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

Friday, August 13, 2010

I've been in North Carolina this week, I go every year with my dad. He has a summer staff meeting here and I tag along and we have a pretty good time. I wasn't sure if I was going to be able to go this year, but here I am.

We're in the mountains, and although I'm not quite ready to go on a hike, walking around here even just on the streets is still a bit hilly and defiantly a workout. It feels good though. My right hip is doing really great, much better than last year when I was here. I can walk more and it just overall feels much better.

My right SI joint (lower back) has been bothering me more. It doesn't seem to be effected by the amount of activity I do, which is good and bad. Good because it means I can keep doing what I'm doing activity wise, but bad because it means I can't really control or expect what it is going to feel like. I often plan my life around how I can expect to feel after an activity. For example, if I'm doing something really rigorous then the day before and the day after I'll try to rest and give my body a beak since it's more work for my body than it would be for someone else's.

Hopefully if I can strengthen my gluteus and core I'll get some relief in my back, as well as improve my hip and make it more stable. So I'm going to, as always, continue to work on my exercises and really focus on PT and getting stronger.

1 comment:

  1. You are an inspiration to be and stay active. No sitting around feeling sorry for oneself. Keep going and reminding us all to work at life.
    Take care, Gary and Barb

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