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May. 23rd, 2025 07:15 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
Primary care thinks I have EDS! It would be really great if this was The Answer: it's nondegenerative, I just got the wrong user manual for my body and now can start learning to work with the one I actually have. I'm scared about what if we're wrong, though, or what if there's something else going on in addition? Either way, what I was scared about before was not only all of that but also that she was going to diagnose me as either drug-seeking or just fat & lazy, and instead she seems super on board with yup something's up, here's next steps, and if that doesn't help thoughts on what specialists to refer me to next. I think even if our current plan of get some OMT and work on strengthening my core doesn't fix everything, it still very much sounds like it'll help (and definitely can't hurt!)
Most of me is hopeful I get to open a new door here, like when Wiley first suggested I look into autism because maybe it me too - that I can learn to work with my nonstandard body the way I've learned to work with my nonstandard mind, and grow to thrive from here. What I wasn't expecting was for part of me to be grieving being right... I hadn't realized until she was like "yup sounds like this" that I'd been hoping nothing was wrong and I was just lazy and out of shape, especially post-concussion. Instead I'm now finding all these journal articles about how concussions heal much slower & less-fully for EDS patients, and can often be the precipitating event to getting a diagnosis as it's what puts them over the edge to no longer be able to get by with whatever previous coping mechanisms they'd patched together, and like... yeah. That one.
Stephen's on a trip our east right now but tried some extra KT Tape strategies before they left and Oh Man even if I learn nothing else from all this, it having empowered me to be like "hey now that you have 2 years of medical school under your belt, do you have thoughts on how we could tape other parts of my body besides the one trick on my shoulders my vestibular therapist showed us 5 years ago?" has seriously leveled up my quality of life. My ribs feel so good! Turns out I've maybe been subluxating my ribs all the damned time, and while Stephen has the training to slip them back into place now, adding in the technique of supporting them to encourage them not to slip in the first place is a serious win... especially for when they're not gonna be around for the next 11 days to fix things as they happen
Most of me is hopeful I get to open a new door here, like when Wiley first suggested I look into autism because maybe it me too - that I can learn to work with my nonstandard body the way I've learned to work with my nonstandard mind, and grow to thrive from here. What I wasn't expecting was for part of me to be grieving being right... I hadn't realized until she was like "yup sounds like this" that I'd been hoping nothing was wrong and I was just lazy and out of shape, especially post-concussion. Instead I'm now finding all these journal articles about how concussions heal much slower & less-fully for EDS patients, and can often be the precipitating event to getting a diagnosis as it's what puts them over the edge to no longer be able to get by with whatever previous coping mechanisms they'd patched together, and like... yeah. That one.
Stephen's on a trip our east right now but tried some extra KT Tape strategies before they left and Oh Man even if I learn nothing else from all this, it having empowered me to be like "hey now that you have 2 years of medical school under your belt, do you have thoughts on how we could tape other parts of my body besides the one trick on my shoulders my vestibular therapist showed us 5 years ago?" has seriously leveled up my quality of life. My ribs feel so good! Turns out I've maybe been subluxating my ribs all the damned time, and while Stephen has the training to slip them back into place now, adding in the technique of supporting them to encourage them not to slip in the first place is a serious win... especially for when they're not gonna be around for the next 11 days to fix things as they happen