Care4Complex

Unfortunately Mayo clinic is actually very hard to get into, and I've heard really mixed experiences there for anything related to post viral and autonomic conditions. Private practice usually goes better than big medical centres with stuff like this.

Bonus if they do virtual consults and are on the west coast, but I am desperate enough to try and travel anywhere in North America. I cannot go on like this.

My bowel/GI attacks, pain, diarrhea have dramatically worsened in the last six weeks or so. I am having unbearable pain, multiple attacks a week, even in the middle of the night. I still have no prospect of accessing GI care in Vancouver, nor have I been able to see infectious disease.

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 am so exhausted and going to have a breakdown from not being able to sleep and the repair men do nothing but gaslight us, on top of being incredibly sick and having this botched root canal to deal with. I JUST WANT TO BE ABLE TO SLEEP. HELPPPPPPP. #Vancouver #HVAC

We have two other units and we have never had an issue with them, we KNOW how it’s supposed to sound and function and there is 100% something wrong (just like before when they gaslit us for an entire summer when there was actually a coolant leak and no coolant left in the machine).

We still don’t have proper functioning AC in the bedroom where I spend 75% of my time trapped in. All they do is gaslight us over this clearly malfunctioning unit. Bruno tried calling the manufacturer and same gaslighting BS.

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...

😳 well that’s some freaky shit, but what can’t Covid do? Tiny silver lining getting a hayfever reprieve.

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!) 😬

Oddly it seems to have settled down some since the US election. I get trolled more here and on Threads whenever I try to engage! I will try and pop in a bit more though, the community really got splintered.

Hi! Miss you over on X. I almost never pop my head in here anymore because I was getting such low engagement from people I actually know and like, and lots of weird abusive comments. 🙃

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

💕 So out of control. They’re supposed to be helping people not abusing them and killing them. I will never understand. I wish I’d had the wherewithal to video tape some of their behaviour, people would not believe it.

Like, ALL we want is decent medical care. That’s it. Why does that get us treated like the scum of the earth??? This is discrimination pure + simple. The medical system and people in it HATE complex illness patients + refuse us care. Tell me how that’s not blatant discrimination?

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.

It’s so scary because it’s just one step away from punishing those who get sick, and I can see that’s next in their evil plan.

Not to mention you can absolutely do all that stuff right, and still end up sick as fuck like me. I did it all. That’s not how bodies and life work.

‪For posterity, I figured this out. No audio version but it’s televised, so if you have Rogers/Shaw you can set it to record the episodes and then play them back later in the day.‬

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. 🫠

Seriously it’s so negligent. Vancouver’s got Covid, flu, and measles circulating FFS. I feel like I’m trapped in a horror movie or something, it just never ends.

just because i can survive harsh conditions doesn't mean I should have to [a pic of a Tardigrades]

ps. It has to be an endodontist and not a regular dentist, due to my facial and dental neuropathy.