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, July 4, 2010

Happy Fourth of July!

This morning, I got out of bed all by myself. It’s a little tricky because I can’t use my abductors, so I have to scoot into a sitting position on the side of my bed to avoid pulling my leg outward. It probably sounds a lot more complicated than it actually is. Once you understand what abductors are, needless to say with going through multiple years of PT and counting I know when I’m using my abductors, it’s not too tricky.

Everyday I feel a little better. I even feel like I could just get up and start walking, but I’m still non-weight bearing for 3 more weeks. I’m glad that I feel better, but I hate feeling perfectly fine and not being able to move.

I’m getting a little worried about the rest of my body, my other leg in particular. The thing that is complicated with EDS is that when you have a surgery and aren’t going be able to use a leg, your other leg takes on added stress, joints specifically. For EDS patients this becomes more of a problem than for the average bear because EDS joints aren’t in the best shape in the first place and really relay on the rest of the body to support them, a lot of compensation goes on. It’s not just the leg you have to think about, the shoulders, wrists, elbows, and any other joints all go along with that. My newly operated knee (left side, which is where I have to now carry all my weight) is starting to feel a little over worked. It’s only been six months post-op, so it still isn’t even completely back to normal it’s self (it really takes a year post-op to fully return to normal and get all the benefits of surgery). So for the sake of the rest of my body, I’m hoping that I’ll be able to start walking sooner.

Not being able to do anything is hard and it’s hard to think that in 5 months I have to do this all over again on the other side. But, hopefully if this surgery makes my hip more stable and stop it from popping out because then I should be able to use crutches by that time. That would make things so much easier and I could be more mobile. There are some really great crutches that take some of the stress off of your shoulders that I’ve researched. I will defiantly get those if I’m going to be able to use crutches for the next surgery.

I hope everyone has a great 4th. I think we’re going to have a little neighbor get together tonight which will be fun. Other than that, we’re just hanging out and enjoying the lovely weather.

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