Self-Advocacy

On August 18, 2008 I went up to the office to do a load of xeroxing, throwing my bag in the back seat of the car. When I got to school, however, something was wrong. Though early in the am, it was like I was drunk, with walking wobbly and difficult. Being a compulsive, I idiotically worked for half an hour, holding on to the copying machine to steady myself. Then I drove home (second stupid act), called the health help line, where they told me to get to the ER. And don't drive! Once there, they figured I had had a stroke and put me on coumadin, a powerful blood thinner. Three days later, in the evening, a nurse wrote on my board to call them if there was any sign of paralysis. I held up my left hand as it stiffened, saying something like "Son of a bitch, how about that." Turned out I had transverse myelitis, a rare neurological disease. I didn't get home from institutions (hospital, rehab center) for two more months, a hemiplegic paralyzed on the left side. With TM, I had just joined an exclusive -- not desirable -- club. There are only 1,400 cases a year in the entire U.S., 300 in the UK. As I put it, "me and 1,399 other poor bastards got TM that year." Getting a rare disease -- a cavalcade are sadly available -- can be an incredibly isolating experience. Even the doctors don't know much, and finding pathfinders and guides, folks who can share their experiences, seems like an impossible task. While there are plenty of caregivers and social workers, smart well-meaning people...
Source: Healthy Living - The Huffington Post - Category: Consumer Health News Source Type: news