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

Monday, September 26, 2011

Unlucky Shoulder

Last Wednesday my left shoulder decided to go it's own way, it dislocated but luckily I was able to pop it right back into place. I had a PT appointment to pick up my orthotics on Thursday so I had my PT look at it when I was in. He was a little concerned with how it looked so we had one of my doctor's PA look at it. I got x-rays so we could be sure it had relocated properly. Everything looked fine on my x-rays, so she had me wear a sling for support.

Thursday night and Friday morning my arm got really numb/tingly so I was sent to the ER to double check everything and make sure I wasn't having permanent nerve damage. After a 5 hour expedition, we found out that everything was fine nerve wise. It was, and is clear that my shoulder is extremely unstable and seems to be shifting a little more each day.

I'm scheduled for an MRI Arthrogram this Wednesday and then I'm going to see a shoulder specialist next Tuesday. Until then I'm supposed to be in the sling all the time and avoid using my arm, which is easy because the more I use it the more discomfort I experience.

In sight of this unfortunate event, I'm very happy and feeling reassured about my college decision (deciding to go to school closer to all my medical people). I never wanted my college decision to weigh solely on EDS and the possibility of having to have surgery at some point over the next 4 years, but I knew I needed to be realistic. I don't live my life in fear, but I have to know that certain activities are harder for my body to handle. Things really worked out perfectly for me. I was able to find a school that had the best program for my major, was small and would be doable walking to class and such, and that had a close location to my medical team so I continue with treatments and not have to start over will a completely new team. Last week showed me that thinking ahead was the right thing to do, and I'm really glad that I did.