Walking The Thin Man

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

Thursday, July 21, 2005

Day + 13, The Day Off

For the first time since the start of my treatment, they've given me a day off from coming to the hospital. I've been anxious about today as the hospital visits were about 6 hours long, and I wasn't sure... what I'd do with myself with all this free time?

Of course, I couldn't sleep in. I've been getting spotty sleep and waking up at about 5:30 am each morning. Trust me, I was up sipping on coffee before 7 this morning.

Couple of other firsts: Last night, I didn't take any Ativan to put me to sleep for the first time snce the start of my treatment. Not one. Oh, to not have a drugged feeling was divine. Also, this morning I took my first walk outside on Commonwealth, walked about 3 blocks. Energy level was good, even with the extra fluids.

I'm still having continued difficultywith the edema. I'm close to nearing 20 extra pounds of fluid, which tires me out if I walk a lot. I really hope they can so something for me tomorrow.

1 Comments:

At 7/21/2005 4:47 PM , Anonymous Anonymous said...

Hey there Tony,
Great to hear that you are out and about !!

Keep it up...
--Eric

 

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