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Experiences With Lupus continued |
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Experiences With Lupus continued |
Want to share your lupus experience with others? E-mail us your story and we'll post it here! Pictures welcome, but not required.
Hello my name is Crystal and I have had lupus since 1998. This is my story.
I didn't know what was going on with my body. It just seemed to turn against me all of a sudden. I was tired all the time and still forcing myself to go to work. I was working so much that I really didn't have the time to go to the doctor.
One day I just could not get out of bed. My mother contributed it to just overworking. I then acquired the butterfly rash on the left side of my nose right under the left eye. My mother kept expressing that I should see a doctor. I just kept on working thinking that it would go away on it's own. I was using home remedies such as cocoa butter and Vaseline thinking that would cure it.
I was in the bathroom one day thereafter combing my hair that I had just permed...my hair started falling out right into my hands! It fell from the sides and from the top of the head. I began to become depressed due to the fact that I had no energy, a rash on my face that would not go away and now my hair was falling out.
I saw a sign on the train as I was going to work one day and it said, "If you have any of these signs you may have Lupus.... See a doctor." I didn't pay attention, although I had several of the symptoms. I kept on working until finally one day after being out of work for a week straight due to fatigue, I decided to see a skin doctor. By this time I had another lesion on my skin at the bottom of my chin. I saw a dermatologist who ordered several blood tests and wanted to take a biopsy of the lesion on my chin.
I returned to the doctor three weeks later. Three doctors came in and I asked them to give it to me straight. I thought that there was something wrong but never in my wildest imagination did I think that it could be lupus. They proceeded to say that I had a skin condition called Lupus. So I said, "Well give me a pill or a shot so it can go away." They told me that there is no cure. I sat there on the table and let that sink in. I didn't know what else to do. I could not cry or laugh or anything. Finally after an eternity (that is what it seemed like) they gave me a referral to another clinic on the same floor and some prescriptions for various creams.
Of course, over time, the creams did not work and the lesions spread across my breasts, down my back and down my arms. I was severely depressed because people would stare and no one would sit next to me on the train or the bus. It was like being ousted from the human race.
Soon after this I learned that I had 15 fibroid tumors in my uterus. I went into the hospital and wound up staying longer than normal due to the lupus that the doctors did not find out about until after the procedure was over. I had to have a blood transfusion also that I was severely against. I thought about it and decided that what could possibly go wrong? I already had a disease that there was no cure for.... So why not take the blood? I agreed to the transfusion and it was administered to me. Shortly thereafter my strength came back and I thought I would be going home in a few days. I acquired a 103-degree fever on the day I was to go home. So I was told that I would have to stay at least two more days to be sure that I was okay before going home. I cried and cried... I was thinking that nothing was going right in my life at this time and contemplated suicide.
Soon after I was released I started feeling a little better with the medication that was prescribed...but it was not helping the flares that were coming it seemed like every other week. The doctors determined that I needed some prednisone. I didn't want to take it but was advised that I would feel much better if I did. I agreed to a short burst of the prednisone by pills only. The lesions flattened to my skin and I thought the worst was over. But it wasn't.
Now I am just coping with the fact that I cannot work due to the fatigue. The flares are less frequent and I have learned to recognize when one is coming and how to cope with it so it does not last very long.
There are a lot of my friends who cannot seem to understand why I am so tired all the time. They think of me as the "get up and go" person that I used to be. When I try to explain they think that I am just saying that I am tired to get out of doing things with them. What they do not realize is that I am the one who deals with all of the hurt inside. I was used to doing a whole lot of things that I cannot do now… like being out in the sun and going to the beach.
I try to get my friends to understand exactly what I am going through and I even give them web sites so that they can be more educated about the disease. They say that they understand but I feel that they never will unless they walk where I am walking or someone in their family is stricken with this disease.
Right now I am just dealing with this day to day...taking my meds and trying to get as much rest as possible. Someone told me that I had to take the reins when it came to this and not to let the disease take me over...I had to take it over. I think of that during various times, but it can be hard, especially knowing that you will have this as a lifetime partner and there is nothing medical science has come up with yet. I still get depressed from time to time and I still cry. I also still live from day to day. I thank God for everyday that I am alive and I also thank those who are in my life constantly with positive views and solutions.
- Crystal
The first thing I noticed was that I had red cheeks constantly that wouldn't go away, and that was my introduction to Lupus. After blood tests, etc., I was diagnosed with Lupus and sent to a rheumatologist who knew about Lupus. Not many doctors know about Lupus and my internist was honest and told me he knew nothing about it, so he recommended someone who did. This was four years ago.
I have been through the MANY blood tests, and other tests, too, and was diagnosed with both Drug Induced Lupus (DIL) and the Systemic Lupus Erythematosus (SLE). For the past four years the doctor was always switching my medications which we found were causing the DIL flares. We found l6 different generic medications that caused me to have the DIL flares. Now, four years later, I am just about 'out of' the DIL, but I still have the SLE. I still get the SLE flares, the fatigue, the stiffness, the joint pains, the painful nights, and the 'hot oil' feeling on the skin. I have been in this latest SLE flare for three months and I am still in it. One day I hope to get into a remission, but until then, I take one day at a time.
I found the Lupus Support Group, about a year and a half ago, and have been so blessed meeting so many wonderful people in this chat room. The camaraderie in this chat room is so special, and so wonderful with everyone supporting each other.
I hope and pray that the researchers find a cure not only for Lupus, but also for all autoimmune diseases and all other diseases, and I hope they find it soon. My family does not to this day understand Lupus. Only those who are "lupies" know what I mean, because they are experiencing all the same symptoms, medications, etc., and we are told many times 'you look so healthy from the outside'. I am so glad for the existence of the Lupus Support Chat Room, a great place where everyone supports each other. I wish each one of you a 'good day' and I hope a cure is found soon. Remember; take one day at a time, that is all you can do, and enjoy each day.
- Anne, New Jersey
Hello, my name is Shara and I have Lupus. I am 34 years old and have 5 great kids. I was just diagnosed in October of 2000. I have had it for about 10 years.
I first noticed my symptoms about 10 years ago with my first bout of pericarditis. I was 23 and was healthy. I had pain everywhere but there was nothing wrong with me. My gallbladder was removed, hoping that was my source of pain. I was also having many bouts of kidney infection and kidney pain. I would have stroke like symptoms and yet the doctors said that there was nothing wrong with me. I began to feel as if I was a hypochondriac.
Over the 10 years I have had 5 major surgeries, 4 in the year 2000. I suffer from kidney pain, IBS, fibromyalgia, fatigue, anemia, chest pain, and mouth and nasal sores. Many days I feel so bad that I do not want to get out of bed. My knees hurt so bad sometimes I just want to cut my legs off at the knees - I never would because I love life but that is how I feel. I look forward to the day I have no more Lupus. I take Methotrexate. Prednisone, Lomotil, Naproxen, Levoxyl and folic acid (to help with mouth sores.)
I have gained about 20 pounds from the Prednisone. I hate it and I try to diet but it is such a battle. I wish that the people that say that "But you look so good" could see through a window in my body. Maybe they would understand just how I feel. I do not take pain for granted, for there are not many days without it.
Life is still so wonderful; through my pain I have the greatest, most understanding husband in the world. He never says a word; if I cannot get up to wash a dish, he just says, "you must be having a bad day." God, I do not understand why I have this disease, but you made up for things when you gave me Rich.
Every day we are that much closer to a CURE; that is worth getting up for in the morning.
- Shara, California
My daughter Amber was diagnosed with Lupus after spending 6 months with ace bandages on her legs for "sprains". Her pediatrician decided to look for Rheumatoid Arthritis and it came back LUPUS. She was only 8 years old.
She would come home from school each day with 103-105 degree fever, but not have it when she left in the morning. Once she was diagnosed with lupus, her teacher was willing to work with her, let her stay in from recess, etc. Amber needed to wear a hat to school because she was very photosensitive (that is what was causing the high fevers), but the principal would not allow it. She was going to be put in detention over it. I talked to him about putting filters on the lights, explained that her kidneys were inflamed and she couldn't be in PE because of the arthritis. Her PE teacher was willing, but principal was not. This went on and Amber kept getting sicker.
I took her to one children's rheumatologist who put her under a fluorescent light for 4 hours, then when Amber was not running a high fever nor did she have blisters, I was told to take her home and not bring her back. The doctor accused me of causing her sickness and said he would call the authorities - that kids do not get lupus! I went back to the pediatrician who ran the original tests; same thing, but worse - now her kidneys were failing. I called around and got the name of our current rheumatologist. He had not had children before in his office, but he was willing to learn. He did some homework and was ready for us when we got in his office.
It took a lot of medications and life changes, but Amber is now down to one drug and is doing much better!! She is out living what the original prognosis was. She is now a fairly active girl, though she tires easily still, she is adjusting very well to her lupus and takes good care of herself.
In taking my daughter Amber to the rheumatologist, is how I got diagnosed. I had gotten bitten by a tick and had a fever, rash, etc. I went to my regular doctor who was out on emergency, so I saw his aid. I showed him my rash, etc. and he told me when I got sicker to come back. I had to take Amber to her doctor, so I went ahead and did that because Amber needed to go. I was really afraid I had lyme disease, but more afraid that Amber would get it and I not be able to tell because of her symptoms.
I asked her doctor about it and he asked to see my rash. I was not at this point a patient of his, but became one that day. He said he had been wondering when I would ask to be seen because he thought when he first saw me that I had lupus. Now, not only did I have Lupus, I had lyme disease.
I had been diagnosed 2 years earlier (by a DIFFERENT doctor) with fibromyalgia, and told to gain weight, that I was too skinny. I weighed 112 pounds and 5 ft tall. I wanted to feel better so I did what the doctor said. 60 pounds later, he decided it wasn't a good idea because now I had more problems. I switched doctors and the other doctor felt the same way. I told all this to Amber's doctor and he had a plan for me.
I am getting better then I was; at least I can get out of bed now. I was to the point that that was so very hard. I had lost so many babies and had been told so many times, "It is like your body is attacking itself", but no one looked for lupus. Thinking back and looking back at my records growing up, I probably got hit with lupus around 9 years old, but it didn't really flare big time until I was 16, when my hair was falling out and the doctors couldn't find out why.
- Cindy, Oklahoma
Editor's note: Cindy and Amber are not the only ones in their family with lupus; all of Cindy's children have had a diagnosis of Lupus.
My story is much like many others. Looking back to my childhood I can see many symptoms now that went unnoticed. I always had aches and pains that were attributed to "growing pains", rashes after sunbathing and always feeling tired. Then 2 weeks before I got married at the age of 19, my legs gave out and I fell down a flight of stairs. I had a fever and swollen glands. My falling was attributed to my always being "clumsy" and the rest the doctor said was "mono".
That was the beginning of my search for what was wrong with me. Nine doctors and six years later, at the age of 25, after checking with a psychiatrist that it wasn't "in my mind" I finally was diagnosed. It was a relief in one way to finally have a diagnosis, but, absolutely earth-shattering in another. This was in 1981 and the library had outdated materials that had me dead in less than 5 years. The Lupus Foundation was extremely helpful in sharing with me medical information and stories of so many others with lupus. And yet it was so scary as so many people were so sick and I couldn't believe that I was one of them.
Now twenty years l look back and am grateful to still be here. There were many times I was afraid that I wouldn't make it. I have always worked full time at a very demanding job on Wall Street despite some limitations. I have been through the medication mill. I cannot even begin to list the drugs I have tried and failed. I was hospitalized 3 times with infections. I have chronic renal failure. I have pain every day and always feel exhausted. I have eye, intestinal, joint, muscle, and tendon problems. I found it amazing how many "itis's" there are and how many I can get!
It's difficult to explain sometimes to others how you're feeling. The ol' "but you look so good" response is tough to get around. One day you are okay, the next day you have a limp with no explanation. One day its carpal tunnel, the next you cannot move your neck. I have learned to try to live as normally as possible and make plans and then take the day as it comes. I try to forgive myself when I just cannot move and realize that I must rest so that I will feel better.
You do find out in life who is there to support you. I have family members and some friends that have been just great. They understand as much as they can and realize that I am doing the best that I can. I think that is all anyone can ask of a person. As time goes on it is wonderful for me to see how lupus support and awareness has grown.
- Vi
This is my story...
I had cleaned houses for a living from 1990 till 1997, working five days a week two houses a day. All was good except I was coming home from work more and more fatigued. I would take a nap every day after work. These power naps were lasting for three to four hours at a stretch. Totally wiped out, my family kept telling me it was all in my head, that I needed vitamins and "a little work never killed anyone." I felt like I had the flu twenty-four/seven. My joints hurt and my knees were stiff as a board. Then I developed hives. I started to look like the elephant man; my face would take on a whole new look. It was very painful.
I finally went to my internist, who told me I needed to see a dermatologist. The dermatologist said with all my symptoms, he thought it was lupus. He ran some routine blood tests and told me to make an appointment with a rheumatologist. The rheumatologist said I had 5 out of the 11 criteria for lupus. I had the butterfly-shaped rash across my cheeks, hives that caused lesions, achy joints, arthritis, and a high ANA count. He gave me a prescription for Zyrtec for my hives and sent me on my way. He said I needed 6 out of 11 criteria to be diagnosed.
Within two weeks I had a seizure. Now it was official; on March 16, 1997 I had 6 out of 11 criteria. The doctor said it was very difficult to diagnose. I have Systemic Lupus Erythematosus or what is known as "SLE". I have developed serositis, which is inflammation of the lining of my lungs. Now, when I get flares, my lungs are the first to be affected with asthma and asthma related symptoms.
I try to keep my sense of humor and not get down. I always think that I am one of the lucky ones. Joining a support group has taught me that I am not alone, nor am I crazy!! I am leading a normal life style (what is normal for me.) I also became a grandma Feb. 7th and things are really grand in my life. I am truly blessed.
- Jo, New York
Hi, my name is Barbara. I'm 43 years old and married with two girls and a granddaughter on the way. I have had lupus as far back as 1979, but it was not diagnosed until 6 years later. This is my story.
I am very tall and I was thin; my breasts were small and I was very insecure about this. Well, I decided to do something about it. Now I realize what a big mistake it was - too late. I got breast implants (silicone) put in and after about 6 months my whole body felt weird. I was wracked with pain; every joint in my body hurt. I no longer could go in the sun without feeling very. I was constantly tired and sleeping. My face looked like I'd spent the whole day in the sun. And forget activities that I so much enjoyed doing.
Well, I went to every doctor possible and all I got was it was "in my head", year after year. Finally, I was talking to other people who had implants and they told me to see a rheumatologist to check for immune problems that could be from the implants. Thank God I did - my ANA was positive and that was the first day of my life that I heard the words Lupus and fibromyalgia. I've read every book possible on both illnesses and at first it scared me to death. I continued to do research, did walk-a-thons, etc., for the causes.
They started me on many meds, which I researched as well, but I was not a happy camper about taking them. The meds could help or hurt me - I asked what other choice do I have? I felt overwhelmed. From that day on, my battle began; I fight every inch of the way. I continue to keep my faith, talk about it to my therapists and close friends.
People looking at me would never know I was sick a day in my life. I am on permanent disability, and get harassed for parking in handicap spaces, as I look so healthy. I just laugh and say "You'd look healthy to if they put you on prednisone and you gained 60 pounds, too." I have endured 29 surgeries. I have every illness imaginable including kidney disease and plates and screws in my back and neck.
I thank the good Lord I had my girls; that was touch and go too. Now my younger daughter is starting to have problems with her joints, etc., and this I don't take lightly. The heck with growing pains - check her now - I don't want her to go through what I went through.
If there is a young girl out there thinking of getting implants - think once, twice and again. Don't. The price is too high to pay.
I have 14 brothers and sisters and not one has the problems I have, nor are there any members on either sides of my family with these illnesses - so my conclusion is the implants, as that is when all my problems started. The one thing this illness has done is made me APPRECIATE EVERYTHING THAT LIFE HAS TO OFFER. THERE IS NOTHING I TAKE FOR GRANTED. I CAN FEEL AND HAVE COMPASSION FOR EVERY LIVING THING, AND THAT IS THE GREATEST GIFT THAT CAN BE GIVEN TO ANYONE. SO I THANK GOD FOR THIS ILLNESS AND FOR GIVING ME THE ABILITY TO EDUCATE PEOPLE ON THIS. YOU ALL TAKE CARE AND KEEP STRONG.
- Barbara
Fellow lupies! We keep fighting the good fight!
My name is Sarah and I am 35 years old. I was diagnosed in 1991 with Central Nervous System SLE.
In 1986 I went to Mayo Clinic and was diagnosed with Brown's Syndrome and, I quote the neurologist, "There is nothing seriously wrong with Sarah. However Sarah states, "Yes there is! And you haven't found it yet!"
Prior to this as a child, I had unknown fevers, rashes, exhaustion and times where I was in so much pain that I couldn't walk. I was told that I was a "hypochondriac seeking attention". So, I threw myself into academics, music and sports. I was on the traveling all-star soccer team, gymnastics team, and softball teams. My punishment for being "winded or tired" - run 2 miles. I got straight A's and was concerto clarinetist. I went to college, worked 40 hours a week, and was hospitalized my first 3 weeks with a WBC count of .6, a UTI and a "fine rash over my body".
For the next 6 years, throughout graduate school, I was hospitalized or had tests several times, but no diagnosis. My thinking was "If this is in my head, then I will find out and fight it". The reason for no formal diagnosis? I was ALWAYS ANA negative (the then gold standard for diagnosis.) By 1991, I had a 102 fever for 18 months, became slow in cognitive response and had a rash (besides the fact that I HURT all the time, no sleep and night sweats.) After diagnosis by three incredible doctors (Psychiatrist, Neurologist, Rheumatologist), I was given rounds of IV cytoxan, IGg, albumin, steroids, morphine, etc. I was unable to talk, walk, read, write or to calculate. I was in 3rd stage dementia and a delirium. I had a living will, will, advanced directive, powers of attorney and necessary documents drawn up (smart to do regardless if health status.) I was 24 at the time. I was hospitalized over 70 times in the next 8 years with life-threatening sequela (meningitis, ilieus, vasculitis, transverse myelitis, paralysis from the waist down, kidney surgery, and lung and heart difficulties.)
17,000 IV mg. of steroid later, I can walk independently. In 1994, Mayo clinic discovered that some SLE patients are always ANA negative - duh! I had anti-neuronal antibodies in the spinal fluid, and most of the other criteria. My professionals literally flew by the seats of their pants to save my life. The best thing that ever happened in this whole process was having a psychiatrist. He is the advocate for "This is not in your head". I would encourage others to enlist this kind of aid.
Now, I am planning a wedding for July 2001 and feel blessed that I can live again. I feel a tremendous loss in not working (why do all that graduate schoolwork for naught!), playing sports, the loss of self, or being able to plan, but I am working on it. I am glad looking back that I did sports, as my bone density despite steroids is normal. For now, the best thing my doctors have done is to put me on Ritalin and Provigil (besides other lupus meds). I am almost completely pain free. For me the lupus expresses itself in my not being able to slow down, my CNS overactive to the point of pain and inability to sleep. Since my doctors and pharmacists thought this might work, we gave it a try. Viola! I can sleep! Ritalin can be used for depression, but traditionally doctors only do SSRI's (selective serotonin reuptake inhibitors, i.e. Prozac, Paxil) which don't work for CNS lupus patients. I would encourage all of you to have an open relationship with your pharmacist, neurologist, psychiatrist, and rheumatologist.
One day there will be a cure! Keep fighting the good fight!
- Sarah
Due to space, the owners of this site reserve the right to edit content of stories submitted to The Lupie Bin. All effort will be made to keep said submissions true to form and content. The owners of this site also reserve the right to reject any submission for posting to this site. This site is owned and maintained by The Lupie Bin. All stories contained within these pages are the © copyright of the author and used here with the express consent of each individual. 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.
