Since looking at the visual of my curved spine, I’ve noticed just how “lop-sided” I can be. I seem to lean to the left which is how my spine is abnormally curved. And my left side is a lot more tight than my right side. I suppose it makes sense. If I’ve been skewed to the left for however many years, then it stands to reason that my muscles on that side would be at least a little shortened over time.
Exactly how long things have been this way, I’m not sure. I was told that I had scoliosis, about 20 years ago, but the provider who talked to me didn’t give me much information. She just said, “scoliosis” and moved on. Literally. Just one word, said in a whispered, almost disappointed tone of voice. A woman of little words… And I didn’t follow up.
I didn’t understand what it meant. I wasn’t sure how bad it was, and she didn’t elaborate. That’s a little disappointing.
I can’t fault her, though. We didn’t have a close working relationship — or even a regular one. I saw her maybe twice over the course of a few months. And that’s not nearly enough time to develop rapport. It stands as a prime example of the kinds of situations I’ve been in with clinicians, time and time again. I only see them every now and then, and I never develop enough of a rapport to feel comfortable with the requisite back-and-forth I need to exchange decent levels of information… either from me to them, or the other way around.
The prospect of continuing this trend doesn’t appeal to me. The more I think about it, the less comfortable I am with just letting things “ride” in terms of my health. I have more responsibilities now than I had, 10 years ago. And I’ve gotten less “spongy” than in the past.
Stuff doesn’t pop back into place, like it used to.
So, I’m thinking about different ways of engaging with my doctor(s). I don’t want to get all into the “Dude, I’m autistic”, because that means different things to different people, and I don’t want their presuppositions overriding my own individual situation. I want to approach my situation based on individual issues — the ones that are problematic to me, versus the ones that they think are a problem for me.
I think maybe it makes sense to approach my PCP/GP and let her know that:
- My sense of pain is variable, and I don’t always know when something that’s “up” with me is a real issue. Some serious stuff, I don’t notice. And other things which aren’t that major can bother me to no end. Like… not noticing my ribs were giving me problems for a few days, then all of a sudden, they got worse, and I didn’t know what to do about it… got an x-ray, got bloodwork, and nothing came up at all. Plus, my symptoms started to subside within 24 hours of getting checked out. I could have easily left myself alone, even if things had been serious, and gotten into more trouble. Or not.
- My sense of symptoms in general is tricky. I have “let myself go” in the past to the point of nearly having my eardrum burst, or having a really bad infection, or even driving myself to the doctor when I was fevered and had borderline pneumonia, because I didn’t really “get” just how rough things were for me.
- I may have a sense about what’s going on and what I need to do about it, but I’m unclear about what instructoins I’ve received and what they actually mean. I don’t always know what to expect as a result of things I do, like whether an ointment is supposed to sting or burn… or whether it’s normal for someone to experience “roid rage” when taking Prednisone… or how long I can expect it to take for something to clear up. Sometimes when I go to the doctor, things she says to me don’t even sink in until later, and I realize then that I have more questions.
- I need to take written descriptions and diagrams of what hurts, when I visit the doctor. I need to write things down ahead of time and share them with her. Upload them to the portal, too. The doctor at the urgent care place who ordered the x-rays for me really appreciated the notes I gave her, along with the diagram of where things hurt. I think it helped her have a better sense of what was going on with m
I’m not sure I’d need to actually go see the doctor each time — they have a portal I can use to ask questions — but sometimes it’s easier to communicate in person. I’m also not sure about the protocol for using the portal… so I’ll have to ask about that.
Basically, it all boils down to doing a better job of communicating with my doctor(s). I know I “fall down” in many respects (that’s just part of the magic of being me), so it’s incumbent on me to do something about it.
It’s not rocket science. I’ve got plenty of tools and capabilities I can use to augment my situation. And it’s actually kind of fun to design solutions for myself. I can design things better, in any case, than other people can. Because I have first-hand up-close-and-personal experience with all the sh*t that goes wrong along the way. I have a pretty good sense of where my weaknesses are, and I’m getting a better sense of where my strengths are, as I go along.
It’s all a process. And it’s the best kind of science.
It’s not my favorite necessity to sort out, but while I’m at it, I might as well have some fun with it.