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

Thursday, February 6, 2014

Bye bye nasty drugs. Hello sitting up.

Today was a pretty good day for me, and definitely a big one at that! I am off the OxyContin (pain med). I'm done with Lovenox injections (for blood clots). I skipped Percocet (pain med) for the day. My goal is to only take it at night, and then likely after PT once I start. (Almost) No more nasty drugs!

Just in case that wasn't enough excitement for one day, I also sat up for quite some time in my wheelchair today. The first successful time I've been able to sit up since before surgery.

I'm still using the bedside commode, but hopefully I'll be able to make it to the real bathroom soon. We'll need to get a little creative because there's not support in the bathroom (hand rail, etc) and it's just about the smallest bathroom ever, so there's not much room for someone to help me get in and out. We'll save that victory for another day.

This has definitely been a slow recovery, lots of baby steps. I'm used to that with EDS, as unexpected  things come up because of complications. But, it's nice to have some measurable progress now. It gives me more motivation and definitely comes at the right time. I'm starting to get a little stir crazy as these past four weeks have been spent solely in bed and watching tv; my only time out of the house was coming home from the hospital and a post-op visit to my surgeon. I need to be able to master sitting up a little bit more before I can go out to do something (and the snow will need to melt quite a bit), but I'm heading in that direction!

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