My notion of myself is changing slowly. It changes in dreams. Last night I dreamed I was in a train station. It was busy, bustling with people. I was trying to catch a train to Chicago, but the trains were ill-labeled. It was very confusing and I would run onto a train only to find it was the wrong one at the last minute and dash off again. The passengers seemed not to notice. Frustrated, I tried again to figure out which train was bound for Chicago. I needed to find the westbound train, but every time I thought I'd found it, it turned out to be headed in another direction. When I woke up I thought even if I get back to Chicago, it may not be the Chicago I remember. And I won't be the person I was before, in any facet.
It's very difficult at almost thirty years old to realize you will have to live your life in a completely different way. Aspire towards different goals. And most challenging of all, try to adapt to a body that doesn't resemble the one I remember.
Really, it's overwhelming.
I fired my rheumatologist today and made an appointment with a new one. No clue if she'll be better than the previous one, but I'm hoping and praying that she is. I'm also off to the hematologist to see about a low iron saturation.
This is going to cost yet more money (that I probably don't have) but it's crucial to have a treating doctor...if I'm ever going to be able to work again. This is the downside of having a rare and incurable disease...actually finding a doctor who wants anything to do with you.
3 comments:
Wish I had a suggestion on who to see, but I don't know any EDSers out in the middle of the country - all of my acquaintances are coastal.
You might have better luck if you can find yourself a physiatrist. I actually don't have a rheumatologist, since technically EDS isn't a rheumatological disease (that is, it doesn't involve the immune system). Instead, I see a collection of doctors - a physiatrist for all of the joint and muscle problems, a gastrointestinalist for my GI...fun, a urologist (who was basically useless), and a migraine specialist (who I list because some of my migraines are cervicogenic, and kind of tangentially related to my EDS).
As far as a physiatrist, if you have a selection of them, I recommend one who does NOT specialize in spinal cord injuries. Very different boat, and the SCI-expert physiatrist that I saw was a disaster.
Don't know if it's something you want to try, or if it'll help you, but I thought it was worth mentioning.
~Kali
Kali, thank you. A quick survey of physiatrist in my area didn't turn up any who didn't specialize in SCI, but I'll do a more thorough search later on.
I appreciate the suggestion. This city is lousy with doctors, surely there must be a doctor who isn't lousy somewhere.
I actually wouldn't be opposed to trekking to the east coast (a six hour drive) if I thought I could get a list of recommendations and then find a local doctor willing to follow them.
Still, it might be beneficial to hear of doctors on the east coast. Maybe you can see on while you're here in Philly.
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