Elastigirl

0

My kid’s taken to calling me “Elastigirl” because: Ehlers-Danlos Syndrome.

In regard to my stretchy skin:

“Look on the bright side: People can play with you.  I don’t mean play with you like you’re a person.  I mean play with you like you’re a thing.”

My kid says the damnedest things. 😐

Advertisements

I Suck at Healing

0

Aaand a month after my leg was expected to have healed, it’s still only partially healed.  (I should have had these X-rays a month ago, but I had to reschedule because of stuff with my kid.)  The bottom part has fused with the cadaver bone, but the top part hasn’t fused at all.  My doctor was stunned.  We’re guessing it’s probably due to the Ehlers-Danlos, even though that tends to affect soft tissues more than bone.  He said it’s possible I may never heal, and we’ll have to do a bone graft between my hip bone and the cadaver bone.  Right now the plan is to give it another two months (while doing these bizarre electromagnetic therapies) and then schedule a bone graft if the x-rays don’t look any better.

On top of that, my knee keeps slipping out of the joint, perhaps half a dozen times per day.  It all started after my kid accidentally kicked be under the table while my legs were crossed, although my doctor (same doc — orthopaedic oncologist) doesn’t think it’s really related.  He says it’s likely due to the EDS as well, heightened by the fact that the joint is so damned atrophied.  I reminded him that I have Type 1 EDS as opposed to Type 3 (in which joint subluxations are common), but he says he’s “not overly concerned” because the x-rays look good and it’s happening below the area he’d operated on.  Well, I’m concerned.  It hurts like a motherfuck every time it happens.