Bear has woken me up twice in the last month or so because I wasn't breathing. Every time I started to drift back off to sleep afterwards, it's like my body forgot how to inhale unless I was consciously reminding it to do so. Time to pursue that Chiari investigation, I guess...
My headaches and fatigue are worsening, my headaches can be triggered by straining, my vision is worse but eyes are fine, my tinnitus is worse but resolves when I hold my head/neck at a weird angle, I get dizzy spells not related to standing, my bladder issues are more frequent..
BC only believes in Chiari I in children apparently even though symptoms tend to emerge in 20s and 30s...?

I'm not keen on going down another diagnostic rabbit hole, but breathing is pretty important. 😬 The forgetting to inhale thing happens during the day as well. Sigh...

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More from @the_tweedy

15 Jan
One challenging thing about disability that we discuss a lot is learning to set boundaries and say "no", but can we also talk about the importance of setting parameters and saying "yes if"?
Improv people have this whole philosophy built around "yes and". Maybe it's time for a crip philosophy of "yes if".

Yes, if my access needs are met.
Yes, if we operate on crip time.
Yes, if someone else is responsible for logistics.
Yes, if we keep plans tentative.
Saying yes to one thing and then having to compensate by saying no to something else isn't always the only option. Sometimes it's possible to say yes to more things when it's a "yes if" -- when it's a yes *on our terms*.
Read 6 tweets
11 Jan
Finally saw a medical geneticist (thanks province of BC for making that so goddamn hard). I had hoped that it would mean getting to speak (at last!) with a doctor with a more global understanding of the condition, but no -- just joints, genes, and gtfo.
Wasn't super impressed. Didn't learn anything new. But at least he wasn't rude? And my chart now includes three cEDS diagnoses (one from an internal medicine specialist, one from a rheumatologist, and this one from a medical geneticist) so I'm, like, triple verified...?
I don't need to keep getting rediagnosed! I want a better understanding of my condition and better symptom management... but I guess not?!?!?!

I have had other, less specialized doctors with a more in-depth, comprehensive understanding of the condition and how to manage it tbh.
Read 9 tweets
8 Jan
"Oh so now it's 'disabled person'? Why does the language keep changing? Why isn't it ever good enough? Can't we be done with this?!"

The language keeps changing because it is not actually about words; it's about power.
It's about the willingness of those who control the narrative to cede power to those impacted by it.

It's not about finding the "right" words in order to speak from a place of innocence. Seek instead to speak from a place of solidarity.
And let's be clear: the language will keep changing. No words will ever be "good enough" as long as they are spoken be others on behalf of a community denied the space to represent ourselves.
Read 4 tweets
8 Jan
Top-tier grad schools are like "let them eat prestige".
Fucking pay your grad students.
(Y'know, like enough to live on...?!)
Read 4 tweets
6 Jan
Gentle reminder: a mobility aid is not a last resort. You are not obligated to endure increased pain and fatigue or to miss out on valued activities and experiences. If a mobility aid would improve your quality of life, that's a good enough reason to use one!
I know that doctors and insurance don't always think this way, but they're wrong. πŸ€·β€β™‚οΈ
Furthermore, it's okay to use a mobility aid strategically! In other words, you're allowed to use a mobility aid for something trivial so that you can then do something valuable later without using it (e.g. using one to go grocery shopping so that you can go hiking later). Valid!
Read 4 tweets
5 Jan
My cat-husband has a lump. It's being biopsied right now. 😭
Thank you for the well-wishes, pals! We'll know in a couple of days. πŸ’š
Please ALSO think good cat insurance coverage thoughts... 😬
Read 4 tweets

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