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Dept. of My Body Tells Me Things

By the Non-Pricking of My Thumbs And Other Digits

One of the things about scleroderma is that it comes in a neatly wrapped package with Raynaud's Syndrome.The latter is a syndrome kicked in by cold or stress. If you check the second link and look at the picture, that's generally what my hands can look like up to several times a day. Sometimes it's worse.  When it comes to the precipitating factors ... well, I live in Chicago, which spends a great deal of time being noticeably cold. Y'all know how much stress I deal with. Connecting the dots should be easy.

Raynaud's is a pain in several ways. Firstly, when my fingers are numb, even a little numb, I can't type worth a tinker's damn. Since I have to type for a living (I even take my notes by typing these days because I also have arthritis, and writing out notes the way I used to is very difficult), feeling like I have 10 large, nerveless sausages instead of responsive digits is a definite negative. Secondly, when the vasoconstriction gets bad, it goes beyond numb, goes beyond painfully cold, straight to painful. And the more I'm in pain, the more I stress about it and the more I stress about it - lather, rinse, repeat. It only ends when I calm down or get warm, and getting warm often means getting into a shower (that's really necessary if my feet and toes start getting cold; I really hate it when the Raynaud's hits my feet), or at the very least holding my hands under hot running water for a long time.

On the other hand, Raynaud's has become an excellent emotional DEW line for me. I know when my stress levels are getting bad enough that  I need to sit down and handle them when my fingers start turning purple and white.

I guess everything comes with a silver lining, although tonight I could have done without the physical reminder that I always stress out before negotiation sessions. Heh.



This entry was originally posted at http://kaffyr.dreamwidth.org/266489.html?mode=reply, where there are currently comment count unavailable comments. You can comment there or here; I watch both.

Comments

( 16 comments — Leave a comment )
a_phoenixdragon
Aug. 8th, 2013 06:34 am (UTC)
Oh honey..what a terrible affliction - especially for a writer/artist! I wish I could make it better for you. I mean, silver lining is great - stress indicator, yus! - but could it find a way to indicate without creating MORE stress?!

Arrrghhh...

Thinking of you, sweetie...

*HUGS*
kaffyr
Aug. 8th, 2013 08:10 pm (UTC)
Thanks, my dear.

*hugs*
azalaisdep
Aug. 8th, 2013 10:00 am (UTC)
Having a medical condition that makes it hard to do your job *and* a lot of the stuff you do for fun is Just. Not. Fair. Especially when it creates its own special vicious cycles like that. :-(

(I imagine you have thought of/tried these already, but I have a colleague at work who can't type for prolonged periods (due in her case to back problems) and she uses speech recognition software? She still has to tidy her stuff up, but it makes for a lot less use of her hands than continuous typing does. She and I, of course, are fortunate enough to have an employer who will pay for these things under the UK's Disability Discrimination Act, which requires the Uni to make "reasonable adjustments" for someone with a permanent condition which affects their work.)
kaffyr
Aug. 8th, 2013 07:36 pm (UTC)
(I imagine you have thought of/tried these already, but I have a colleague at work who can't type for prolonged periods (due in her case to back problems) and she uses speech recognition software?

Yes, I actually have Dragon on my computer, but I have a weird problem. I type and write and think almost simultaneously, and having to slow my thoughts and my story organization down to Dragon's (admittedly impressive) speed throws my creative process (such as that is in terms of work) completely out of whack.

azalaisdep
Aug. 8th, 2013 09:34 pm (UTC)
That's not weird at all - when I imagine trying to "write" by speaking my brain tends to crash, as I don't know what I think till I see what I say... I can imagine it being very difficult.
kaffyr
Aug. 9th, 2013 02:27 am (UTC)
I'm so glad someone else understands what I mean when I say that!
eve11
Aug. 8th, 2013 11:26 am (UTC)
D's cousin has Raynaud's Syndrome too. She can't spend too much time in the cold. I hope you feel better soon!
kaffyr
Aug. 8th, 2013 08:08 pm (UTC)
Thanks - And when it comes to D's cousin, oh man, I feel for her. The difficulty of staying out of the cold is really difficult in this neck of the woods. And actually, even picking up something cold from the refrigerator can trigger the vasoconstriction, so we're not safe even in the hottest days of summer.

ljgeoff
Aug. 8th, 2013 12:37 pm (UTC)
I have an ex who has Raynaud's, so I know what you're going through. It sucks.

I second the notion of the voice recognition software. (Every time I think of it, I hear Scotty talking into the mouse, "Computer?")

We're going to be buying Dragon for my son Luke (his dyslexia is like, whoa) and if you'd like to try it out, I can pop it in the mail.
azalaisdep
Aug. 8th, 2013 04:08 pm (UTC)
Dragon is what my colleague uses, too. I think it took a bit of persevering with to get just how she wanted, but it was genuinely intelligent about learning to recognise her voice - it started off a bit wonky, but got more accurate very quickly.
cygnia
Aug. 8th, 2013 02:15 pm (UTC)
Raynaud's...ugh. I have that too. :(
kaffyr
Aug. 8th, 2013 08:14 pm (UTC)
Oh, man - hello, sister!
clocketpatch
Aug. 9th, 2013 02:13 am (UTC)
Ugh. I hate the feeling of numb fingers after spending too much time out in the cold. Luckily mine warm up and become functional fairly quickly after warmth is applied. I can't even imagine how awful it would be for that to be happening due to stress. *hugs upon hugs*
kaffyr
Aug. 9th, 2013 02:29 am (UTC)
Thanks for the hugs - they're always appreciated!

There are many days when I don't even think about the Raynaud's happening, simply because it's become part of my day. That's fairly easy when the attacks are moderate or below. But on days when they're really bad - like when I wrote this post for instance, they intrude something fierce.
apostle_of_eris
Aug. 9th, 2013 10:52 pm (UTC)
Have you tried fingerless gloves/mittens? If you looked, there are probably battery-warmed models, even.
With, of course, the stipulation that I'm often unsure whether what is obvious to me is to other people . . .
kaffyr
Aug. 10th, 2013 10:40 pm (UTC)
No, the idea of fingerless gloves is a valid idea. I have a number of sets. Sometimes they help, but in a majority of cases, my episodes start at the tips of the fingers. For instance, if it's cold-triggered, it will be because the tips of my fingers have touched something cold. If it's stress-induced, the tips of my fingers are the first things to go numb.

As long as I have hot water around, I can get some eventual relief.
( 16 comments — Leave a comment )

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