ArianeK 💜 #Care4Complex (she/her)
@arianek
Co-founder @Textillia! ✂️💕 • SFU Geog • Public health/urban planning/web nerd • #NeuroSjogrens • #Dysautonomia #Care4ComplexCanada ♿️🌈🇦🇲🦆🐶📚🖖💌🌿
I don’t know where to begin to explain where I’ve been for the last year + a half. I’ve been approved for #MAID after a nightmare of medical malpractice/negligence + severe medication/iatrogenic injuries. I don’t want to die, but can’t live like this or get adequate medical care.
People pushing “brain retraining” as a curative treatment for severe post viral illness, autoimmune disease, neuro immune disease, etc. can go straight to hell. You are propping up a massive grifter empire that is destroying the lives of the most vulnerable sick people. Fuck all…
I cannot express how fed up I am with this pseudoscientific BS that is preventing people from getting real medical care.
It IS a version of ME/CFS/Chronic Lyme/mold illness. Fortunately, it has the same cure--calming the nervous system and reducing sympathetic excess. It's totally curable, and many (free) resources online are helping people with these mind-body conditions.
How many more deaths do you need before you stop accusing people of faking their illnesses? “I was accused of fabricating Maeve’s symptoms right up to the point in which she died.”
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
I think this situation qualifies for the #MedicalHungerGames, hey @NeuroSjogrens?
I can’t believe this. The two antivirals that can treat chronic Norovirus are no longer commercially available in Canada. One was withdrawn two years ago, the other can apparently be requested via the Health Canada “Special Access Program” (if you have a doctor willing to go…
Sorry, there's a lottery to get up to date clinicians in a given disease. Your disease did not win the lottery. Try again next year. #MedicalHungerGames (get this # trending?) #Sjogrens #MECFS #FM #LC #POTS #IACC #PostLyme #hEDS #Dysautonomia #NeuroSjogrens Whats ur disease?
Should I make one of these except for patient harm in complex illness and the steps of the BC Legislature? Barely joking. #Care4ComplexBC
Thinking of David Wojnarowicz, artist activist who died of AIDS this day in 1992. In the late 1980s, after he was diagnosed, his art took on a sharp political edge. As with Larry Kramer, I often wonder how he’d react to the extreme inaction and denial of SARSCoV2. If you’re not…
👏👏👏 It’s about time. Now if we can just get seronegative disease and #NeuroSjogrens guidelines updated too. So thankful for all the #GoodDoctors working on this. #Sjogrens #Care4Complex
🔥 Wipe "Sjogren's Syndrome" and "Secondary Sjogren's" from our vocabulary! It is #Sjogrens disease and "Associated Sjogren's" as a disease standing as tall as #SLE #lupus #rheumatoid arthritis #myositis #scleroderma! This article is history in the making nature.com/articles/s4158……
If you think Sjogrens is just dryness then u might mistakenly tell pts all they need is lozenges & water. General/Pulm Clinical Practice Guidelines r available on Sjogrens Advocate wc is the best resource for Sjogrens info imo. We can thank @SarahSchaferMD for this. #MedTwitter
Great article, which reminds us that while long covid is unique in many ways, it’s still one in a long line of post viral illnesses. I personally have long enterovirus (Calgary, 1988 strain), plus a half dozen other respiratory and GI viruses I never fully bounced back from, plus…
Compelling call to learn from the past and avoid repeating the same mistakes with devastating consequences. thinkglobalhealth.org/article/long-f…
Brilliant brilliant piece on post-viral illness. "Time and again, society has failed to reckon with these conditions, relegating their sufferers to the fringes of medical understanding and societal concern." Link 👇
For months MDs dismissed her pain as constipation, then found she had a perforated bowel and stage 4 colon cancer at 27. ‘We don’t know what’s driving this. It never used to happen in this age group, now a very significant rise in 20, 30 & 40 year olds are getting colon cancer.’
Today at St Paul’s for ENT appt. Not a mask in sight. Me in N99. Small exam rm. 2 residents, no masks, no hepa. Ask them to put on masks and say I’m surprised they aren’t wearing them as they are going to be close to my face. Shocked expressions, go get blues, as does doc. FAIL
Wil Wheaton being an absolute legend again. I might have to steal this idea. #maskup