Having the right doctor has changed my life.
When I moved to Boston, I was literally fresh out of the hospital. I went from my video EEG monitoring to packing up an entire three-bedroom house to moving, boom boom boom. Still on terrible anti-seizure meds, still in lots of pain. So when Adam got the list of doctors, we just picked one at random, and he was fine. I've said for years that Dr. B. is great if you already know what's wrong with you and just need your symptoms treated. And I was okay with that, because chronic illness means you have no energy to look around for something better if something is already working. If you're lucky enough to find a doctor who isn't actively adversarial - and this is challenging for chronic pain patients and especially read-as-female chronic pain patients - you stick with that doctor. I have always wistfully said, though, that what I really need is Dr. House. Someone who could put everything together, find the invisible connections, and get me maybe a little bit better, or at least get me more data.
And then I got Dr. F. Who was clearly the doctor I'd always wanted but never knew actually existed outside of TV. I wrote up everything weird about me, we spent a long time talking and taking measurements... and he knew that it would take time to convince the insurance company to do the genetic testing, but he also knew, just by observing me, that an orthopedist could help me start feeling better now.
The main utility of the orthopedist so far (I have my second appointment Monday) is the orthotics and the referral to the physical therapist.
And I am SO GLAD that I listened to myself when I didn't connect with the first PT place, because they would have done fuck-all. The one I've been going to for four weeks now?
No hyperbole. Changed. My. Life.
I had no idea how much of my daily pain was due to hypermobility. It had never occurred to me. It would never have occurred to me that the way I naturally sit in a chair actually rotates my pelvis up and out, slips my sacroiliac joint out, was contributing to my femur clicking out.
I have changed the way I sit, the way I stand, the way I walk. I have to be hypervigilant about this! It's decades of habit to correct in a month, but I'm doing it; I haven't sat wrong since the first week. And my pelvis has stayed mostly aligned since that awful day that he had to slowly push it back into place; only mild-ish corrections needed since.
Four weeks of daily exercises to build core strength and strengthen the muscles around my hips, to better keep them in place. Four weeks of much-more-intense twice-weekly sessions with the physical therapist.
My progress has been measurable and quantifiable. Not just by the trained professional - it's noticeable to the layperson, to the naked eye. My body is stronger than it was. My control is better - him telling me early that one particular leg-raise was not about the height I could get, but the control, made everything click.
He's requesting four to eight more sessions from my insurance company, but says we might not need to use all of them. From now on, I go once a week, not twice. There is a future in view where he will give me discharge instructions.
I will need to do daily at-home PT for the rest of my life, essentially, to maintain this, to help my body keep my joints where they're supposed to be. I can do this. It's worth it. I have results. I have progress.
I had grateful tears yesterday.
I did not know this was possible.
So yeah. Chronic pain friends: if you have the spoons to do so, shop around for a doctor. Ask about PT. Obviously, this is my body and your body is different, but if there's a chance that you could feel even a little bit better... I hope you ask.
This is my year of getting this shit handled. I've scheduled the next attempt at dentistry. Will hear back soon about the genetic testing. Orthopedist on Monday. I will do whatever I can.