Tuesday, May 1, 2012

May Day

Sometimes I forget that I'm not not stupid. Or worthless. Or bad. It's usually when I'm pretty sick, like now. It is, of course, now Ehlers-Danlos Awareness Month and someone had posted a French doctor's website and I was reading it. I was going through sentence after sentence of French like someone pushing through heavy doors.

And I thought, "You're pretty good at this!" It was a nice moment. It was really like remembering an old self, the ghost of a self who was really quite adept at learning languages.

But how silly, of course I can still read French. I still remember when I decided to take it up, back when I was 12, because my name, Yvette, was French. I like being Yvette. I don't meet a lot of other Yvettes.

So, my rheumatologist and my orthopedic surgeon have stopped returning my phone calls. This action demolishes the wing of my medical team dedicated to joint manifestation of EDS and as such I am in a lot of pain. A lot of pain. I was shocked and dismayed by the fact that no one would call me back, no one wanted to deal with me. It's like I'm some kind of pain leper. The only reason I even know that this represents a termination of our relationship is that my physical therapist past me a message that invited me to avail myself of a chronic pain program.

I was so angry I almost burst into tears on the spot. Really, I felt disrespected, profoundly so. Probably the maximum amount of disrespect one can feel within the context of a professional relationship. And I was furious that my physical therapist would be complicit in such a display and humiliated that it was happening to me.

It's funny, I guess people come to me ready for a fight and then are shocked to see that I have actual emotions. There was someone doing bicep curls in front of me, someone on the exercise bike behind me and I guess my PT had been ready to have a terse argument with me, but when I start to break down instead, he doesn't know what to do.

Also, unless I have cancer, I'm never having surgery again. I'm never falling for the "I will adequately manage your pain for as long as necessary," spiel again.

The really thoroughly screwed up part is that I probably would recommend my surgeon to another patient. Just not a black one. That sounds awful, but since most people badly affected EDS are women and many of them are young women, I had a healthy sample set to demonstrate that I was the only dissatisfied customer. And everyone else was thrilled.

I don't have very bad pain either. I just have very badly managed pain.

To cap this month of unpleasantries, my PCP is on vacation. I'm on the cancellation list with her stand-in, but I'm not hopeful. There's always urgent care, but I'm feeling very shy of doctors right now.

I have to do something, because it's not going away. I have officially reached the ceiling. The best I can at the maximum dose of this drug. And my best is really bad. I've been in my dirty pajamas for days. It's hard to do everything, including get dressed, make the bed, brush my teeth, shower. In fact, I could never do all of that in the same day. Usually I choose to brush my teeth. And I make sure to drink water so I don't get dehydrated. And I comb my hair so it doesn't tangle.

And I try to get though one day to the next.

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