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The vortex of insanity!
154 Posts
Discussion Starter · #1 ·
We can start off sad, why not?

I don't remember what it's like not to have lupus.

I have no concept of how I behaved or what I did before the disease struck. I can't ever remember not being in pain.

Even in the years before my first flare, I'm told, I often complained of "just not feeling well...I don't know why, I just don't." My parents thought I was making it up to get out of school or social engagements. I had no other symptoms until I was nine. After a horrible allergic reaction to shellfish, the story goes, I lost all mobility in my right hand. I don't remember the progression - I remember little snippets: I fell every time I tried to get out of bed, I couldn't open doors at summer camp, I was embarrassed and felt like an old woman because it took me a long time to stand or sit, and other kids made fun of me. I started keeping to myself. I'm told that one day, my dad came downstairs to find me sitting on the kitchen floor, crying because I couldn't open the fridge. I'm also told that my brother tried to hug me and I screamed and pushed him away.

I don't remember how long it was between the first symptoms and the diagnosis, but it was all in the same summer. It took my parents a long time to explain to me that "chronic" meant I would never be truly "better." I threw a temper tantrum. I had solumedral drips at my house three days in a row then, with nurses who were not used to tiny nine-year-old veins. It took six or seven tries each time. But it made me comfortable enough to function.

I can't really tell you of my other treatments - I was on immuran and cellcept, and methotrexate. I had methotrexate injections for a time, but tehy made me throw up and were discontinued. when I was 11 or 12 I started on Cytoxan. By this time, because I was too embarrassed to tell my friends what was going on, I had almost none. I'd also had 3 kidney biopseys by age 13.

Throughout my "dark years" with lupus, I would occasionally have "attacks" that would last the night - just horrible, all-over pain, indescribable. And I would lie on the couch and my parents would stay up with me until the hospital was open and i could get emergancy solumedral.

The Cytoxan didn't do much. Nothing really did. At this point - no one told me this, I just recently found out - I was 13 and they figured I was dead. Nothing was working. My kidneys would fail before I graduated high school. Then as a last resort, when i was 14, they started me on Rituxan, still in its very, very early stages. And by some miracle, it pushed me into remission the summer between my 1st and 2nd years of high school. My kidneys were functional and I was in no pain, apart from the permenant damage to my joints. I was even off prednisone.

My kidney disease came back at the beginning of my sophomore year, and that was when the first bits of depression started, in realizing that this is how lupus works - I would feel better, I would get used to feeling better, I would relapse. I had more Rituxan to push me back, but it no longer got me to a full remission and I was put back on CellCept. The side effects of cellcept were intense for me - huge dizzy spells and nausea, and after months of my doctor not listening to me, I took myself off it. By some miracle, I got better, and I stayed better for several more months, until I was bumped with more Rituxan and put on Plaquenil. Repeat CellCept process with Plaquenil at the beginning of my first year of college.

Now, my lupus has been erratic. I'm in a flare and there are days when I just want to give up, and other days when I feel like it will all be okay eventually. The biggest change I have experienced in college (to be perfectly honest) is friends who know about my health and can support me to a certain extent, something I never experienced in the last 10 years of the disease.

Currently my depression and anxiety is at a peak, but I feel sure it will resolve itself soon. it's hard when you're about to turn 19 and you realize wow, I have been ill for a decade. I will be ill for many more decades. When will this end?
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