Wednesday, March 4, 2015

Happy Anniversary to me

27 years ago today, I got a diagnosis from an Ivy League doctor who assured me that "it has a name" and that he and other great minds were researching this disease.  I expected a treatment to be available in 5 years and a cure in 10.

So, here we are nearly 3 decades later, and finally there's something that looks like forward progress, including the information that the early years of the disease look very different from the later years. Any hope for an "easy cure" is gone – I've been sick a lot longer than the 5-year cutoff that researchers have been finding.  At this point, all I can hope for is that a new name finally gives it enough credibility that I can qualify for some sort of assistance, primarily volunteer drivers and cleaners who are trained to work with the disabled and not make things worse by creating heavy boxes "for you to put away!" that are placed in front of the doors and drawers I would have to open in order to put those things away.
Had Dr. Israel told me that I'd be waiting this long and still no treatment available other than palliative pain pills, I would not have been so excited when I called my uncle's birthday party that afternoon to announce that I finally had a diagnosis.  I know now that it's just another of those innumerable frustrating times where something desirable is dangled in front of me and then yanked away – a sadistic game to play.  It wasn't really good news that it had a name ... just the start of a long painful unproductive experience.

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