In the past few months my FB participation has been a bit sporadic. Most who know me know that for the past 20 years my shoulders have been surgically chopped & reattached because they dislocate way too easily. This past summer my hip dislocated which was distressing as any new pain freaks me out. Oddly enough, my hip popping out had a positive twist, no pun intended, because I finally got a diagnosis that gives all my injuries a reason why. I had hoped I had a tear in my hip, but no such luck. I have EDS, a rare disease where collagen doesnt hold joints in place which can be quite painful. There is no cure and since its rare finding doctors has been a frustrating process. Living in NYC where walking is necessary has been a bit of a downfall, but I am trying to not let it get to me, easier said than done. Its nice to have a diagnosis, but I would much rather have an injury than a lifelong thing, no question. Im very lucky to have unwavering support from my husband, family and a handful of dear friends. I dont know where I would be without them. I have to learn not to define myself by all I cant do as easily as I used to, something definitely I work at day by day. It sometimes feels like my body has been stolen, limb by limb strung like a marionette. Its very hard to watch life in the passenger seat without being able to fully participate the way I desire. When it was just my arms I believed shoulder replacements would be the solution, realizing this is not the case has been difficult to accept. If only I could find a doctor locally who can help keep pain under control half the battle wouldnt feel so much like Im becoming Sisyphus. One day soon...
Posted on: Mon, 19 Jan 2015 22:44:12 +0000
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