Friday, April 9, 2010

A Season Between Winter and Spring

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.


Anonymous said...

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, 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.


Yvette said...

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.

kholla07 said...

Still, it might be beneficial to hear of doctors on the east coast. Maybe you can see on while you're here in Philly.