Thursday, January 15, 2009

#1: Dear Helpers: Thank You. Love, the Hands.

NOTE: This is a series of 5 posts with 4 pix each, in consecutive order (not time-backwards like normal posts). I'll let the story be told with more pix than words this time around.

It's the best way I know to explain what's happening, and why small amounts of donations can make such a big difference in the life of someone who's both sick and broke. It's made the difference between posting and not, this time around.
Tenosynovitis is eating me alive. It's all over my body and expanding every day.

This little series of pix shows how it's affected just my hands. This is why I haven't been posting much. Because when this happens to your hands, and you use them to type posts, you can't.

A person can have a very serious, very painful case of tenosynovitis and have it look like there's nothing wrong. It just hurts and reduces range of motion; then the doc takes an MRI and says, --Whups! Got a problem here...

If you know someone who has a case like that, I betcha someone has already told them, --But it doesn't look bad at all...!!!--

This is what the left hand looks like now on a *regular* day (week of January 12, 2009).

Here's what the same hand looked like just a month and a half ago (November, 2008).

From week of January 12, 2009 - on a bad day this time.

The left hand pinkie finger is starting to twist inward, frozen in place. They call these parts *frozen* when the joints can no longer move. After they're frozen, only pretty drastic measures, like intricate surgery, can restore function - if all goes well, that is.

I'm not a good candidate for surgery any more, especially for such extremely extensive parts. Fingers, hands, wrists, elbows, shoulders, rib cage, knees front and back, achilles tendons, ankles, feet...lots more, but you get the idea.

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Spatula said...

Ow, ow, ow, ow. I'm so sorry this is happening to you. *hug*

k said...

Spatula, welcome. It's nice to have you come by. I truly appreciate it, especially as my blog mouth-I-mean-life has been too darn quiet for too long.

There's a lot of adjusting to do. But I seem blessed with an unusually large capacity for drawing strength from this odd new world we call the blogosphere, from my fellow bloggers and readers and commenters and lurkers and emailers and their families and oh, just all of it. It buoys me up over and over, which is a great good fortune.

*hugs* back atcha.

Desert Cat said...

Is this like rheumatoid arthritis in that it goes through a destructive process and then abates?

Praying for it to abate...

k said...

from what i've surfed up, it can be. ra is definitely an important risk factor. so is diabetes, being immunocompromised, a mycobacterial infection (probably what triggered that first teno. in the right hand a few years ago), and some others. i've got 5 or 6 high risk factors.

injury is another. repeated joint stress is too, especially for hands. musicians tend to get teno, also athletes, cash register operators, so forth.

but outside of acute injury, they think it's probably mostly autoimmune. just like ra, lupus, etc. some folks are lucky and it does remiss.

also just like ra etc., if it hasn't remissed by several months after onset it's a whole new ballgame. it probably won't.

the november pix of the left hand look okay, a little swollen, right? yet, no. it was already in full swing by then, way bad. in missouri i went to the er twice for it, got the splint, the whole bit.

it came in july in missouri. by october 24 2008, when it started looking like tendons might be already rupturing, i doubled my steroid dose. went up to 40, 80, 40,... mg of prednisone instead of 20, 40, 20,...

it visibly reduced the swelling, increased range of motion some, and the pain was better. one reason the november pix are still relatively *good.*

yet there was already permanent damage; the forefinger alone was clearly frozen. not nearly as bad as later, but frozen.

now the high dose pred has knocked my blood glucose so badly out of whack i've approached 500 several times, had a hypoglycemia attack where even pure sugar didn't raise the bg, and almost gone to the er several times too. now i'm on insulin.

this is a very different and virulent teno outbreak. it's the same thing as more *mild* cases but isn't following the usual path. so they're telling me the chance of remission is very low.

my stern, businesslike ra doc had tears in his eyes over it. not much we can do to stop the onslaught, already tried most everything earlier for the ra - chemo, whatnot. we may have to bump the pred. to 100 mg/day. and that doc HATES prednisone with a burning passion.

even if it abates, it's left a great deal of destruction behind. to free the frozen parts usually requires surgery even after it has remissed. kind of like some infections, where you can clear the germs that were present and attacking your body, but you may have to use entirely different means to clean out the toxic chemicals they left behind in your system.

don't stop praying...

Joyce Ellen Davis said...

k, m'dear, I am so sorry you are going through all this pain and infection. I wonder how you manage to stay so upbeat and optimistic. I guess it's kinda like they say in AA--about the courage to change the things you can and the wisdom to know the difference when you can't.

THinking of you....