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, July 22, 2010

Physical Therapy

I went to PT yesterday, and things went very well. I'm walking pretty much like normal, unaided. My PT was surprised at how well I was walking and even that I was able to at all. He was defiantly expecting me to be worse off than I am.

I did some light land PT exercises, some old ones that have always been apart of my exercises. Right now I'm going to be working on getting my core muscles back (abdominal), especially my lower abdominal (TVA), and quad.

My left quad (non-operative side) is showing major muscle atrophy. It most likely is still suffering from previous quad troubles I had after a femoral nerve block (about 3 1/2 years ago). I have mentioned before that I have trouble when I'm down and out for long periods of time, this is exactly why. The more my quad atrophies, the more danger my knee is in (operated on in December) because it has less support. I would really really like to prevent a dislocation in that knee so I'm going to be working very hard to get my quad some strength. My right quad (operative side) is actually stronger than the left. Good news for my right side, not so good new for the left.

Pool therapy went very well. I did some walking in the pool. I can do forward walking with out popping with the exception of turning around because I have to stand on one leg. Backward walking is a little out of my game right now, I popped out with every step when I tried that. I was able to stand on one leg while holding on to the edge of the pool. My right side (operative side) was actually more stable than the left, VERY good news! I'm not sure if that's just from the scar tissue I have now or if the z-plasty is actually working. It's kind of weird for me to say that, my surgery is looking like it's doing it's job.

For me, with EDS, scar tissue is going to be my friend. With most patients you would try to manually work out the scar tissue because when it forms it makes the area very tight. But, for EDSers that's a huge plus, tightness is what we need. It will most likely go away with movement, but if it sticks around it wouldn't be a bad thing.

Right now, I'm allowed to walk unless I have pain. Pain is my guide. I really don't have much, if any pain. My IT band isn't painful at all (the most recent surgery). If I have pain it's coming from the scope, my labrum and my actual hip joint. My hip joint is still popping, which is something that may go away in a few months because of the scope, but right now I just have to wait and see. When my hip pops it's pretty painful, but that doesn't happen all the time.

So far, so good. I can't complain with the progress I'm having and I'm extremely happy that I'm able to walk unaided.


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