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

Sunday, December 8, 2013

Almost... Ready to Roll

I officially have my surgery date- January 10th.

The crutches are on their way. Physical therapy is set. Blood is getting drawn.

It's always comforting to feel like things are falling into place. It can be a little nerve racking to wonder if you're doing the right thing, luckily my hip has been telling me that this is exactly what I need to do with a little misplacement the other day. I think that most people would see that as a complete negative sign, for me, it's oddly comforting. It tells me that there is no question that my hip needs a little, or a big, tune up and now is the time. I'm ready for this.

Starting this week I'll be pumping myself full of Gatorade and Cream of Wheat in order to prepare to give blood this weekend. Gatorade works miracles for me pre and post-op, we've found out first hand. The theory is that since my BP is so dependent on my blood volume, adding rich fluids (like Gatorade) helps to keep that regulated and hopefully prevent passing out post-op (or after giving blood). I'll be doing two auto blood donations to have on hand post-op in the event that I need a transfusion.

My crutches that are on their way are hopefully going to be the perfect solution for my EDS body, and specifically unstable shoulders. The goal is to be able to use them, with PT before I go into surgery so that we can have some ground work done and hopefully have a slightly smoother recovery post-op.

Until January 10th, I'll be making the most of walking freely on my own two feet!




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