Monday, March 23, 2009

All Alone

So, I've been meaning to blog on this subject for a while. I've found that a lot of people with any kind of rare disease, disorder, or illness, have problems relating to people, because they don't understand all the issues associated with it. I have a different problem. My best friend has EDS, the same type I have, and she has known her whole life. I didn't find out until I was into my teens. So, my friend has it a lot less severely than I do, and she can't understand the constant pain I'm in, or the frequent injuries any more than "normal" people do. She has only ever injured herself in an EDS-related way twice. Once when she dislocated her knee dancing, and once when a nurse dislocated her shoulder trying to pull her into a sitting position when she was still loopy from the drugs they gave her for her c-section. Her knee was put back into place, and she had it properly immobilized, and was in a wheelchair for a few weeks, then she got better, and now she doesn't seem to have any problems with it. She says her shoulder still bothers her a little, but it's only been a few months.

I, on the other hand, sublux my shoulder so often I barely even notice anymore, and dislocate it frequently. I can pop it back into place 'easily' and I've never been hospitalized with a dislocation. By the time I make to the hospital, or doctor there is nothing "wrong" with my joints, and they can't understand how it could have been dislocated, and popped into place again in such a short amount of time, and with no medical help. With my left knee, I dislocated it severely, and when I tried to stand up, the weight of my leg pulled it back into place, and I couldn't get a doctor to listen when I said it was dislocated... They simply didn't believe me. They told me I probably just stretched the tendons or ligaments, and that I should wear a brace when I walk or stand and it should be fine in a couple of weeks. This happened almost 3 years ago, and I still walk with a limp.

Okay... so back on topic... Even though I do have a friend whom I've known since I was a year old with the exact same genetic disorder I have, I still feel all alone, like I have nobody to talk to that could possibly understand me. Oh, and my husband has a disorder similar to mine, but all of his joint issues have specific reasons behind them. His left knee is screwed up because he was hit there with a baseball bat years ago. His hip is screwed up because of a work related injury. So again, it's hard for me to talk to him, and to have him understand that even though you can't SEE anything wrong with me, I am in pain all the time. Since I dislocated my right knee (not as bad as my left) I occasionally don't walk with a limp, and people close to me assume it's because I'm not in pain, but the reality is that I am in more pain than usual, it's just pretty even between the two knees, so I walk without a visible limp.


Bendy_Clutz said...

In a way i'm faciniated by the multiple manifestations EDS can have in people..

same condition.. same genetic flaw.. but totally different results.

I'm sorry you feel so alone with your joint issues, it really sucks to not be able to relate to people..
Who did you get it from in ur family? do they not have obvious joint problems either?

BubbleGirl said...

On my mom's side of the family the women have joint laxity in their hips, and on my dad's side there is an abundance of knee and hand problems, but I was the first and only person in my family to be diagnosed with EDS.

Once upon a ime my mom was diagnosed with something like POTS, and she has inner ear issues, but there was never a connection to anything larger being wrong with her.