Walking The Thin Man

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

Wednesday, August 31, 2005

Day +54, Settled in New York

It's taken a couple of days to settle in here in New York. The move was stressful and kept me very busy. Because I am as weak as a no-name alkaline battery, it took a full day to recover. And of course, now that I'm here, my family members wanted to come and visit me. But I wanted to take a break from my naps and signing autographs to write, lest you might think I have disappeared. :)

Compared to Boston, there really isn't much to do here in Schenectady. But since I can't do anything anyway, it's all good. Actually, I kind of enjoy it here, if only for a change of scenery. The apartment on Commonwealth Avenue was spectacular. However, you can look at the same four walls for only so long. By the end, it was nothing more than a $4000/month prison cell with lovely views to the Boston skyline.

With my energy level slowly picking up and the edema leveling out I find myself in the same condition that I was in prior to the treatment. Now that I getting more energy, I find that I'm now laying down as much. Since sitting compels gravity to hold fluid, I'm discovering that my edema is starting to get worse again. I'm back to the strategies that I used when this first started -- get up from the computer and force myself to lay on my back every so often.

So, the fatigue and edema are now the only major barriers to coming back to Boston and rejoining the real world (some hair would be nice too). When exactly will they subside to manageable level is yet to be seen.

1 Comments:

At 9/01/2005 9:25 AM , Anonymous Anonymous said...

Welcome back to our fair city o weary travelers!
Rest well amongst all the well wishers and caring family...love is the best medicine...and prayer heals.
We are truly blessed to have you amongst us.
Carol
Ellis PACU

 

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