curiousorca.bsky.social
Disabled ex-clinician
People > Profits
Bedbound rabblerouser
š¬š§Ŗnerd
Poodle mom
Making art keeps me sane-ish
Probably listening to #TheCure š„
#LongCovid #PwME
#MyalgicEncephalomyelitis #hEDS #POTS #neuroqueer #auDHD #decolonizer #Vermonter
63 posts
177 followers
458 following
Regular Contributor
Active Commenter
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Iām also now noticing that. Effing skill regression š¤
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Visible really helped me learn to pace. Highly recommend.
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Iām so sorry. And also welcome. The Bateman Horne Center does excellent clinical research on LC and ME. They have patient and clinician resources on their site, including treatment guidelines. batemanhornecenter.org/education/me...
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Thatās so interesting!
Poodles are the best ā¤ļø
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š
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Relatable! I still havenāt had the energy to play with the Kakimori brass nib I received over the holidazeā¦I gaze at it longingly š«
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Iām so sorry that your daughter is struggling with this and that it took so long to be believed. That appears to be the universal experience. So glad you now have a provider that believes her!
Thatās step 1! Most physicians know nothing about these conditions. Itās a huge problem.
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@skyview.social
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No recs for book use, but nice stitching!
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MECFS, other invisible disabilities that primarily impact AFABs and marginalized folx not a thing, but we were told *by the physicians who wrote chapters in the main medical textbooks* that those symptoms were psychological. Infuriatingly, I hear it hasnāt changed much. 2/2
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Iām glad you found someone who gets at least some of what youāre experiencing. Just being believed is a huge win!
Can concur, when I was receiving my medical education in the early 2000s at a top Ivy League research center in the US, not only were post-infectious syndromes, 1/
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FFS. Gah!
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And Iām so sorry you have these diagnoses.
Yes the āpersonal responsibilityā and wellness culture BS is so insulting.
I see you and Iām with you š
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Hospitals are in a staffing crisis. They canāt afford callouts. The solution? Donāt test. Short-sighted (obviously). Infuriating. Terrifying.
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Exactly.
It has to happen to them or someone close to them for it to be believable.
And far as clinicians go, professional ego and disbelief of what canāt easily be quantified and qualified prevents compassion and empathy.
I say this as a former clinician who was trained this way (but resisted).
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I immediately recoiled from warrior language when I became chronically ill.
Same with acceptance.
I have Long Covid and ME. There is no timeline for improvement with these. Hell, most people donāt even believe weāre sick! I donāt accept this
Surrendering to what is has been the only way forward.
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Ugh sorry. That 48 hr delay is a bitch! Just when you think you made itā¦.
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lol!
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Your work helped me enormously! Much gratitude from a disabled former clinician š«¶
Iāve lost almost all faith in the medical field which I loved dedicated over 30 years of life to. Your work is so important.
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Your article in NatGeo was what helped me understand that the reason I couldnāt get out of bed for a year after developing Long Covid/ME was likely POTS.
Dismissed, gaslit, and prescribed only exercise for a year!
Finally diagnosed and can tolerate upright position with the correct treatment. TY!
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Not sure why I didnāt keep up with that after trying it a few years ago. Appreciate the reminder!
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Oooh this one is right up my alley! Thx
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Exactly!
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Gah how did I forget to list WWDITS?! An all-time fave.
If you liked that and havenāt tried Our Flag Means Death yet give it a go. Queer pirates AND Taika Waititi? Yes please.
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Excellent philosophy!
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I envy your willpower! š¹ May your scarf be a quick finish
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Loved both of those! Sharon Horgan is amazing in Catastrophe and brilliant in Bad Sisters.
Agree season 1 of Colin was excellent but season 2 lost the plot and I couldnāt finish :-/
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Thx for these!
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Amazing! Thanks!
Havenāt seen that one yet. With you in GenXgoth solidarity š¤