There've been scattershot updates everywhere, but here's a comprehensive one.
This is the year I'm finally focusing on dealing with underlying chronic conditions. I have acute things so often that stuff like "my hands don't work well" and "I haven't had a pain-free day in eight years" kinda get shoved to the side while we deal with pneumonias and ankle sprains. I'm doing this because dammit it's about time, because now that I'm not constantly on call for someone I have
time, because I need to have my body stuff as well-managed as possible because being a foster parent means I need as few Lost Days as possible, and because I finally have a proactive doctor
Having a proactive doctor has triggered a lot of stuff! (Not bad-triggered.) I went to an orthopedist
, who referred me to physical therapy.
And we're developing some working theories.
I don't have a diagnosis yet; we're waiting on prior authorization for that chromosomal microarray. But it looks like several of my problems stem from hypermobility. My pelvis is all over the place. Seriously. On Friday, my PT had to really aggressively shove it back into place, resulting in fucking awful pain Friday night and much of Saturday - but yesterday (I only get one PT session this week due to Monday's travel), it was still in place! We're very focused on my pelvis and sacroiliac (which also wanders) in PT right now, because when my pelvis is rotated
like that, it screws up my back and leg muscles something fierce, and then I get the domino effect.
We have no idea how long my pelvis had been rotated. Best guess is a long time.
My muscle weakness doesn't help; that's common in people with hypermobility. I stand with my knees locked backwards-ish, so my thigh muscles have not been working.
(Mom: "But you walk so much!"
Me: "That's why I have great calves
Mom: "Oh. That's why I still have calves.")
So the regimen I'm on from my physical therapist = exercises to strengthen the muscles around my pelvis, so it's less likely to shift out of true. Which seem to be working okay right now! They're hard as hell, though. PT is evil. >.> After we're confident that I'm proceeding well with that, we'll move on to the rest of my body, but seeing that the pelvis is the biggest thing that can screw everything up, it comes first.
Meanwhile, back at my primary care doctor (the geneticist is now my PCP!), we met on Tuesday about my pain. Seeing as the PT is working on the hypermobility stuff, he's focusing on my spine. He thinks that there's more we can do to help with my herniated disc, nonsurgically. Next time I see my orthopod, I'm to ask for a referral to a spine center; he recommended one, but would bow to the orthopod's expertise. Also recommended an additional orthopod who focuses primarily on the pelvis, which is apparently not a popular concentration.
For now, he wants me to take Aleve twice a day to see about reducing inflammation, to use a heating pad on my back for half an hour before bed every night whether I feel like I need to or now, and to do Moar Exercises.
He also thinks that the insomnia is related to the pain. They did come on around the same time. His target is to get me where I can phase out the Flexeril, but it would obviously be a super incredible bonus if I no longer needed Lunesta. And this theory makes sense - I mean, the first time I noticed my femur popping out of its socket, it was when I woke myself up stretching, which is my body's unconscious attempt to alleviate muscle pain. Yes, I have a racing mind, but if the pain's contributing...
Also, thanks to money Mom sent from the sale of some of my late grandmother's stocks, I was able to make my necessary dentist appointment. (They require pay in advance, since I'll be heavily sedated the day of.) So that
is finally getting taken care of.
It's expensive; the PT is $50 a week, the orthotics were $250, et cetera
. It's grueling - all the exercises that tax parts of my body unused to work, the twice-weekly trips to PT, the big changes in my schedule, having to constantly change how I sit, how I stand. But my doctor believes that we can restore some functionality and have me in less pain, and I'll fight for that.
For the first time in a while, I have the opportunity to be proactive about this, and I'm glad I'm taking it.