Does anyone know a doctor anywhere in North America who could assess someone with severe GI damage from multiple infections, worsened by Rituximab/prolonged oral prednisone, malnutrition (including severe Thiamine deficiency), and autoimmune neuropathy?

I was sent this story and have to share it - the fact that not only decades of adults and children have been neglected with post viral and complex diseases in Canada, but that this is STILL how we are being treated should be criminal. THIS NEEDS TO STOP. #Care4ComplexCanada #LongCovid

I can’t believe I am asking this for a THIRD year in a row, but does anyone know an ethical HVAC contractor (preferably independent) in Vancouver? The two big companies (Milani and Ashton) have screwed us over and over, and after spending many thousands of dollars...

Paging @catherinewinters.com or other Vancouverites, is your hayfever horrifying rn? I want to rip my itchy throat out of my own mouth. It’s the worst I’ve ever had it and almost nothing is helping! (Yes I logged onto Bsky specifically for this since you didn’t seem to be on X anymore!) 😬

Do you ever wonder if the government is intentionally keeping us distracted with bickering about masking, so that they can continue to avoid having to do what we needed this whole time and invest in air filtration systems in all public buildings? 👀 #CovidIsAirborne

If HCWs feel “attacked” when we call them out for not masking, perhaps that’s projection because deep down they know they should be wearing a mask. We’re fighting for our literal lives. Fighting to avoid further disability and loss of baseline. Your first duty is to your patient. Wear the mask.

at some point these public health ghouls who let covid rip are either going to have to reckon with the consequences of mass immune damage, or escape/disappear somehow

🎯

What happens when you ask the government for data you have a legitimate right to obtain but that would provide evidence that it was wasting significant taxpayer dollars instead of providing needed health care? This happens.

The terrible exchange rate is making paying for US medical consults + testing even less feasible. The least the BC government could do, if they're not going to give me healthcare, is give us back our taxes so I can get it in the states. #BCHealthcareCrisis #Care4ComplexCanada

The lengths that I've gone to, trying to get medical care... No average person has the financial, social, educational, cognitive capital to do anything like this while this sick. I am the epitome of privilege aside from not being male. If I can't get care, who can? #Care4Complex

How do I get people, especially people in power, to care about me + the thousands of others like me, WITHOUT subjecting myself to more retaliation by vindictive doctors, blacklisting me from care + tarnishing my reputation as a patient? I’m so sick + exhausted. I want to give up.

Do this many healthcare workers really not understand or care that they’re hurting patients with this ridiculous power trip ego game about taking infection control precautions? I keep waiting for good sense to return to healthcare, but it’s just never going to happen is it. 🫠

I’ve been trying to find a Covid safe endodontist in Vancouver to do my root canal for over a year, and these are the replies I get. WTF am I supposed to do? My tooth constantly hurts at this point. I hate Bonnie Henry so much. (Yes I’m going to ask if I can supply them.) FML.

Does anyone know if you can make Bsky do notifications for incoming DMs on iPhone? I can’t seem to find the settings for it. I’m not on here much so would be good to know if anyone’s messaging me.

I wish I could somehow archive my entire post history on here and X, without completely losing it. I don't feel comfortable publicly posting about my life or medical stuff anymore, between lack of real blocking on X + the risk of some right wing news outlet misusing my posts about MAID. :(

Posting in case I’m missing it somehow, but is there really no way to listen to the entirety of @cbcstephenquinn.bsky.social’s The Early Edition? CBC Listen app has the segments, but it’s super annoying to have to play each few minute piece individually, when I want to hear the entire show.

While I may keep popping in here for news or to skim updates from those who’ve left X, I am inclined to stop posting any personal updates here. There is virtually no engagement and the bits I do get are really bizarre and inappropriate or even hostile. Not worth it. Find me back on X or Insta. 🖖

As a physician, the first time I heard of adenomyosis was when my doctor was concerned I might have it. Not in medical school, not in residency—not until it might affect me. That’s how little we care about women’s health.

I don’t know what to do anymore. I don’t know how to keep doing this. I have tried so hard and I get nowhere. No help. Just more gaslighting and prejudice and harm and trauma. I want nothing more than to get better but I can’t do it like this, with no serious medical support.

Awake at 2:30am due to pain and medical PTSD/general state of terror due to doctors and reading this. *chefs kiss* Fuck the BC medical system so much.

It’s pretty ironic that I’m being pushed to do a medical procedure I don’t want, but can’t get any of the care I’ve been begging for, for YEARS. This system is so paternalistic and inhumane, and strips your autonomy from you more, the sicker you get and the more they harm you.

Ok so on further consideration, there is no effing way I’m subjecting myself to this. Has anyone local had a colposcopy done with sedation, or at very least in a trauma informed, non violent manner in a safe environment? We shouldn’t have to subject ourselves to this shit.

Medical files can be so dangerous, so many of us have medical files filled with garbage write by doctors who had no idea of what our situation are and we can’t do anything about it…

One of the most frustrating consequences of my medical catastrophe is my file is so full of garbage that local doctors don’t even believe I have a real diagnosis. And I have no way to correct it or clear my name + reputation. #Care4Complex #PatientHarm #MedicalGaslightingKills

Wow, today’s going amazing. Yet another GI doctor in Seattle rejected me and I can’t get back into Stanford for even a consult till August (and then god knows how long to book testing). I am 100% gonna be dead before I even complete the testing, nevermind access treatment.

FML. As if I needed one more thing the repeat HPV swab came back positive. :( I'm being auto-referred to some colposcopy clinic at SPH, which I've been forewarned is basically guaranteed to be a highly traumatic experience. Why would I consent to that? Why is this "heatlhcare"??

Seriously tho wtf is up with people on here? I can barely post anything without some kind of fucking weird, holier than thou, passive aggressive comments. Often from these semi anonymous accounts. People are creeps on here, it’s way worse than X where at least the trolls are just boring trolls.

I'm so torn over whether to keep seeing the US doctors I've been consulting with. I feel like I'm wasting their time (and our money) when I've had no success implementing their recommendations at home. And my body is so damaged that it's questionable what future I could have. #Care4ComplexCanada

You know, in a functioning healthcare system, I would have responsible, ethical doctors leading my care, and wouldn’t be drowning in (and slowly dying from) treatable ailments I have zero care for, forced to humiliate myself begging for help on the internet. #BCHealthcareCrisis

Does anyone know of any medical professional anywhere in the world who’d speak to me seriously about Drug Induced Parkinsonism, and neurotoxicity? Or generally about the damage from being overdosed with prednisone? I just want to understand what it did to me. #IatrogenicIllness

164 members in the #Care4ComplexCanada FB group. Severely ill women with EDS, Dysautonomia, + Neuro Sjogren’s, suffering serious medical neglect. And virtually none of them willing to speak out publicly, due to fear of retribution from medical providers. I cannot do this alone.

I wish someone cared about the thousands of Canadian women with complex illnesses being left to rot and do #MAID, because we’re denied medical care in Canada. That would be a real story, instead of constantly centring MAID providers and doctors who already hold all the power. #Care4ComplexCanada

I don’t know if I’m going to keep posting on here. All I’ve done for years is advocacy - fighting for medical care and fighting for my life. But these local fuckwit doctors are committed to ending me. I should really be long dead already. There’s just no point anymore. I’m done.

No BCian should be left to decide between fleeing the province (or country) while seriously ill + doing #MAID. This province + its doctors are failing complex disease patients. There is no serious care for Dysautonomia or EDS. Women are being mistreated + dying. #Care4ComplexBC

I can’t sleep. The “harmless” Schirmer’s test scratched my eye (again) and it hurts - even more because I keep crying. Today broke me in a new way, just when I didn’t think I could be broken more. I think I’m going to stop seeking medical care. I can’t take anymore of this. #MAID

Lololol FML. As expected, the Sjogren’s clinic doctor still says I don’t have Sjogren’s and that the US specialists are wrong. Treatment? No effing way. Literal dead ends at every turn, no skin off their backs. #Care4ComplexCanada

Funny how there are so many lawyers out there who will defend doctors, but almost none who will defend patients. It’s almost like the system is stacked in favour of those already in power. 👀 #PatientSafety #PatientHarm #Care4Complex

So, 15 months off IVIG, my esophagus and throat are becoming paralysed again. Voice hoarseness/weakness, able to speak much less, I can feel the paralysis discomfort on the left side is back. Food is getting stuck in my esophagus again. I told them this would happen. Now what?

Quite the travesty that @nytimes.com spent so long normalizing mass Covid infections & platforming folks like Emily Oster, and now they publish this...

It was known (and publicized) in 2020-21 that COVID causes organ damage (lungs, brain, heart, etc.). But that was shushed up in 2022 with the Biden administration’s rush return to “normal” for the sake of the economy. Now 5 years in come the “Emerging evidence is beginning to show…” articles.

Now, "it’s the masked passenger who is suspect, nobody notices the scuffed distancing lines and trust in vaccines has taken a tumble. A different narrative has invaded the conversation: it wasn’t the virus that ruined our lives, but the response." 🧵 1/5 www.theguardian.com/commentisfre...

I wonder if Canada will ever be led by someone who’s not a white man (or a brief, unelected, white woman).

Can a doctor out there explain something? (Feel free to DM.) Why has it become so uncommon in Canada to treat rarer disease with off label meds/trials/special access? I know they’re expensive, but I’m relapsing badly and treatments exist that could help me. #Care4ComplexCanada

A friend included this anti-acknowledgement section on her PhD thesis. She also added the proposition: “Systematic bullying and undermining of girls and women in STEM starts early on and is the reason why they do not stay in science and related fields.” Absurd we still need to go through this 🧪👩‍🔬

Covid is a gender equity issue - women are at a 31-44% increased risk of developing long Covid, with women over 40 at the highest risk, but how many of us are labeled as "anxious" for masking etc?

Old school digital rights management.

The shit I have taken all day because of saying it’s hard for some disabled people to switch social media platforms and we need to have empathy for that, is just unbelievable. I’ve blocked probably ten people today. Every one attacking me, telling me to leave Canada if I don’t want X banned.