AUDRA'S STORY

As of this writing, October 13, 2008, I will have had Systemic Lupus Erythematosus, also known as SLE or Lupus, for nearly 11 years. The 'cracked' theme is symbolic of what the disease has done to both my body and my spirit. I wake up every day fatigued and in pain, with the distinct feeling that my body is rebelling against me. My hands and limbs don't work properly. My brain doesn't work properly. No amount of rest seems to help. I've lost friends because I rarely feel well enough to go out, or even talk on the phone. I am, quite simply, broken.

Lupus is, in a nutshell, an overactive immune system. This means that my immune system has run amok and, instead of attacking viruses and bacteria, like it's supposed to, it attacks the tissues of my own body. In my case, the result is permanent liver and kidney damage, gastric ulcers, a bum thyroid, ruined skin, and recurring pancreatitis. Oh, and one of my medications made me diabetic. Not fun. Lupus is a chronic condition, meaning that it never goes away.

For the first few years of my illness, I was misdiagnosed as having Chronic Fatigue Syndrome and, later, Fibromyalgia Syndrome. Alas, health care professionals do not seem to take either CFS or FMS seriously as illnesses. My condolences go out to those who actually do suffer from either condition, because doctors tend to brush these illnesses under the rug and offer little to no help. Once my actual illness (SLE) was properly diagnosed, I had suffered severe liver and kidney damage, and was given a mild pill form of Cytoxan, a chemotherapy drug often used to treat cancer and other potentially life-threatening illnesses. It made my hair fall out, and it made me extremely sick to my stomach. To counteract the sickness, I was given antinausea drugs, which made me very foggy and drowsy. This made doing my job nearly impossible. I had to call in sick a lot, and my boss at the time was threatening to fire me. Fortunately, the rheumatologist (arthritis specialist) placed me on medical leave, just in the nick of time. Unfortunately, it took the company that I worked for a very long while to process my insurance paperwork, and I was without income for about three months. Scrambling to generate some income, I borrowed lots of books from the library, and taught myself HTML, DHTML, CSS, JavaScript (JS), a bit of CGI and PERL, and eventually Flash (I already had most of a graphic arts education that I've since finished). It still didn't help. I was evicted from my apartment, and got behind on many of my bills. To this day, my credit is worth approximately shit. I can't buy a car. I can't even rent most apartments, and I certainly can't buy a house. To be perfectly honest, I'm rather annoyed that our entire society runs on an abstract concept, and that a person's worth is determined by some arbitrary numerical score, but that's just me, and I digress.

These sorts of things seem to happen to chronically ill people a lot, and so I've been blogging and writing articles, such as this one, to help educate people about Lupus and illnesses like it, and how they affect people's lives. If you'd like to read more on the subject, please view the blogs (link opens in new window) that I've written on MySpace. Please note that some entries contain strong language. If you are offended by strong language, then you should not read my blogs. Please also keep in mind that blogs are shown in the reverse order that they are written. If you want to begin at the beginning, you'll have to scroll down.

As crappy as this disease can be, some very good things have come out of my experiences with it. I mean, I taught myself web design, something I probably wouldn't have done had I not been desperate for money at a time when I had none, and I now I do occasional freelance work, which really helps with the bills. Also, I've learned to stop and smell the proverbial roses. Before the onset of the lupus, I was one of those people who was constantly busy, always rushing about, with barely a moment to even take a breath. I think the lupus was my body's way of telling me to slow down, and it worked, because now I don't walk so much as shuffle (that's a joke, by the way). Now I take nothing for granted, especially when it comes to my loved ones. I know that I could lose it all tomorrow, and just how special my friends and family really are to me, and that's the most important thing of all. 

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