Ehlers-Danlos mama trying not to twist things up *too* much!

Sunday, October 3, 2010


Still in the hospital recovering after Thursday's surgery. The pain in my hip, the site from which the autograft was harvested, was awful for the first 72 hours, but now seems to subsiding. My shoulder feels ok, but I've been through that piece a lot. My knee is still a mystery. My ortho is now thinking ACL injury. More on that later...

There are several hospitals in my area with large orthopedic programs. I'm sure each has its advantages and disadvantages. My surgeon is affiliated with a hospital without a residency program. At this point in my life, I see this as a positive. I spent many, many years being a medical guinea pig as a result of my Ehlers-Danlos Syndrome. Because EDS is so rare, residents love to use me as a learning experience. Sometimes, this is fine. Others, when I'm ill or in severe pain, I don't want to tell my story just so that everyone has the opportunity to practice their interview skills.

This hospital has a dedicated Ortho wing, but it seems that all the beds there were taken on Thursday night. No major complaints, though--I'm still in a private room with a wall-mounted flat screen LCD tv, a pull-out couch, a recliner and ample table and closet space.

The staff here have been so kind--hence the "Hospital/ity" title--and I've certainly needed a lot of help! Between Thursday's surgery involving both extremities on my right side, a shoulder fusion and unstable (post-op) ankle on the left and the need to use a forearm crutch and drag around a huge IV pole, I've been pretty useless. Throw in some POTS and medication side effects and I'm probably completely useless.

Overall, it's nice to get medical care in a hospital where I'm more than just a number or a syndrome.

It's taken me several hours to write this post, which is unlikely to be read by anyone. Since I'm falling asleep (again), that's all for now.


  1. Glad you're beginning to recover and that at least the environment is nice. Rest and heal up! :)