Monday, December 13, 2010

I will not cry at OT...I will not cry at OT....

Now that winter has remembered herself, she's struck us with a vengeance. Most of the schools were canceled, the roads are in terrible shape and the temperature even colder than usual. My room is right above the garage and the floors are wood, so brrrrr.

OT is wonderful and I have high hopes for PT as well. My OT, K. gave me the most wonderful splint for my thumb. It feels so good to wear, that I practically reach for it along with my glasses in the morning. It feels excellent to drive in, especially. I was so used to enduring the pain that came every time I made a turn.

So used to enduring a lot. I almost cried when K. didn't question me, didn't accuse me of exaggerating my pain or the things that have happened to me.

She just listened to my doctor (Francomano, in this case) and evaluated me for the splints I needed. I almost cried. "No one's ever tried to help me like this before," I said. In fact, my doctors rarely said the name of my diagnosis to me and I'm positive that a good percentage of them didn't think I had it, or if they did think I had it, didn't think that fact constituted anything significant.

To some of them, I was like a welfare mom, only minus the welfare and...minus any kids. I was a drain on their time and their resources and I should really just excuse myself from their venerated presence so they could get on with the business of helping people who actually needed it.

Can I interest you in another run-on sentence? No? All right.

The emergency appointment I had with a rheumatologist (who as I dreaded, was really an "immunologist") was a little more trying. He wanted to learn about EDS, but wouldn't take a single journal article or brochure from the EDNF. He couldn't believe that someone might need lifelong pain management from EDS. He didn't even know that it was autosomal dominant based on the complete surprise he exhibited when my mother walked in ("You have it too?!").

It reminded me of the doctors' appointments when I was small and trying to convince the pediatrician that my knee had dislocated, without knowing the word 'dislocation'. I was seven or so. I only knew to indicate the place where my kneecap would migrate to (the side of the leg.)

The feeling of being my body's 'unreliable narrator.' Nothing I say is necessarily true.

Moving my fingers. "You're not that hypermobile." Versus Dr. Francomano's "These are very hypermobile fingers. Exceptionally so."

Does the arrogance never cease? This man and his three-minute-old opinion versus a doctor who's made this her veritable life's work. I should feel gratified that he's at least trying to learn, but after months of mistreatment rather than more inclined to settle for anything I am even more weary of delays.

EDS is not being patient while doctors educate themselves. EDS does not cease to exist when it is not acknowledged and it does not wait until the light of human understanding falls upon it to wreck my body.

I have been working to tolerate increasing amounts of pain the way you try to close the door on the closet that is filled to bursting. A thousand and one diversions and I try not to notice that I only leave the house for doctor's appointments and 'hanging out with friends' or even 'sitting quietly at the coffee shop' seems distant and unlikely.

I hope it's like a wave the blows over soon and these things will become natural to me again. I haven't given up; I'm still waiting to do them. I'm still waiting to do it all.


Anonymous said...

good luck today yvette

Anonymous said...


If the rheum doesn't work out well, may I suggest a physiatrist for treating the joint-and-muscle type problems? I have a great physiatrist who handles all of mine, and writes for the vast majority of my braces. Dr. Jacobs is wonderful. I got diagnosed with EDS I think 6 months after I started seeing him. It didn't matter to him why I bent in all kinds of ways I should not, all that mattered was that my joints and muscles were screwed up in ways he could help with. Of all of my specialists, he is one of my favorite. He listens very well.