My mom was always bringing me to the doctor in an attempt to discover what was wrong with me. There always seemed to be something ailing me. My doctor would run tests without any leads as to what was wrong with me. Finally, when I was in 5th grade, my doctor told my mom that I had mono. By this time, more of my joints would hurt me and my heart had begun acting up.
Despite finding this, it still seemed as though my doctor did not believe me when I said I did not feel well. I went to see a cardiologist about the problems I had been having with my heart. After examining me the doctor told my mom (using some fancy terms that he didn't think an 11 year old would understand) that he thought I was making all this up and there wasn't really anything wrong with me. It was so hard dealing with the doctors not believing how sick I was and how bad I felt.
After many more years of tests (including an AIDS test that I requested to put my mind at ease) and several more doctors that were not helping me, I finally had an answer for all my ailments. One day (I was 17 at the time), I went to see my doctor on a day when I was having several of my symptoms. My hands were in so much pain and the joints were so stiff that my hands were curled up into little balls against my chest. I could hardly walk because my knees were as bad as my hands. I had a red rash on my face that was on both of my cheeks and a little on the bridge of my nose. I was so tired and just did not feel well. After looking at me, my doctor thought of sure that I had juveinile rheumatoid arthritis. She ran a full panel of rheumatoid bloodwork. She also scheduled an appointment for me with a Rheumatologist. The day I went to see the rheumatologist he examined me and told me that I appeared to be fine, but he had not received my bloodwork yet. Just as we were finishing he was handed my results. The ANA (anti-neuclear anti-body) test that my doctor had run to test for Lupus came back positive. The test results can range from a 0 to 640. My ANA readings were 640. The diagnosis - I have Lupus.
My first reaction was one of releif - they finally knew what was wrong with me! I wasn't crazy! Then my joy turned into a sudden panic. It had been explained to me what having Lupus meant. I knew full well that this was not really a good thing. The panic became depression and the depression became fear and the fear became curiosity and the curiosity became optimism. I went through all these emotions in the brief period of time I was in the doctor's office.
The next task became deciding what should be done to treat my Lupus. There is no cure for Lupus, only the symptoms can be treated. I returned to the doctor a few weeks later to decide on a course of treatment. We decided on Plaquinil - an anti-milarial drug that is common in the treatment of Lupus. One of the major side-effects of this medication, however, is a risk of deposits being formed on the retna that could lead to blindness.
For the next several years I noticed that the problems I had been having with my heart had deminished, the joint pain had decreased (and after the addition of Vioxx had completely disappeared), I had more energy and I wasn't getting sick as often (if I did get sick, however, it was still always more severe and lasted longer than if anyone else got sick).
I started to slip into a depression about my disease, however. I realized that I might have to stay on medications my entire life just to feel half-way normal. I didn't want that. I didn't want to be sick. I just wanted to be normal. I wanted to stay up late with my friends in college and not have to get extra rest to be able to function. I wanted to be able to get out of bed in the morning without having to first streach my joints. And, looking further down the road in my life, I wanted to know that if I wanted to have children I could have them and not run the risk of my Lupus doing anything damaging to that. It was all very hard to deal with.
The end of my senior year of college I made a conscious decision to stop taking all my Lupus medications and give "normal life" a try. I got out of an unhealty relationship I was in and threw myself into my job and my classes.
I am happy to say it has been seven years since I last took any of my Lupus medications and, although my ANA levels are still at 640, I am feeling happy and healthy. I feel a little more normal. I still often think about the things that could happen to me because of my Lupus and of course I worry about them, but I try not to think about that too often. I worry that if my health ever does get worse I might become a burden to my now finace. I often worry about someone needing to take care of me if I should become too sick to do it myself. I don't ever want to be a burden to anyone. I know that I am extremely lucky to have met Anthony. He always take good care of me when I am sick - even if I don't tell him that I am not feeling well...he just knows.
I think of how extremely lucky I am that I feel as good as I do. I try to be as normal as possible. I don't tell people about the joint pain when I feel it or if I'm having a flare. I just want to be normal. I don't want to be sick. And the biggest thing for me, is that I don't want anyone to have to go through what I went through.
To learn more about Lupus you can visit my Lupus page or go to www.lupus.org