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Comments 38

cacophonesque February 1 2010, 00:00:20 UTC
I'm glad that you've had loving and supportive people around you who are willing to put forward the extra bits to make things workable for everyone. And that you're now in a better place emotionally.

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walkertxkitty February 2 2010, 20:51:38 UTC
I have good days and bad ones. On the bad ones, I just allow myself to feel bad but don't try to do anything about it. It passes. On the good days I use that positive mindset to get things done while I still can.

It's good to know they won't abandon me; I know plenty of others who would. In fact, that's the reason I don't have many local friends left any more.

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javarod February 1 2010, 00:49:48 UTC
Hugs, "I saw this in your regular post, best i can say is good luck, though it sounds like you have the support you need. Hmmm, perhaps the boys would get a kick out of making one of these for you, just need to figure out a way to get it in and out of the truck:
... )

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walkertxkitty February 2 2010, 20:50:13 UTC
I really, really wish they could. However, we're plotting for the next best thing: a 4WD ATV. They have hand controls so I won't need my legs and that will allow me to get all over the property.

Hopefully the specialist will know more. I can't believe there's no other alternative for treatment.

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walkertxkitty February 2 2010, 20:48:52 UTC
I know I'm lucky. It's just that sometimes the luck doesn't always cut through the suck. I seriously expected to be told that there was nothing on the MRI and I just needed to exercise more and eat less. The only good part about it is now I know where the EDS will go; it will attack connective and joint tissues and since the disease only takes one form or the other it will leave my heart and lungs alone. I'm likely to live longer then.

Dee, Dorie, and Mr. Shapeshifter are rare and fine people. Plenty of others would have left me long ago.

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alycewilson February 1 2010, 05:31:24 UTC
I'm sorry to hear about the diagnosis but glad to hear that your partners are so supportive.

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walkertxkitty February 2 2010, 20:47:08 UTC
The diagnosis sucks. The one time I wanted to be told "you're just fat, exercise and you'll walk again" and then that's not even the case!

We'll see what the spine specialist says. Surgery might be a possibility but we'd need a team of doctors which includes someone familiar with Ehlers-Danlos Syndrome to avoid complications. I'm starting to think House should be overseeing my case :D

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alycewilson February 2 2010, 20:57:03 UTC
Maybe! Is there anyone like him in real life? An expert in special cases? Could be worth checking out.

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walkertxkitty February 2 2010, 21:04:50 UTC
There is, as far as I know, one expert in EDS and he's a children's specialist in Illinois. The disease has a reputation of being a children's disease, which it is not, because the worst cases are evident early in childhood. As Shands is a teaching hospital, though, I expect we'll find sufficient doctors to consult and keep me alive.

The first one to suggest gastric bypass or other such unnecessary surgeries, however, gets my shoe to his head.

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joeymichaels February 1 2010, 07:31:40 UTC
You and Mama Chesire were an excellent pair here. As always, I love how you make every event in your life seem like an adventure. Great thematic connection (the suicide) and another excellent entry.

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walkertxkitty February 2 2010, 20:45:51 UTC
You know, we didn't plan it that way. I hadn't even written mine and didn't know where it was going to go (it got posted at the last minute). The only thing we'd agreed upon was a loose linkage of themes. I'm glad they fit so well together. Thank you for reading.

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