It has been quite a long time since I was diagnosed with lupus - I was 12 or 13 at the time, and not really understanding what was happening to me and my body. I won't go into detail about my personal experiences - at the moment, I plan to catalogue everything eventually on this site with some pieces focusing on the disease and how it has affected my life. The main prevailing problem with having the disease lupus is that basically, your immune system is acting improperly and it's hypersensitive. In normal folks, your immune system only turns on when antigens (foreign invaders) enter your body - such as a cold or influenza virus. Your immune system is supposed to recognize and attack anything foreign, whilst leaving all your own cells alone and allowing the immune cells to help in the fight to destroy the intruder. Think about it - if your immune system started damaging your own cells while you were being attacked by an outsider - isn't that completely counterproductive? In lupus patients, for reasons still unknown, the immune system is confused, and can attack your own cells and tissues. In less damaging cases, only the skin is affected. I'd heard that it was uncommon for someone to have both the skin and internal organs affected at the same time - but I've had the skin problems associated with the additional inflammation, as well as the more difficult to treat internal problems.

But know this, unless you've been a good friend of mine for a pretty long time period, I doubt I've told you about my condition. It's not exactly something that makes for good dinner-party conversation, and it's something I've tried to hide over the last 8 or 9 odd years. I've never wanted to draw attention to all the doctor appointments and blood tests. I always felt that I'd be misunderstood by my peers in high school, so except for a few spare friends here and there, I don't think they ever considered that I had a chronic illness. When I went to college, despite being registered for disability services at the university, I never had to use any of the services, except for getting a little bit of help in registering early for classes so I never had to take too demanding of a schedule. I never told any of my classmates that I had this special privilege - I probably would have been stabbed in the back if anyone found out I was given special registration treatment. I majored in biology, and with a large proportion of biology students want to go to medical school, most of these people had (and I guess will continue to have) a tendency to be cutthroat and less than compassionate. I knew I didn't want to be a medical doctor, I'd seen enough of doctors and suffering in my childhood. In addition, in what seems like it might be the rest of my life, I have been and I am currently on immunosuppressants, medicines that dampen the effects of my immune system on my body. When I got back from my trip, I went in for my normal blood and urine tests. I knew something was majorly wrong when my doctor decided to send me to see another kidney specialist for a second opinion. Basically, what it boiled down to was that my kidneys weren't filtering properly and I needed treatment to stop its progression. This is always a worry for lupus patients, because it's possible during one's life to have major organ damage due to lupus. I had two choices - I could either do intravenous chemotherapy (being hooked up to an IV, so the medicines can go directly to the bloodstream) or take chemotherapy orally (which is a lot more dangerous because there's more risk of getting cancer orally). I didn't want either of course, but I decided that IV chemotherapy was the lesser of the two evils. (It's not that IV chemo is totally risk-free, but it is less risky in the long-run. Most of the literature I've read on the subject reports less cancer-related malignancies and of course, I wanted to reduce my added chances for cancer.) At this early point in July 2001, things were perceived as being bad, but not totally out of control bad. When I was diagnosed, I had gone through a long series of chemotherapy so it had been a long time since my body had been exposed to the chemicals.

To tell you the truth, when I began the chemo treatments, they were going to be done every two months. I tolerated the first treatment pretty well - I remember coming back from the August out-patient treatment and watching a Duran Duran concert from the Beacon Theatre in New York that Tina had thoughtfully made a copy for me. Shortly later I began graduate school - I was truly happy at that moment, graduate school was something I had wanted to do since I was in high school. Ever since I had been diagnosed with a chronic illness, I had dreamed of eventually becoming a scientific researcher so I could help find a cure for this disease that had caused me so much trauma as a child.

What I hadn't counted on was that taking on the normal graduate student's load - classes and a teaching assistantship (TA) position - was going to cause me some major health problems. I guess over the years I developed a bad habit of not getting enough rest and sleep for my condition. But I think the problem was inevitable - most college students don't get enough sleep anyway because they go out late and skip classes. Even though I went through college largely by not being social, I skipped almost all invitations to go out because I knew I needed enough sleep every night. I guess you can say that sort of made me a social leper, because although I was going to class and keeping up with the assignments, I never really made any really good friends in college because my illness made it difficult for me to do anything outside of school.

In September, I woke up one morning to a slight horror - a lot of my hair had fallen out on my pillow. I know this is the sad reality of chemo treatment but it still bothered me greatly.

story continues here
Blown By the Wind of Reason - my main essays page and directory.
The Fields of Eden - main entry page.

this page added on 01/16/02