My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Tuesday, July 10, 2012

It's Waiting Time

After my trip to my EDS specialist a couple of weeks ago, I took another trip that following week to go to a new clinic opening with my EDS specialist and a shoulder orthopedic surgeon. I'm glad I went because it's always a plus to have two heads, with different backgrounds, thinking at the same time. They were both in the room when I was being examined and they were able to bounce idea off of each other- this is the way medicine should be done, as a team. We didn't get any new information on my shoulder, but it was worth it for my EDS specialist to be able to see my shoulder from the orthopedic perspective so he can be more helpful down the road suggesting treatment methods. It is clear that eventually I will have to have surgery on my shoulder, but I'm hoping that I can get another 2 years out of it. Like I've said before, surgery is risky for EDS patients, even more so on the shoulder, and even more so with mulit-directional instability on the shoulder (basically I'm unstable at every direction). Deciding when the right time to have surgery is up to me because I'm the one who lives with it on a daily basis, and I'm not to that point yet- hopefully I won't be to that point for another 2 years or so.

1 comment:

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