Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Thursday, January 26, 2006

Calm

One of the things that has surprised me is how calm and unanxious the wait has been. I am supposed to contact a doctor over at BUSM tomorrow afternoon to get results from my blood tests and bone marrow biopsy. This is truly a major milestone for me with this disease, as it will dictate what my plans are for the next 6-12 months.

To be honest, I am hoping for the best, but preparing for the worst. As I mentioned before, the odds of me getting a remission on the first try would essentially be a coin flip. It's too early to delve into how I would feel knowing that I would have to do this all over again from scratch. I'm sure that I'll have plenty of time to reflect over the weekend.

In other news - I'm having some problems with the edema again, but this time it is result of a lifestyle change. You see, I've been working full-time again for a couple of weeks now, and most of the time it requires me to sit in front of the computer. In addition, I am wearing support stockings (think of them as knee-high tights) to prevent fluid from getting into my lower legs. The combination of sitting and the support stockings causes the fluid to get stuck in my upper legs, which is now starting to get uncomfortable. I don't know how to deal with this issue, but I am trying a number of different things in hopes that will help. I tell my kidneys they can start healing any day now!

I've had enough suffering in the last 9 months to last a lifetime. Please, please, give me some good news.

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