Sunday, March 4, 2012
Happy Anniversary -- 3/4/88
So here we are, 24 years after my diagnosis, 25 years after the virus, and Modern Medical Science still doesn't have enough information to do anything for me other than what Dr. Israel suggested in 1988: fix the sleep problem and let the body heal itself.
What the heck are they waiting for????!
I realize that I was fortunate that I got a diagnosis so quickly. I had the virus in February 1987, went back to work full-time the next week, and collapsed on Thanksgiving. When I still felt punk on Monday, I went to the ER, which referred me to a doctor in their medical group. He concluded that I was an anxiety-laden woman whose husband wouldn't let me be a housewife, forced me to work, and refused to accept my explanation that this was related to the virus. Apparently, he's never heard of long-lasting viri like polio and AIDS, because he totally pooh-poohed the notion that health problems could be related to a virus 9 months earlier.
He sent me back to work with a diagnosis of "nothing", yet it was obvious to my co-workers that I had Something, with a capital S. When I went back to the doctor a couple months later with the information that my job was in jeopardy if he didn't fix me up quick, he shrugged it off, losing their jobs so they can stay home and watch soap operas was what women want, isn't it?
When I pushed him to Do Something!!!, his response was to give me a referral to Dr. Truax. Truax did only one thing, AIDS, so that name in my medical records would be a permanent stigma. Given how ill most of their patients were, the nurse did my intake interview over the phone the day before my appointment was scheduled. Based on my responses, she was pretty sure I didn't have AIDS, consulted with the doctor, and came back with the declaration that this referral was "a sick joke" and suggesting I see a cardiologist instead. Except that on a referral from Truax's office, none of them would see me; I'm not sure if they were afraid they'd catch AIDS from the patient, or if they were assuming that all AIDS patients are uninsured and they'd never get paid. Either way, that referral went nowhere.
Serendipity, I had a personal legal matter that was being handled by someone outside our firm. I went to see her about the case, and with one look she knew I was seriously ill. Her dad's a doctor – OB/GYN, but nonetheless an MD – so she put me on speakerphone and called her dad. He listened for a few minutes then conference-called us with his friend Andy, who was researching these same symptoms. A week or so later, I was in Andy's office, being told this was a classic case of Post-Viral Syndrome (a few weeks later, CDC mandated that the name be changed to Chronic Fatigue Syndrome, which Dr. Israel didn't like but played along with in order to get insurance to pay the bills).
He gave me something to help me sleep. Boy, did it ever! Even with the pills cut into the smallest fraction possible, I was sleeping 20 hours a day, out cold, not even getting up to pee. Having concluded that there was no safe dosage for me, we stopped the pills in a few days, but just that amount of uninterrupted sleep was enough to jumpstart my body so it would start to fix itself, just as Dr. Israel had predicted it would.
But 24 years later, there's still nothing they can prescribe to cure me, only treat the symptoms. And that's pretty shameful!