I urge you to read this post, Where is God in Chronic Illness, by Elizabeth at Esse Diem. She's an amazing writer and was diagnosed at age 30 with MS. Her nerves are the bane of her mental clarity in the way that my bones are beginning to be. (But sweet heavens in no way am I comparing my back issues to MS.)
The thing she struck me with was this anger at the disease for distorting her "personal brand." My doctors have seen me break down hard recently- crying because I built, very deliberately, a brand of "Weird in Appearance yet Not Disabled Woman." This persona has got some cracks now.
That funky swirly claw arm does its thing folding clothes, opening jars, and propping babies on hips. But inside, bones I shouldn't even have are launching an internal sneak attack. A doctor at the urgent care clinic I saw this week was shocked I hadn't been referred to a specialist. She gave me the name of a local neurosurgeon who specializes in spines. His secretary let me know he doesn't, however, treat scoliosis. She was a sweetpea, though, and gave me the number to a guy at Marshall U, about 45 minutes away in Huntington, WV. He's an orthopedist. I'm waiting for an appointment and continuing the PT stretches, the chiro, and the amazing Kim, for whom I started this drawing:
I'm struggling to get a handle on this. Seeing it as a fight against the pain feels wrong. That works for depression for me, where the depression's a bloated vampire and I'm all Buffy. But this is a new thing. I've got to get back to building that sense of self and accepting the bones and body that are mine. I'm remembering gratitude a lot, and trying to look at my footsteps each as a gift, rather than fretting over what changes my body has coming. It's a manageable thing, and I'm listening to muscle, nerve, and intuition. I have to trust the body-self and flow with it. I'm surrounded by allies who pop the bones and knead the muscles and (at the moment) alter the chemistry. Thanks to Elizabeth and others who share their journeys. It would be dreadful to feel alone with obstacles like this in our path, but we aren't alone, and that' there is a whopping dose of healing goodness.