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 12, 2007

Hokey Pokey

The gland thing is back under control. It took 4 days for it to go away, but it eventually petered out. Usually these "episodes" last only a day or two, so I wasn't pleased to see it make an extended visit this time. Since it was gone for two months, maybe it wanted to spend some quality time with me. Of course, we've got no idea what could be causing it, although it could be any number of things: salivary stones, amyloid deposits, or perhaps little gnomes up to no good... who knows.

Everything has been stable. Laying low until my next doctor's appointment in two weeks, and for the yearly rumble in late August. Edema has been acting up a little bit, but that just may be the heat, which generally causes you to retain fluid.

Some of you may be interested in the book, "The Hokey Pokey Is What It's All About", co-written by Adele Britton, an amyloidosis patient and survivor. It's about the true story about two women (Adele and Jennifer) who work together to successfully defeat their own personal challenges. Adele's outlook on life as a result of her illness transformed her outlook on life, and mentors Jennifer, who is stressed out keeping up with "the American dream".

I haven't read the book yet, but the first two chapters are available online for reading. You can learn more about this book here.

2 Comments:

At 7/13/2007 5:38 PM , Blogger Coffespaz said...

Ooooh....new book!! YAY! I sense a visit to Barnes and Noble this weekend!

Glad you are back up and about!!

 
At 7/16/2007 10:36 PM , Blogger Paula said...

Hi Tony, I was interested to read that you are having problems with salivary glands. I have amyloidosis that is localized to my lower lip and the inside of my mouth. Over the past 14 years I have received 2 incorrect diagnoses from my biopsies. Both times I was told I had aggraveted salivary glands and not to worry about the lump on my lip. Went to a different doctor in 2006 and was finally, correctly diagnosed, off of my then, 8 year old previous biopsy. Had a new biopsy done about 3 weeks ago and while the doctor was extracting the tissue he commented that it just looked like salivary glands. You guessed it...another positive biopsy! What is it about this disease that some doctors just don't seem to get? Anyway, glad to see that its getting better.

 

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