Why the butterfly?  People living with Lupus often have a rash on their face called a malar rash.  Commonly called a 'butterfly' rash, it appears across the nose and cheeks, in the shape of a butterfly's wings.  You will find a different butterfly on each page, representing how different Lupus is for each person. Experiences With Lupus

Want to share your lupus experience with others? E-mail us your story and we'll post it here! Pictures welcome, but not required.



'People say I'm the picture of health. If they only knew how I'm suffering on the inside. I struggle with the pain and overwhelming fatigue of Lupus. And with the fear that I'll never be okay...that I'll be sick for the rest of my life.' (- An Unknown Lupus Patient)


TAMIKA'S STORY

Hi, my name is Tamika and I'm 39 years old. I was diagnosed in 2001, but actually have been having flares since 1997. My flu-like symptoms would come and go along with excruciating arm pain, which radiated to my shoulder. My nodes in my elbow region would swell, throb and were tingly-tender to touch. The fatigue became so overwhelming-- but somehow I would make it through the work week..only to vegetate all weekend long... and start all over again.
My family doctor referred me to a rheumatologist in 1999, and he diagnosed me with fibromyalgia. I was treated with anti-inflammatories, but they upset my stomach. My family doctor suggested an anti-depressant. Maybe it was a pride thing, but I just couldn't figure how that was going to help me!
I began reading and self-diagnosing; this was easy since I worked in a hospital. During this time, my 16-year-old daughter began having similar symptoms and was diagnosed with Infectious Mono and Epstein-Barr Virus. Ding ding... the light went off and I figured perhaps this is what I had also.
I was symptom free for about 6 months, but they returned with a vengeance. My bloodwork revealed a very low platelet count, so I was referred to hematology/oncology where the doctor ran multiple tests; extensive bloodwork, CT scan, total body bone scan, bone marrow biopsy, MRI and ultrasounds. This revealed that my spleen was enlarged and that I also had a cyst in my pelvic region. The oncologist concluded that I was just a mystery; he thought my spleen was diseased and just needed to come out, so he referred me to a surgeon and then a gynecologist (for the pelvic cyst). Both concluded that I just needed to watch and wait. In the meantime, I felt like I was literally dying.
Then my family doctor decided to refer me to the Mayo clinic in Jacksonville, FL. Guess what? I stumped them too. I've concluded that I developed the lupus after my bout with Mono and Epstein-Barr (I also had Mono as a youth). I think my system was just weak since I had been through multiple surgeries (for endometriosis), post stress (a divorce), post trauma (from an abusive spouse), and post viral infection. So accordingly, I was bing, bing, bing - in all categories to be a prime candidate.
The good news, however, is that when my daughter was at her worst, I was actually feeling pretty good. So I know the Lord is faithful and does not give you more than you can bear. I have a pretty high tolerance for pain, and I'm not sure if that's a good thing, but I am happy to report that I am only taking 20 mg. of Paxil per day and nothing else! I quit taking the Plaquenil, Prednisone, and Celebrax. I did not like taking all that medicine and felt like I was only masking symptoms and the side-effects seemed more damaging than the disease!
My latest Doctor visits are dealing with the spleen and cyst again. I'm waiting for the gynecologists' input on whether or not he thinks it should come out; it has gotten bigger in the past year. They think it is probably an ovarian remnant and nothing serious.
I'm also actively "flared" at this time! I was wondering if anyone out there knows about any linkage with lupus and endometriosis?
Thanks for reading my story and I pray that you will be blessed with healthy days and positive experiences to glorify God in all you do. Please feel free to e-mail me anytime: butterflymeek@yahoo.com
- Tamika




JANNILLE'S STORY

Hi my name is Jannille and I have lupus. My story is not typical; it takes most people months or even years to get a proper diagnosis. Lupus for me has been more of an emotional struggle than physical and you might find it interesting the way I was diagnosed!
It was what should have been one of the most wonderful times of my life. My third daughter was born 7 weeks earlier and she began to develop "sunburn type" rashes. At first, they were similar to eczema, and we dismissed them as being due to "sensitive skin", which runs in both my husband's families and mine. The only other possibility that we could think of would be an allergy of some sort. The rashes continued for weeks, and gradually got worse, so I scheduled an appointment with my daughter's pediatrician.
I wasn't nervous about the appointment, just assuming that it was a minor problem that a change in diet or a cream or lotion would cure. The very first thing the doctor said to me was "This is not an allergy, sunburn, or eczema"! She mentioned two possibilities, both of which were very frightening! The first being a very rare disease affecting nearly every system in the body, and if she had that disease, basically we would sit back and watch her die; it wouldn't take long, a few weeks at best! The second possibility was neonatal lupus. This was a term I had never heard of and since I didn't have lupus, how was this even possible?
After two weeks of waiting for the skin biopsy results I went back to the dermatologist who did the biopsy and she said the rashes were most definitely due to "an autoimmune antibody". She informed me that the antibodies were passed from my body to my daughter's via the placenta during the pregnancy, but that she would most likely not develop SLE and she would be a healthy normal baby. She did say, however, that I needed to see a rheumatologist for a blood work up.
Devastation isn't even the word for the way I felt; I, being 24, happy and thinking I was healthy - I had lupus? And no one could tell me "when" "how" or "why"! I went home, and cried - I just cried! In fact, I don't think I stopped crying for days! I did lots of research and one thing just kept popping into my head: "I have always enjoyed the thought of living to be an old lady and now I don't know if that's going to happen!"
It has been almost a year now, and the baby is completely free of the rashes and she didn't ever have any blood abnormalities or heart defects; she is doing great!
As far as my health, I am doing fine. I think the biggest struggle for me is with depression and anxiety. I am very fortunate, in fact I feel extremely blessed, that I am not using any medication at this time for anything related to lupus and, aside from chronic fatigue, I feel pretty good! I have had two work-ups and thus far no organ involvement; words can not even express how blessed I feel for that!
I think the most important thing to remember for all of us, whether we have mild or severe SLE or somewhere in between, is that each and every day is a gift from God and loving one another will make us stronger, more resilient people! I often find myself wanting to help others and to be a better wife, mother, daughter, and friend. Maybe that's part of the lesson in this trial. I believe lupus has made me a better person and for that, I'm very grateful.
- Jannille




MARCY'S STORY

Hello fellow Lupies!
I guess my story is pretty similar to so many others!! I was nine when I first started to get sick. I came down with a very high fever and a terrible rash after a day in the sun (my very last day in the sun, although I didn't know it then!) What followed was years of questions and pain with no answers. I suffered from extreme joint pain and swelling, muscle pain and inflammation in my chest. I soon also began to have horrible headaches and bouts of terrible confusion. I was soon unable to attend school and was homeschooled through middle and high school. I lost most of my friends and came to depend mostly on my amazing mother, who is also a Lupie.
Over the years I saw doctor after doctor. Most dismissed me as a "hypochondriac" or "attention seeking" when they could not figure out what was wrong with me. My ANA count was consistently normal. I was told I had Chronic Fatigue, Epstein Barr, all the usuals. Finally I found one doctor who looked at my symptoms and told me I had Lupus. I asked him about the ANA and he assured me that there were others like me that had normal ANA results. I was both devastated and relieved to finally have an answer. I was fourteen years old. My biggest problem had become the headaches, which prevented me from even getting out of bed. I was treated with all the usual anti-inflammatories as well as Plaquenil, Cytoxan, Methotrexate and steroids. I had some limited relief occasionally, but mostly very little.
Over they years my lupus has slowly improved, which my doctor told me often happens in those who suffer from it at an early age. I have recently been diagnosed with Pseudo Tumor Cerebri, a condition which has, apparently, been causing my headaches. I had a shunt put in to keep the pressure around my brain down and that has helped.
Five years ago I married my highschool (although home-highschool!) sweetheart and he has been my constant support!
I fought my way through college, mostly working from bed or the hospital and now have my teaching degree. While I can't teach full-time, I do enjoy working as a substitute. I still suffer from fatigue and joint and muscle pain, but I am happy with what I have made for myself in life. What didn't kill me truly has made me stronger and I wish the best for all my Lupie brothers and sisters! Keep fighting!!
- Marcy




PATTI'S STORY

My name is Patti and I am 21 years old. I was diagnosed with lupus 5 years ago when I was 16.
I had gone to Florida for vacation and for the first time in my life seemed to experience severe sunburn and was even told I just had sun poisoning. The whole trip I felt awful; I didnít know how exactly, except for the fact that I was extremely tired and I slept the whole time. When I came back home, I was taken to the hospital and was there for two weeks when they finally diagnosed me with systemic lupus nephritis.
I had a biopsy and it was determined that I had some mild involvement in all four tissue levels of my kidneys. They treated me with chemotherapy drugs for 8 months and after that I was perfectly healthy and lead a perfectly normal life... until a year ago.
One year ago, I passed out at work and was taken to the hospital. I was diagnosed with severe anemia; my red blood count was 4. It was also found out that I had an anti-coagulation and a coagulation problem, which has posed numerous problems. In the past year I have received over 120 units of blood products via blood tranfusions, including platelets and fresh frozen plasma, not including numerous iron infusions.
Two weeks after I got out of the hospital I was back in; I couldnít walk. I had a staph infection in my leg. A week later, I was back in the hospital again ... this time for something even more serious - my kidneys. Within 24 hours I was put on hemodialysis and they performed a kidney biopsy. I was in the hospital for a month because, after the biopsy, my kidney bled 6 units of blood internally.
Two weeks after I got out for my kidney bleed, I experienced two grand mal seizures (first seizure in my life) and lost consciousness for 4 days. After recovering from my seizures, I found that I could not eat. I did not eat a thing for one month and remained in the hospital so they could feed me through tubes and IV. One day after I was released for the eating and nausea problem I started throwing up blood, and you guessed it, I was back in the hospital for another month.
This time they didnít know what to do. No matter what they did they couldnít stop the bleeding. Finally they transferred me to another hospital and I was diagnosed with hemolytic uremic syndrome and antiphospholipid antibodies. I was put on plasmapheresis for another month in the hospital and given Coumadin, which stopped the bleeding within 2 days! Since then I have been hospitalized with a broken pelvis (my steroids have effected my bone density), pneumonia, congestive heart failure, pleuritis, pericarditis, nausea and vomiting (severe bleeding ulcers), numerous lung problems and several severely high fevers.
I have been hospitalized for over 200 days this year, several weeks out of the year in the MICU, ICU and CCU units. Needless to say the doctors and nurses have become close friends. Because of the problems, I have had to drop out of college this year and quit my job.
People, even some that are very close to me, do not seem to understand that I live day by day, usually in chronic pain and fatigue. Itís very hard to explain what exactly I am going through.
I know I will get better (I lived a normal life with lupus for 4 years) - itís just a matter of how much I am going to have to go through before I get there! I just look at it as I canít get too much worse or be in much more pain ... so there is only one direction to go... and thatís to get better. I am soon to be on a kidney transplant list and my doctors are hoping that will solve many of my lupus problems. So until then, I just keep praying.
-Patti, Ohio




BARB'S STORY

My name is Barb and I'm 60 years old in March. As a 2-year-old I had rheumatic fever, which doctors believe was the start of my lupus. I, of course, was not diagnosed with lupus until about 1985. By that time, I had suffered a whole lot throughout my life without knowing what was wrong with me. The doctors told me I was a hypochondriac.
Anyway, I ended up with clogged arteries in 1996 and had open-heart surgery. It has really been rough since that time. Lupies donít heal easily, do they? A year ago, I had gallbladder surgery and now my heart is irregular and I donít get oxygen like I should. HOWEVER, I look great! I look 20 years younger than I am and have no sign of illness on the outside.
Life is still OK. I have 4 wonderful little grandchildren that think I'm terrific and my husband and 2 adult children are pretty decent in dealing with my problems. I have been on permanent disability now for the past 5 years. God is still in His heaven and I believe in divine healing, so, well, here I come world! I ainít dead yet!
Lots of prayer has been my mainstay. A new treatment for lupus using a drug called minocin has helped me more than anything yet.
My biggest problem is the loss of friends because I never feel like doing anything. I'm a people person and hate being cut off from life this way. Anyone else feel like that?
- Barb, Michigan




KIM'S STORY

Hi, my name is Kim, I am 41 years old and I was diagnosed with Lupus (SLE) in 1982. When I first realized that there was something wrong with me I had started having pain in my joints. Mostly, my fingers and then it spread to my hips and legs. I had been to a doctor and she diagnosed me with arthritis and gave me some medicine. But, one morning I woke up and could not get out of bed, but had to slide to the edge in order to roll myself out of bed. It became difficult for me to climb stairs, walk or do anything that was too strenuous. Finally, I went to another doctor and he diagnosed me with Lupus after weeks of running test after test. He told me that there was no cure for the disease and I really didn't know much about it because there was not much information out at the time.
After being diagnosed with the disease, I was put on Prednisone, but it seemed as though nothing really worked to ease the pain. I found it very hard to sleep, the fevers were coming more often and the night sweats were very common. I was always in constant pain. I am single so I had to continue to work to support my two sons at the time. Then my doctor finally referred me to a rheumatologist after nearly 15 year of treating me with just pain relievers and Prednisone. During those 15 years I was hospitalized twice, once for two weeks and then again for a few days. I was given IV Prednisone and put on a breathing machine. My blood count was so low that I had to have a transfusion. I recall once when I was taking about 15 pills a day and was still in as much pain and misery as if I had not taken anything.
When I went to the rheumatologist he referred me to another specialist and a biopsy was ordered on my kidney. I then found out that the disease was affecting my right kidney to a certain point and I was put on Imuran. That did not work out too well so they put me on Plaquinel and Methotrexate, which I am now currently taking along with the Prednisone, and also Glucotrol XL for Prednisone onset diabetes.
A few years back I started to experience some very troubling symptoms and nobody seemed to have any answers for what was happening to me. I began to get very tired, I lost my appetite for about two weeks or more and I began to lose weight extremely fast. Then I had this pain that started in my right leg. Each time I went to the doctor I told him about it and he said that it was caused by the lupus. The area became very red, sore and tender to the touch. Eventually, I found myself at a surgeonís office getting my leg lanced to relieve the pressure and soreness in that leg. After that I began to experience all sorts of problems with my legs and even woke up one morning to find that I could not walk at all. Whenever I tried to put my feet down on the floor the pain was so excruciating that I couldn't even stand on them. I just sat around and cried for about a week. Finally, that problem went away and a new one developed. I began to get these painful open sores on both ankles and they became infected. The pain started all over again, a new more intense pain. I found out that my blood vessels had become inflamed and that problem went on for about a year.
Eventually I had to quit my job and now I spend most of my time focusing on the Lord and what his plans are for my life. I might have missed a few points, but I think I sometimes just choose to forget a lot of the symptoms and just live day by day. The pain still persists along with the tiredness and the night sweats, chills and aches.
But I thank God that I am here and that I can say that He has the last say in whatever happens in our lives, so I won't give up. I just thank God that there is more information and more support groups now for those who have the disease. People really don't understand what you are going through until they walk in your shoes. I pray that they don't have to.
- Kim, Virginia




MARIE'S STORY

I was diagnosed with SLE over two years ago when, for three days, I could not get out of bed because of the extreme pain in my joints. I thought I had the flu, although a week prior I was healthy, running 5 miles a day, kayaking with the US Olympic team training group, going to school full-time and working.
At first I was diagnosed with Rheumatoid Arthritis and put on steroids and Celebrex, but this did nothing to help. Eventually I went through 8 different medications, finally ending up on Embrel. I developed a septic infection from the Embrel and was hospitalized for two weeks; that is when I was diagnosed with SLE.
I know my story sounds like so many others; there have been many ups and downs, perhaps more downs at times. I don't want to bore anyone with details that are all too familiar to those of you with the disease.
To me the most frustrating part of the disease is the lack of public awareness of the disease. I went into several bookstores the other day (starting my Christmas shopping) and was so distraught to find that they had no books on Lupus. There were so many informational guides to other diseases (I am not knocking or belittling the extreme effects of these other diseases and disorders that affect many lives as well), but I was upset to find that there is little information out there on this disease that affects so many of us. It is hard to explain to people what Lupus is, and even harder to explain it to myself.
I would like to organize an event, a big event, that would have a substantial impact on many people; an eye opener and if possible a fund-raiser that would help teach others, open societies eyes to what this disease is and how so many people struggle with it everyday, people who look as if they are the healthiest around. Any help or suggestions would be greatly appreciated. I am willing to try anything, from educational lectures to hiking the Appalachian Trail to raise money and awareness. Thank you for your time
Best to all,
Marie(mquintin@aol.com)




TANYA'S STORY

My name is Tanya and I am 29 years old. In February of this year I was diagnosed with lupus. In early January I began noticing that I was extremely fatigued. Doing my daily routine was almost impossible. My low back began to hurt almost constantly. One night as my husband and I were going to bed, I reached over to turn the light out and that's when my husband saw this large red rash that covered the small of my back and down onto my hips. I went to the doctor soon after.
That trip to the doctor began a month long medical adventure. At first I was told that I had mononucleosis (Epstein-Barr virus) and that was why I was so tired. After seeing nine different physicians, I finally got the diagnosis of lupus. Right now, the lupus is flaring up and it's difficult. I was working, but was recently let go because I had missed too much work.
I am currently taking Vioxx (I love this drug) 25 mg every day, iron pills for my anemia, potassium, B-12 injections monthly, Aralen and Tylox for my severe back and hip pain. I believe that I'm dealing with this pretty well, although sometimes when I am so tired that I can't hold my head up and the pain just will not ease, I am tempted to give in to the self pity demon. But, I don't.
My husband has been an incredible support for me. He doesn't really understand how tired I get from doing simple daily chores. Since I'm not working out side the home, things can and do get a little tense. I am blessed because my husband is in the Air Force and all of my medical care is free, because it is a benefit of the military. That is a worry that I am so glad I don't have to deal with.
Thank you for letting me share my little story with you. We all need to hang in there - we'll make it.
- Tanya




MEG'S STORY

Hi! My name is Meg and I'm 16 years old. I was just recently diagnosed with SLE about 4 months ago. Well, I haven't had this disease for a long time, but oh boy, do I have a story! lol!
I'd had the flu since Christmas of 2000. Then my little sister came down with Fifth Disease. It's a rash on their body and they just don't feel good. Well, when adults get it, they get achy joints. Well, my Mom came down with it and then my joints started to ache. So my Mom just thought I had Fifth Disease.
Well, since I'm in high school, I run track and I do pretty well in it. I'm an All-City Sprinter. Well, the aches in my knees and elbows became so bad that I couldn't run anymore. I would cry every morning from the pain. This went on for about a month then I went to the doctor. She took blood tests and found that some of them came back abnormal. She then recommended me to a rheumatologist.
I stepped into his office with my mom and dad and as we were walking up the incline I was crying my pain was so bad! All he did was look at my blood tests from my other doctor and came back in and diagnosed me right away! I was put on Prednisone, Prilosec and Plaquenil.
I took the pills that night and felt like a new person! I went back to track on Monday and oh God I felt good! Well, when I was running I suddenly felt a little ill and went to a fence to throw up (which I did) and then my right hand started to tremor. The next morning I went to my rheumatologist and he admitted me into the hospital to see what was wrong with me. I went through MRIs, Advanced MRIs, CT scans, echocardiograms, spinal taps, angiogram. I was given 1000mg of prednisone intravenously for 3 days and put on blood thinners because they thought I'd had a stroke. I was released from the hospital and came back home. Well, I had to quit track. The thing I loved the most - 16 years old and can't do anything.
Well, to make this long story a little shorter, the doctors found a lesion in my brain that was caused BY the tremor. But the tremor itself was brought on by the lupus and called "Lupus chorea". It's a movement that your body can get at anytime and any place on your body. So it could come back anywhere and anytime. They put me on Klonopin and slowly that went away and I was weaned off of that. I also do chemotherapy (Cytoxan) once a month to help with the neurologic damage. The doctors came to the conclusion it was not a stroke and I got to get off the blood thinners. YEA! That means I get to play soccer in the fall!
Currently, life's OK. I am about to start my junior year in high school. I am on 60mg of Prednisone, 400mg Plaquenil, Prilosec, Bactrim, aspirin, vitamin C tablets, and Vioxx. I also go for chemotherapy (Cytoxan) once a month (no bad side effects from that yet!) Hey it all gets better right guys?! Just gotta stick with it! Good luck everyone!
- Meg



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Please note that neither I nor the individuals sharing their lupus stories are physicians. This area of The Lupie Bin is provided strictly for the purpose of sharing our experiences and feelings with one another as a means of support and validation. The opinions expressed here are strictly those of the person who gave them and should be treated as such. Lupus is a disease as unique as each individual and only your doctor can know what medications and treatments are best for you. Follow the directions of your own personal physician and ALWAYS consult your doctor before changing or discontinuing any treatments or medications. Thank you.



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