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, April 7, 2011

Cleveland Update

We went to Cleveland today, and all is well. My knee (bone-osteotomy wise) is healing as it should be and looks really good. My need is tracking clinically well and is not hyper-mobile. My surgeon thinks I'm not going to have any problems with either knee down the road. Since the majority of my reconstruction was boney work it will stay permanently, where as soft tissue reconstruction combined with my EDS will overtime loosen up and often need re-worked. He doesn't think that will be the case. We're going to be realistically optimistic about my knees in hoping that this will be the end of reconstructions, knee wise that is.

The goal is to be able to start being more physically active this summer, or at least as much as the rest of my body allows me to. Once I get to the point where I'm able to do more physically it's going to be extremely important for me to maintain that to avoid other issues down the road. Hopefully, I'll be able to start biking as my main source of exercise. That's something which is safe for my knees and hips, but will also not flare up my shoulders and hopefully not my back either. Swimming is another option, but that causes problems with my shoulders, so I'll most likely have to avoid that. My shoulders aren't a huge problem yet, but they defiantly have major instability which I would like to avoid increasing for as long as possible.

So, the goal for this summer is to be able to bike on a regular basis.

1 comment:

  1. I like biking and you have a good trails near your neighborhood. Maybe swimming with a kickboard or "floaties" on your arms would keep the body parts up without having to move them. Best wishes and what a nice time of year to be outdoors. Take care.
    Love, Gary and Barb

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