learn how to prioritize, health comes first, always. (Mother) Everything I do and every decision I make on a daily basis is made around what I need to do for you and what your needs are that day as they are ever changing, one of the many aspects of Lupus that make it such a hard disease to cope with.

Q: What strategies/how have you learned to manage and cope with Lupus that you would like to share with other parents and caretakers?

A: (Father) Patience, and trying to make your life more comfortable and get the best care possible for you now and down the road… I also recommend becoming friends with your local pharmacist (it will pay off!), and learn to take it one day at a time, while trying to keep a positive attitude.

Q: Has there been one moment you recall or has stuck with you, personally, with regards to dealing with Lupus from a mother/father’s perspective?

A: (Mother) When I had to watch the lady at the wig shop shave your hair, or what was left of it, when you lost it due to a bad flare this past September, it hit me very hard.

(Father) When your platelets dropped and I had to come to school to get you and bring you to the hematologist, I had seen the picture of it the morning before but was not prepared to see what it looked like and the severity of it in person. I also was unaware that a low platelet count could cause spontaneous bleeding and that lupus could cause a low platelet count.

Q: You both take/sit in on many of my appointments with both the Rheumatologist, and numerous other specialists… What has this offered you as far as gaining a better understanding about Lupus, and its treatments?

A: (Father) It brings more confusion, frustration and a lot of other emotions that you learn kind of come along with this “lupus” territory, but I find that it gives me better input into what kind of medical care exists for lupus patients, and as far as treatment is concerned it is difficult to see your child in pain and have trial and error treatments fail, time and time again, and doctors uncertain as to how to help. It’s hard to understand why they cannot help more, but you have to keep in mind that you are biased, because it is your child who is sick.

Q: What is your opinion on Lupus awareness and advocacy, and what is being done as far as Lupus-specific research?

A: (Father) I don’t think there’s enough advocacy and research whatsoever… It’s hard because it seems that there are these “diseases de jour” that celebrities back and donate to that become “trendy,” and lupus is not one of those glamorous diseases, and because of this it seems to take a back burner. I’d like to see more advocacy and awareness for it, and a better future and quality of life for those living with lupus and their families.

Q: Do you find other people have a hard time understanding what it is like to be a caretaker for someone who is chronically ill/Do you feel as if they do not fully comprehend what it entails?

A: (Father/Mother) Yes, but I think because people do not fully understand lupus, they cannot possibly understand how and what it truly entails, and they do not understand how its severity and intensity vary so greatly in each and every person. It’s especially difficult when people downplay the disease, and think it’s “not so bad,” because like any disease, some people have mild forms of it, some moderate and others severe, and I think it’s important the general public gains a better understanding as to how disabling Lupus can truly be.

Q: How has your perspective on life changed or been altered because of Lupus/how is your life different now than it was before I was diagnosed?

A: (Father/Mother) The focus has changed from us as a whole, more to you and your health, both short term and daily, to long term care. And our game plan for the future (which can be difficult because there are so many unknowns)…. Also, we do not take things for granted and have learned to value health, and that anyone with a healthy child should know how truly blessed they are.

Q; what do you see(or want to see) for the future of Lupus/advocacy and research:

A: (Father) I would like to see it brought to the forefront, to be on the same level as breast cancer or Lance Armstrong’s live strong campaign, and to bring not only more funding for research to find better and more specific treatments, but also, to make it more well known to the general public. I hope that there is more done in the future, so that Lupus patients can be offered a better quality of life.

...................

Reflecting on the interview: I took a lot away from this interview. I have always had a great relationship with my family and my parents, and they have been nothing but supportive since my diagnosis.

However, I had never actually sat down and had a heart to heart, if you will, about such personal issues and feelings with regards to Lupus, and how it impacts them on an every day basis. Usually when we sit down to have a “serious lupus talk” it is regarding an upcoming appointment or what our next move is in forming a game plan to get me the best care possible.

Initially, upon sitting down and preparing my interview questions, I was hoping to offer others that are caretakers and parents of those who are chronically ill, a resource to help them relate and possibly offer them some coping strategies and ways they can further support and understand their loved one(s) who are battling this debilitating disease day in and day out.

But I think I have taken more away from our little Lupus Pow-wow, as I gained such a deeper understanding of what being a caretaker truly entails and to hear them speak of their fears, concerns and opinions on Lupus, and how it affects their daily lives, and ultimately, what lupus looks like from the eyes of a caretaker/parent.

Kimberly ~

Kimberly's Blog: CHRONICLYsILLy

Teen Lupus introduces exPEERiences - by Hannah Tubbs

2011-05-16T21:14:00.001-07:00

Welcome to 'Teen Lupus - The Prose and Cons'

This month 'Teen Lupus' Editor Hannah looks at A Different Kind of Awareness and we introduce, exPEERiences - a column where teens share their lupus stories with us. Below we meet 18 year old Kyrstin from New Mexico...

First published in The Lupus Magazine

A Different Kind of Awareness…

*Forewarning: This month’s article is going to be a little different. I promise I’ll get back into the Prose & Cons theme next month, honest!

As I am sure most of you already know, the month of May is widely known as Lupus Awareness Month. Each year, countless numbers of people try to educate the world about this most mysterious disease. More mysterious to some than others, we are all pretty darn familiar with it. Every year the statistics rise. More people are diagnosed; more people are educated. I am proud to say that my fellow writers here at The Lupus Magazine have and will undoubtedly continue to contribute to that awareness. So, frankly, I am not worried about “getting the word out there”.

Not necessarily tons, but there are so many endless resources in which you can learn about your disease and how it works. Especially here on the web! As a teenager, what I am more concerned about is how lupus affects you and your everyday life. What I am going to address in this article is not how to spread the word or tell you all about lupus. No, what I would like to share is a little more personal.

Being a teenager is rough in and of itself. Couple that with a chronic illness! Now, I believe the technical term is “adding insult to injury.”

The same as with anything we find less than desirable about ourselves (simply put…embarrassing). It can be so difficult to open up to people with the truth (i.e. your disease). Some of you may scoff and think, “That’s a horrible message to convey to a bunch of sick people…” Come on now, guys. We are only human. A certain level of embarrassment is more than normal. Who really wants to deal with everything that comes with having lupus? Not me, that’s for sure. Through questioning people on the subject (and unfortunately through personal experience), I can tell you that the aforementioned opposition to dealing with things can spread into other areas of our lives. Specifically, being up front about your illness and telling people that you are sick.

I was diagnosed when I was 8 years old. So, I was not too worried about how my illness would affect my social life. As my teen years approached, however, the concept began to weigh heavy on my mind. I have honestly never been one to be considered a “social butterfly.” Even more honestly, I am actually not very good at being a teenager. I take things too seriously. I prefer well thought out plans to going with the flow. I like being polite and grammatically correct. I think far too much, and I would truly rather be prepared than be surprised. See? I am just not great at being a teenager. With that said, I still do care what other people think. Who doesn’t? Don’t get me wrong; please be who you are. Live to make yourself happy. You have to be able to feel comfortable with yourself and your choices. When it comes to something that you have absolutely no control over though, it is okay to care what people will think.

When you are dealing with lupus and all of its glory, worrying about coming out with your illness is just icing on the cake. I realize that it will be difficult no matter what, but maybe I can help a bit. One teen lupie to another.

Prioritize

Use your judgment when disclosing personal information. Not everyone has to be privy to the inner workings of your life. Then again, some do deserve some info on the goings on in your life. Like I said, prioritize. In no specific order… acquaintances, friends, loved ones, and the unfortunate batch of not so understanding people you will encounter… let’s call them “Rudes.” (Yes, annoying kid in my algebra class, I’m talking to you! :P)

It seems very overwhelming, I know. Do not worry, we will take it a bit at a time.

Acquaintances

Ahh… the flood of incessant questions. It just comes with the territory when you have an illness that is responsible for semi-regular disappearing acts. It is hard to know that people will talk and gossip, but it is perhaps even more difficult to learn how to field incoming questions. My advice is, be polite. Honestly guys, being polite and charming will get you so much farther than shutting down and giving monosyllabic answers.

After going back to school after a month or so of being sick, when people would ask me where I had been I would always just smirk and say, “I’ve been around”. Trust me, that will just make people think you are rude... and possibly even a juvenile delinquent (you would not believe the theories people come up with when someone misses school for a long period of time).

Instead smile and explain in the simplest of terms.

“Where have you been?”

“I’ve had some health issues, so school was kind of impossible for a while there.”

They will then probably ask what you were sick with; if you are all better now; if it is contagious. If the conversation does progress to this point, answer honestly. But keep in mind, most of those who ask in passing do not really care to know technical terms. In other words, dumb it down a little.

“I have lupus, so my body kind of hates itself… Well, it’s chronic, but I’m doing okay right now, thanks for asking… Don’t worry, it’s not cooties. You won’t catch it.”

Throw in some cute smiles and a few laughs and you should be okay. They will leave feeling accomplished for finding out the dirty details and you will have escaped feeling like a jerk.

Friends

With friends, you can afford to be a little more open about it. Hopefully you have friends that you are comfortable enough with to share candidly.

Remember, honesty is the best policy! When your friends have questions, answer with as much information as you think they can handle, and in a way that they can understand. Again, use your judgment on this one.

“So, there’s no cure?”

“Well, not yet anyways. They can treat the symptoms, but it is something you’ll have for the rest of your life.”

Some friends will say they wish they could find a cure. Acknowledge that they care and want to help you. Appreciate that, and hold on to it. Keeping friends can be tricky in this business.

A little forewarning might also be a good idea depending on how deep a conversation you are signing up for. Explain that lupus is unpredictable and can make plans hard to keep. Even if you do keep them, you have got to be aware of your limits.

Not everyone will be ultra considerate and ask if you are feeling up to certain things. Like sleepovers in a row or making tons of plans within a few days. Keep the spoon theory in mind, folks! I know you may feel as if you’re disappointing your friends, but the keepers will understand.

Loved Ones

With family members and most consistent people in your life, knowledge is power! Odds are that they have been with you since the very beginning of your lupus experience, so coming out to them will not really be an issue. In the beginning though, learn together. Ultimately, it will affect them too. Not only will you be on the same page in the future, but it will most likely bring you closer.

When it comes time to get the school or other authorities involved, take advantage of your family’s support. Depending on when you were diagnosed, parents usually take the role of being their child’s advocate. Like all parents, they want what is best for you and are willing to fight for it.

No matter the turbulence lupus may cause in your relationships, acknowledge that it affects your loved ones as well. It is my opinion that you will not find better support than that of family. Be considerate and appreciate them dearly. I know I do.

Rudes

Unfortunately, you may come across people who will not turn out to be as understanding as others... the people who do not believe you are really sick, who think you are faking it, who think you could not possibly be sick enough to warrant being out of school, who think you are lazy or making up excuses, who say “Oh, you just need to get out more!” or “Maybe you’re just depressed”. The only way to really deal with these kinds of situations is to stay calm and logical.

To the people who think you are one big infection that they can catch… lupus is not contagious (Be nicer to me and I won’t sneeze on you the next time I get pneumonia, buddy).

To the people who think you are just depressed… I may be depressed because I am sick; I am not sick because I am depressed. Seriously, wouldn’t you be a tad emotional if you were a chronic pain patient?

To the people who say you are not sick because someone they know with lupus is exhibiting symptoms that you are not… every single lupus case is different. Like a fingerprint, no two are the same. One person’s pain should never be compared or measured relative to someone else’s.

Last but not least...

Now for what I am guessing is a long overdue conclusion (longest article ever, right?)…

The last category is the most important in my opinion, as it is a crucial step in dealing with being honest and open about your disease. Sadly, I believe it is also the most often neglected. If you ever hope to be able to let others become aware of your circumstances, you must first be aware of yourself.

Aware that you have done nothing to deserve this disease. Entirely out of your control, having lupus is nothing to be ashamed of. I must say that I had trouble with that myself for many years.

Aware that you know you are sick, and those who say otherwise are clearly not as educated on the subject as they think they are.

Aware that having lupus may mean that you will have to cancel plans, and your social life may take a beating. That does not mean that your personality has changed or you are not worthy of friends. Even though I may seem flighty and unreliable for canceling plans so often, I have an extremely loyal and reliable personality.

Aware that people will always spread rumors. When they do, know that the rumors they spread to satisfy their need for gossip are not true. The people closest to you (not to mention yourself) will know what is true and what is not. Not everyone will be understanding and supportive. This just shows how precious those that do are.

The ability to truly be aware of yourself shows the kind of strength that many never grasp. In more ways than one, having a disease like lupus forces you toward self-realization. Granted, it may be a rough journey, but you will become aware of your strength. It is in times of struggle that you discover who you are, and what you know to be true. Only then can you hope to be able to share with others.

Until next time!

Hannah

exPEERiences

A new addition to “Teen Lupus”, we present you with the personal experiences of people who are going through all different types of lupus. And, who are still striving to find the bright side. One can only hope that this new addition will inspire you to do the same. In other words, the experiences of your peers. Get it? ex-PEER-iences? I myself thought that was pretty clever.
Our first “exPEERience” submission is an 18 year old girl named Kyrstin Cathryn. Here is her story:

“I was diagnosed recently after a year of blood tests, ct scans, and other medical tests. My name is Kyrstin. I had to drop out of school during my senior year after four years of hard work because I couldn't function and did not know why. I'm still very uneducated about lupus but I'm trying to find out everything I can. I've lost a lot of friends since I got sick because many of them thought I was "faking" being sick. Lupus has taken over my life for the moment. It has caused me to lose a lot, but it has also helped me realize more than I could ever imagine. My dream is to get a PhD in oceanography and marine biology, which at the moment is very far from my grasp. Being landlocked in New Mexico and sensitive to working in the sun, I've been told this is not a great idea. Yet having lupus does not stop me from wanting to work with marine life. It has made me want it more. Nothing has inspired me more than the sharks that I am determined to study (specifically how they contribute to helping medical conditions).

Lupus has made me see all of the blessings I have been given. I have a wonderful family, with plenty of aunts, uncles, and cousins. They give me the strength and love that I need during these hard times. I feel like the luckiest girl in the world to have ten cousins that I consider my best friends. They support me in everything that I do, and everything that I want to do. Lupus has made me realize what people were in my life for the long run and saved me time from having to figure it out. After years spent wondering, to be diagnosed was a relief. I still don't know the role lupus will play in my future but I plan to live my life the best I can and continue to find hope when all seems lost.”

Thank you so much to Kyrstin Cathryn for submitting the first ever, “exPEERience”! For those of you who would like to get in touch with Kyrstin, please email me and I will be sure to forward your message to her.

Our next teen “exPEERience” is a girl named Katherine Damerst. Find out what she and others like her have to say in next month’s edition of The Lupus Magazine.

*To submit your own “exPEERience”, please send your story to

Hannah.tubbs@hotmail.com

Stories concerning teens you may know with lupus are also welcome.

* Hannah is the founding Editor of this exciting new page for teenagers with lupus - www.thelupusmagazine.com

El vuelo de la mariposa Por Daniela Ayala

2011-05-16T21:09:00.000-07:00

El vuelo de la mariposa Por Daniela Ayala

La Revista de Lupus

Era el mes de septiembre y en mi rostro empezaba a notarse ya ese fresquito del atardecer. Volvía del campo y pude apreciar cómo una mariposa se posaba en una bella flor del jardín.

Me quedé pensando en lo bonita que era la mariposa, toda llena de colores, y lo hermoso que era su movimiento de flor en flor; Parecía música para mis oídos.

Lo que nunca imaginé en aquel instante, era que aquella “mariposa” estaría siempre junto a mí, acompañándome en el caminar de la vida, posada junto a mi sombra día sí y día no.

Durante los primeros años de mi vida con lupus, los días pasaban de forma extraña, pues no sabía cómo amanecería al día siguiente o incluso cómo me iba a sentir horas más tarde. La gente que me rodeaba no comprendía demasiado bien mis dolores y fatigas, y eso no me sentaba nada bien.

Yo era sólo una niña de 13 años, con ganas de jugar, de salir, de relacionarme, pero muchas veces mi estado de salud me lo impedía y tenía que guardar reposo en mi casa. En aquellos momentos, me sentía como una mariposita enjaulada, que intentaba mover sus alas pero por falta de fuerzas era imposible conseguir un mínimo vuelo...

Los tropiezos de aquella mariposa nunca se entendían bien, y cada vez tropezaba de forma distinta, pero la mariposa maduró y comprendió mejor cómo funcionaba su vuelo, cómo debía cuidarse y vivir una nueva vida.

Ahora, ya con 31 años, la mariposa sigue a mi lado, pero la veo de otro modo, ya no está triste, y si algún día aletea de forma débil, le doy ánimos para que sonría y al día siguiente volemos juntas las dos.

La mariposa, me enseñó a valorar la vida, me enseñó que hay que sonreír, disfrutar, vivir, ser fuertes, superarse... pero a la vez cuidarse y quererse a uno mismo, agradeciendo a todos los que nos rodean por sus cuidaos y amor eterno.

¡No hay que rendirse, sino luchar!

Quiero agradecer a mis padres y a mi marido su cariño y amor infinito, pues sin ellos, yo no sería nada y mi mariposa no saldría a volar, ¡os quiero mucho!

Mis queridos amigos:

Se acerca un día importante para todos nosotros, un día en el que poco a poco y año tras año, nuestra enfermedad se va haciendo más conocida en el mundo entero, y gracias a eso, todos los que padecemos lupus no nos sentimos extraños ni incomprendidos, ¿cierto?.

El próximo 10 de Mayo del 2011, se celebrará en el mundo entero este día mundial del Lupus en el que muchas asociaciones de enfermos con lupus llevarán a cabo algún evento tales como : congresos, encuentros entre médicos y pacientes, charlas, seminarios, etc.

Y por otro lado, todos los enfermos y familiares de enfermos con lupus que forman parte de esta gran familia llamada internet ( redes sociales como facebook, twitter, blogs, páginas web, foros, etc ) harán correr la voz de que se celebra este día.

Nosotros debemos luchar por un mejor conocimiento de nuestra enfermedad en el mundo entero, para que se nos escuche y ayude, para que cada vez más y más médicos muestren interés y se unan al estudio de nuestra enfermedad. Tenemos que contar sin miedo en qué consiste nuestra enfermedad, los tratamientos que debemos tomar para estar bien, y la actitud que debemos tener para afrontar la vida, pues sólo de se modo, la gente colaborará y nos ayudará.

Espero que todos vosotros os unáis a mí en esta lucha contra el lupus, que como cada año, el 10 de Mayo, vocearemos un poco más alto ;-)

Un abrazo enorme a todos vosotros,

Con cariño,

Daniela A. Ayala M.

Daniela Ayala.
ESPAÑA.
Facebook: Amigos Con Lupus

Three years with lupus... Happy anniversary? - by Shoyea-Gaye Grant

2011-05-16T21:02:00.000-07:00

Three years with Lupus… Happy Anniversary?

First published in The Lupus Magazine

Yes, it is. I refuse to see it any other way... Carpe Diem!

by Shoyea-Gaye Grant

This same day exactly three years ago, I got the news that has, since that moment, changed the entire course of my life. While lying on a bed that so many others did before me, and in a place that was fighting to replace home, it was brought to my attention that the aspect of my body that should be protecting it, was in fact damaging it. I had an incurable disease that had damaged both my kidneys.

“I’m sorry, all the tests came back positive…You have Lupus.”

It is amazing how one sentence can change everything. Three years ago, I thought my life was over. I could not imagine living through the new aching that I was assured was going to be constant. I was unable to wrap my head around the idea of internally fighting every day and programming my mind to challenge my body that refused to listen to it almost all the time. I could not see beyond the walls of the hospital.

My three year relationship with Lupus has taught me more about life than anything or anyone else could have. It taught me how to have faith, what love is and how to love, what friendship is and how to be a friend but most of all, through some amazing persons (TLM), it has taught me how to give myself to others. Lupus was the path I needed to direct me to my purpose in life. It taught me that no matter what the situation may be, we have only two choices: to be pessimistic about it or to find the bright side, even when it seems so small.

This is not to say that Lupus is a joy. There have been times when I have felt more pain than I could have ever imagined, when I don’t even want to feel the slightest touch from another person. Times when I knew I was going to be sick and begged my body not to let it happen. When the feeling got stronger, I would resort to just hoping it would hold out until I got to the solace of my home. There was a time when my sole dream in life was to just get out of the hospital… to now being that of going through an entire day without feeling any pain at all. However, I refuse to look at the negatives even though there have been so many. There is absolutely no challenge in that, is there? And one thing that Lupus has taught me is that in everything I should fight.

While I am not celebrating the fact that I got Lupus, I must admit that I do not regret spending the last three years with it. It is a bitter-sweet occasion, knowing all the hard times and the pain that comes with being a Lupie, but knowing too, the advantages (Yes, there actually are advantages!!!!) that it brings.

My journey with Lupus has not been filled only with pain but with accomplishments. However, while I am indeed proud to be an international writer for what I deem to be the best magazine ever created ( I assure you, this is not based on bias but rather empirical evidence ) and becoming the Lupus Voice of Jamaica, I hold closer to my heart, the lessons learnt and my maturity, than the achievements.

Because of Lupus, I am not afraid to love with my all. Now the people I love will never have to question if I love them. Because of Lupus, giving myself to people has become second nature. Because of Lupus, my motto in life is now “Carpe Diem”, which means “Seize the day."

While a lot of people say life is short and some may even come face to face with death once or twice, not everyone knows what it is like to be fighting to live, not once or twice, but on a constant basis. The unpredictability of having a flare tells me that I do not have luxury of postponing.

I live, I love, I laugh, I give and I seize the day/moment because I know what it’s like to be at that place where I look back and wish with all my heart, that I could just have another chance.

It is my anniversary, and I am not gloomy about it. While I live with a disease that is characterized by pain and I hold on to the hope that this cup too shall pass, I have the strangest feeling that Lupus is not through teaching me all the things I need to learn.

Three years later, and it completely overwhelms me that the day that I thought I could not look past, all the feelings I thought I could never overcome, has now become a memory… And once in a while I’m given this privilege to cry. Not because of pain, not because of frustration, not because of the feeling of loss…No, I cry because of joy. The joy that only comes with the ability to look back on the battlefield and see that even though the war has not ended and there is much more up ahead, the battle behind me is one I have conquered. I cry tears of joy because I have found out what it really means, not simply to rise up out of the dust, brush off the dirt and begin walking again, but to spread my wings and soar.

Three years with Lupus… Happy Anniversary?

Yes, it is. I refuse to see it any other way. Carpe Diem!

Shoyea- Gaye Grant ©
Jamaica,
West Indies.

The Lupus Foundation Jamaica
Voice mail: 1876-803-0082
Email: lupus_foundationja@yahoo.com

Taking a vacation from lupus by Ro Molina

2011-05-16T20:57:00.000-07:00

Taking a Vacation from Lupus by Ro Molina ©

First published in The Lupus Magazine

Even though I don’t work a full-time job, my life is far from leisurely. Aside from taking care of myself, I also care for my mother. On top of that, my day is full of work, study and research to better my health. Work to earn some income from my writing, blog and design work... And work with the goal of becoming self-sufficient at some point.

While having a disability pension means that I don’t have to make myself sick trying to keep up with the demands of a 40+ hour workweek, it also means living a life controlled by others. The purse-strings, unfortunately, too often hold the power.

Anyway, everyone at some point, needs a vacation. For those of us with Lupus, however, planning a trip can easily become more of a hassle than it's worth. Does that mean us lupies can’t get away and relax for a bit? Of course not. It’s just a matter of working smarter, not working harder.

Before you start booking a flight or calling up hotels, it might be helpful to ask yourself these questions:

1) How do you relax and unwind? Do you like to dance the night away? Is your idea of relaxation lounging on a beach with a book? Do you want absolute quiet? Hustle and bustle? Knowing what kind of break you need will go a long way helping you make the most of your vacation options.

2) What is your first priority? Are you so close to burning out that even one night away would make all the difference or do you need to feel pampered - expense be damned? If budget is your biggest concern, then plan around that. If you’ve got your heart set on a specific experience or location, then plan for that. If simplicity and ease is most important to you, then that is what you focus on.

3) What do I have (money, time, energy, etc.) to work with? What don’t I have? Bargain-hunting might go easy on the pocket, but it means investing a lot of time and energy. Ambitious adventures to exotic locals might sound fantastic. That is, until you're up to your eyebrows in crazy flight plans, medical requirements and weird regulations that make no sense to you. So, if you’re energy is really low, try to keep your plans as simple as possible, or pay a little extra to have a travel agent do the crazy work for you.

If your energy is low and your budget is tight, consider being flexible. Beaches and palm trees do not make a vacation. The essence of a vacation is relaxing and removing yourself from the normal concerns of your life. Focus on that essence and be flexible about the details. Some of my most relaxing moments have also been most unconventional; a week in a Catholic monastery, a train trip to Niagara Falls, and even a few days break at whatever cheap motel I could find in Manhattan. Online sites such as Living Social, and Goldstar have periodic day trips on offer and once the weather gets warm, newspapers abound with plenty of low-cost activities and getaways.

Another good option is a cruise. There are plenty of benefits of booking a cruise vacation, namely that your room, meals, entertainment and travel are all covered under one price. And while it might be tricky to find a cruise leaving from a port in your neighborhood, traveling to another city to find a port is still less work than booking multiple hotel rooms, flights, taxis and on top of that organizing all your own sightseeing. Not keen on crossing the ocean? A little research can also dig up river cruises; a perfect adventure for the spring.

So, if stress is making your symptoms worse, or if you're just after a little breather, don’t rule out a vacation as something that’s only meant for cubicle-slaves.

Dust off your computer and start making your plans now.

How I survive lupus by Jules Sherred

2011-05-16T20:51:00.000-07:00

How I Survive Lupus

AKA... My 12 Step Programme by Jules Sherred

The past month, Lupus has been trying to kick my butt more ways that I can count. It started off with getting knocked down with four infections: a sinus infection, a throat infection, a lung infection and a kidney infection. The infections got so bad that I had to go to emergency and be put on oxygen. Due to the severity of my illness, my lupus activity increased. My lupus fog was so bad that for four days, I couldn't comprehend type and I ended up overdosing on my antibiotics.

When I received the new prescription, my brain was seeing, "Take 2 tablets twice a day until finished."

What the label actually read was, "Take 2 tablets once a day until finished."

I've had lupus fog in a very extreme fashion, but never has it affected my brain in such a dangerous fashion. Especially as I'm very careful when it comes to reading medication labels. Some of my medications, I've been taking for over a decade and I still read the label every time I take them just to be safe. I was terrified because for four days, I was senile. Printed words and basic instructions were not being registered and interpreted correctly in my brain. As a result, I had a mini-meltdown.

It is now almost a month since the initial onset of infections and I'm still nowhere near recovered. I am now combating a terrible stomach bug. Sick and exhausted doesn't even begin to describe how I am feeling.

When I was going through the infections last month and finally became coherent again, realising my terrible mistake, one of my Twitter followers asked me how I coped with it all. That is when I wrote my 12-step guide to surviving lupus. You will find it below.

How I Survive Lupus (AKA My 12 Step Programme):

1) If something is bothering me on an emotion level (fear, doubt, anger, frustration, etc.), I name it. Naming it allows my brain to make it tangible. It allows me face it head on. I believe you can’t fight something that you cannot, or are unwilling to name.

2) I do not internalise by feelings. I get them out in the open, either through telling one person or blogging. For me, this is very necessary step in moving onto my plan of action to win whatever battle I am facing. Also, internalising it is never a good idea. I use to do that, isolating myself in the process and causing depression to set in. Sometimes (read a lot of the time) this is scary because I face rejection and all of my abandonment issues rear its ugly head. However, despite my fear of rejection, I open up about them because:

3) There is no shame in admitting to fear, anger, despair, grief, frustration, doubt, etc. Admitting to it, especially openly, takes a huge amount of courage. It means you are willing to stand up and face whatever it is, even if you are shaking in your trousers while doing so.

4) I remind myself that raging openly about the fear, anger, despair, grief, frustration and doubt means that I am still alive and am fighting. The day I stop being angry, afraid, grieving, frustrated, doubtful means that I’ve given up and am probably extremely depressed.

5) If I fall down, metaphorically and literally, I pick myself up and try again. I do this as many times as necessary, each time going through steps 1 -4.

6) I try my best to focus on all the positive things that are currently going on (no matter how small or trivial it may seem) and, in the process, reminding myself why I am fighting. I remain thankful for all the wonderful things I get to do despite lupus trying to kick my butt. Sometimes this can be quite difficult as living with lupus can get pretty bleak. I also remind myself that people are fighting with me and doing their best to carry me when I cannot carry myself. I am not alone, either in this battle or in the way I am feeling.

7) I breathe.

8) I erect strict mental boundaries as I’m someone who needs a lot of space and room to contemplate. I am a cave dweller by nature. Sharing does not come easy to me. I can share once and only once. It is one of the reasons I blog, so that I don’t have to repeat the same story over and over. Doing so causes me to become even more angry and frustrated and I find it very emotionally and mentally fatiguing.

9) I find humour in the silliest and most morbid of places and laugh, even if it is through tears.

10) I remind myself that, even though I share a lot of qualities with Spock or Data, I am only human.

11) I remind myself that sometimes you need to crawl before you can walk.

12) I think most importantly, I deal with lupus like someone would deal with an addiction: day by day. Sometimes the day by day approach is very difficult because so much can be thrown at you in a 24 hour period. That is when I take it moment by moment. I remind myself, “You survived this moment. You can survive the next.” That does not mean that I am not crying or raging in the process.

A Magical Mystical Lupus Tour by Annie Taylor

2011-05-16T20:46:00.000-07:00

A Magical Mystical Lupus Tour... Down the Lupus Rabbit Hole and Back Again - by Annie Taylor ©

First Published in The Lupus Magazine

When you are diagnosed with an illness as confusing and overwhelming as Lupus, your options seem limited. Indeed, just understanding Lupus itself can be somewhat confusing. You know you have an Auto Immune Disease, so why do you see a Rheumatologist, rather than an Immunologist, a Haematologist or indeed, any other “ologist” depending on your symptoms? In fact do you even comprehend what an Auto Immune Disease is? Do you feel rather like Alice who lifted the bottle when told to “Drink Me,” to find herself shrinking into oblivion?

Having been diagnosed with Lupus a number of years ago, I trusted my GP to do the best for me in terms of referrals and monitoring. In short, I followed the white rabbit down that hole into a nightmare non-wonderland of ignorance, confusion and depression. WRONG!

Educating yourself about your condition and seeking some form of support is a life line. Doctors can get complacent, Interns can be inexperienced, and even Specialists sometimes have difficulty maintaining a seamless treatment regime.

You need to understand what Lupus is, in order to know what Lupus may throw your way. This in itself can be a terrifying journey, as you delve into the symptoms and complications of Lupus, both Discoid and SLE.

Understanding that Lupus is called “The great Imitator” may help you to know that many things can be a sign of Lupus, but how to know when to seek help, or where to look for this help can be a struggle for a new “Lupie”. The fear of developing some of the many complications, and suddenly finding yourself taking a cornucopia of unfamiliar drugs, some with rather unsavoury side effects is enough to confuse even the most grounded of persons. Don’t nibble at that mushroom without knowing what it will do to you!

Educating yourself about Lupus is probably the most sensible thing you can do, followed closely by allying yourself to a Support Network of some sort. This may be family or friends, but the chances are, they are just as confused, or more so than you are.

So – what do you do for help? Indeed where do you go for help?

Sometimes Google can be your enemy, the Tweedle Dum and Tweedle Dee of conflicting advice depending on what sites you land on. The fear factor on some sites can be terrifying. Learn to ignore these.

Also the Quackery encountered on the Internet is scary to say the least. “Eye of newt and wing of bat” has often come to mind when I have delved into sites promoted by those I refer to as “Quackery Dackery Docs”. The Mad hatter has nothing on those guys. In fact the Caterpillar’s hookah was probably less toxic than some of the stuff they peddle.

Take every site with a grain of salt. Research, educate yourself, and then research again.
You are, after all, looking for support and reliable information. And not to spend your well earned dollars on “Smoke and Mirrors” treatments and cures.

Ask your General Practitioner for any contacts he may have for Support Groups. Chances are, unless he/she already has Lupus Patients, he will probably not have a clue. Unfortunately this is often where some of us should tell our GP’s where to go, in a kindly way of course. I favour this type of GP fading into the oblivion of his own non committal, here we go again Cheshire Cat smile.

You can try the Hospitals, but often end up going round in circles as the Inquiries
Desk asks Loooo… What? And what Department would that be? Off with their heads I say.

Ask your treating Specialist if he/she knows of any support groups. A good Specialist not only understands your symptoms, but will also understand the impact Lupus has on your family, friends, job, study, and life in general. However sometimes Specialists are more concerned with your disease than your state of mind, or your “Need to Know.” If this is the case, think laterally.
Search the Internet Again! It is truly Wonderland. As long as you can learn to correctly interpret the types of sites you find you will glean a wealth of useful information.

Use the words Lupus, Lupus Support and Lupus information. Add the words Foundation, Association or Trust.
Look for .org in websites.
Look at sites that do NOT promise a Cure.
Make sure the sites you access are not selling supplements, literature, tapes or DVDS promising a cure. Check the advertisements on sites.
Search Social Networks.
Put up Flyers on your community billboards, and in doctors surgeries if you can.

My lifeline ended up being, of all places, Facebook, when I stumbled across Lupus Association Queensland.

This has given me the special gift of a worldwide Lupus Family, and the regular meetings have helped me in my transition from being a Lupus Sufferer, to that of a person with Lupus. The difference is enormous.

A Lupus sufferer is just that, a sufferer. A person with Lupus is someone informed and comfortable about their disease, someone who knows the options available, and has the strength and knowledge to query treatments, educate themselves and others, and to insist on their right to be informed and respected as an individual. In short, a Person with Lupus is a person in control.

The ability to speak to empathetic persons in the same situation, albeit of varying severity, allows a little more objectivity. It also allows you to see that people can and do function with Lupus. The social aspect of a support group allows you to share your fears and feeling in a non-judgmental setting, which is a difficult thing to do with your family and friends.

Also, take the opportunity to make friends with someone who knows what you are talking about and does not judge. Forget therapy groups, shopping, manicures, or massages. Get yourself a circle of Magical Mystical Lupus Friends, who can support, listen, advise, and empathise. They have been there and done that. And will not judge you for it. This is a truly heady experience, and to my mind should be listed as an approved Medicare Treatment.

Having a good support group will alter your mind set, help you accept Lupus and your treatments, allow you to vent, set your perspective straight, and allow you to use your experiences with Lupus in a positive and empowering way, letting you out of the rabbit hole, and back to your (near) normal life.

© Annie Taylor & The Lupus Magazine

My battle with brain fog by Kristel Goodspeed-Correa

2011-05-16T20:39:00.000-07:00

Hope beyond the Crystal Pane by Kristel Goodspeed-Correa ©

First published in The Lupus Magazine

“What was that again?!”

My battle with brain fog

I have to admit to myself that much of this past month or so has been a bit of a blur. I have probably seen one of my worse bouts with the infamous “Lupus Brain Fog” to date. I think many of us have fought this battle, off and on, with this disease so we can all relate at least on some level.

Usually the brain fog bouts come and go, but wow this one just kept lingering on and on and on. It would go away for a few hours and then come back again. It’s been a thorn in my side for weeks now. Apparently, it decided it was quite comfy with me and like any other unwanted houseguest, it just refused to leave. I just hope that it cleaned up whatever messes it made in there. Nothing worse than a dirty mind filled with cobwebs of confusion.

I don’t know about everyone else, but I seem to have differing types of brain fog that can occur from time to time.

The most common for me is one I like to call the “OMG, I have a hamster wheel inside my head!”

I call it this because, for me, it literally feels as though there is some giant wheel spinning forward over and over again. I can just visualize the Big Bad Wolf running around on that wheel getting in his cardio exercises. Huffing and puffing along, checking his heart rate, etc... I do often wonder what the heck that wolf is chasing on that invisible wheel though because it seems to be relentless. Doesn’t he ever tucker out???

(Editors note: for a moment there I thought we had a new Johnny Trash!)

Another type of brain fog issue that I tend to get involves some major dizziness. Not sure if perhaps it is not some type of vertigo or something of the like. Whoa, someone help get me off this crazy merry-go-round !!!

Even this one has varying degrees to which it occurs ranging from just a little bit dizzy to the feeling of being totally off-kilter and a sense of potentially falling over from it. So far, I have not fallen, just an overwhelming sensation that I might which is kind of scary to experience to be honest. I just hope it doesn’t wait for an audience if it does. That would be my luck, there would be someone who filmed it and it ends up going viral on the internet. Oh myyy .

I can just imagine it now… umm Dad? Hate to be the one to tell you this but…ummm check out www.kristelmadeafoolofherselfontheinternet.com (btw... it is not a real website, at least I hope not anyhow!)

Next on the list, is the invisible wall that randomly shows up when I am trying to speak to someone. I could be mid-conversation and suddenly have absolutely no idea what the heck we were talking about or what I was trying to say for that matter (even in the middle of a sentence). The mind just goes completely blank! The more I try to recall it, the higher and stronger that wall becomes. It actually starts to hurt similar to a headache when I try to think on what the heck it was. I don’t know if perhaps that happens because I panic so the brain responds to that panic by building the wall higher, but as soon as I give up trying to remember, the wall eventually goes down again and the memory comes back somewhat.

[Visualizing the Big Bad Wolf laughing hysterically for embarrassing me in front of my boss or fellow co-workers or something. He’s a bratty one, that wolf is. And mine has a strange sense of humor. Of course, so do I, so that makes sense that he would also. Maybe this is his way of flirting??].

A new addition into my repertoire of Lupus brain fog issues now includes the inability to focus. I envision it like some kind of soup made up of thoughts, words and phrases that just get all jumbled up. Sometimes nothing seems to make sense to me and other times it just likes to mess with me. I can be thinking one thing and somewhere between my thoughts and mouth, it gets completely screwed up. A good example of this is one day when I was having eyeball migraines (I hate those!)

I was telling Joe about them, but what came out of my mouth was some funny condensed version of it… I was having “myballs”. Good grief, but I did get a good chuckle off of it. I actually had an even funnier story much like that one but for the life of me, I cannot remember it. Darn memory issues.

Do I like any of this stuff happening to me at any given time? Oh gosh no! But at the same time, I have learned to cope with it to some degree at least. I try to find some sort of humor in it if I can. Granted , not everything has a positive upswing to it, but if you can try to find one, it does help. I think that is why I use the “villain” of “Big Bad Wolf” to represent my Lupus. It gives me another means in which to cope. Good guy (me) vs the bad guy (Big Bad Wolf of Lupus) in my own life story. I can change his character as the need arises to make him a comedian or a playful brat at times so he isn’t completely a bad guy all the time... Just misunderstood. Which is what I believe is more the reality of what Lupus, the disease truly is misunderstood.

I have actually started a new means of coping in this past month too. Fun with paints! While I am no artist by any means , it did give me some time to myself and utilize other parts of my brain in my creativity. The paintings themselves are not perfect, but neither is life itself. And it is in these imperfections where some of the most beauty lies, we just have to find it. The same can be said for Lupus. We each have to find the beauty in it’s imperfections and share that with the rest of the world.

Kristel ~

Tweet a little, talk a little by Maria Pfeifer

2011-05-16T20:35:00.000-07:00

♫ Tweet and little, Talk a little... ♫
© by Maria Pfeifer

First published in The Lupus Magazine

If you’re a birdwatcher, like I have become, a robin’s return to the area is considered a sign of Spring. In fact, at my house it isn’t just the return of the robins I’m witnessing. I have all kinds of birds spreading the Spring news these days ranging from chickadees to bald eagles, and everything in between.

As I sit here listening to my most recent visitor, a red-winged blackbird, I am caught by my reaction to his announcement perched on the deck railing: recognition. His song is one that stands out and something that is consistent no matter what the situation. These birds (the males anyway) may vary their tunes, but overall they stick with the same song. As the summer continues along, I don’t hear it quite as readily because I get used to hearing it over time. At the beginning of spring, though, in concert with the songs of all the other birds, it’s a familiar and welcoming tune.

There are some birds, though, that I just can’t seem to get that comfortable feeling for. Namely, crows. Nothing like camping and enjoying the cool temps of the morning with mountain air filling your tent, only to have a crow perched right above you ‘cawwing’ over...and over....and over again. They have their place on this planet, but I just don’t understand why they always have to perch right above my tent every time. I don’t feel that way about chickens or roosters, who announce the morning’s arrival. Just crows. There are simply some tunes that don’t contribute anything but irritation. They almost seem like bullies in their delivery – pushy, demanding and void of any consideration for anyone else’s feelings or songs.

I had a conversation with someone the other day who recently went to see her rheumatologist for her quarterly check up. When he was putting together her lab orders, she mentioned that the disease self-management class she’s taking recommends that she journal her symptoms to help explain to doctors what is going on with her health. His reaction was immediately “Oh God, not another blogger!”

He went on to ramble about how irritating it is to hear patients tell him about their blog, how they learned about some new treatments on Twitter or how they met someone on Facebook who experiences the same strange symptoms as they do.

“What in the world do you guys talk about?!” [The crow]

“Well, life, ...I guess,” was her calm response. [The songbird]

Just as the communication of birds varies between comforting and annoying to some people, so, too, does the communication between lupus patients regarding their health and living with unique challenges. Is the goal to restrict communication by placing judgments or ownership of the material, or do we recognize that not everyone sings the same tune as they adapt and thrive in meeting their challenges and celebrating their achievements?

Each species of bird shares the same songs and use them to create an environment filled with cooperation (and competition) as they all work to survive. Those other birds that don’t share their tune carry on with their own songs for the very same reasons. All of them know what they are and why they are singing, leaving us to either enjoy the sound or be annoyed by it all. What would this world be like without them, though? Do we allow only one species of bird to sing their hearts out, while muting others because we feel they don’t share in our perspective (song) or because we feel we can sing better than they do?

What would Spring sound like? What would lupus sound like? What is the crow hoping to achieve by being the noisy bully?

What would happen if, this month (lupus awareness month for some), we all sang our own songs to announce to the world that lupus is here and that those people, who don’t know much about it, can undoubtedly find a little bird to land on their shoulder and share their song ~ and that all they need to do is listen for them?

by Maria Pfeifer ©

Honoring global awareness by Elisa Lynee

2011-05-16T20:10:00.000-07:00

Butterfly Blessings by Elisa Lynee

First published in The Lupus Magazine

Honoring Global Lupus Awareness

This month’s Butterfly Blessing column is a bit different than usual. The month of May is Lupus Awareness month and in honor of that, I decided to share how my Lupus Awareness song, “Fly Free Butterfly Fly Free,” has gone global!

I have an Uncle who teaches English in Beijing, China. For two of his classes last week, the students studied my song. The caption is a direct quote from my wonderful Uncle, Lewis Sandler:

“I took this photo of my graduate students at Graduate University of Chinese Academy of Science English class in Beijing, China on April 16. Students are Master and PhD students in various sciences such as Chemistry, Biology, Computer Science and Physics. I gave them the lyrics to Fly Free Butterfly Fly free. We studied the vocabulary, pronunciation and some of the symbolism. We read it aloud and then I played it several times. This photo is a shot of them singing the song with Elisa. We also discussed Lupus and many of them already knew about it as they had studied it in high school. They all said they enjoyed the song very much. And they wanted to know how you met your husband. J”

I was astonished to hear that many of them had actually already studied Lupus in high school. Hearing that leads me to believe that Lupus awareness in Beijing may be quite ahead of us here in the US. That is very interesting to me!! And, with that being said, I must also say, I feel truly blessed and honored that my Lupus awareness song was studied in those classrooms across the globe. For those of you with inquiring minds, yes, the class did find out how I met my husband; but, that will have to be another story for another time.

Until next time, look around you to find your Butterfly Blessings. Whether they are within you or surrounding you, they are always there!

© Elisa Lynee, 2011
www.elisalynee.com

The Lupus Family by Tiffany-Marie

2011-05-16T20:03:00.000-07:00

The Lupus Family - Raise Your Voice by Tiffany-Marie Peterson ©

First Published in The Lupus Magazine

While I see my rheumatologist every other month for treatment in New York City, a lupus patient in London is taking her evening medication. In California a mom is stamping butterflies on her daughter's t-shirts for school, and up in Buffalo, a student studies medicine in college while making sure his kidney transplant remains healthy.

An SLE (Systemic Lupus Erythematosus) patient in Virginia may be wearing a purple wristband; while a DLE (Discoid Lupus Erythematosus) patient in Australia is sporting a orange ribbon.

Somewhere in Boston midnight snacks are occurring thanks to "Mister prednisone" while a brave soul is shaving her hair in protest of her bald spots in Indonesia.

Some of us are toddlers, while others are teens. Some speak English while others speak German. In all different ethnic backgrounds there are dads, as well as moms and you can find them living in various places across the globe. Only one thing remains the same between us all.

We each have Lupus.

There are over 1.5 million people in America and over 5 million in the world today currently diagnosed with lupus. So you see we are NOT alone! Their is support to be found across the globe.

Whether it's a family member like your grandfather who raised you or your sister who's always by your side. It may be a husband who takes the kids to school for you, or your boyfriend who holds your hand in the hospital. There's the best friend who plans a girls night in when you're flaring, and the mom who picks up your prescriptions on her way home. What about the adorable children who make you breakfast in bed because you were too tired!

Don't forget that thoughtful comment a fellow lupus sister left on your Facebook wall reminding you that you are in her prayers, and the fact that your lupus brother virtually held your hand when you shaved those locks of hair months ago!

Maybe your phone buzzed in the morning with a reminder to take your medicine or you woke to belly tickling chuckles from your favorite online support group. Perhaps you asked your doctor about a new medication you'd like to try after reading several tweets from friends trying a different treatment regimen in another state. Or even read the latest blog post about upcoming medicines in clinical trials.

We are uniting as a family, and joining forces all across the globe to provide each other with love, kindness, understanding, and support in the fight against lupus. I can't help but imagine how amazing it would be if each of us used our voice this month to shed some light on lupus during a month of awareness.

Some of us may be tired of the "but you don't look sick" comments and repetitive questions? But if we don't speak up and spread lupus awareness how can we break the stigma of our chronic illness? It's time to gather up our support systems and use our voice!

My hugest support system when I was diagnosed was my mom and sister and I'm so glad they have never left my side.

Whether we wear purple or orange, take steroids or chemotherapy, sport wristbands or pins, are male or female, live in Canada or Antigua, age 9 or 39, we ALL have lupus.

So let's all get in the loop and make our voices heard for Lupus awareness activities this May!

Together we are strong!

A family of Strength by Julie Miller

2011-05-16T19:59:00.001-07:00

A Family of Strength by Julie Miller

First published in The Lupus Magazine

I’ve come to have a new, greater appreciation for life after this past flare that hit me HARD! And since I am still unsure of the course of treatment since the first round of chemo which made me so sick, I have come to value my health, family and friends more so than ever!! Perhaps it was a wake up call from above? Either way, I will NEVER take my health for granted again. It’s just too bad that it took losing organ function to get through to me!

Each day is precious to me. When I wake up, I am so thankful that I am able to see my awesome family.

Up until now, I have been able to shield most of my illness from my 9-year-old son. Although he knows about my lupus, he has seen very little of the symptoms it presents. This past month, he unfortunately was exposed to all the pain, sickness and suffering that lupus brings and he was disturbed to say the least.

Looking back now, I realize that what a learning experience it was for our whole family. And how much stronger it made us all, as a unit.

The high dose steroids temporarily changed my body in ways I didn’t experience before. My son learned to NEVER judge anyone, because you never know what they may be going through in their life.

One does not fully appreciate their health until they no longer have function of it. It was amazing how good I felt once I remained even little function of my kidney… it was remarkable!

I thank GOD that I went through this and did not have to witness a family member deal with this pain and suffering! My strong faith is what got me through the most difficult days… it is what defines me.
I don’t know what the future holds… but I have put everything, my life, in Gods hands.

And I teach my son this, so he has something always to look up to… because although I try to be the strong mom, all the time, God knows that I have my weak days and we will always need HIM, no matter what!

Julie Miller

Fairweather Friends by Johnny Trash

2011-05-16T19:53:00.000-07:00

Trash Talk by Johnny Trash ©
Warning: Some language may offend!

First Published in The Lupus Magazine

Fairweather Friends

"Me, I’m a part of your circle of friends and we, notice you don’t come around..." sang Edie Brickell!

Why am I quoting these lyrics? Because since being diagnosed with Lupus I have noticed my friends don’t come around any more! And whilst I hear from ‘cyber friends' and a handful of friends who live quite a distance from me – who visit when they can – I literally don't see anyone else.

I am not alone it seems, having spoken to people in the same situation as myself, this is a very common scenario. Why is this ? Why is it that the people we were once oh so close to are now keeping their distance? Not so much as a facebook message, a phone call, or even a one line text asking ‘How are you?’ Come on... surely I’m worth 10 pence of anyone’s money now and again?

The amount of times I’ve been in hospital over the past 2 years and haven’t seen a single soul really gets on my tits! I get really down hearted watching people with strings of visitors day in day out, bringing grapes and a little piece of sunshine to peoples lives, whilst I sit like a Billy no mates on my bed, or outside smoking a fag! (Generally the latter!)

You see, up until I was diagnosed with various diseases I was the one who was the taxi service, the gig buddy, the friend who was always there for everyone else in times of need. I was a shoulder to cry on, a counsellor, a voice on the phone and a helping hand. If a friend was sad or in need of a chat then I’d be there, literally dropping everything and providing cake and an ear.

I guess I’m all used up now and can’t provide these services anymore. Either that or people are afraid of my illness. Mention ‘Chemo’ and they run screaming at the thought of a bald head! And you know what? I try still really try. Organising outings and visits that never ever materialise unless I get off of my sick arse and drive to them.

But now I’ve had it with these people. I know the people I can rely on, I have some amazing friends, be it only a handful now, but I know I can rely on them. I’ve a great network of fellow lupies who have become like a family to me and who brighten my day and are always somewhere in cyber space willing to lend an ear and listen to me whinge. It works both ways, because we all seem to be in the same boat.

Yes it’s sad. I have cried over this and wondered why my friends don’t bother with me any more, but now I think ‘Fuck them!’

When they are next in trouble or need an ear, or advice or need me to do something, I am not going to be there any more. Screw them! I can’t be arsed to make the effort any more. I have fewer friends now who live quite a distance from me (but they are amazing ! – you know who you are : ) And so I say a huge ‘Thank you’ to them, for providing me with smiles through the shit times!

And as for the rest? When I finally pop my clogs, don’t bother coming to my funeral as I have left strict instructions that you can turn around and fuck back off again! Harsh? Maybe... But, If you’re not here for me when I’m alive, I sure as hell don’t want you here when I’m dead!

Now a message to all of you... Go make someone’s day! Or I will hit you with a large spoon. Just remember this, ‘One person can’t change the world, but you can change the world for one person.’

Right... I’m pissing off now. Until next time...
JT xox

The Waiting Room by Debra Freeman Highberger

2011-05-16T19:48:00.001-07:00

The Waiting Room By Debra Freeman Highberger ©

First published in The Lupus Magazine

The first thing I think of when I am sitting in a waiting room of a doctor’s office is…”Do I really belong here? Am I now part of this elite group of people that are sitting all around me?” The waiting room: It is a place where first impressions are made of people you will only see once in your life. It is an assemblage of the most unlikely populace. We all do it…sit in the waiting room of a doctor’s office and look at the inhabitants we are surrounded by and wonder…”Does that person have the same illness as me?” Sometimes it is easy to tell. Especially if it is a skin affliction like a rash. Other times…not so much.

It is an odd place; the doctor’s waiting room. Everyone is trying so hard to maintain their own space and not look at each other. This could be the perfect place for a study on human behavior, a behavior that is not without its props. For instance there is the cell phone user…that person is always texting someone. Or maybe they are just playing Pong…do people still play Pong? Then there is the business woman who is always shuffling though a file of papers or on her ipad or iphone and sometimes all three. Acting very much like she really isn’t there and this annoying location is just a mere inconvenience to her day. You can always tell the family member of a patient. They are the ones biting their nails and looking around desperately flipping through one magazine after another; funny how the patients never seem to be that nervous. It makes me think that as much as we have a lack of control in our illnesses…they seem to have less. Then there is the young mother with the new baby. She is talking just a bit too loud to the young cherub. You know full well that an infant of a few weeks has no idea what she is saying especially when they are sleeping…and I agree talking to them is certainly necessary for their development, but is it necessary to make us feel like we are somehow contributing to the development of this child by being the audience?

Now let’s talk about the environment of the office or the type of doctor everyone is there to see. Some waiting rooms are filled with life. Like the birthing centers…it has children playing, mothers exchanging tips and expectant first ones taking it all in. The subject of that waiting room is life and the future…this is not the case in a lupus waiting room. In a Lupus waiting room there can even be a child that is the patient. There are no toys for him to play with because he is among the minority. A rheumatology waiting room has its own quirks. There is the issue with the height of the chairs and the spacing of the furniture.

Ok I have to do it…let’s talk about the art, shall we? If I have to look at one more faded Monet’s Water Lilies, I think I am going to scream! I am sure if Oscar Claude Monet were in that room today and he saw how the print was now a hideous shade of faded blue, he himself would remove it from the premises with a mumbling of a French curse word thrown in here and there.

The first rheumatologist I saw had the most uninviting waiting room. It not only had the faded prints of dead artists but was also extremely crowed. All the chairs were attached to each other like duplex homes. If you wanted to adjust the thing you had to adjust your neighbor sitting next to you as well. Always a surprise the first time it happens. And if you were lucky enough to even get a chair they would all be too low to sit into anyway, as they were all the height of a folding metal chair. This doctor always overbooked his patients by 2-3 patients per visit. So you had to plan on being there an entire afternoon. In the waiting room it was a good 1-1.5 hours…followed by another 20-30 minutes in the examining room before you were even seen. Then back out to the waiting room for another 30 minutes until you are called for your blood to be taken. Every time I left that office I was so stressed I swear I was worse going out than when I had walked in…Which is why I eventually walked out and never went back.

Some doctors’ offices do tricky things to make us believe we are all having a good time. First off they remove all sources of time measurement. No clocks can be found anywhere. Time is merely measured by the ages of the faces around you. Some will pipe in music to create a soothing atmosphere. This is always a bad idea. Music in a doctor’s office is like reading a bumper sticker on the back of a car in traffic…in one fell swoop you can size up everything about that person…or in this case that practice.

The worst doctor’s office I was ever in was a dermatologist’s office. There I was covered in a rash from head to toe. Scars and lesions all over my face sitting next to 50 and 60 year old women all made up and waiting for their Botox treatments. I knew I was in the wrong place when everything around the room was advertisements for cosmetics, including one that had a smiling picture of the doctor himself that I was going to see. Some of the advertisements were actually blinking neon signs. It looked like a carnival of horror to a patient like me that was in so much pain. Oh and by the way…each visit was at least a 2 hour holding pattern in the waiting room. I was so angry on my last visit there that in the middle of his exam I stood up told him just what I thought of his beauty shop and walked out: this of course was after he tried to sell me his latest product.

Now I am by no means a cynic. I am actually a very easy person to get along with, even when I feel awful and look just as bad. I just wanted more and felt I deserved it. I dropped both those doctors in the same week and enrolled myself at a lupus center at a major teaching hospital in Boston. It was the best thing I had ever done on the road to fight this disease. When I arrived, the receptionist looked up at me and said “Debra?”

I was floored she knew who I was before I even opened my mouth. Looking around I saw there was only three other people waiting and about eight vacant seats with several of them being elevated. She handed me a paper to fill out and before I had it finished, my name was called. It was called by the doctor that was to examine me, not by a nurse who was just to put me in a room for another 20 minutes. I had much difficulty walking back then. Upon seeing this, the doctor gently took me by the crook of my elbow and helped me to the examining room. Respect, it doesn’t take much but it sure goes a long way.

The waiting room has many meanings. …it is a place to wait for your doctor…a room to hold you before you hear your diagnosis. It ultimately is a room that allows you for a brief moment a glimpse as to what the rest of your life may be… good or bad.

The Love of a Brother by Maddie Pearce

2011-05-16T19:39:00.000-07:00

The Love of a Brother by Maddie Pearce ©

First published in The Lupus Magazine

I am aware that May is Lupus Awareness month. And even though I want as much information about this disease to get out to the public, I want to take today to thank someone. He is my rock, my best friend and my brother. I believe that it is important to thank the people in your life that keep you going.

My parents and grandparents, as well as aunts, uncles and cousins… have always been there for me, in whatever situation I am facing. I am thankful for my entire family because they stick with me through thick and thin. But my brother is the only person that really, truly knows me. He has seen me at my worst; when I can’t get out of bed because of joint pain or am afraid to go out and do something because the Lupus has decided to write itself across my cheeks. He has seen me at my best; where even the most observant person can’t tell that a disease is part of who I am. And he gets my weird jokes that only make sense when he’s around.

I remember a time, a short while ago, when I was having one of my “pity parties.” I just couldn’t make myself believe that I was faced with the issues of living with a chronic illness. Yes, I understand that I have it. I really do! But sometimes, it is just so difficult for me to come to terms with it. My parents couldn’t calm me and I couldn’t calm myself. My older brother, who usually makes team names involving the word ‘awesome’ and dances to any beat (no matter if he’s in a club or a parking lot) promised to come to our house after work because he lives on his own. I had been upset for nearly three hours and I just kept saying that I couldn’t handle it. I couldn’t handle taking so much medicine or pain. I just wanted to be different and “normal.” Within five minutes of my brother’s company, I was laughing. He makes me want to be a better person, a better patient and a better sibling.

He told me that everyone has something they have to deal with. Some things are visible and some are not. As long as I can remember, before and after the Lupus, my brother has always been there for me whenever I needed him. If little arguments that last three minutes do not count, my brother and I have never gotten in a fight. There is a quote that I found a while back that says, “A brother is a friend provided by nature,” by Legouve Pere.

I agree with that completely. I know many siblings that hate each other and want nothing to do with each other, but I can’t even wrap my head around the idea. When someone asks if I am an only child, I don’t hesitate. My answer, every single time is this: “No. I have an older brother. And he’s my best friend.”

You have helped me become who I am today. For that, I thank you. I love you, Devin.

Lets Do This By Nelly Chester

2011-05-16T19:32:00.000-07:00

Let’s Do This! by Nelly Chester

First Published in The Lupus Magazine

It’s that time of year again… fundraising time!

As my family, friends and I lace up our walking shoes to get ready for May’s New Jersey Walk with Us to Cure Lupus at Jets Stadium, I am completely touched by the efforts of a few teenagers I know… My daughter, Jesenia and a few of her friends, Gabby, Dekiera and Gianna. Their interest and desire to help raise awareness and funds to support Lupus research in an effort to find a cure is more than inspiring.

These girls set aside an early Saturday morning, from 10am to 1pm, to sell Lupus Lollipops outside of a salon owned by one girl’s mother, in a neighborhood shopping plaza. They were ready with a sign in hand and a “let’s do this” attitude! I stood by proud and watched in amazement as they put all their effort in asking for donations for this cause. Moreover, it was moved by the generosity of complete strangers. A few of which either had Lupus, had a family member or friend with Lupus.

There were two times when I hid tears behind my shades… The first when one of the girls turned to me and said “I’m going to pray for you." And the second, when Gabby Caruso, the girl who organized this event, looked at me and said, “You are amazing Mama Chester, and don’t worry, we will find a cure.” It still gets me teary-eyed!

Their efforts aren’t stopping here. They want to do this again and have also asked that I reach out to their school administrators to see if they can continue their fundraising efforts within their school. I am so proud of them and inspired by their drive to make a difference. Thank you girls! Each step we take brings us closer to a cure and a world without Lupus!

Nelly Chester (“Bean”)

Livelaughlupus@gmail.com

http://walk.lupusresearch.org/goto/teambean

Teen Lupus - The Prose and Cons - Edited by Hannah Tubbs

2011-04-02T21:39:00.001-07:00

Teen Lupus Editor Hannah Welcome to 'Teen Lupus - The Prose and Cons' First Published in The Lupus Magazine Hello, everyone. If you will, allow me to preface this by stating the fact that I never thought I would do anything like this (not that you could choose to stop me from typing, but courtesy is a dying practice). I am here to try and provide a voice for all the younger people struggling with an autoimmune disease like lupus, which for a teenager, is not an easy task let me tell ya! Bottom line is that teens with lupus are simply not spoken for enough. I am here to offer a younger perspective and also share your thoughts and creative input in this new teenage lupus page we can call our own. Please do not feel hesitant to reach out! As you will undoubtedly learn from my future ramblings, I was diagnosed with SLE at a very fragile age. Being so young and susceptible to asinine opinions of the uneducated and uninformed, I first looked upon my disease with shame. Never in my wildest dreams did I think I would end up trying to reach out to the world through one of the only outlets I am remotely adept at… writing. I have always loved and appreciated the arts, but alas… you can appreciate something until the cows come home and still not have a stitch of God given talent. So I have decided (this advice is true when dealing with a disease too… come to think of it) to accept my own personal circumstances. If I had my way, not to mention an immediate influx of cash and talent, I would have already dropped platinum records, modeled in Milan, opened a restaurant, and become an icon in the fashion industry. Not very realistic, I know. Daydreams and fantasies aside, I have always had a way with words. What a humble first impression I am providing you with, right? In all seriousness, a major reason why I decided to write for The Lupus Magazine and jumped at the chance to edit this new exciting teen page, is that I truly know what it is like to feel like no one could possibly understand how hard dealing with an illness like this is. I am here to prove myself wrong. I am here to try and understand how you are feeling. To find others that can relate to me. And, hopefully, to serve as an outlet for so many of you who have trouble admitting what you are really going through, or simply cannot find the words. Now, I understand that not all of you want to read depressing stories about suffering from lupus. So, in addition, I will be attempting to search for the silver lining. Yes, diseases are horrible. But, they can also open your eyes to things you could not have discovered without dealing with something so horrible. This is where the Pro in “Prose & Cons” comes in. Please, because I will need your help with this, feel free to comment with some ideas or stories about how you caught a glimpse of the brighter side of your illness. I promise you, there is always a benefit… if you are willing to stick it out with me and search for it : ) Hannah ~ * Hannah is the founding Editor of this exciting new page for teenagers with lupus. You're welcome to contact Hannah or The Lupus Magazine if you'd like to contribute to this page. Hannah.tubbs@hotmail.com lupusnews@live.com.au

Welcome to The Lupus Magazine's First Birthday Edition by Geoff Thomas

2011-04-02T21:34:00.000-07:00

Welcome to The Lupus Magazine's 1st Birthday Edition Illustration by Penelope Barbalios © First Published in The Lupus Magazine As The Lupus Magazine celebrates its first anniversary online, the editor looks back and reviews the past twelve months of what is now known to many as TLM "Where do I start?" This must be phrase uttered by now almost twenty individuals each month as an editor sends them a gentle reminder that in his spare time, he has a magazine to get out there each month. As for looking back at a year of The Lupus Magazine, it’s not so much a matter of knowing where to begin, but more so, how to condense all that has materialised over the past twelve months. Beginning as an idea from a laptop on a coffee table on the other side of the world, I decided to establish The Lupus Magazine primarily to offer those suffering from lupus a creative outlet. I knew how difficult it was to become published so to speak, and if I hadn’t been touched by lupus myself (discoid/cutaneous), I would never have written articles and had photographs published as the result of a lupus awareness journey of my own around The United States in 2007. And after returning to school as a mature aged student, I felt for those who had to defer their studies due to lupus. So with less than a handful of writers and dear friends interested at the prospect of a unique, free, online magazine for those with lupus, the first edition went online on April Fool’s Day 2010 – No joke! After all the planning and finally getting the magazine online, I suddenly realised I had to back it up month after month, which was very daunting initially. I was working full-time and gradually the magazine consumed me… “What have I created here?” I distinctly remember a late night in April pondering about a feature article for the May edition, when I stumbled upon a lupus themed song online. Within moments, I was on the telephone to Lorie Streeter in America who had recorded “Wherever You Float” with her son Rhett… It was a touching song and Lorie saved me that month. But from that May edition came another realisation. Leen, a lovely young lady from Syria had offered to share her lupus story on a page I’d created and titled, ‘Meet Someone with Lupus.’ The page remains one of my proudest moments – with such honest and open stories contributed by those who want to share and support others, often new to lupus. And that page also made a statement of sorts. The Lupus Magazine was all-inclusive regardless of race and religion. And we were independent. We were happy to promote many worthy official lupus organisations worldwide, and just not one. We were, and continue to be, a free voluntary website without advertising and online stores. And a publication where the writers retain copyright to their submissions. Another thing I’m proud of as a creative type myself. With the only promotion of the magazine primarily being via facebook, the readership began to grow, helped along by inspiring interview subjects like the delightful Jenny Myers. And likewise, I was suddenly receiving emails from those offering to write for the magazine. The ‘rules’ were; keep it upbeat and no wolves or doom and gloom please… There appeared to be enough of that out there already regarding lupus online. And I probably broke another rule regarding the editing process… I wasn’t going to tell the girls what to write… If I did that, I assumed it would be fairly boring. Still relatively new to the ‘editing game’ I suppose my biggest challenge came in June/July when the runner-up of the Miss USA pageant, Morgan Woolard, made a statement on national television in America regarding her lupus being ‘cured’ or words to that effect. Naturally the online lupus community was outraged to say the least. However, I persisted and over a four week period, I’d managed to interview Morgan for our July issue. Now, I know a lot of people haven’t changed their minds about Morgan’s remarks at the time, but it was nice in a way to have negative feedback regarding the way I had interviewed her. A number of readers praised her for sharing her lupus experience and ‘bagged’ me for the way I approached it. But I didn’t mind at all. The Lupus Magazine was the only publication Morgan spoke to and she said she “trusted” the mag with her difficult story. Suddenly, the magazine had some cred. Maintaining trust with our writers, readers, and importantly our interview subjects was, and is, paramount. And as the numbers of girls writing for site was slowly growing, I felt the need to sit back and let the new talent shine. Some of you may disagree, but this magazine was never intended to be about the editor. Another turning point for the magazine was the realisation of the high numbers of Hispanic and Latino sufferers out there. Kindly, the actress Patrizia Hernandez officially launched our ‘Spanish’ edition – La Revista de Lupus – in August last year. It’s part of the magazine we’re still working on, yet with our dear Nancy volunteering to translate many of our articles, time is a factor for any voluntary publication. And as for Patrizia, she formed part of our feature edition highlighting the lupus themed film, Love Simple, along with the writer and director Mark von Sternberg. Other notable subjects have included Shante Broadus, the wife of Snoop Dogg, golfer Salimah Mussani and Chris Wilcox from The Detroit Pistons. And as the months rolled on, it became apparent a number of the women who featured on our ‘Meet Someone with Lupus’ page, and indeed, a number of our interview subjects, were now writing regularly for the magazine. It was also very satisfying that over time, we were attracting younger writers to the magazine too. What many would not know is that in November last year; I was inches away from giving The Lupus Magazine an early retirement. It was just becoming too much to deal with. I had never considered coming home to twenty messages after work on some days and spending any time I had spare compiling the next issue. I was content to just have a facebook page where the girls could post their articles under ‘The Lupus Magazine Banner.’ It took a few midnight telephone calls from friends in America to encourage me to keep on going, as the magazine was ‘unique’ and ‘one of a kind’ in their words. But a major factor related to those messages I was receiving after work each day, and many from our readers. To hear that one of our writers had inspired them, or indeed the magazine had become part of their lives meant it had a purpose – and an important one. And coincidentally, around the same time I was seriously considering ‘ditching’ the mag, the requests to write for the magazine increased. But my biggest regret would have been walking out on my family. Over the past twelve months, I’ve created not only a magazine for those with lupus, but I’ve gained almost twenty sisters and even a facebook daughter - Namely, all the girls currently writing for The Lupus Magazine. Yes… I feel very isolated living so many miles away from them, but they have been an inspiration and I thank them all. Each and every month, I hear how one is not doing too well and it’s a shame I can’t just give them a huge hug. And I’ll be honest, like every family there will always be times where we don’t all get along or have the same point of view, but ultimately, we’re all in this together. And I am proud the magazine has brought many of the girls together as genuine friends. And yes, ‘managing’ twenty women can be a task at times, yet a very rewarding one. They are indeed the sisters I never had, they often humble me too much for my own comfort and they absolutely love apostrophes! Ultimately, The Lupus Magazine is for you the reader, a very important member of our family. I know we’re not perfect and we’ll never pretend to be. But we all have our hearts in this for the common cause of worldwide lupus awareness and support. My sincere thanks go out to everyone who has made this past year a rewarding and positive journey. While we haven’t had the time or resources to promote The Lupus Magazine extensively, it’s not really the point. It’s pleasing to see the followers and readers of the magazine have mainly discovered us by the old practice of ‘word by mouth.’ If we can be a lupus voice to promote further awareness and support, we’ve done our job. Moving into a new year, we have introduced a new specific teen page for those with younger lupus sufferers and we now have a mission statement, not to mention more inspiring and creative contributors. I shall now attempt to ‘fade away’ into the background and let the writers and readers of The Lupus Magazine enjoy a new year online and continue to make The Lupus Magazine what it is today… As always, Geoff Thomas

Why Benlysta isn't for everyone... The Changing Face of SLE Therapy by Kim Nault

2011-04-02T21:27:00.001-07:00

The Changing Face of SLE Therapy And why Benlysta isn't for everyone... By Kim Nault © First Published in The Lupus Magazine There is an immense amount of excitement and hope brewing among the SLE population with the recent FDA approval of the lupus treatment, Benlysta® (belimumab). This is the first medication the FDA has approved for SLE in over fifty years. Benlysta® (formerly called LymphoStat-BT) was developed to disrupt activation of B lymphocytes by interfering with BLyS, a protein required for B cell activity. The active ingredient is Monoclonal antibodies (mAbs). Benlysta lowers BLyS which is thought to be a significant player in causing the disease. Benlysta has less toxic side effects and less immuno-suppression than current DMARDs (disease-modifying antirheumatic drugs). When Benlysta is given in combination with other lupus therapies; it has been clinically shown to decrease disease activity, and in many cases a reduction in steroid use. While the FDA approval of this novel DMARD is indeed a cause for celebration, it still has yet to gain the confidence of both patients and practitioners in effectively treating those with vital organ involvement. Despite the fact that the Benlysta phase III studies did show objective measures of remittance in immunology, musculoskeletal and mucocutaneous manifestations, the studies did exclude people with active nephritis or central nervous system involvement. As a result, patient populations who are battling the more serious forms of the disease are not finding cause for immediate celebration. Interestingly, the FDA has approved Benlysta® for SLE, but the dispensing label states that it is not known if Benlysta® is safe and effective for patients with either severe active lupus nephritis or severe active central nervous system lupus. I had the opportunity to ask Holly V. Russell, US Media Relations at Glaxo Smith Kline some questions about Benlysta® (belimumab): What is the active ingredient in Benlysta? How does it work? BENLYSTA is a BLyS-specific inhibitor that blocks the binding of soluble BLyS, a B-cell survival factor, to its receptors on B cells. BENLYSTA does not bind B cells directly, but by binding BLyS, BENLYSTA inhibits the survival of B cells, including autoreactive B cells, and reduces the differentiation of B cells into immunoglobulin-producing plasma cells. BLyS is a naturally occurring protein discovered by HGS in 1996. BENLYSTA (belimumab) is a human monoclonal antibody drug. Benlysta therapy is for moderate to severe SLE with active antibody production, shown through blood serum tests. Are those active antibodies, anti-dsDNA antibodies and ANA? The antibodies are ANA and/or anti-ds-DNA. *Authors note: in clinical phase studies patients with active SLE were on stable immunosuppressive agents; Active SLE was defined as a SELENA SLEDAI disease activity score >6; at screening with H/O + ANA (1:80) and/or anti-dsDNA (>30 IU/mL) at 2 separate times. Please explain the dosing schedule The recommended dosage regimen is 10 mg/kg given intravenously only at 2-week intervals for the first 3 doses and at 4-week intervals thereafter. The infusion process is expected to take about an hour. Benlysta can be used along with other lupus (DMARD) medications and which would those be? Current standard therapy may include anti-malarial medicines, a variety of immunosuppressive and cytotoxic agents, NSAIDs, with corticosteroids as the mainstay of therapy. Patients in the Phase 3 clinical trials all received a background of various standard therapies, with the exception that use of other biologics and intravenous cyclophosphamide was not permitted. Kidney and central nervous system involvement are two of the most serious forms of SLE. Can GSK explain how Benlysta® has been approved for ‘severe active lupus’, yet the Benlysta® dispensing pamphlet states that Benlysta is not recommended for people with severe active forms of kidney and CNS lupus. That being said, what severe forms of the SLE population does this medication really target? BENLYSTA (belimumab) is a human monoclonal antibody drug that was approved by the U.S. Food and Drug Administration on March 9, 2011 for the treatment of adult patients with active autoantibody-positive, systemic lupus erythematosus (SLE) who are receiving standard therapy. The approved indication is not specific to mild, moderate or severe SLE. The label for BENLYSTA includes the following limitations of use: The efficacy of belimumab has not been evaluated in patients with severe active lupus nephritis or severe active central nervous system lupus, and has not been studied in combination with other biologics or intravenous cyclophosphamide. Use of belimumab is therefore not recommended in these situations. The Phase 3 studies were not designed or powered to determine improvement or worsening in individual organ systems. Patients with severe active lupus kidney disease or active CNS lupus were excluded from the trials because of the likelihood that these patients would require changes in medications and therefore not be considered to be on a stable SLE treatment regimen required for enrolment in the Phase 3 trial. Efficacy studies in these lupus populations would require a different primary endpoint than those for overall disease activity trials in SLE. The reduction in disease activity seen in the SRI was related primarily to improvement in the most commonly involved organ systems namely, mucocutaneous, musculoskeletal, and immunology. A lupus nephritis study is a post-approval commitment. SLE disproportionally affects African Americans and people of African descent than compared to other ethnic and racial populations. Benlysta has had a poor response rate in these populations during its studies. The FDA has recommended that GSK continue further studies and reporting regarding the reasons to the lack of response in the African decent/African American SLE populations. Have those studies begun? HGS and GSK are working with the FDA on the design and timetable for this post-marketing commitment. When will Benlysta be available on the US market? We expect to have BENLYSTA available to physicians and patients in the U.S. by the end of March. When will Benlysta be available in Europe, Australia, New Zealand and other countries? GSK submitted a Marketing Authorization Application (MAA) for belimumab to the European Medicines Agency (EMA) in June 2010. With usual EMA timelines, we expect to have a decision from EMA in the second half of 2011. Regulatory applications have also been submitted and are currently under consideration in Canada, Australia, Switzerland, Russia, Brazil and The Philippines. We anticipate regulatory submissions in a number of additional countries during 2011. ...... Another interesting and positive note for lupus research, is that the Human Genome Sciences devised the SLE Responder Index (SRI) (for the Benlysta phase trials), which is used as a relatively high bar for response including tests of organ involvement (the BILAG score) and overall disease activity (SELENA SLEDAI) that FDA favors in lupus clinical trials. The Human Genome Sciences SRI is a composite of three existing objective and well-defined measures of disease activity and therapeutic response. The SRI composite was accepted by the FDA and will continue to help pave the way in other future clinical lupus trials. The approval of Benlysta marks a much needed and encouraging milestone for those living with and those treating the disease. More precise clinical trials need to be conducted on patient populations battling active vital organ involvement and the therapeutic responses substantiated therein. Let us hope that inclusive clinical studies with Benlysta, namely in the kidney, central nervous system and blood vessel involvement populations prove to be an effective treatment as well. Benlysta is a historical event and a promising sign of therapeutic potentials for many lupus patients. Yet, while this is a large step toward the prospects of therapeutic options in SLE, many other steps will be required to move forward with the future alternatives in treating The Great Imitator. *The author wishes to thank Holly V. Russell, US Media Relations staff, at Glaxo Smith Kline, makers of Benlysta® (belimumab) for the interview and her assistance. References: Human Genome says average annual price of Benlysta treatment $35,000: Human Genome said the price for Benlysta has been set at $443.18 for a 120 mg vial and $1,477.26 for a 400 mg vial. The average price for an annual course of treatment would be approximately $35,000. http://www.theflyonthewall.com/permalinks/entry.php/HGSIid1391853/HGSI-Human-Genome-says-average-annual-price-of-BENLYSTA-treatment- FDA Benlysta® Press Release: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm246489.htm Benlysta® Website: http://www.benlysta.com/index.html Benlysta® Gateway Patient Support Program: http://www.benlystahcp.com/benlysta_gateway Systemic Lupus Erythematosus Disease Activity Index SELENA Modification: http://www.rheumatology.org/practice/clinical/indexes/sledai.asp Novel Evidence-Based Systemic Lupus Erythematosus (SRI) Responder Index: http://onlinelibrary.wiley.com/doi/10.1002/art.24698/pdf by Kim Nault ©

Meet Someone with Lupus - Nelly Chester

2011-04-02T21:21:00.000-07:00

Meet Someone With Lupus Live, Laugh, Lupus by Nelly Chester First Published in The Lupus Magazine Oh sure I don’t "look" sick, but as much as I dislike saying it, I am. I have Lupus. There’s no shame in it. I want my voice heard and heard loud and clear! I want awareness spread among all those I can reach out to. For years I knew something was wrong. The only answer I would get from the primary doctor was that I was anemic. With my first pregnancy I was carrying twins and lost one. My second pregnancy I was hospitalized several times for "unknown" reasons. I pushed through all the signs, took the iron supplements my doctor insisted upon, worked an extremely stressful job with a grueling commute and wasn’t home many nights until after my kids were already asleep. One day my body just had enough! It was Christmas 2008 going in the New Year of 2009 when I got so sick. It was unlike anything I had ever experienced. Since it was during the holidays the only place I was able to be treated by was a walk-in urgent care center nearby. I didn’t go to the hospital because I didn’t want to be away from my husband and children during the holidays. I was given different antibiotics for 3 weeks and they barely did anything. Finally, when the pain and fatigue began to subside I asked the doctor to please run an extensive blood test. I explained that for years I felt as if my primary doctor didn’t hear my voice or address my concerns. After a few days, I was called in for the results. The doctor began to explain all my levels are suggestive of an autoimmune disease such as Lupus. He insisted I go to a Rheumatologist as soon as possible for confirmation and treatment. The next few weeks were spent going to four different specialists, all to confirm that I did in fact have Lupus. Why me? So what now? Well, it has been over two years later and after spending some time in denial, I have somewhat of a grip on this illness. When friends and family ask me how it feels to have Lupus, I use this reference... if you are lucky, in its simplest form, it’s kind of like having a permanent flu. The feeling when you cannot get up at all from bed, chills/sweats, aches, pains, fatigue, lack of focus/memory and the list goes on. While so far I consider myself a lucky lupie because my organs are functioning well at present, I do know how it can progress into a life-threatening disorder that can affect the heart, kidneys and other organs. Sure I have good days when I can put my party shoes on and paint the town an assortment of colors, but then there are days that getting up isn’t even an option. Lately these days seem to outweigh my good days with every morning resulting in a guessing game. Hmmm, let’s see… can I actually move my legs today? What seems to frustrate me most is that making plans in advance is simply not feasible because of the "guessing game" and I never know when to expect a flare up. One thing I don’t play the guessing game with is my determination and the strength within that keeps me fighting this fight with all of my might! Oddly enough, I have to thank Lupus. Now why in the world would I do that? Well, in many ways it gave me a deeper appreciation for life. I was so caught up in the hustle and bustle of it all and sometimes lost focus on was most important. While Lupus may have taken from me, it has also given me something precious. It has given me a keen awareness of the incredible, enduring value of friends and family. I no longer take anything for granted and cherish every single day life has to offer! I wish all of my fellow lupies, my friends and family a healthy and happy journey. Please remember, in bad times choose to grow stronger, in the good times choose to enjoy fully, and in all times, choose to be grateful! Nelly Chester (“Bean”) livelaughlupus@gmal.com http://walk.lupusresearch.org/goto/teambean © Nelly Chester 2011

Changing Bitter into Sweet by Nancy Arocho

2011-04-02T21:15:00.000-07:00

Changing Bitter into Sweet By Nancy Arocho First Published in The Lupus Magazine "If the sky gives you lemons, make lemonade." That was nephew told me at the hospital once when I was recovering from a bad flare and when he was 6 years old. How could a child understand that I had very sour lemons dropped in my life? Although surprised, today I'm still thinking and trying to apply what he said every day. How can I turn the fact that I have a chronic illness into something positive or a little more easy-going? Every time I feel tortured by aches and pains I remember my mother who raised 8 children. Over time she had other health conditions. Unbearable pain which I thought she exaggerated because even then she continued doing things that you would think no one in pain would do, but she was taking responsibilities that involve taking care of her family, of me. Who am I to complain when despite unbearable pain she still kept going? But now I have the opportunity to say, “Mom I feel you.” I can say I understand her and she understands me. This has made me a stronger more compassionate person instead of staying sour and angry. Another lemon that dropped in my life was my distrust of people, my inability to share feelings with others; which later turned into love by being loved by someone who supports me and cares for me no matter what has changed physically and emotionally. And from all the many friends I had before my lupus flares and falling disabled, only a few remained there next to me when I most needed friends. Although it may seem insignificant, having the internet and a computer, where I do constant research on lupus and discovering other people’s symptoms and experiences while sharing mine is a blessing. Now I’ve found the tools to explain to those around me what I’m going through and why. Later I had the great blessing to extend my experiences, spread awareness and help others to understand and accept themselves with lupus. Hey, know your enemy and learn to live with it because lupus came into our lives to stay until we find a cure. Lupus invaded my body and I became bitter and angry. I did not want to take my medications; I forgot to take them or would take the wrong dosage. I was a mess. I turned out paying a price for these mistakes that then left me bed bound and practically living in the hospital. It was pouring lemons in my life. My lupus was invading my lungs, I wasn’t receiving enough oxygen in my body, I’ve heard of all the brain damage this could cause. I had panicked. Suddenly the progression of the illness in my lungs stopped, but because of the chemotherapy treatment I was sterile... I cannot have children. Maybe it was for the best in my case. I like to travel. Being in a wheelchair would not make travelling with a baby by myself easy. A little puppy came into my life. She’s a small breed and keeps me busy, makes me smile and feel capable of caring for a helpless being. I have my moments where I cry and cry but it’s because I have to let out the load I bear, but then I dry my tears, and then I see the beauty of life: all the wonderful places you can visit, feeling free when I can drive and travel and the wonderful people who come to your life. I try to appreciate the small things in life, when I’ve turned those sour lemons into a sweet lemonade. Before, I just couldn't cry or mourn the loss of health and ability to walk like I used to. It is normal and healthy to cry to a point. A lot of people tell me how they cry so much because of their different situations and for some reason they feel guilty to do it. I tell them to cry out the torments. I know a loved person who’s had three devastating loses in her life but has never cried them out... she was too shocked. So what happened? She kept it all inside with no one to talk it with. She fell into a deep depression for most of her life and then permanent illnesses from stress emerged. Illnesses that ironically began after the last two loses; which both were her children. Maybe if she had help dealing the process, she could have been more aware of herself, she barely slept or ate worrying for them. I want to tell you to cry and talk about what you're going through with someone. There is a need to feel heard and understood in order to understand yourself. There are many support groups on the web with people you can feel familiar with. My advice... Learn to know your body, what gives you flares and what are the effects of your medication on you. Talk to your doctor and let him/her know how you feel about your illness and ask all the questions that come to your mind. Discuss with your doctor if you are experiencing depression and he or she can tell you ways to treat it. There are no stupid questions, especially when your health is involved. When you understand what your going through, turn it into something positive (that's when you take your bitter lemons into a refreshing lemonade). Then do your duty and help others spread awareness with your experiences and knowledge. Many people go through the same thing you are going through and don’t have the opportunity to understand what is happening to them. They live with their lives with their sour lemons not knowing what to do with them. Teach them you what they can do. By Nancy Arocho © Nancy Arocho kindly volunteers to translate our articles and is the editor of the Spanish Edition of The Lupus Magazine Contact Nancy: tengo_lupus@live.com Nancy on the web: Viviendo con Lupus Living along with Lupus Convirtiendo lo amargo a dulce Por Nancy Arocho "Si el cielo te da limones, aprende a hacer limonadas". Fue lo que me dijo mi sobrino de 6 años (en aquel momento) cuando me visitaba en el hospital. ¿Cómo un niño pudo entender q habían caído limones muy amargos en mi vida? Aun sorprendida, hoy yo sigo pensando y tratando de aplicarlo cada día. ¿Cómo puedo convertir el tener una enfermedad crónica en algo positivo? Pues cada vez que me tortura el dolor pienso en mi madre quien crió 8 niños. Con el tiempo le fueron dando otras condiciones. Dolores insoportables los cuales creí que eran exagerados porque aun así ella continuaba atendiendo su familia, atendiéndome a mí. ¿Quién soy yo para quejarme si yo no le creí lo fuerte que son sus dolores y cansancio? Pero nunca es tarde y hoy la tengo viva y le puedo decir q la comprendo y, ella me comprende a mí. Otro limón en mi vida fue mi desconfianza hacia la gente que luego se transformó en amor al ser amada por un ser que me apoya y se preocupa por mí sin importar como haya cambiado física y emocionalmente. Y de tantos amigos que tenia, solo unos pocos quedaron ahí viviendo mis decaídas conmigo. Aunque para muchos parezca insignificante, el internet y una computadora con la cual investigué sin cesar que es lupus y cuáles son los síntomas y las experiencias de otros. Así encontré cómo explicarle a los que me rodean qué es lo que me sucede y porqué. De la misma manera me ha nacido compasión con otros. He aprendido y me he identificado con muchos. A partir de aquí he tenido la gran bendición de extender mis experiencias y he ayudado a otros a aceptarse con su lupus. Oye, conoce bien a tu enemigo y aprende a convivir con él. Pues lupus llegó a tu vida para quedarse hasta que encontremos una cura. Cuando lupus invadió mi cuerpo me volví amargada y enojada. No quería tomar mis medicamentos, se me olvidaban, tomaba de más o de menos de las pastillas recetadas. Todos estos errores me dejaron de cama y prácticamente viviendo en el hospital. Llovían los limones en mi vida. Mi lupus estaba invadiendo mis pulmones, no entraba suficiente oxígeno a mi cuerpo. Repentinamente el progreso de la condición en los pulmones se detuvo, pero quede estéril como efecto secundario del tratamiento de quimioterapia, ya no puedo tener hijos. Tal vez fue lo mejor en mi caso, viajo entre tiempos y... estando en una silla de ruedas no sería fácil llevar un niño. Llegó a mi vida una perrita que me hace sonreír y capaz de cuidar un ser indefenso. Tengo mis momentos en que lloro y lloro pues tengo que vaciar esta carga que llevo, pero luego me seco mis lágrimas, las intento convertir en limonada y entonces veo la hermosura de la vida. Antes, yo no podía llorar y se me acumulaba ese odio y coraje que me activaban aun mas mi lupus y de ahí para el hospital. Sé que es normal y saludable llorar hasta cierto punto. Muchas personas me cuentan como lloran por sus situaciones y por alguna razón se sienten culpables por llorar. Yo les digo, llora, saca esto que te atormenta. Mi madre, en 3 ocasiones en que fallecieron tres seres muy cercanos, no podía llorar por más que quisiera pues el impacto fue muy fuerte en las 3 ocasiones. ¿Y qué pasó? Calló en una fuerte depresión durante casi toda su vida y luego le surgieron enfermedades que irónicamente comenzaron después de sus últimas dos situaciones que han sido difíciles del olvidar. Yo te quiero decir a ti q me lees que llores y hables de lo que te está pasando con alguien. Necesitas sentirte escuchado y comprendido, escucharte y comprenderte a ti mismo, existen muchas páginas de apoyo, y personalmente estoy yo, me puedes contactar y entre muchos podemos darte apoyo y tratar de resolver problemas juntos. A ti que me lees, conoce bien tu cuerpo, lo que activa tu lupus, los efectos de los medicamentos en ti. Infórmate, habla con tu doctor y pregúntale lo que se te ocurra sobre tu enfermedad o como te sientes al respecto, él puede detectar si estas en depresión y ofrecerte ayuda para tratarla. No hay preguntas tontas, y si se trata de tu salud mucho menos. Mientras obtengas tus respuestas conviértelas en algo agradable (ahí es cuando tomas tus limones amargos y los endulzas a una rica limonada). Luego, haz tu deber y ayuda a otros con tus experiencias y conocimientos. Son muchos los que pasan por lo mismo que tú y no han tenido la dicha de comprender lo que les está pasando y viven con sus limones amargos sin saber qué hacer con ellos, enséñales tú lo que se puede hacer. Por Nancy Arocho© Nancy Arocho © Delaware, EE.UU. Nancy Arocho: tengo_lupus@live.com

Learning to Laugh with Lupus by Tiffany-Marie Peterson

2011-04-02T21:07:00.000-07:00

Learning to Laugh with Lupus by Tiffany-Marie Peterson © First Published in The Lupus Magazine Discovering ways to stay uplifted when diagnosed with a chronic illness such as lupus can often prove to be quite a challenging task. We all know how dark and narrow the road can be when battling lupus and it's wide range of symptoms. This is why it's important to always see the silver lining in every storm cloud. It might be tough at first but we can all smile through the pain, and in some cases even forget we were in pain! Some of us may be faced with questions such as: How can I be happy when I'm in pain? Is it wrong to make jokes about my illness? Can humor really distract me from pain? I believe it is possible to have happy moments despite pain. There are only two ways to approach any type of situation; either negatively or positively and why would you choose to be dark and dreary when it's so much lighter on the heart to choose to see that silver lining! Still need help? No worries! It's a pleasure to introduce you to Mark Magee! Mark is a man of many talents who resides in Portland, Maine. This month he has decided to share the inspiration behind his daring cartoons full of what I like to call "sick humor" (humor that chronically ill patients can relate to). So why has Mark Magee decided to use his cartoon talents to highlight the humor in lupus? His inspiration came from his mother who had a late diagnosis and lived with lupus for over twenty years before her passing in 2005. She was courageous and daring and would push her oxygen tank around in a baby stroller when shopping needed to be done! Instead of wallowing in pain, Mark's mother chose a very light-hearted path on her journey with lupus. She believed that no matter how difficult things may get; one must always keep their sense of humor. I asked Mark to share one piece of advice he strongly believes; as a message to all battling lupus. He said, "Take the time to see humor in every situation. It truly helps you to get through the tough times!" I couldn't agree more. Laughter is truly some of the best medicine. I have shared countless chuckles with lupus patients on twitter declaring ourselves "Lupie Gangstas" for braving the sun, proclaiming our butterfly rashes as free blush/make-up, and even using our pill cases as maracas! The best part is that we all forgot about our aches and pains and shared some much needed and unexpected laughter. "Humor is dangerous to your illness"-Steven M. Sultanoff, PhD Just imagine that every time you chuckle "lupus" is shivering in a dark corner somewhere begging you to stop hurting him! Bwhahaha! Remember to live, love, and more importantly laugh! Life with lupus can be rough but only you can choose to live it with positively. Stay strong lovies! * Copyright Mark Magee & Tiffany-Marie Peterson © El lado liviano de Lupus Por Tiffany Marie Peterson© Descubrir maneras de permanecer levantada cuando se les diagnostica una enfermedad crónica como el lupus a menudo puede resultar una tarea bastante difícil. Todos sabemos lo oscuro y angosto que puede ser el camino cuando luchas contra el lupus y la amplia gama de síntomas. Por eso es importante ver siempre el lado bueno de cada nube de tormenta. Puede ser difícil al principio, pero todos PODEMOS sonreír a través del dolor, y en algunos casos incluso olvidar que estábamos en dolor! Algunos de nosotros se puede enfrentar con preguntas como: ¿Cómo puedo ser feliz cuando estoy en el dolor? ¿Está mal hacer bromas acerca de mi enfermedad? ¿Puede el humor realmente distraerme del dolor? Creo que es posible tener momentos felices a pesar del dolor. Sólo hay dos maneras de abordar cualquier tipo de situación, ya sea negativa o positivamente, y ¿por qué optar por ser oscuro y triste, cuando es mucho aliviana más al corazón de elegir a ver esa línea de claridad! ¿Necesita más ayuda? No se preocupe! Es un placer presentarle a Mark Magee! Marcos Magee es un hombre de muchos talentos que reside en Portland, Maine. Este mes se ha decidido compartir la inspiración detrás de sus atrevidos dibujos de lo que me gusta llamar "humor enfermo" (el humor que los pacientes con enfermedades crónicas pueden relacionarse). ¿Por qué decidió Mark Magee utilizar sus talentos de dibujos animados para resaltar el humor en el lupus? Su inspiración vino de su madre que tenía un diagnóstico tardío y vivió con lupus durante más de veinte años antes de su muerte en 2005. Ella fue valiente y emprendedora, y empujaba su tanque de oxígeno dentro de un cochecito de bebé cuando había que ir a hacer compras! En lugar de revolcarse en el dolor la madre de Mark escogió un camino muy alegre en su viaje con lupus. Ella creía que no importaba lo difícil que las cosas podían volver, uno siempre debe mantener su sentido del humor. Le pregunté a Mark que comparta un consejo que él crea firmemente, como un mensaje a todos luchando contra el lupus. Él dijo: "Tómese el tiempo para ver el humor en cada situación. Realmente le ayuda a superar los momentos difíciles!" No podría estar más de acuerdo! La risa es realmente una de las mejores medicinas. He compartido infinidad de risas con los pacientes con lupus en twitter declarándonos "Gangstas Lupie" (lupis mafia) por desafiar el sol, proclamando nuestras erupciones mariposa como maquillaje rubor gratis, e incluso con nuestras cajas para píldora como maracas! La mejor parte es que todas nos olvidamos de nuestros dolores y compartimos algunas tan necesarias e inesperadas risas. "El humor es peligroso para su enfermedad", Steven M. Sultanoff, PhD Solo imagínate que cada vez que ries "lupus" está temblando en un rincón oscuro en alguna parte pidiendo que deje de hacerle daño! Buajajajaja! Recuerde que debe vivir, amar, y lo más importante REIR! La vida con lupus puede ser durA, pero sólo usted puede elegir vivirLA con positividad.

Taking it One Day at a Time by Patty Gaetz

2011-04-02T20:59:00.000-07:00

Taking it One Day at a Time by Patty Gaetz © First Published in The Lupus Magazine I stumbled upon The Lupus Magazine less than a year ago. Looking back, I think this was an emotional turning point for me. Here, I met a group of people that were facing the same day to day struggles and crisis that I was going through – and at that time I was feeling very lost and alone, trying to keep one foot in front of the other while I figured out how I was going to live with/through lupus. And here was this amazing group of people, some who had been there and done that, others who were walking in my shoes. They were sharing their personal stories, triumphs, sorrows and inspirations. Perhaps, without even knowing, they have been my rock. I can be “out of the office” for weeks, but if I have a question, need to pout or vent, have good or bad news to share, they are there. I know they understand and that they are listening. I’ve never personally met any of my friends at The Lupus Magazine, but I would walk through fire for any one of them. Our family at The Lupus Magazine has grown and as they say, there’s strength in numbers! The Lupus Magazine has helped me to accept my lupus and limitations in a much more positive way than I ever could have found on my own. Happy Birthday everyone! Thank you for your love and support ~ I hope I can return some of the love and hope you have all given me! * Also, the Lupus Foundation of Minnesota is planning our first annual Walk For Lupus in Duluth, MN in September, 2011. This location is a great addition to our Walk For Lupus events in Rochester and the Twin Cities. Watch The Lupus Magazine for more details! Patty Gaetz

A Daily Reflection of a Mother with Lupus - by Maria Pfeifer

2011-04-02T20:56:00.000-07:00

A Daily Reflection of a Mother with Lupus © by Maria Pfeifer First Published in The Lupus Magazine "Experience is a brutal teacher, but you learn. My God, do you learn." — C.S. Lewis This month is the one-year anniversary of The Lupus Magazine and I wasn’t sure what to write about as a celebratory article to express my gratitude in participating with such a wonderful group of people. I have recently been working with some young mothers with lupus and the frustrations or concerns have been brought out in past issues here as well. It is the sense of community and connections as women that has brought me to my theme today. How often do I hear other mothers mention their grief in not being the mom they want to be? How often have I felt that myself – with the imposed restrictions I have in employment and income, energy and fun, socials and holidays, relationships and isolation? For me, once I was able to get my lupus to negotiate and work with me better, I faced challenges that I know deeply affected my daughters. It pains me to think that, one day, those fears and confusing memories may resurface in my girls. The mysterious disappearance of their mom for five days, hospitalized and uncertain whether she was coming home. The anger and fear they experienced from their father’s yelling and refusal to come visit her. Their trip to Disneyland, not knowing that their mother believed it to be her final gift to them. The machinery attached through her nose to test her “tummy”. The massive orange jugs periodically found in the refrigerator with a sign warning them with “Do Not Drink.” The days when mommy couldn’t talk right or read. The endless days of noodles and the treats of full meals when mom could manage it. The hurtful things their father would tell them about mom being lazy and looking for attention. The mysterious boxes of food on our front doorstep, left by “angels.” Or, how about the way mommy looked - one minute like the skeletons on Halloween and, within a couple of months, like Humpty Dumpty? Just writing these thoughts create a flood of sorrow, regret, anger, concern and more memories cascading beyond the walls I’ve built up with the desperate hope it would all dissolve if left hidden. I cry violently, trying to restore courage and denial in order to protect them - protect myself. I have both my girls here at home, one from college and the other free of high school, for Spring Break. Time to do whatever they want, whenever they want and with whomever they want for seven glorious days. Although I don’t hold them back from being with their friends or make any demands of their freedom, they both informed me that they want to be here at home, with me. Granted, my health causes much less trauma for us these days and our lives living simply are so natural to us that we don’t feel as if we’re missing out on anything because of our budget. What touches my heart, though, is that they aren’t home with me out of concern, compassion, worry, or to help me. They want to actually be with me. I clearly still hold onto a great deal of emotion from those frightening days of uncertainty and physical betrayal. I know I still harbor resentment against those people who made things even more painful than my body was causing me at the time. Yet, it is days like to today when I’m blessed with the assurance that, no matter what lupus or others put me through in the past, my girls are okay. In fact, they are the gentlest, kindest, and most sincere young adults that I could’ve ever thought possible, for all they went through. As a case worker, I was always astounded at the resilience of children in some of the most horrific conditions and situations I would come across. We often hear how children are stronger than we give them credit for, but I’ve never thought it to be true in the long run. Violence and neglect, however, are very different from a mother going through illness. And, as a currently ‘well’ lupus patient still standing here today, I feel slightly embarrassed when I think of all of the children who actually lose their parents. I am unbelievably fortunate to be here watching my daughters grow and blessed with the chance to be beside them in any way I can manage. I write this to those of you out there, struggling with lupus or any illness. The role of mother is not only to be caretaker or “the-one-who-walks-on-water.” We are also teachers and examples for our children to learn from about problem solving, survival, gratitude and the value of self-worth. If we cannot give our children the things or time that we wish we could, we can give them those things in less grandiose measurements filled with love and hope. To burden our hearts with our limitations leaves them with the fear and concern that we try so hard to protect them from. That love and hope offers us, as we learn over time, a wonderful distraction for both them and for ourselves. That is what they truly remember. So, cherish your children today. Let go of worries about tomorrow and rejoice in the fact that you are here, in any way you can be, and put them to bed tonight knowing that today was a beautiful day. There was laughter, a treat, a hug and kiss. Mommy smiled ~ something I’ve been told by them so many times and I didn’t think it to be a big deal. It is ~ my God, it truly is. by Maria Pfeifer ©

TLM - The Lupus Miracle by Shoyea Gaye Grant

2011-04-02T20:50:00.000-07:00

TLM - The Lupus Miracle by Shoyea-Gaye Grant First Published in The Lupus Magazine I have a disease that has robbed me of my health and the ability to fully enjoy the latter years of my teenage life. A disease that has seen it fit to thrust upon me hospital sleepovers, dishes and desserts of pills, all night parties of pain, buckets of tears and often, fountains of frustration… Sounds like I’m moping, wallowing in self pity and counting my losses, doesn’t it? Well… No. Quite the contrary. For I know there are many other persons going through the same thing or even worse, but in addition, have no one to turn to when the world doesn’t understand, or no home, no family. I have been blessed to have, not just one person to turn to, but a group of people; not just one home, but two homes; not just one family, but two families. They call The Lupus Magazine, TLM. I call it TLM, The Lupus Miracle. Miracles are dramatic but sometimes gradual. They are sometimes unexpected and sometimes hoped for. They can be seen in the big things, but also in the things so little and simple that they are often overlooked. Miracles come in all shapes, forms and sizes but can be distinguished by the fact that despite differing characteristics, they all have two things in common: They are extraordinary and they are life changing. I believe in miracles. Lupus has taken a lot from me, but I cannot overlook the fact that it has given me some amazing things also, one of which is the miracle of TLM. This magazine has not only provided an avenue through which I can help others, but it has helped me in more ways than I could have ever imagined. It has taught me that making a change is not a far-fetched dream but is in fact, within my grasp and reminds me when I forget, that even in the midst of a disease, constant positive outlook (with a family of warriors behind me) can dramatically change the outcome of my situation. Happy Anniversary TLM. This is my tribute to you: TLM - The Lupus Magazine Different ages, languages, cultures, Different countries… worlds apart. Different perspectives, dreams, experiences, One disease, one family, one heart. We laugh, we talk, we empathize with each other, Or just listen while someone vents. We sometimes even get angry at each other, But understanding is never spent. Many people see miracles only in occurrences, However, having people who reach out and who share, Who open up their hearts and lives to touch another, Is nothing less of a miracle, so dear. I have learnt that some miracles are to be created, They stand waiting at our hearts’ door. Through giving myself to others, as I was taught, I can be the miracle that someone is waiting for. When Lupus put her mark on my cheek, In my ear she whispered, “You are destined for the sky” You see, I have always had wings, But it was TLM that taught me how to fly. © Shoyea-Gaye Grant Jamaica, West Indies. The Lupus Foundation Jamaica Voice mail: 1876-803-0082 Email: lupus_foundationja@yahoo.com

Five Things to Pack for a Hospital Stay by Ro Molina

2011-04-02T20:46:00.001-07:00

Five Things to Pack for a Hospital Stay by Ro Molina © First Published in The Lupus Magazine A few weekends ago, I had to be rushed to the Emergency Room yet again. Usually, I'm better prepared, but this time I was running a 102 degree fever and a headache that made my head pound harder than a Metallica concert, so I only had time to grab a few bare essentials. Unfortunately, I had to spend the night and hospitals are not hotels, so even when the fever the broke I was still left feeling uncomfortable.   After being discharged, the first thing I did was to come back home and put together an emergency Emergency Room kit. After years of having to be whisked off to one at any moment's notice, you would think I'd already have one, but it's one of those little points that can be easy to forget once you have your discharge papers in hand.   Even for those who don't spend a good chunk of their time in a hospital, having a little pre-packed bag of necessities set aside can make any hospital stays much more comfortable- and all it really takes is 15 minutes and a spare bag that you don't use daily.   First of all, never, ever go to any hospital without:  * Recent photo ID * Insurance Card * Health-care Proxy (if you have one) * Emergency Contact Numbers (these should include a family member who can pick you up from the hospital, your primary care doctor and any relevant specialists you see) * Any Medical ID tags or bracelets/ List of medications/ List of relevant allergies (in fact, it's a good idea to keep a spare set in your bag as well as your wallet) An easy way to keep everything in one spot is to simply write the information down on a pocket sized notepad (just last week I saw a nice faux leather one with a pen holder for only 2 dollars at Staples). You can use the first page to write your emergency contacts or any other important information about your health that any doctor absolutely should know. For example, my kidneys only function at about 40% of normal due to lupus damage - because of this, doctors have changed prescriptions and even cancelled certain tests and medications that might have caused my kidneys even more trauma.   Next, write down your medications. Be sure to date this page, to keep any future entries from being confused with past ones. If it helps, rip out the old medication page and write in a new one when your meds change. Don't forget to include the dose, how many times a day you take your medications and any other information that the hospital staff might not know about it.  Even if it's a hospital you've been to, or one where your primary doctor is affiliated, never assume that the staff immediately has all your information.   Aside from the essential stuff, there are plenty of other "comfort" items that can make a hospital stay less stressful- because let's face, no hospital yet has been dubbed "the happiest place on earth".   Comfort items include:  *A shawl, light sweater or extra blanket. Without fail every hospital I've ever been to has felt like a refrigerator and while most nurses will be all too happy to give you an extra blanket if you ask, if there's an emergency, staff shift change or some other commotion going on, that extra blanket might be delayed. Bring something of your own and save yourself a lot of time and trouble. *Toiletries. Some hospitals will provide you with slippers/socks, toothpaste, a brush, soap and plenty of other necessities when you're admitted while some others are very bare-bones. If you're not sure where you might end up, it certainly doesn't hurt to pack a few things to keep you feeling like human being when you're recuperating. The travel aisle of your local pharmacy store can give you a huge selection for a small amount. *Snacks. Maybe it's just me, but there's something about a hospital room that just makes me crave junk food. And while you can bribe a passing nurse or a friend to smuggle you in some chocolate or chips, it might just be easier to pack a bag yourself. *Entertainment. Hospital stays run between bursts of activity (testing, check-ins, meals) and long periods of nothing but you and your thoughts. And unless you madly love daytime talk shows and soap operas, you might want to have something else on hand to occupy yourself with. Puzzle books are a good idea, or just a plain journal if you're a writerly type. An ereader can hold more books than any person could hope to carry and a music player can give you something besides your neighbors to listen to. Don't forget your chargers though. Hospitals are not fun, but staying in one does not have to be a stressful affair. Dig out an old tote or duffel bag that's been collecting dust, throw in a notepad with just a few key points of information and some goodies that would cheer you up on the worst of days and you've got a first-rate, personalized kit that will save you trouble in an emergency - and headache once you've been wheeled into the emergency room.   What other items would you have loved to have on hand the last time you were in a hospital? 

Present Day Reality for My Wife... Whom has Lupus - by Mike Miller

2011-04-02T20:41:00.001-07:00

Present Day Reality for My Wife... Whom has Lupus by Mike Miller First Published in The Lupus Magazine My wife Julie Miller normally writes a monthly lupus article for this admirable publication. Unfortunately, as many of you in the lupus community know, plans do not always go as scheduled, due to the unknown obstacles that can arise for a lupus patient. Julie is experiencing some true difficulties right now as she is enduring the chaos of a lupus flare. Earlier this week she had a kidney biopsy. Unfortunately the results came back poorly, indicating acute renal failure. Based on this diagnosis, Julie will begin receiving chemotherapy treatments for the next six months beginning March 29th. Due to these latest events I am submitting a small article on her behalf. I thought I could share a little bit of reality based on our lives and recent events. We recently went to the emergency room due to extremely high blood pressure and severe head pain this past week and she was actually discharged because we were advised there was nothing more they could do for her. After being discharged, we quickly turned backed and asked to be admitted. The nurse advised us we could try to stay at home and use the vicodin prescription to help manage through the pain? We advised that was not a prudent option and then were redirected to re-register at the front desk and wait for a bed. I am not stating this event to criticize the staff at this local hospital, merely illustrating yet again, another point of how misunderstood lupus really is to even a medical professional. This event was just last week; keep in mind Julie was diagnosed with lupus back in 1998. She has endured this type of treatment countless times. It is a reminder though, that it is very important for lupus patients to offer resistance when a medical profession dismisses them. If something does not feel right, you have to speak up and hold firm on seeking further treatment and help. This past week, Julie was physically sick in front of the nurse repeatedly and the recommendation was to go home and use the script to manage through her issue? I am not even close to a medical professional, but common sense would of told me that this person needed further help. I must say lupus is real and can be life changing as I am sure all of you know and realize. Lupus makes me so very angry and frustrated. I feel helpless and do not know how to help my wife? She is suffering nearly 24 hours a day and there is no magic pill, there is only uncertainty of what is next? I thank God that we have a network of family and friends, without them I am not sure how we could manage through this? Fortunately, Julie is strong, faithful, and determined. It is because of this, along with our network of support and our faith in God, I know that her upcoming challenge/treatment will be successful and she will rejoice in remission. In a final closing, I would like to thank some special people. I would like to thank Chuck and Christy of the Lupus Alliance for surprising Julie and I with your surprise visit at the emergency room in which we shared a sincere prayer. I want to thank Mr. Paul Beebe, for his generosity and kindness in his ongoing commitment to donating to the Lupus Alliance annual walk in Grand Rapids, MI. He is a key reason we will be able to move our walk to downtown Grand Rapids this year. I need to thank Sara and Shawn Soudek for handing me 2 movie ticket gift cards for me to take the family out to a movie and enjoy the evening together thinking about something else. I want to thank my brother Luke for watching our son Ryan, so that I could be with Julie at the hospital earlier this week. I need to thank my in laws, Joe and Pat, for their continued support and help. I want to thank my mom and sister whom are coming to our home this upcoming week to be with Julie and our son, to help out, while Julie is recovering from her high dose of chemotherapy treatment. I want to thank Nathan, Rebecca, Jeff, Mark, Joe, Carla, Matt, Rachel, Rita, Lori, Adam, Jeff, Heather, Rock, and the number of other kind people that have reached out to us just this past 5 days. Lastly, thank you to Geoff Thomas for reaching out to us again with kind words of encouragement and support. Take Care. Mike Miller ~

Small Talk The Male Perspective by David Small

2011-04-02T20:36:00.000-07:00

Small Talk - The Male Perspective by David J Small © First Published in The Lupus Magazine When my son was younger, and he would come to me crying about an injury, the first questions were, is there blood? Is it broken? No... Then I would say, "Go play!" Generally he did. As a parent, you know if your children are hurt. Now, I catch myself thinking about this statement when talking about lupus. When divulging I have lupus, people often have that inquisitive look. Where are the broken bones, the blood, the bandages? Those of us suffering from lupus aren't exactly sporting a physical ailment, are we? After all, how do you show complete exhaustion when going through a wave. Ninety percent of lupus patients are female with ten percent being male. This makes it difficult for a man, especially when your wounds can't be seen. As males we are programmed to endure pain, or told to just to work though it. This isn't just society, but instilled on us as children. We may not want to even acknowledge it ourselves. The pain of an inflamed joint can be excruciating. Yet as men, this is a stereotype we sometimes endure. There comes a point when we can't deal with or hide it. As men it's important to understand that pain is pain, and the pain is real. It doesn't matter if you're a man, a woman, a child, black, white or green, we all hurt! No matter what others may think or say, it's okay. No, we can't go & play, but this doesn't makes us any less of a man. David J Small

Happy 1st Birthday, The Lupus Magazine - by Kristel Goodspeed-Correa

2011-04-02T20:29:00.000-07:00

Hope beyond the Crystal Pane by Kristel Goodspeed-Correa © Today’s your birthday! Happy 1st Birthday, The Lupus Magazine Every once in a blue moon, something comes along that truly touches the heart and inspires us to be the best that we can be. It lifts our spirits, comforts our souls and dries away our tears. The Lupus Magazine has done all of that and more. It connects patients from all over the world giving us a lot of heart, love and most of all hope... As well as some occasional laughter along the way. Every edition is like a giant hug letting us know that we are not alone. Below are a number of birthday wishes from readers of The Lupus Magazine from around he world... “Family, that’s what we are. No matter where we are from, we come together as one and it’s with help of The Lupus Magazine. With Geoff’s hard work, he has brought us together from all walks of life. He has a great staff of writers that help me to remember that I am not alone in this battle. Thanks Geoff, I can’t wait to see how the second year turns out” ~ Allison Wisenbaker (Perry, Florida) “Oh all the great things you have done, Geoff, mainly the magazine. It brings smiles to all of us.” ~ Carolyn Hicks (Caboolture, Queensland) “Thank you so much for The Lupus Magazine. I used to think I was alone in this, but with your magazine, I have met many new friends and have learned that we are not alone, there are wonderful inspiring people out there sharing their stories and offering words of wisdom and advice. It helps to know I can go to it when I am feeling down and be lifted up! I have a new motto I would love for you to share with your readers. "I will not fail because I have lupus, I will succeed in spite of it" ~ Judi Darcy DeFrance (Wappinger’s Falls, New York) “Geoff, I just wanted to take a quick minute to give you and TLM a great big shout out! I look forward to your magazine. The articles and view points are exactly what we lupies need. Suddenly I don't feel so all 'alone.' Thank you and keep up the amazing job! There is a lot of information on the Internet about lupus and the fact that I have your magazine at my finger tips is truly a blessing. TLM to me is like waiting for Christmas morning, eagerly anticipating your next issue. Only, there's nothing to prepare for, shopping to do or cookies to leave out! Thanks for giving us Christmas morning, once a month! TLM makes me feel like I'm apart of a large family, a family that understands me, is there for me, and to catch myself saying " me too" throughout the whole publication is not only encouraging, but makes me feel like I'm not losing perspective. Thank you! ~ David Small (Welsey Chapel, Florida) "I'm so proud of what Geoff has done for the Lupus Magazine. The Lupus Magazine has made us realize that we're not alone. We're Lupus patients from all over the world that share our struggles in the lupus battle. Together, we are strong" ~ Imerda Santriana (Jakarta, Indonesia) “Hello. My name is Tony Douglas and I am a member of the Lupus Foundation of America, and Facebook as well. I recently was diagnosed with Lupus over a year ago. If there was anyone who has been an inspiration or my hero, I would have to say there would be two names that come to mind. First and foremost, it would be my mother. She stood by me every day when I became sick and was hospitalized. And I am grateful, thank you mom, I love you. Another person who came to mind would be someone that I have never met but yet, has become an inspiration to me. What is his name? That would be Geoff Thomas. Why? Because he has went above and beyond to help other Lupus survivors, and to get the word out about Lupus. I say Lupus survivors because we are not victims, we are survivors. Geoff has spent his own time and money to help us, and gain nothing from it but to help others. He is unselfish, caring, one of a kind, and a blessing to anyone who has met him or benefited from him, let alone knows him. I would say that Geoff is my hero and inspiration, and I hope one day I will get to meet him. Thank you Geoff. Thank you for your generosity and your dedication. You sir, are an amazing individual and we all thank you. Happy Birthday and God bless you.” ~ Anthony Douglas (Onalaska, Texas) “Today I’d like to thank you… For all you’ve done this year… And to tell you that you are VERY special… And so very dear… Today I would like to tell you… In my own special way… I sincerely appreciate everything you’ve done… More than words can say…. Sending you my good wishes and prayers to keep you healthy… May you always be blessed and inspired…” ~ Andri Pouyiouka (Limmasol, Cypress) For me, The Lupus Magazine has given me greater purpose. It encourages me to reach for the stars and to try use it’s healing light to help brighten the lives of others. I am inspired each and every day from family I never knew I had and from just about every nation imaginable. You all give me strength and courage with all of your love and support. Thank you Geoff for the opportunity not only to be a voice within the Lupus Community, but to be able to attempt to give back to them what they have always given to me. All of us have the power within ourselves to make our dreams come true. This magazine was Geoff’s dream and like a rocket ship, it soared across the heavens lighting the way for the rest of us. On behalf of myself and everyone here at The Lupus Magazine, I would like to extend my deepest appreciation to Andri Pouyiouka, Allison Wisenbaker, Carolyn Hicks, Judi Darcy DeFrance, David Small, Imerda Santriana, and Anthony Douglas for sharing such beautiful and touching sentiments and for their contributions to this article. It is because of our readers that we are here… You touch and inspire our lives just as much as we may touch yours. You are heroes that live every day with this disease and find strength, courage and hope within yourselves to help make the future for Lupus brighter for others. Happy 1st Birthday ~ thank you for touching our lives and making a difference. Here’s to many, many more birthdays xxooxx - Kristel * Editor's note: It is quite humbling to have touched the lives of so many via The Lupus Magazine. But this really is a combined effort of a group of wonderful volunteer writers and some very special readers I've had the privilege to connect with over the past twelve months. Not to mention all those who have been interviewed or have shared their lupus experiences to assist and inspire others... My sincere thanks - Geoff ~

The Lupie Life by Kimberly Lehanka

2011-04-02T20:23:00.000-07:00

The Lupie Life by Kimberly Lehanka © First published in The Lupus Magazine I stumbled across The Lupus Magazine last July while doing my usual Lupus research, trying to educate and teach myself as much as there is to know about this mysterious disease… The magazine had everything... A lovely collection of writers that all had Lupus themselves, an editor/creator who had Lupus, and an amazing amount of knowledge and information to share. I emailed the man in charge (coincidently, the only man that was part of The Lupus Magazine) and wanted to join the team! I was eager to hear back and upon getting his approval I 'officially' joined the magazine. What I didn’t know was that I was joining not just a group of writers, but I was gaining a family. A family that was scattered across the globe and an international collage of individuals that all had lupus and yet we were all so different in countless ways. And while we are all so different, we come together in a common place to share stories, compare Lupus symptoms and different oddities that pop up (usually due to Lupus, or one of our other illnesses - you know us Lupies tend to have quite a rare collection…) We also share laughs and laugh together, and we vent and cry together… And through it all we support and encourage one another as well. The Lupus Magazine keeps growing, and as it continues to grow and spread, our family gets bigger, and I consider myself blessed to be a part of it.

One Day by Maddie Pearce

2011-04-02T20:15:00.000-07:00

One Day... by Maddie Peace © First published in The Lupus Magazine - La Revista de Lupus I allow myself one day every couple of months to have a pity party. It lasts about an hour and there may or may not be some tears and some “Why me’s?” My last party of sorts ended up involving me looking up some “help” sites online for Lupus sufferers. Being an eighteen-year old college student, it’s hard to find something that is relatable and upbeat. Most of the things I found were depressing and aggravating until I found The Lupus Magazine. I spent hours reading the stories of the many different women involved and knew it would help me through anything. The women, however amazing they are, were older than me… until I read an article by the amazing young woman by the name of Shoyea. I was inspired by the fact that there was someone around the same age of me who was suffering and going through exactly what I was going through. About an hour after I read through all of her articles, I emailed Geoff, the amazing editor of this magazine. I told him that I needed to let Shoyea know what she had done for me. She had opened up an entire new world for me! A couple of days went by, and I kept in contact with the magazine. Soon enough, I began writing for it! The Lupus Magazine has turned into a huge part of my life – I have met the most amazing people and am honored to help spread the word about Lupus all around the world. Without being a part of this amazing experience, I would not have been able to meet the women I call my sisters. This magazine has not only become a huge part of my life but it has also become a starting point for talking about Lupus. If anyone has a question about my disease or what I go through, I tell him or her to look at TLM. It is a great resource about Lupus and everything that goes with it. I am absolutely honored to be a part of this incredible journey and it has helped me become more confident and comfortable with my disease. With the help of everyone who donates his or her advice and inspirational messages, I have become a stronger person. Lupus affects me, yes. However, I have come to realize that it does not run my life! © Maddie Pearce & The Lupus Magazine Un día... Por Maddie Pearce © Me permito un día cada par de meses para tener una fiesta de lastima. Tiene una duración de aproximadamente una hora y puede o no haber algunas lágrimas y algunos "¿Por qué yo?" Mi última fiesta terminó yo buscando un poco de "ayuda" de los sitios en línea para los enfermos de lupus. Siendo un estudiante universitario de dieciocho años de edad, es difícil encontrar algo que es narrable y optimista. La mayoría de las cosas que encontré fueron deprimentes y agravando hasta que encontré La Revista de Lupus. Me pasaba horas leyendo las historias de las diversas mujeres que participan y sabía que me ayudarían a través de cualquier cosa. Las mujeres, sin embargo, sorprendente que son, eran mayores que yo... hasta que leí un artículo de la increíble mujer joven con el nombre de Shoyea. Me inspiré en el hecho de que había alguien cerca de la misma edad de mí que estaba sufriendo y pasando por exactamente lo que estaba pasando. Alrededor de una hora después de leer a través de todos sus artículos, le envié un correo Geoff, el sorprendente editor de esta revista. Le dije que tenía que dejar saber a Shoyea lo que había hecho por mí. Ella había abierto un nuevo mundo entero para mí! Un par de días pasaron, y yo seguí en contacto con La Revista de Lupus. Muy pronto, comencé a escribir para la revista! La Revista de Lupus se ha convertido en una gran parte de mi vida - he conocido a la gente más increíble y me siento honrada de ayudar a difundir concientizacion sobre Lupus en todo el mundo! Sin ser parte de esta experiencia increíble, yo no habría podido conocer a las mujeres a las que llamo mis hermanas. Esta revista no sólo se ha convertido en una parte importante de mi vida, pero también se ha convertido en un punto de partida para hablar sobre el lupus. Si alguien tiene una pregunta acerca de mi enfermedad o lo que paso, le digo a él o ella que vea LRL. Es un gran recurso sobre Lupus y todo lo que pasa con él! Estoy absolutamente honrada de ser parte de este increíble viaje y me ha ayudado a estar más segura y cómoda con mi enfermedad. Con la ayuda de toda persona que dona sus consejos y mensajes de inspiración, me he vuelto una persona más fuerte. El lupus me afecta, sí. Sin embargo, me he dado cuenta de que no maneja mi vida! Maddie Pearce

The Gift of Virtual Friendships - Elisa Lynee

2011-04-02T03:52:00.000-07:00

The Gift of Virtual Friendships First published in The Lupus Magazine - La Revista de Lupus This month marks the one year anniversary of The Lupus Magazine. I’ve only been involved in this periodical since it profiled me in the January 2011 edition, but I must say, my life has changed dramatically since then. I was never the kind of person to sign up for a chat room, yet I would always read information on them. I’m not a shy person… just weary of strangers, so I never contributed to any chats or strings of questions/answers. Then, along came this magazine that wanted to profile my Lupus journey after I wrote and recorded a Lupus benefit song. I was so excited and felt incredibly blessed to be able to share my story that I jumped at the chance. What I didn’t know is that along with me doing that, I would suddenly meet some of the greatest people I’ve ever met in my life. I now have friends with whom I chat daily, send hugs and kisses to quite often, give my love and blessings to when needed, and even share deep thoughts with at all hours of the night. Yet, apart from recently meeting Debra from the magazine, I’ve never met the rest of The Lupus Magazine family in person. I’ve only seen their pictures. I’ve never gazed into their eyes, never been able to grab their hands, and I’ve never been able to share energy with them via a touch. However, through the virtual world (mostly via Facebook) I feel like I have been able to give and receive all of the above. I’ve been able to connect to these people in a way that is truly remarkable. I guess what I’m saying is that, through the one common thread that ties us all together, many of us have become wonderful friends. That thread is Lupus. That dreaded word/illness has actually shown me the gift of cyber friendships and has allowed me to meet amazing people. Clearly, as I’ve said before, nobody wants to have Lupus! But, the hidden blessing in this situation is THE PEOPLE! My fellow Lupies and writers of this magazine have become family to me. This magazine has given me an extended family that branches across countries, continents and oceans. And, it is not only the writers of the magazine that have become family to me, many of its readers have as well! That family has become my Lupus family. We are all very different, yet we all fight our Lupus battles together, we listen to each other’s problems and we encourage one another to hang in there during the hardest of times. I must say, having individuals like that in my life who allow me to receive as much as I give to a friendship… truly is a butterfly blessing! Until next time, look around you to find your Butterfly Blessings. Whether they are within you or surrounding you, they are always there! © Elisa Lynee, 2011 Bendiciones de Mariposa El don de la amistad virtual. Este mes se cumple el primer aniversario de la revista The Lupus Magazine. Sólo he estado involucrada en este periódico, ya que fui retratada en la edición de enero 2011, pero debo decir, mi vida ha cambiado radicalmente desde entonces. Nunca fui del tipo de persona para inscribirse en una sala de chat, sin embargo, yo siempre leía información sobre esto. No soy una persona tímida... simplemente cansada de los extraños, por lo que nunca he contribuido a los chats o las cadenas de preguntas y respuestas. Luego, llegó esta revista que quería saber de mi travesía con mi lupus después de que escribí y grabe una canción a beneficio del Lupus. Estaba tan emocionada y me sentí muy bendecida de poder compartir mi historia, que me lancé a la oportunidad. Lo que no sabía es que al hacer eso, de repente conocería a algunas de las mejores personas que he conocido en mi vida. Ahora tengo amigos con quien conversar todos los días, enviar abrazos y besos a menudo, doy mi amor y bendiciones cuando es necesario, e incluso comparto sus pensamientos profundos en todas las horas de la noche. Sin embargo, aparte de recientemente conocer a Debra de la revista, nunca he conocido el resto de la familia Lupus Magazine en persona. Sólo he visto sus fotos. Nunca los he mirado a los ojos, nunca he sido capaz de agarrar sus manos, y nunca he podido compartir con ellos la energía a través de un toque. Sin embargo, a través del mundo virtual (en su mayoría a través de Facebook) me siento como si hubiera sido capaz de dar y recibir todo lo anterior. He sido capaz de conectarme a estas personas de una manera que es verdaderamente notable. Creo que lo que estoy diciendo es que, a través del hilo común que une a todos nosotros, muchos nos hemos convertido en amigos maravillosos. Ese hilo es el Lupus. Esa palabra/enfermedad temida me ha mostrado de hecho el regalo de la amistad cibernética y me ha permitido conocer a gente increíble. Es evidente que, como he dicho antes, nadie quiere tener lupus! Sin embargo, la bendición escondida en esta situación son LAS PERSONAS. Mis Lupis compañeros y escritores de esta revista se han convertido en mi familia. Esta revista me ha dado una gran familia que se ramifica en todos los países, continentes y océanos. Y, no sólo los escritores de la revista que se han convertido en mi familia, muchos de sus lectores también lo han hecho! Esa familia se ha convertido en mi familia lupus. Todos somos muy diferentes, pero todos luchamos nuestras batallas contra el Lupus. Juntos, nos escuchamos los problemas unos a otros y nos animamos unos a otros para apoyarnos durante los tiempos más difíciles. Debo decir, tener personas así en mi vida que me permitan recibir tanto como dar en una amistad ... realmente es una bendición de la mariposa! Hasta la próxima, mira a tu alrededor para encontrar las bendiciones de mariposa. Ya sea que estén dentro de ti o los que te rodean, siempre están ahí! © Lynee Elisa de 2011

Trash Talk - Trash Dice - Nobody's Hero - by Johnny Trash

2011-04-02T03:35:00.000-07:00

Trash Talk by Johnny Trash © First published in The Lupus Magazine - La Revista de Lupus Warning: Some language may offend! Nobody’s Hero People often say I’m strong, I’m a fighter, I’m their hero – truth is I’m just a normal woman living in an abnormal body and I just get on with it – what the fuck else can I do? Of course I wasn’t always this way – want to know a secret ? Mid 2006 (the month escapes me) I went to the doctor to get some blood results. Now I had already been told in a letter from my dermatologist (who said, "Oh, you just have alopecia because you’ve just had a baby") that I had antibodies in my blood. And so I googled, and doubled with the symptoms I had at the time, ie severe fatigue, aching all over and a balding fucking head, I came up with this strange thing called Lupus! What in the fuck is that I thought? I read on and thought to myself, ‘Fucking hell... that’s really bad. I hope that’s not what I’ve got!' And so sitting in the doctor’s room, she matter of factly said, "You have Lupus SLE" and booked a consultation with a Rheumie and that was it! I sat in my car that day for at least an hour unable to think. And I just cried and cried and fucking cried. I didn’t have a mum or dad to run to and didn’t have any knowledge of any support groups anywhere. The next year was in fairness, total fucking shit. On one occasion I downed a bottle of wine with a handful of Diazepam. Didn’t work – I’m shit at stuff like this – I just puked and fell out of bed bashing my head on the night stand! I went through severe depression, psychosis, terror and denial. I put it to the back of my head and thought ‘I haven’t got this disease I’ll go back to work.’ Boy was I wrong! I got gradually sicker and sicker and sicker. It got to the stage where I had to weigh up the pro’s and cons and at the end of that year gave up working. Something had to give. No matter how much I loved my job as a band promoter and putting gigs on, I had to do what was right for my family and for my body. Yes it was hard. It was fucking hard. I missed the life and the bands and the music, but ultimately It meant I had more energy for my children. Had I carried on working as many late hours as I did, they wouldn’t have had a mum at all. And so after that, finally came ‘acceptance’. I accept I have a shitty disease and my body is a bit spasticated. My memory is shit, and my second home is Ward 2 (or '53 men went to mow a meadow' ward.) I can’t do the things I once did and live on a diet of chemotherapy, a million meds and a visit to one of my various consultants every other week. I’m still a balding twat, but wigs are ace and when I go shopping I get to park near the shops so I don't have to walk far with my retarded knees. What else can I do? Nothing but get the fuck on with it. I’m sitting here at the moment with a fag and a brew, watching trashy daytime TV in my pyjamas, and doing the thing I love – writing! Life is pretty good really when you think about it. One thing I’ve learnt is, you can sit back in perpetual sadness grieving for your loss, or rise from the pain and treasure the most precious gift – LIFE. JT x © Johnny Trash & The Lupus Magazine Trash Dice Creado por Johnny Trash Advertencia: Contiene lenguaje que puede ofender! Héroe de nadie La gente suele decir que soy fuerte, soy una luchadora, soy su heroína - la verdad es que yo sólo soy una mujer normal que vive en un cuerpo anormal y solo lo dejo pasar. ¿Qué rayos más puedo hacer? Por supuesto que no siempre fue así - ¿Quieres saber un secreto? A mediados del 2006 (se me olvida el mes) fui al médico para obtener algunos resultados en la sangre. Se me había dicho en una carta de mi dermatólogo (que dijo: "Oh, usted solo tiene alopecia, ya que acaba de tener un bebé") y que tenía anticuerpos en la sangre. Y lo busqué en Google, y con el doble los síntomas que tenía en ese tiempo, es decir, fatiga severa, dolor por todas partes y una cabeza calva, me encontré con esta extraña cosa llamada Lupus!. “Qué rayos es Lupus?” pensaba. Seguí leyendo y me dije: ‘rayos... eso es realmente malo. Espero que eso sea lo que tengo! " Y así, sentada en la oficina del doctor, ella sin rodeos, dijo, "Usted tiene lupus eritematoso sistémico", y me reservó una consulta con un reumatólogo y eso fue todo! Me senté en mi coche ese día por lo menos durante una hora incapaz de pensar. Y yo lloraba y lloraba y lloraba de enojo. No tenía una mamá o papá a donde ir y no tenía ningún conocimiento de algún grupo de apoyo en cualquier lugar. Al año siguiente estaba en el desastre total. En una ocasión me tome una botella de vino con un puñado de diazepam. No funcionó - Estoy tonta en cosas como estas – Vomité y me caí de la cama golpeándome mi cabeza contra la mesa de noche! Pasé por una depresión severa, psicosis, terror y negación. Lo traté de ignorar y pensé 'yo no tengo esta enfermedad, voy a volver a trabajar.”¡Qué equivocada estaba! Me fui enfermando más y más gradualmente. Llegó a la etapa en que tuve que balancear los pros y contras y a finales de ese año deje de trabajar. Algo tenía que vencerme. No importó lo mucho que amaba mi trabajo como promotora de conciertos de banda y arreglar los eventos. Tenía que hacer lo que era correcto para mi familia y para mi cuerpo. Sí, fue duro. Fue muy duro y echaba de menos la vida y las bandas y la música, pero en última instancia significaba que tenía más energía para mis hijos. Si hubiera seguido trabajando hasta altas horas como lo hacia, ellos no hubieran tenido una madre a después de todo. Y así después de eso por fin llegó "aceptación". Acepto que tengo una enfermedad y mi cuerpo está un poco trastornado. Mi memoria esta mal, y mi segunda casa es la Sala 2. No puedo hacer las cosas que hice una vez y tengo que vivir en una dieta de quimioterapia, un millón de medicamentos y una visita a uno de mis médicos de consultas semanas alternas. Sigo teniendo una idiota calvicie, pero uso pelucas, y cuando voy de compras me estaciono cerca de las tiendas, así que no tengo que caminar mucho con mis retrasadas rodillas. ¿Qué otra cosa puedo hacer? Nada más soportar la sacudida. Estoy sentada aquí en este momento con un cigarrillo y una cerveza, viendo en la televisión una basura de programa de esos que dan durante el día. Estoy en mis pijamas, y haciendo lo que me gusta - Escribir! La vida es bastante buena en realidad cuando se piensa en ello. Una cosa que he aprendido es, usted puede sentarse en la tristeza perpetua, lamentar su pérdida o levantarse entre el dolor y valorar el tesoro regalado más preciado – LA VIDA. JT x © Johnny Trash y La Revista de Lupus

2011-04-02T03:17:00.000-07:00

The True Meaning of Awareness First published in The Lupus Magazine - La Revista de Lupus By Debra Freeman Highberger © Is awareness something that just develops and then stops or is it forever growing? At what point does awareness go from being words on a page to an internalized emotion? This is why on the first anniversary of The Lupus Magazine I want to say thank you to everyone for letting me be a part of this wonderful community whose only interest is to get the word out there about Lupus and it’s devastating effects it can have on an individual; as well as the work that is being done to find a cure. With no sponsors backing this magazine we have proven that it takes the human heart to really give support and teach awareness. It is difficult to bring awareness to a disease that is constantly changing. Unlike many other illnesses there is not just one face of lupus; which why it is important to bring this awareness to the internal medicine community and to the public. To have awareness one must first want to understand…and then have empathy for it to become a full circle. It takes a type of empathy to truly be aware of the knowledge that one bestows on another. Without empathy awareness is merely a fact and not a follow through. When I was teaching nursery school in Germany there was a girl in my class who was four years old. There was also an autistic boy in the class that we tried desperately to engage with very little success. This four year old girl made it her goal to mother the autistic boy and try to include him in her play. She also wanted very much to take care of him. I was amazed by the amount of empathy this young child had for her fellow student. Especially at an age when children were just learning to play “with" each other as opposed to “side by side.” It is said that from every soul’s path we cross, we will learn. From this child I learned the true meaning of human kindness and empathy. From that moment on, it had become an important element to the social foundations of every class I have taught. After all, I have never met an adult who couldn’t write their name. But I have met adults that couldn’t get along with others around them. In my classroom I have seen the effects this type of environment can create in the hearts of its children; and how they deal with the issues that surround them. Little did I know, when I first began this journey of wanting to teach, the importance of awareness and empathy from one individual to the next, that it would hit so close to home so many years later. Since I have come down with this disease, “awareness” has been the word I have heard the most. It is used so much that it has almost lost its true meaning. When we think of awareness we first conjure up images of fundraisers and walks. But the true meaning of awareness is so much more than that. I want you to take the time right now and close your eyes. Be aware of your surroundings, the sounds, smells and temperatures that are your environment. Next close your eyes and be aware of your body, the beating of your heart, the rise and fall of your breath, the sensation of your skin. Now imagine that skin burning and itching. Your heart is randomly skipping every third beat and your lungs can no longer be filled to capacity, just to mention a few. That is what being aware of a lupus patient is. Often I hear from other lupus patients that the people who mean the most to them are sometimes the ones that understand the least. It is a struggle that a lupus patient did not expect and certainly doesn’t need. I was very fortunate that I did not have to deal with that issue. When I got sick, besides my wonderful family, it was the children of my classroom that showed me the most understanding of what it was I was going through. From the five year old that had just learned to tie their shoe and wanted to help me tie mine; to the twelve year old that would fetch me my walker, these often overlooked individuals of our society stood up to the plate in the form of awareness like no other with no expectation of recognition. They internalized their awareness and chose to do something about it. When it became apparent that this disease was not going to go away for me, the children of my classes banded together. Like me, they felt powerless under the circumstances but because children are so full of hope they were not going to sit back and let this consume me. It was a form of love that was so pure and innocent it gave me hope in the future mankind if nothing else. JeanMarc Dykes is a student I had for many years and was then a senior at a college in Vancouver. He was the first to get them rallied. Whenever he was home on break he would often help me in the classroom. It was during those times he witnessed, as I did, the wonderful support I was getting from even the youngest of students. It was at that time he made a huge decision. After graduation, to return home, he decided to ride his bike from Vancouver, Canada across America to Marblehead, Massachusetts. Marblehead is the small town from where we are from that is just north of Boston. A 4000 mile ride, it was something that to this day, I am in awe of. To make this truly work he called on the aid of the other students to spread the awareness. From the youngest to the oldest they all jumped in. With very little help from me, because I was so disabled at the time, these kids raised over $10,000. It was later donated to the lupus center in Boston, where I am a patient. Although they got some media coverage they had learned very early on that the awareness they were to make was going to have to come from them first. To do this they had bake sales, a haunted house a masquerade ball as well as a huge fundraising dinner that included a fashion show and guest speakers to talk about lupus. On his miraculous ride, JeanMarc realized the awareness was also going to have to come from him. He tried contacting news stations as well as newspapers to let people know he was going to be riding through the area. Most turned him down or ignored his attempt at contacting them. But it was different in the smallest of towns across this country. In these places they showed him the most respect for what he was doing and its cause. Wherever he went he spoke about the disease and tried to bring awareness of its devastation. Often to people that would stop and sit with him by the side of a road, or at a pie festival in the middle of nowhere. One by one he spoke to whoever would listen. Along the way he came across so many people that knew someone suffering from lupus. He had no idea when he first set out on this journey, just how many sufferers there really were. He was hailed by those that had seen him. He was even given the key to the mayor’s office of one small town so that he could sleep on the couch for the night, instead of on the cold ground. And when he arrived home all bloody and bruised after several months it was our small town of Marblehead Massachusetts that gave him a police escort with sirens blaring right into my waiting arms. Through his gallant effort to bring awareness of lupus to the people he became aware of one substantial thing. And that is that people are generally giving and one person can make a difference. Today my students still go out of their way to help me. I received a phone call from Laura Whitehill just a few weeks ago. Laura has been a student of mine since she was in second grade. Today she is a junior in high school. She heard about the Walk for Lupus Research that is coming to Boston on June 11, 2011. She has rallied the kids once again and has formed a team called Debra’s Divas and Dudes. I will be walking with them. I told the kids I may have to pull out the walker again to accomplish this three mile trek… each one told me they would carry me if they had to… I think they already are and I hope long after I am gone they will realize that from my classroom they have learned so much more than just art. El verdadero significado de la conciencia Por Debra Freeman Highberger© ¿La concientización, será que sólo se desarrolla y se detiene o está creciendo para siempre? ¿En qué momento la conciencia pasa de las palabras en una página a una emoción interiorizada? Por ello, en el primer aniversario de La Revista de Lupus quiero dar las gracias a todos por dejarme ser parte de esta maravillosa comunidad cuyo único interés es conseguir sacar palabra sobre lupus allá afuera y dar a conocer sus efectos devastadores que puede tener sobre un individuo, así como el trabajo que se está haciendo para encontrar una cura. Sin patrocinadores respaldando a esta revista hemos demostrado que se necesita el corazón humano para dar realmente apoyo y enseñar a concientizar. Es difícil hacer tomar conciencia de una enfermedad que está en constante cambio. A diferencia de muchas otras enfermedades no hay sólo una cara de lupus; es por eso que es importante llevar este conocimiento a la comunidad de medicina interna y al público. Para tener conciencia de la enfermedad uno primero tiene que querer entender... y luego tener empatía para que se convierta en un círculo completo. Se necesita un tipo de empatía para ser verdaderamente conscientes de los conocimientos que uno da a otro. Sin conciencia de la empatía es simplemente un hecho y no un seguimiento. Cuando estaba enseñando a la guardería en Alemania había una niña en mi clase que tenía cuatro años. También había un niño autista en la clase que tratamos desesperadamente de tratar con muy poco éxito. Esta niña de cuatro años hizo su objetivo de ser la “madre” del niño autista y tratar de incluirlo en su juego. Ella también tenía muchas ganas de cuidar de él. Me quedé sorprendida por la cantidad de empatía que esta niña tenía para su compañero de estudios. Especialmente en una edad cuando los niños estaban aprendiendo a jugar "con" unos a otros en lugar de "al lado del otro." Se dice que desde el camino de cada alma que cruzamos, vamos a aprender. A partir de esta niña aprendí el verdadero significado de los derechos humanos la bondad y la empatía. A partir de ese momento, se había convertido en un elemento importante para las bases sociales de todas las clases que he enseñado. Después de todo, nunca he conocido a un adulto que no podía escribir su nombre. Pero he conocido a adultos que no pueden llevarse bien con los demás a su alrededor. En mi clase he visto los efectos que este tipo de ambiente puede crear en los corazones de los niños, y cómo hacer frente a los problemas que les rodean. Poco sabía yo, cuando empecé este viaje de querer enseñar, la importancia de la conciencia y la empatía de un individuo a otro, que sería golpeado tan cerca de casa después de tantos años. Desde que he llegado con esta enfermedad, "concientización" ha sido la palabra que he escuchado más. Se usa tanto que casi ha perdido su verdadero significado. Cuando pensamos en la conciencia, primero evocan imágenes de recaudación de fondos y los paseos. Pero el verdadero significado de la conciencia es mucho más que eso. Quiero que tomen el tiempo ahora mismo y cierren los ojos. Sea consciente de sus alrededores, los sonidos, los olores y temperaturas que son su medio ambiente. A continuación cierra los ojos y sean conscientes de su cuerpo, los latidos de su corazón, el ascenso y la caída de la respiración, la sensación de su piel. Ahora imagine que le quema y le pica la piel. Su corazón está saltando al azar todos los terceros tiempos y sus pulmones ya no puede ser llenados a capacidad, sólo por mencionar algunos. Eso es lo que significa ser consciente de un paciente de lupus es. A menudo he oído de otros pacientes con lupus que las personas que significan más para ellos a veces son los que entienden lo más mínimo. Es una lucha que un paciente de lupus no esperaba y, desde luego no es necesario. Fui muy afortunado de que no tuviera que lidiar con ese problema. Cuando me enfermé, además de mi maravillosa familia, que fueron los niños de mi clase que me mostró la mayoría de la comprensión de qué era lo que estaba pasando. Desde el niño de cinco años que acababa de aprender a atarse los zapatos y quería que me ayudara a atar las minas; a la de doce años que me trae mi andador, estos individuos a menudo pasada por alto de nuestra sociedad se puso de pie a la placa en forma de conciencia como ningún otro, sin esperar reconocimiento. Ellos interiorizado su conciencia y decidió hacer algo al respecto. Cuando se hizo evidente que esta enfermedad no iba a desaparecer para mí, los hijos de mis clases se unieron. Como yo, se sentían impotentes bajo las circunstancias, sino porque los niños están tan llenos de esperanza que no iban a sentarse y dejar que esto me consumen. Era una forma de amor que fue tan puro e inocente que me dio la esperanza en el futuro si la humanidad nada más. Jeanmarc diques es un estudiante que tenía desde hace muchos años y luego fue su último año en un colegio en Vancouver. Él fue el primero en conseguir que se recuperó. Siempre estaba en casa en las vacaciones que a menudo me ayudaría en el aula. Fue durante esa época que fue testigo, como lo hice, el maravilloso apoyo que estaba recibiendo de incluso el más joven de los estudiantes. Fue en ese momento en que hizo una gran decisión. Después de su graduación, para volver a casa, decidió montar su bicicleta en Vancouver, Canadá a través de América a Marblehead, Massachusetts. Marblehead es el pequeño pueblo de donde somos de que es justo al norte de Boston. Un paseo en 4.000 millas, que era algo que a día de hoy, estoy en el temor de. Para hacer este trabajo realmente hizo un llamado a la ayuda de los otros estudiantes para difundir la conciencia. Desde el más joven al más viejo que todos saltaron pulgadas con muy poca ayuda de mí, porque yo estaba con discapacidad al momento, estos niños recaudado más de $ 10,000. Fue donada posteriormente al centro de lupus en Boston, donde yo soy un paciente. A pesar de que tiene algunos medios de comunicación que había aprendido muy pronto que la conciencia que tenían que hacer iba a tener que venir de ellos primero. Para hacer esto tuvieron ventas de pasteles, una casa encantada, un baile de máscaras, así como una cena de recaudación de fondos enormes que incluyó un desfile de moda y los oradores invitados para hablar sobre el lupus. En su viaje milagroso, Jeanmarc se dio cuenta de la conciencia también iba a tener que venir de él. Trató de ponerse en contacto con las estaciones de noticias, así como los periódicos para que la gente sepa que se va a montar a caballo por la zona. La mayoría lo rechazó o ignoró su intento de entrar en contacto con ellos. Pero fue diferente en el más pequeño de ciudades de todo el país. En estos lugares se le mostró el mayor respeto por lo que estaba haciendo y su causa. Dondequiera que iba, habló sobre la enfermedad y trató de hacer tomar conciencia de su devastación. A menudo a la gente que se detenía y se sentara con él a la orilla de una carretera, o en un festival de pie en medio de la nada. Uno por uno que habló con el que quiera escuchar. En el camino se encontró con tanta gente que conocía a alguien que sufre de lupus. No tenía ni idea cuando se estableció por primera vez en este viaje, cuántas víctimas hay en realidad. Fue aclamado por los que lo había visto. Se le dio incluso la clave de la oficina del alcalde de un pequeño pueblo para que pudiera dormir en el sofá por la noche, en lugar de en el suelo frío. Y cuando llegó a casa ensangrentado y golpeado después de varios meses era nuestro pequeño pueblo de Marblehead Massachusetts que le dio una escolta de policía con las sirenas a todo volumen a la derecha en mis brazos esperando. A través de su esfuerzo valiente para hacer tomar conciencia de lupus a la gente se dio cuenta de una cosa importante. Y es que la gente generalmente dar y una persona puede hacer la diferencia. Hoy mis alumnos todavía salir de su manera de ayudarme. Recibí una llamada de Laura Whitehill hace apenas unas semanas. Laura ha sido una de mis estudiantes desde que estaba en segundo grado. Hoy es un junior en la escuela secundaria. Ella se enteró de la Caminata por la Investigación de Lupus que viene a Boston el 11 de junio de 2011. Ella se ha reunido a los niños una vez más y se ha formado un equipo llamado Divas de Debra y Dudes. Voy a estar caminando con ellos. Le dije a los chicos que pueden tener que sacar el caminante de nuevo para realizar esta caminata tres millas ... cada uno de ellos me dijo que me iban a llevar si tuvieran que ... yo creo que ya están y espero que mucho después de que yo me haya ido se darán cuenta de que de mi clase que he aprendido mucho más que arte.

meet someone with lupus - lori kirk - Conoce a alguien con lupus – La historia de Lori

2011-03-05T22:25:00.000-08:00

Meet Someone With Lupus

"That’s Not Fair!" by Lori Kirk

First published in The Lupus Magazine

Life isn’t always fair. Ask anyone with a chronic illness and you won’t hear any arguments; We didn’t ask to be sick with a disease for which there is no cure and sometimes no matter how hard we try to maintain our health, our joints ache, our hair falls out and our cheeks tingle with a butterfly burn.

Ok, we’re sick. What are our options at this point? We can wallow in self-pity or be pro-active in our recovery. Thing is, the latter is easier said than done. Sitting around waiting for a magic pill or for someone else to fix our problems just isn’t realistic. Sometimes, life isn’t fair and I’ve come to realize that accepting this is the first step to moving forward in a positive direction. Bad things happen to good people all the time and it’s okay to recognize that you may be in a tough spot but what we need to focus on is how we can make positive changes rather than living in a “Why me?” mentality.

I know what it’s like to want to never get out of bed but I know from experience that ignoring your problems doesn’t make them go away. Ok, enough with the lecture about not feeling sorry for oneself. This is MY story...

I was officially diagnosed with SLE, Fibromyalgia and APS in February of 2010. When I say that this past year has had more ups and downs than a possessed elevator, I’m not exaggerating; I lost my hair on the left side of my head and doctors couldn’t tell me if it was the Lupus or a side effect from the medication, my joints hurt so badly I had to waddle from my car to my office, I was so fatigued I slept for 14 hours a day and the prednisone made me such an emotional wreck I would get angry or sad at the drop of a hat. To top it off, I had just gotten out of a 5 year relationship and had to re-home my dog.

Was this really my life?! When I was at my worst, I made the decision to take a leave of absence from work and to move back home. Thankfully, I had been at my job for long enough so I qualified for long-term disability. Problem solved, right? Not exactly. Even though I was eligible for disability it required filling out packets of paperwork, faxing endless medical records and waiting impatiently for months without a single email or phone call. The stress of being sick combined with now being broke lead to depression and the worst year of my life. At that point, I started to give up. I didn’t plan my life to turn out like this and I didn’t understand why everything was falling apart.

Since there was so much going on that I had absolutely no control over, I decided to focus on what I could change. First, I changed my diet and cut out soda. Then I started to exercise a little more. I made sure to keep on top of my meds and asked for help when I needed it. Slowly but surely, I began to feel better and started to regain control of my life.

Fast forward to last month when my insurance company decided I wasn’t “sick enough,” even though my doctor’s notes and labs said otherwise, and suspended my benefits. Great, another curve ball. This time, however, I was able to deal with it in a completely new way. The minute I read the denial letter I took a brief moment to get upset and then started to make a game plan. I wasn’t denying my emotions of being panicked, angry and let down but I didn’t let the negativity consume me the way it did before. I focused on what I could realistically change and, in the end, figured out a solution that had nothing to do with insurance, SSDI or any other kind of support system. Trying to tackle one giant problem doesn’t work for me. Instead, I broke down one overwhelming obstacle into manageable pieces.

Not everybody has lupus, but everybody has their own cross to bear, for lack of a better expression, in one way or another. I’ve come to realize some people go through life unscathed while others deal with tragedies everyday. All I can focus on is my life and what I can do to make it as enjoyable as I can. When I’m not at my best, I don’t deny how I feel but when life starts to pack on more than I can handle I face the problems head on and refuse to ask “Why me?” anymore.

© Lori Kirk 2011

"Conoce a alguien con lupus – La historia de Lori"

Cualquier persona que desee compartir su historia con nosotros puede enviar un correo electrónico al Sr. Geoff Thomas a: lupusnews@live.com.au para sus historias en Inglés o también pueden escribirle a Nancy Arocho en: tengo_lupus@live.com para sus historias en español.

"Eso no es justo!"

Por: Lori Kirk ©

La vida no siempre es justa. Pregunte a cualquier persona con una enfermedad crónica y no se oye ningún argumento; Nosotros no pedimos enfermarnos con una enfermedad la cual no existe una cura y, a veces no importa cuánto nos esforcemos para mantener nuestra salud, nos duelen las articulaciones, nuestro pelo se cae y hormigueo en las mejillas con una quemadura mariposa. Ok, estamos enfermos. ¿Cuáles son nuestras opciones en este momento? Podemos revolcarnos en la autocompasión o ser pro-activos en nuestra recuperación. La cosa es que este último es más fácil decirlo que hacerlo. Sentarse a esperar una píldora mágica o para otra persona que arregle nuestros problemas simplemente no es realista. A veces, la vida no es justa y me he dado cuenta de que la aceptación de esto es el primer paso para avanzar en una dirección positiva. Las cosas malas suceden a la gente buena todo el tiempo y está bien reconocer que estamos en una situación difícil, pero lo que tenemos que centrarnos es en cómo podemos hacer cambios positivos en lugar de vivir en un "¿Por qué yo?" mental.

Yo sé lo que es querer nunca salir de la cama, pero sé por experiencia que haciendo caso omiso a los problemas no los hace desaparecer. Ok, suficiente con la conferencia sobre no sentir lástima por uno mismo. Esta es la historia de MÍ.

Me diagnosticaron oficialmente con LES, la fibromalgia y APS en febrero de 2010. Cuando digo que el año pasado he tenido más altibajos que poseía un ascensor ocupado, no estoy exagerando;. Perdí mi pelo en la parte izquierda de mi cabeza y los médicos no me podían decir si era el lupus o una efecto secundario de la medicación, mis articulaciones dolían tanto que tuve que contonear de mi coche a mi oficina, yo estaba fatigada, así que dormía durante 14 horas al día y la prednisona me hizo como una ruina emocional donde me enojaba o ponía triste por cualquier cosa. Para colmo, me acababa de salir de una relación de 5 años y tuve que cambiar de casa a mi perro. ¿Fue esto realmente mi vida?! Cuando yo estaba en mi peor momento, tomé la decisión de tomar un permiso de ausencia del trabajo y volver a casa. Por suerte, yo había estado en mi trabajo durante el tiempo suficiente por lo cualifique para la discapacidad a largo plazo. Problema resuelto, ¿no? No exactamente. A pesar de que era elegible para la discapacidad se requiere llenar los paquetes de documentos, fax interminables historias clínicas y esperando con impaciencia durante meses sin un solo correo electrónico o llamada telefónica. El estrés de estar enferma en combinación con estar sin dinero me llevo a la depresión y al peor año de mi vida. En ese momento, empecé a rendirme. Yo no tenía en mis planes que mi vida se iba a convertir en esto y yo no entendía por qué todo parecía caer en pedazos. Puesto que no había muchas cosas en la que yo podía controlar, decidí centrarme en lo que podría cambiar. En primer lugar, he cambiado mi dieta y corte con los refrescos de soda. Entonces empecé a hacer ejercicios un poco más. Me aseguré de mantener en control de mis medicamentos y pedía ayuda cuando la necesitaba. Poco a poco, empecé a sentirme mejor y empecé a recuperar el control de mi vida. Más adelante en el mes pasado cuando mi compañía de seguros decidió que no era "lo suficientemente enferma", aunque toma nota de mi médico y laboratorios decían lo contrario, se suspenderán mis beneficios. Tremendo, otro problema más. Esta vez, sin embargo, tuve la oportunidad de lidiar con esto de otra manera de una manera completamente nueva. En el momento en que leí la carta de rechazo me tomó un momento enojarme y luego comencé a hacer un plan de juego. Yo no estaba negando mis emociones de sentirme con pánico, enojada y decepcionada, pero no dejé que la negatividad me consuma como lo hizo antes. Me concentré en lo que realmente se puede cambiar y, al final, llegué a idear una solución que no tenía nada que ver con seguros, SSDI o cualquier otro tipo de sistema de apoyo. Tratando de hacer frente a un problema gigante no funciona para mí. En cambio, rompí un obstáculo insuperable en pedazos manejables.

No todo el mundo tiene lupus, pero todo el mundo tiene su propia cruz que soportar, por falta de una mejor expresión, de una manera u otra. Me he dado cuenta de que algunas personas van por la vida ilesas, mientras que otros tratan tragedias cotidianas. Todo lo que puedo centrarme en es mi vida y lo que puedo hacer para que sea tan agradable como pueda. Cuando no estoy en mi mejor momento, no niego lo que siento, pero cuando la vida comienza a acumular más de lo que puedo manejar yo enfrento a los problemas de frente y ya me niego a preguntar mas "¿Por qué yo?".

Translated by Nancy Arocho: tengo_lupus@live.com

Superando a la Mariposa por Geoff Thomas - la revista de lupus

2011-03-05T22:20:00.000-08:00

Superando a la Mariposa

Conoce a las sorprendentes señoritas detrás de un proyecto de lupus muy notable.

Geoff Thomas habla con Sophie, Kirsty y Katrina, y descubre cómo una pulsera tipo banda púrpura para la concientización por lupus lleva a un proyecto inspirador por tres estudiantes Ingleses en medios digitales.

(La Revista de Lupus)

Es sólo una cuestión de tomarse unos meses, pero el legado de un proyecto de concientización sobre lupus a través de medios digitales en comunicación por tres niñas maravillosas es seguro que beneficiará no sólo a los del Reino Unido, sino en todo el mundo.

Cuando a Sophie-Louise Lillo, Kirsty Charles y Katrina Teobald, del Colegio Universitario Falmouth en Cornwall, se les asigna un "proyecto comunitario" relacionado con sus estudios, Supera a la Mariposa nació. Y como consecuencia, los primeros resultados han sido abrumadores, no sólo a las chicas, sino a la comunidad de lupus en línea alrededor del mundo que han adoptado sus esfuerzos para recaudar fondos y crear conciencia sobre el lupus para St. Thomas' Trust en Londres, y el lupus en general.

Sophie, una cuidadora de su madre quien tiene lupus, junto con Kirsty y Katrina, han establecido un sitio web refrescante, produjo un vídeo de concientización increíble y continuar para recaudar fondos para St. Thomas Lupus 'Trust, una organización benéfica que recauda fondos para apoyar las vitales y el trabajo pionero del Equipo de Investigación de Lupus del Hospital St Thomas en Londres. La directora de la campaña de Fondos, Angie Davidson, quien también sufre de lupus, acogió Supera la Mariposa y se inspira en el esfuerzo y progreso que las chicas han hecho en las últimas semanas.

Sophie, la Directora de la Campaña Supera la Mariposa, por lo general pone al día el grupo de Facebook y Twitter, respondiendo personalmente a cada mensaje en nombre del equipo. También supervisa el la campaña mientras esta al cuidado de su madre, Mandy, y estudia dos grados universitarios. Katrina gestiona todos los pagos de mercancía, mientras mantiene que el grupo siga por el camino correcto y se asegura de que las chicas se desbordan con su carga de trabajo! También ayuda a su propia madre que tiene artritis. Kirsty ha diseñado y gestiona el sitio web, actualizándolo y añadiéndole al mismo, así como tratar mantenerse envuelta en asuntos de lupus, ya que era la único miembro del equipo que no había oído hablar realmente de la enfermedad antes de involucrarse con Superando la Mariposa.

Así que vamos a conocer con las señoritas detrás de Supera la Mariposa, echen un vistazo a su página web y vean su video sorprendente concientización de lupus...

Geoff: Asi que, cuéntenme la historia de cómo Supera la Mariposa fue creado.

Sophie: Justo antes de Navidad, como parte de nuestra Carrera Universitaria, nos dieron un "proyecto comunitario", que significaba que en lugar de trabajar para nosotros mismos para crear algo para nuestro portafolio en trabajos, tuvimos la oportunidad de salir y ofrecer nuestras habilidades para una organización de caridad de nuestra elección. Así que nos sentamos, y entre nosotras, comenzamos a pensar en lo que nos gustaría trabajar; investigando un montón de diferentes organizaciones benéficas, pensando en cual se beneficiaria de las habilidades que tenemos para ofrecer. Entonces, mientras estábamos hablando, Kirsty notó la banda púrpura que llevo en mi muñeca y viendo que era una banda de caridad que ella no conocía, me para que caridad era. Se quedaron en blanco cuando les hablé del Fondo de St Thomas para Lupus, así que empecé a explicarles lo que era lupus y cómo mi madre sufre de ella, entré en detalles sobre lo que pasó cuando tuvo su primer ataque de lupus y expliqué cómo funcionan múltiples Lupus.

Katrina: Después de hablar de Lupus y haciendo una investigación sobre la enfermedad, hemos tomado la decisión en grupo para contactar con Angie Davidson preguntándole si podíamos trabajar con ella para tratar de ayudar a crear conciencia de St Tomás y la investigación del lupus. Ella nos escribió de nuevo explicando que ella hizo todo por su cuenta y realmente nos sorprendió! Una sola mujer lo hizo todo? Eso es una locura!

Kirsty: Así que, antes de que nos diéramos cuenta ya corríamos con conceptos, ideas y diseños (risas)... que no hicieron a Sophie muy feliz!

Sophie: (mirando cómicamente impresionada)... sí, por desgracia para mí, tengo Lepidopterophobia (ansiedad o miedo a las mariposas y alevillas), por lo que tenerme a mí haciendo el diseño del logotipo para la campaña no era ideal. Sin embargo, como estoy segura que usted podrá imaginar, estas dos se quedaron sorprendidas...

Kirsty: La ironía todavía me hace reír! Pero después de que los reclamos de Sophie habían cesado y de haberla obligado a cooperar, tuvimos el diseño finalizado. Sin embargo, todavía no teníamos nombre para ir con el logo. Así que, buscando en el diseño de la mariposa de Sophie, y sabiendo que estábamos luchando por encontrar una cura, Kat sugirió "Supera la Mariposa '... y así, la campaña nació.

Geoff: ¿Me pueden dar un poco de información sobre lo que estás estudiando y tus ambiciones?

Sophie: Bueno, estamos estudiando todos los medios digitales y Difusión de la Universidad. Nuestro curso, básicamente, nos enseña la producción cinematográfica y de televisión; SFX, web 2.0, diseño de sonido, iluminación, edición, trabajo con cámaras... cosas por el estilo. Pero a pesar de que estamos en el mismo curso, todas tenemos cosas muy diferentes que nos gustaría hacer a después de la graduación. Estoy planeando ir a la producción y la dirección de largometrajes, Kirsty tiene planes en educación y Kat espera dirigir televisión en vivo. Pero a pesar de todas las cosas multimedia que hacemos, todas tenemos distintos intereses y nuestras previas experiencias también nos ayudaron con la campaña.

Katrina: Sophie probablemente es la más que estudia ya que es el estofona del equipo y tiene una extensa lista de temas. Kirsty hace ya muchas obras de caridad, que incluyen principalmente correr maratones y voy a admitir que soy la que ve demasiada televisión ... así que entre nosotros, descubrimos que podíamos recurrir a una gran cantidad de intereses externos a fin de llegar a algunas ideas originales para crear conciencia.

Kirsty: También ayudó porque significaba que podíamos mirar a este proyecto desde una perspectiva diferente. Se nos ocurrieron formas de avanzar hacia nuestras metas a largo plazo que nunca hubiésemos pensado tener si solo trabajamos la campaña solo desde la perspectiva de los medios de comunicación.

Sophie: Nuestras ambiciones ahora, son sólo continuar trabajando duro en todo, trabajando en nuestras carreras y la esperanza de que no perdamos más oportunidades de ideas en el camino! Sin embargo, creo que vamos a estar bien. Si ponen las tres juntas en una habitación y algunas grandes cosas pueden suceder!

Geoff: Entonces, ¿cómo las tres de ustedes se juntaron como equipo para este proyecto?

Sophie: (bromeando)... Bueno todos los demás parecían estar ya en un grupo, así que tuve que trabajar con ellas, realmente, prácticamente fui forzada por Kat!

Katrina: Creo que usted encontrará que es a la inversa – que la mandona es Sophie!!!

Kirsty: (riéndose)... Ambas son tan malas una como la otra!

Sophie: (risas)... Nah, honestamente, hemos sido buenas amigas desde el comienzo de la Universidad, así que sabíamos que trabajamos bien juntas. Decidimos que en conjunto hemos tenido una amplia variedad de habilidades en cada área de los medios de comunicación, que nos da mucha experiencia que aportar al proyecto.

Kirsty: Ninguna de nosotras había hecho una campaña antes, así que fue un poco arriesgado. Pero creo que es seguro decir que estábamos preparadas para el desafío. Así que nos sentamos y así comenzamos...

Geoff: ¿Habían oído hablar de lupus antes, o se han dado cuenta de lo devastador que puede ser?

Kirsty: Siendo totalmente honesta, yo nunca había oído hablar de lupus o St Thomás’ hasta que vi la pulsera de Sophie y cuando ella se describió cómo afectó a su madre no lo podíamos creer. Es decir, se trata de una enfermedad que más de 60.000 personas padecen en el Reino Unido, ¿cómo es posible que algo tan grande sea tan desconocido?!

Katrina: ¡Exactamente! A diferencia de Kirsty, yo había oído hablar de lupus, pero sólo porque sabía que la mamá Sofía lo estaba sufriendo. Yo no sabía lo grave que puede ser sin embargo, y no fue hasta que me senté y hablé con Sophie, luego fui a mi casa e hice una gran cantidad de investigación sobre la enfermedad, llegué comprender cierto concepto de lo que la enfermedad podría hacer. Sin embargo, para ser honesta, es insolente decir entiendo perfectamente la enfermedad porque, yo no sufro de ella. Pero es increíble cómo el lupus no se le da tanta prioridad como algo como el cáncer, por ejemplo.

Sophie: Kat tiene razon, mi madre tiene lupus y lo ha tenido desde hace muchos años, por lo que en realidad he crecido de ser una cuidadora para ella. He visto el efecto que tiene lupus a nivel personal, emocional, mental y físicamente agotador para hacerle frente, tanto para el paciente y su familia. Lupus ha causado tanto dolor a tanta gente y vivir con alguien que tiene diferentes formas de la enfermedad, todo en uno, es difícil. El hecho de que los médicos no les dan suficientes fondos para hacer investigación sobre el lupus, y mucho menos encontrar una cura es ridículo y " Supera la Mariposa” se espera que pueda ayudar a cambiar eso.

Geoff: ¿Han ganado alguna inspiración de su proyecto?

Sophie: Toneladas! Honestamente no hay palabras que describan lo emocional que estas últimas cinco semanas han sido para mí, personalmente. Escuchar las historias de gente de todo el mundo está más allá de increíble y contar con el apoyo de ellos, escucharlos elogiarnos por aumentar la concientización acerca de algo que obviamente tiene un impacto en sus vidas, es algo alucinante y sólo puedo esperar que sigamos ayudándoles en cualquier manera que podamos.

Geoff: Superando la Mariposa las ha persuadido a continuar la concientización para el lupus en el futuro?

Katrina: Trabajar en algo así como " Supera la Mariposa” realmente me ha abierto los ojos y me hizo consciente de que el lupus puede destruir vidas. Hemos puesto mucho en esta campaña que nos ha traído hasta las lágrimas por la cantidad de apoyo que hemos recibido.

Sophie: Kat tiene razón, algunas de las historias que hemos escuchado de nuestros partidarios han sido realmente increíble, y a pesar de que nuestro proyecto de título oficial ha terminado, no hay forma en que vamos a parar! Para seguir creando conciencia de St Thomás" sería una oportunidad increíble para todas nosotras ... y yo no creo que jamás querría dejar de ayudar a encontrar una cura.

Geoff: ¿Es emocionante ver que un número creciente de personas que aprecia sus esfuerzos?

Sophie: Es increíble! Estamos todas realmente sorprendidas por la cantidad de reconocimiento que hemos conseguido ya. Después de haber visto crecer a nuestra campaña, y la comunidad que la apoyan, me quedo sin palabras. Nunca, en un millón de años pensé que tres estudiantes podrían hacer una diferencia. Sólo puede ser una pequeña, pero el hecho de que estamos ayudando a Angie brinda optimismo a las personas que sufren de lupus, en verdad nos hace sonreír. Nos encanta lo que estamos haciendo y el éxito de la campaña hasta ahora es increíble que algo que comenzó como un período de cinco semanas de proyecto de la Universidad. Solo el hecho de saber que tenemos gente que cree en la causa que defendemos... es algo que nos deja maravilladas...

Geoff: ¿Puedes explicar la conexión entre el proyecto y la Fundación St. Thomas 'Lupus - y, por supuesto, Angie Davidson?

Sophie: " Supera la Mariposa” se puso en marcha, para llegar a la gente a darse cuenta de St Thomas Lupus Fiduciario para que la gente vea que Angie, una mujer quien sufre de lupus, hace absolutamente todo por St. Thomas" por su cuenta! Éste, mujer verdaderamente inspirador crea conciencia y recaudar fondos para una causa que debe ser conocido por muchos, pero no es, y para nosotros, eso es injusto. Supera la Mariposa “es algo que esperamos hacer tomar conciencia a causa de Angie y la gente a darse cuenta de que el lupus tiene que ser tomado en serio, con diagnóstico más rápido y se cura.

Geoff: ¿Qué esperan que Supera la Mariposa alcanza, tanto en la concientización de lupus y sus estudios?

Kirsty: Queremos que " Supera la Mariposa” ayude a la gente ver que St. Thomas necesita apoyo, que Angie necesita el apoyo, y realmente espero que alcanza un estado en línea más reconocido para que más gente nos conozca. Nos gustaría que corra de boca en boca, así, ganando seguidores y conociendo gente nueva e interesante con historias increíbles que están dispuestos a compartir con nosotros. Queremos que la campaña saque a Lupus a la luz, destacando los fondos que Lupus St Thomas 'Fiduciario necesidades y mostrando a la gente que puede ayudar haciendo cosas como unirse a los grupos de Facebook, nos sigan en Twitter, que celebren eventos para recaudar fondos propios, y por supuesto donaciones a St. Thomas 'mediante la compra de las pulseras y brazaletes.

Katrina: En cuanto a los estudios, nos gustaría mucho que esta campaña nos haga notar como personas tratando de hacer una diferencia. Obtener una buena calificación también sería genial, pero más que nada, estamos contentas, podemos decir que hemos conseguido sacar esto adelante ... tenemos que partir de cero para ayudar a una buena causa y no hay mucha gente que pueda decir que han hecho eso.

Geoff: ¿Qué mensaje tienen para cualquier persona recientemente diagnosticada con lupus?

Sophie: No estás solo, recuérdalo siempre. El lupus es una cosa que da miedo tratar, pero hay toda una comunidad de gente de aquí para apoyarle. Nunca olvide que mientras siga sonriendo y recuerde, no importa lo que pase, usted es una persona fuerte... estará bien.

Geoff: ¿Hay algo más que quieras agregar?

Sophie: En nombre de todos nosotras, me gustaría decir un gran gracias a absolutamente todos los que nos ha apoyado hasta ahora. El hecho de que hayan tomado el tiempo de ver incluso en nuestra página web y se interesan por todo lo que estamos tratando de lograr con Angie, es algo que siempre estaré agradecida con usted! Hemos conocido a gente encantadora que han dado su tiempo para escuchar lo que tenemos que decir y nunca olvidaré eso. También nos gustaría aprovechar esta oportunidad para dar las gracias a La Revista de Lupus por compartir nuestra historia con sus lectores.

Geoff: Es un placer absoluto:)

© La Revista de Lupus y Supera la Mariposa

first hospital tales of the year - trash talk - by johnny trash

2011-03-05T22:10:00.000-08:00

Trash Talk

by Johnny Trash ©

Warning: Some language may offend!

First published in The Lupus Magazine

First hospital tales of the year!

Soooo... I must apologize for my very short article last month – I was waiting to go into hospital – rest assured though, I had everything on the essential JT list…

So yeah… On the 20th of January I booked into my luxury accommodation at ‘D’hôtel Chapel Allerton’ (you gotta say that in a French accent – ‘ Loooootelll Shapeelllll Alllertoooon’ sounds posh n’est pas?

My hotel accommodation consisted of a room with 6 beds and an en suite shower room and communal plasma screen TV – And my roommates? – 5 pissy grannies. I was positioned furthest away from the TV with a blind woman right next to it! How unfair is that for fucksake?!

On my first day whilst eating my pistachio nuts, Mavis next door was given an enema. Such larvely noises and smells whilst she was sitting on her commode. It didn’t stop there – for every time Mavis bent over or moved she farted! Mavis was a human fart machine which kind of made me laugh. Every time she got up and walked her arse talked! – Farting is funny right?

Mavis also offered me a tinned Salmon sandwich from a lunchbox under her bed. I politely refused saying I had a salmon allergy. Tinned salmon makes me retch as it is, but in the hands of a 96 year old woman with the shits - hell nooooooooooo!

Perhaps though in hindsight, I should have accepted because ‘surprise surprise’ they fucked up my gluten free meal and I ended up with a plate of salad! Nom nom!

After tea came the lovely warfarin injections – I refused to let the junior doctor give it to me and said I’d do them myself every day much to the surprise of the staff on the ward, but:

1) I aint having a junior doc who’s never injected before attacking my stomach
2) I’m very familiar with injecting myself (with chemo that is - I’m not a smack head!)
3) I don’t bruise myself and…
4) I don’t say ‘just a scratch’

Post Warfarin, the old biddies decided to turn the TV on to the FUCKING LOUD setting and I had to endure Home and Away and Neighbours aaaargh. So bored was I, that I decided to read the Bible I found in my drawer. I only read the first and last page – the ending was shit!

Then I couldn’t get too much sleep due to the soundtrack of farting and snoring throughout the night. I was woken at 6.30 am by a lady shouting ‘breakfast love’ really loudly in my ear – I declined and said I’ll have a fag and a brew at about 10.

Later that day Mavis had her daughter visit her. She was taking Mavis out for a stroll in her wheelchair and said, “Can someone look after my coat and bag?”
She then turned around and went to hand it to me then backtracked and gave it to the woman at the end of the ward. I think it was the mohawk, tattoos and piercings because that makes me a very strong suspect for purse robbery!

84 year old Annie across from me started chatting to me. She was a funny old dear. I did however feel really tight when she said, ‘Ooh love, I could kill for a rum and coke.”

I had a 2 litre coke bottle laced with rum sitting next to my bed and I’d have given her some, but she had been told strictly to avoid alcohol for her high blood pressure, bless her! She also liked my red and black stripy socks and said they were very ‘gay.’ Ha-ha… that ALWAYS makes me laugh when old people use that word. My stripy knee length socks rock. They proved very useful as tobacco and lighter holders throughout the week.

I was in fact very impressed with the old biddies on the ward. They all had mobile phones and spent the entire week frantically texting their bingo buddies. Whatever next? I should have brought the wii in we could have played wii lawn bowling!

Now I had been having problems with actually receiving my gluten free meals that week. They kept sending me meals with wheat which were sent back pronto as I sat arms folded waiting for something I could actually eat. On about the fourth day though, my temper had become very frayed indeed. The dinner lady said I hadn’t ordered anything and I bloody had! She said, “Well, we haven’t got anything for you.”

Up until this point, (and bearing in mind, four days is good for me) I hadn’t sworn at anyone. Sitting there starving after being offered a bit of lettuce I hit the fucking roof!!! I think the exact words were, “Fucking sort it the fuck out!”
I ended up with some tuna, two bowls of rice krispies and two extra cups of tea. Not much I know… And I overheard the old biddies, whilst I was in the loo, talking in stage whispers saying I was their hero ha-ha!

I couldn’t sleep that night so I decided to have a go at my ‘deep relaxation – self hypnosis’ phone application. I was doing really well too – just dropping off to the dulcet tones of ‘Andy’ saying ‘Relax’ when my fucking phone rang, giving me a dose of ‘Smells like Teen Spirit.’ I nearly filled my pants with cake!

Tea was messed up again the following day – no gluten free AGAIN! Because apparently again I hadn’t ordered any food! My Facebook status read as: ‘ Johnny is swearing, Johnny is swearing a lot, Johnny is calling the catering department fucking cunting liars. I’m gonna rip some cunts fucking head off. Stupid bastarding wanking fucktard piss stains!

Next time I go into hospital I’m dragging a sodding photocopier in with me to make copies of my ticks on the menu choices.

So anyway I was discharged five days after going in. Pleased to be back home in my own bed with some nice food and a hot bath, but that night I felt like I was about to die. And so the next day, after somehow driving to my doctor’s surgery and then having a febrile convulsion in the doctor’s room, my doc took my temperature which was 39 degrees. She got straight on the phone and booked a bed at the ’53 men went to mow a meadow’ hospital.

I was actually too ill to cause trouble when I got there with pyrexia and a very red and swollen arm which I couldn’t move. I spent the night on IV antibiotics and drugs to thin my blood thanks to another hospital giving me sepsis and blood clots in my arm.

The next day however, I felt much better after the meds and thus came dinner time...

And this is what is says word for word in my diary:
‘Have just told the dinner lady to fuck off out of my fucking face for ‘throwing’ my dinner nearly on me and calling me a ‘bloody liar’. I did NOT order breaded fish you cunt because I can’t have wheat and bread is made from WHEAT. Got my salad given, sorry – thrown at me, with some sponge pudding which ended up everywhere cause I attacked it with a spoon! Retards – total retards’ Ps – the dinner lady has just reported the patient in bed 12… ahem’

I am SO looking forward to my next visit!

An Ode To An Overworked Lupie by Jules Sherred

2011-03-05T22:05:00.000-08:00

An Ode To An Overworked Lupie

© By Jules Sherred.

First published in The Lupus Magazine

To say I have too many things on the go at the moment would be a huge understatement. My time is becoming more and more finite. I seem to be running from one crisis to another. Balls have begun to drop.

When these things begin to happen and I start to feel as if I am in crisis, I try to reach out. When I reach out, the main thing that I need is to just vent. You see, I have a process. I am the type who quietly contemplates, as I figure out the solution to my current problem. Once I am done contemplating, I move on to fixing the situation. But before I can do that, I need to vocalise it. Until I vocalise it, in my mind, the issue is not real, but rather come abstract concept. So when I vocalise it, it is only to be heard.
A lot of the time, people forget this. They offer up unwanted advise, thinking they are being supportive. They tell me things that show me they have no idea who I am, what I need or why it is that I do the things I do.

And then someone will do something, something small, which shows me they actually pay attention to the way I work and the things I need. And this something small gives me some added stamina to fight my way through the things I cannot give up, without giving up who I am. Tonight was one of those nights.

I had to cancel yet another appearance because I'm really having to pick and choose where my time is going. I came very close to not even having an article for the March edition of The Lupus Magazine. Then one of my staff members, Egberto Willies, decided to give me one of the best gifts any one has given me in a long time. He asked if he could write something for me. And in the process, I came to realise he actually sees me and hears me. All it took was for me to say one sentence and he knew.

You will find it below. I'm not going to give any more back story, as I feel Egberto has said all that needs to be said at the moment. And I am thankful.

An Ode To An Overworked Lupie

Feeling sympathy for a fellow human is easy. Being empathetic to what someone is going through requires the ability to feel someone? pain through personal experience or being in close relations with said similar experience.

It all started with a Facebook IM from a dear friend who asked me to listen to his radio show on the TheForce925.net. After listening I spoke to him about a political talk show and he immediately told me to contact Julia Sherred, the Assistant General Manager and Programming Director of the station. She set up a Skype meeting a week later and my ode to my overworked lupie began.

She accepted me on staff after a short discussion of what I wanted to do and our discussion turned immediately to Lupus. Interesting enough my wife has had Lupus for the last 18 years or so. As such I am well aware of the pitfalls, the pains, the fatigue, and simply the desire to sometimes give up. I am well aware that you can be fine now and 20 minutes later be as sick as an 80 year old.

I build websites and write communication software for a living. As such I am well aware of the amount of time and mental fatigue in building a site from scratch. Moreover, configuring a server and ensuring as close to 365/24/7 uptime is an ardent task. Julia did much of that in just a couple of months. This had to be extremely stressful. Lupus sufferers know that this is a sure way to trigger a Lupus flare.

Most Lupus sufferers I met over the years were complainers that never attempted to supersede the disease. My wife was one of the few exceptions as she was very involved in a myriad of activities including strenuous exercise which many Lupus sufferers run from. Meeting Julia was refreshing because it was inspiring meeting another person with this chronic disease that excelled not only over other Lupus sufferers but over many a healthy person.

Julia is a regular guest on my political show on Saturdays. She sent me a short email saying she would forego my show this weekend because she was tired. Knowing Julia and understanding the disease made me cognizant that there was more to that one line. That one line from her meant she was approaching that breaking point. That one line meant Julia was in trouble.

I Skyped her right away and pretty much demanded a factual answer. She said she had to write an article, take care of her kids, and take care of her KIDS; KIDS being those who should be able to take care of themselves. I knew what I had to do. I asked her to let me write her article, this article. My prose here on Julia is exactly what a Lupus sufferer needs to hear. My prose here is exactly what a Lupus caretaker needs to hear.

As long as one can remember that we all go through issues it is imperative that we maintain a degree of positivity naturally or forced. You see, a Lupus sufferer can be active, sick, vulnerable, strong, productive, tired, effective like any one of us just through a different biorhythm some of the times. You see, my ode to Julia is also an ode to you.

Egberto Willies...

The Importance of our Medication by Nancy Arocho - La importancia de nuestros medicamentos - Por Nancy Arocho

2011-03-05T21:57:00.000-08:00

The Importance of our Medication

By Nancy Arocho

First Published in The Lupus Magazine

Every morning and every night my stomach closes up when it’s time to take my medications. On Thursday night I didn’t take them. I couldn’t sleep, my hands began to ache and stoop. My pillow, my bed and even the blankets hurt to touch. A gentle caress hurts me like if someone would put a heavy block anywhere I'm touched.

I also take a sleeping pill; that one I took but still could not sleep because of all the pain. I was tense and nervous for no reason. Awful! I was definitely beginning to flare-up. It was already 7am, and still aching, I struggled to get out of bed. I finally managed to sit and transfer to my wheelchair (getting out of bed is something most people do without having to think about it - no need to put in the effort. It’s an everyday thing for many, but this time it became a difficult task for me).

I pushed myself to the kitchen desperate to take my pills. I took them, returned to my bed and tried to relax. And in less than an hour I began to feel relief. The pillows and blankets didn’t hurt anymore. At that moment I thought, "Oh, bless my pills that seem so miraculous." I could bend my fingers without much pain and my hands were much better.

Finally, I fell deep asleep and woke up hours later with the usual little aches and those you get used to tolerate after a while, yet they were nothing compared to the little crisis I had this time. I began to meditate and gave thanks, for my daily pain is insignificant compared to the horrible crisis that I had years ago. I know many of you understand me, as a person with a chronic illness knows the difference too. Many of you strongly hurt every day. Many of you know the effort we make to get out of bed. I think of the people I've met online, many of whom cannot afford to see a doctor or obtain their medicine. To those of you who have permanent damage to your bodies, my respects. Well, I do see now that my struggle is small next to those.

I give thanks for my pills, though sometimes I hate them so much, and at the same time I love them too because my life currently depends on them. Therefore, we should be grateful for what we have. Of course we may get tired and upset for taking much medicine all the time and some also have side effects. It always seems like we are never completely satisfied with them.

Well, let’s focus on the satisfying part. When a tiny pill can help you get out of bed with ease and takes away or reduces our pain, the temporary side-effects shouldn’t matter.

You're not alone in this fight, we are with you. You shouldn’t have to stop your life or think of how good you looked before; most side-effects like the moonface from steroids, will go away after the treatment is stopped. Therefore go out and enjoy the day. Even though life can be hard, it’s filled with so many lessons and many beautiful things to enjoy.

Bring out the warrior in you; there is a fight to fight and a life to live. Again, remember, you are not alone, there are many sources of support like family, friends and online. Be appreciative for receiving such support, though don't expect anything from anyone or you might end up disappointed. When you receive support without expecting it, it’s a totally different feeling. Keep strong and brave, and let your wings let you fly up high.

May your days be painless and filled with joy...

By Nancy Arocho ©

Nancy Arocho kindly volunteers to translate our articles and is the editor of the Spanish Edition of The Lupus Magazine

La importancia de nuestros medicamentos

Por Nancy Arocho

Todas las mañanas y todas las noches mi estomago se cierra a la hora de tomarme mis medicinas. El jueves en la noche no me las tomé. Mis manos comenzaron a doler y encorvarse. Mi almohada y mi cama, hasta las cobijas, lastimaban mi cuerpo. Una suave caricia me dolía como si me pusieran un pesado bloque donde me tocaran.

También tomo una pastilla para dormir, esta si me la tomé y aun así no pude dormir de tanto dolor. Estaba tensa y nerviosa sin razón. Que horrible! Definitivamente se me estaba activando mi lupus. Ya eran las 7am, agarré fuerzas para levantarme, sentarme y pasarme a la silla de ruedas, (movimientos que uno hace rápido sin pensar como parte de la vida diaria, pero en este caso se había convertido en una tarea difícil). Me empujé hasta la cocina en desespero para tomarme mis pastillas. Regresé a mi cama a tratar de relajarme. Y en menos de una hora comencé a sentir alivio, la cama y las cobijas dejaron de lastimar mi cuerpo. Pensé: “ay, benditas mis pastillas que parecen milagrosas”. Luego pude doblar mis dedos sin mucho dolor, mis manos estaban mucho mejor.

Por fin caí en un sueño profundo y desperté horas después con los dolorcitos usuales, los cuales ya me acostumbré a tolerar, dolores insignificantes después de la pequeña crisis que me comenzó. En estos momentos, me puse a meditar y doy gracias porque mis dolores diarios son insignificantes comparadas con las horribles crisis que tuve años atrás, sé que muchos de ustedes me comprenden pues una persona con una enfermedad crónica sabe la diferencia también, muchos de ustedes hoy duelen fuertemente todos los días, muchos de ustedes saben el esfuerzo que se hace para levantarnos de la cama. Pienso en las personas que he conocido por este medio, muchos de los cuales no tienen dinero para ver un doctor u obtener sus medicinas. A ustedes con daños permanentes en sus órganos. A todos ustedes, mis respetos. Pues me hacen ver, que actualmente, mi lucha es pequeña al lado de las suyas.

Yo doy gracias por mis pastillas, aunque a veces las odio también las adoro, pues hoy día mi vida depende de ellas.

Por esto, agradezcamos lo que tenemos. Claro que tanta medicina cansa y disgusta, algunas también tiene efectos secundarios, siempre habrá algo que no nos mantenga completamente satisfechos. Pues miremos la parte que si nos satisface. Cuando una pequeñita pastilla logra que te puedas levantar fácilmente de la cama y te quita o reduce el dolor no importa los efectos secundarios temporeros, como por ejemplo, la cara redonda que nos dejan los esteroides, no estás solo, ni por esto tienes que detener tu vida n aguantarte en cómo te veías antes. Si puedes caminar, sal y disfruta el día. La vida, aunque sea dura, está llena de muchas lecciones y muchas cosas hermosas para disfrutar.

Saca el guerrero en ti, hay una lucha que luchar y una vida por vivir. Recuerda, no estás sola ni solo, existe muchas fuentes de apoyo, aprecia cuando te lo den, pero no esperes nada de nadie, puedes terminar decepcionado. Mucha fuerza y ánimos, y echemos nuestras alas para volar a lo alto.

Que sus días estén llenos de alegría y sin dolores,

Nancy Arocho ©
Delaware, EE.UU.

Nancy Arocho: tengo_lupus@live.com