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 15, 2010

Questions

I'm going to see my surgeon today and we have lots of questions.

Weight-Bearing Restrictions:
  1. How much can I crutch?
  2. Can I go to the beach (walking or with crutches)?
  3. Can I swim in the lake after I start water PT?
  4. Right at 4 weeks can I walk, or do I need to come back in to clinic?
The Other Hip:
  1. Will I have the exact same thing done for the other hip?
  2. More or less repair through the scope?
  3. Combined surgery or one?
  4. Have you ever used Millennium crutches (Specially designed crutches that reduce the stress on shoulders and wrists. This is a big concern with me when I have to use crutches because of EDS.) ?
  5. Will I be able to use crutches after my left hip surgery instead of the wheelchair?
  6. By doing more with my right hip will I make my left hip surgery worse
Other Questions:
  1. When should I expect to be 100%?
  2. Can I screw up my IT Band (if I fall, walk too much, abduct, etc.)
  3. Since I didn’t have bone work done, am I going to have to have this surgery re-done down the road?

I’ll give an update of how the appointment goes either later tonight, or tomorrow (my appointment isn’t until late this afternoon).

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