lazarusoutcast ([info]lazarusoutcast) wrote,
@ 2006-01-16 10:36:00
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All In The Family
My sister is a sufferer of Ehler-Danlos Syndrome, Types I & II. She has arthritic pain, velvety skin and she bruises easily. She gets nose bleeds all the time, which causes fainting spells, and she can hardly use her hands anymore from stiffness. Her party tricks used to be the overextension of her wrists and ankles as she could turn her feet right round to the back.

It is hereditary, and the doc thinks there is a good chance I too am a sufferer- with different symptoms. I have tendonitis in my thumbs (I thought it was from years playing the string bass), aching joints (my impression was aging- and it is worse with cold weather), bad circulation (my hands lose sensation constantly- I thought it was a symptom of living in a freezing, drafty house as a child), consistently cold extremities (the few people who have slept in my bed with me can attest to jumping out of their skin the minute their foot accidentally touched mine)- and of course my ankles which twist and strain regularly, and occasionally sprain. The test to make certain is $1,000 and I have a $1,000 deductible. There really isn't any treatment other than having a surgery where they inject collagen into your joints- which will most likely have no long-term effect whatsoever. I've been advised to wear ankle braces for the rest of my life.

Funny, but I always got along fine not knowing that what I experience had a name. And since there isn't anything that can be done about it, I choose not to fret. My sister, however, has cancelled all plans till the day she dies. Seriously.



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[info]wordweaverlynn
2006-01-16 06:14 pm UTC (link)
Maybe she'll get bored obsessing over it. And maybe she won't.

One of my nieces has POTS--Positional Orthostatic Tachycardia Syndrome--which apparently runs in my family. Cartainly I had all the symptoms as a teenager, and so did several of my sisters, cousins, etc. And although my niece has it worse than the rest of us, there is something genuinely unwholesome about the way her mother hovers over her, glorying in her daughter's symptoms. My sister has found an interest in life, and my niece is suffering worse from her mother's morbid pleasure than from the disease.

Good luck, and have some nice warm socks to wear to bed.

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[info]lazarusoutcast
2006-01-16 07:04 pm UTC (link)
Most likely she won't. My mother and sister are both professional martyrs- they are not happy unless they are miserable and are free to discuss it endlessly.

This conversation made me think, however, that just about everything that we do and take for granted could be given a clinical description by some specialist. For instance, the fact that I wake up every single morning and then stay awake for the next sixteen hours before sleeping again might be called 'Non-Syncope Octo-Deficient Cognizance Disorder.'

I had a surgery several years ago on my mesenteric artery near the aorta when- somehow, and I still wonder how- my bladder became entwined in the artery. Our bodies are still such a mystery, and I wonder what is going on in that 90% of my brain that I'm not using. Perhaps that unknown portion of my brain is conspiring telepathically with dolphins to destroy the ozone layer- no, that would purely be an human act of stupidity. No dolphins would be involved in such a scheme.

You have nice warm socks to wear in YOUR bed or MINE? Was wondering if that was conscious or unconscious flirtation there...

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[info]lazarusoutcast
2006-01-16 07:48 pm UTC (link)
Reread that and realized that you advised ME to get some socks. Egg on face...

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