Tuesday, September 21, 2010

Me, Dreading a Birthday?!

I am pushing the idea of being thirty around in my head like a kid pushes food around her plate. Do I want this right now? No, but I haven't got a choice. Here comes the 3-0, whether I like it or not.

While my friends have "Flirty 30" or "Dirty 30" parties, I'm still caught on the 'Wait, not yet' train. I am not done with my 20s; not until I get this whole mess sorted out.

I haven't yet figured out how to live with a condition that seems to get worse every time I turn my back. For a condition alleged not to be progressive...well, that seems suspiciously like horse shit.

I can feel myself getting worse by the month, meaning every month brings more dysfunction and more pain with it. Now I cannot sit on the floor except to sit flat...any other way and both hips will immediately sublux. I wonder if this isn't directly responsible for the bursitis in my hips.

It's like an infection traveling (very quickly now) from joint to joint to complex of joints. At first my hands did not bother me at all. Then it bothered me only to write longhand. Now it bothers me to type and much else besides. The pain in the affected joints increase, their laxity increases, then other joints also begin to hurt.

It doesn't help that my father (the nurse) is in a constant state of denial and my mother (who has very mild EDS) is beginning to develop POTS and has decide to spend the fall and winter in the same state.

I still need to find a doctor. I'm about two steps from putting an ad in the newspaper and issuing a challenge for any doctor within a 50 mile radius (preferably an osteopath or physiatrist, but orthopeds and rheumys are also acceptable) who wants to treat a moderately affected woman with mild classical EDS and either closely coordinate or themselves administer a pain management regiment.

Or I can do it manually, which consists of this:

Me: Hi, do you have a doctor there who's willing to treat Ehlers-Danlos Syndrome?
Secretary: What?
Me: Ehlers-Danlos Syndrome.
Secretary: Spell it, please.
Me: E-H-L-E-R-S hyphen D-A-N-L-O-S Syndrome.
Secretary: Well let me ask and then give you a call back.

A week goes by.

Me: Hi, I called about a week ago asking if there was a doctor there who's treated or is willing to treat Ehlers-Danlos Syndrome?
Secretary: What?
Me: Ehlers-Danlos Syndrome.
Secretary: Can you spell that please?

*~*~*OR*~*~**~*

Me: Hi, I called about a week ago asking if there was a doctor there's who's treated or is willing to treat Ehlers-Danlos Syndrome?
Secretary: What?
Me: Ehlers-Danlos Syndrome.
Secretary: Ohhhhh! Well, I talked to him and he's never heard of it.

Invariably. That shit has become so old and so predictable to me that if I pick up the phone and call another doctor's office and hear the same thing, I'm likely to blow it up.

Then I called and made and appointment with the geneticist who first misdiagnosed me (desperation, I've arrived!) to see who she referred to. Only yesterday her office called and informed me that due to a family emergency my appointment would be re-scheduled for a month later.

I'm like, no, wait, shit! I don't want to be 30 until I have a doctor!

My other options are the last two rheumatologists I saw. One of whom acknowledged that I had EDS but said I was "letting the pain get to me."

Or behind door two, the rheumatologist who said I didn't have EDS I just had fibromyalgia and I needed cognitive-behavioral therapy.

But I really can't go there yet; maybe after I go a little more pain-crazy and am willing to flush some more of my dignity down the toilet.

Although, if I'm nutty enough to go back to either of them, the whole affair might just as easily end with my arrest.

6 comments:

Em said...

happy birthday for tomorrow. many emotions are wrapped up in being thirty, i dont suppose being ill helps with all this. xxxx

Yvette said...

Em, thank you so much! I've decided it's not so bad...though I swear that wrinkle at the corner of my mouth wasn't there before....

Chronic Geek said...

Happy Birthday today!!

<3

Yvette said...

Emma, thank you!

brilliantmindbrokenbody said...

Because yes, CBT will stabilize those inconvenient loose joints! *rolls her eyes and shakes her head* I often find myself wondering what is wrong with these people. I mean, really, they can't see what's in front of them.

And what is it with geneticists misdiagnosing us moderately affected classical types? My first geneticist was a jerk who told me I just had 'familial joint instability'. I can't imagine yours was much better, if you walked out with a wrong diagnosis too.

Maybe if they could learn to listen to us, they could actually do something radical and new - their jobs.

Also, sorry I'm a day late, but happy birthday!

~Kali

Yvette said...

Kali, I submit that doctor who start saying nonsensical things like this one are really struggling for a way to say, "I don't know shit about this disease" without losing face.