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Living with Ehlers-Danlos Syndrome - January 15th, 2004

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January 15th, 2004


09:49 am - I am so frustrated
I can't send mail to Wendi, the Moses-Cone mailserv won't let me. Grrrrrr.

I think I'll copy the links here, and then just call her with this. Maybe that will solve the problem. And MAYBE Dr. Koman will have sent the info in to the insurance co by now. :::grumbles:::

Yesterday I rapped my hand on something and dislocated my ring finger so badly it's still deformed even though its "in" and I can bend it... it's pretty shades of purple and green, too. But no, I don't need an unusual solution to my finger problems (according to the insurance company)... I'm just a circus freak after all...

Poor Kayti is over at the computer typing her biology homework right now. Every few minutes she stops and straightens out her fingers. Too bad the insurance co won't pay for dictation software... hmmm maybe we can make them do it? Maybe we can make them send us a maid, personal assistant, and butt-wiper (I subluxed a finger doing that the other week, go figure... if they won't pay for our unusual solution they should have to do everything else don't you think?)

:::grumbles some more:::



here are some links about EDS and joint stabilization, especially fingers:

http://www.hypermobility.org/phpBB2/viewtopic.php?t=170
is a conversation some brits were having about the SAME problem I'm having, only theirs is with the NHS.

http://www.amtamassage.org/journal/olcott2.html

http://arthritisinsight.com/medical/disease/heds.html

http://www.edstoday.org/newsletter/SS2000/braceyourself.htm

http://www.fim-health.org/medical/dystonia02.html

http://hypermobility.blogspot.com/

This one's not exactly on target, but you may find useful:
http://www.ptjournal.org/PTJournal/April2000/v80n4p386.cfm

http://ravenx.editthispage.com/stories/storyReader$116 (not directly to do with splinting but lots about the disease)

http://www.marge.com/hypermobility/ navigate to this topic:
Hypermobility Forum for people with Marfan, EDS: Bracing: Finger Braces


This will get you started I hope!
Current Mood: [mood icon] hopeful

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