I slept through three Saturdays in a row...
One of them was understandable, as I had been drinking the night before, but it really sucks when your weekend gets cut in half because the body says "Must... Sleep... NOW!"
My left hip has been bothering me a lot lately. More than usual. So I went to the doctor to see if I could have an x-ray to check for deterioration/damage due to the ridiculous number of dislocations/subluxations I've had, and it turns out my hip is fine. No damage. Which is good news for my hip, but it doesn't explain the pain... So the doctor wants me to go see my geneticist, and have him refer me to a rheumatologist, and maybe send me for an MRI. Not fun. I'm tired of all the tests coming back normal. I was hoping for something like "you have a hairline fracture" or "look at the little bits of bone you've chipped off your hip" because something could be DONE to fix me then.
I also saw another neurologist about my twitching issues, and apparently the doctor that referred me to her didn't send any of the appropriate paperwork, and I didn't have it with me, because I thought they would have it there. Apparently the last neurologist wanted to send me for some heart related tests, and never did, so this lady is going to send me for some. Maybe. If she remembers. (Do I sound bitter or frustrated?)
Yesterday was weird. I had practically zero proprioception, and I was dizzy like you wouldn't believe (who am I kidding, the people reading this are the ONLY ones who would believe), and I was wobbling around as though I'd had a lot to drink. I was also twitching way more than is usual lately, so it might be related to my blood pressure... I had trouble locating my pulse. When I did find it, it was very slow, and very weak. I tried eating, and drinking lots of water to help with blood pressure. The only thing that seemed to help was walking home from work. But that just exhausted me, so once I got home, I curled up into a nice little ball and threw in a DVD of Dead Like Me.
Remembering Michael Lennick
1 week ago
2 comments:
Oh, and I had a customer at work growl at me... Literally. He asked me something, and I told him no, politely, and with the reasons behind it, and he just looked at me, said "Grrrrrr!" and stomped out. It was kinda cute. So was he ;)
My husband has EDS and a lot of your issues are very similar. It took nearly a year to diagnose. We've done all our own research and after firing one doctor for literally threatening to commit him (she couldn't get past his anxiety), we finally found one who at least isn't too arrogant to listen to our opinions. Now my husband is dealing with the twitching and shaking you mention. He has his first neurology appointment in 3 weeks. I don't know what I'm trying to say here, besides thank you for sharing your experiences. It makes the rest of us feel a little less alone.
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