10 years ago I moved across the country for a job opportunity in Calgary. It was a big risk - I didn’t know anyone outside of some folks from this app whom I had never met in person.

I had a medical emergency a few weeks after moving - and one of those people saved my life 🧵/1 His name was Tory and at the time I knew him only by his avatar and handle. But when I landed in Calgary he reached out via DM and offered me help and advice for getting to know my new city. /2

Toronto - ground zero for SARS1 (where patients are still suffering long term impacts of their infection) and the city in Canada where the sickest patients go…quietly dropped mask mandates in all hospitals. This will kill & disable people and we MUST push back 🧵/1 First off - it’s been a rough few weeks for disabled and chronically ill patients in Canada. We continue to see medically assisted death embraced & expanded, the financial assistance we were promised turned out to be inadequate & inaccessible and no one seems to care. /2

Disabled people are not ok. The pandemic has turned society against us (even more than before).

People were quietly ableist before. Now they’re openly hateful.

It was hard to access healthcare before. Now it’s impossible.

It was lonely before. Now it’s a pit of despair /1 🧵 It’s been an incredibly difficult 4 years for disabled and vulnerable individuals. We’ve had to endure terror of knowing we will be triaged out of medical care if system is overwhelmed, have DNRs forced on us & are witnessing aggressive expansion of medically assisted death /2

Many people who are financially comfortable (or even well off) hesitate to donate to mutual aid because they can’t confirm legitimacy. This leaves struggling disabled patients desperately trying to support one another. Here’s what my Mom taught me about helping others 🧵/1

https://twitter.com/dizzydizzydazed/status/1783993541775015960

She always said it was more important to help others whenever you could - than spend your time worrying about whether someone was “legitimate”. That if you won’t miss the money it’s better to give to someone and be wrong than not to give at all. /2

If you’re looking for a dairy free, anti-inflammatory and nutrient dense pasta sauce … I’ve got you covered with my “green-fredo”. Easy to make, customizable & forgiving…. It’s a great option for people giving up dairy AND a clever way to get kiddos to eat their greens. 🧵/1 I usually make this sauce with broccoli because it blends beautifully & is easy to find and high in essential nutrients. You could easily swap for just about any green vegetable - spinach, chard, collard or kale would all work well. Don’t forget your green herbs! /2

Medical gaslighting is a very real and severe issue that doesn’t get talked about enough. It can lead to lifelong consequences (and even death) for patients. Women & marginalized individuals are disproportionately impacted. It’s happened to me many times - with dire effects. 🧵/1 My first experience was when I was 9 and had painful urination. Doctors repeatedly said it couldn’t be a UTI given my age. It wasn’t until I was peeing blood & screaming at the top of my lungs that it was finally diagnosed. I later found out EDS makes you prone to UTIs /2

I’ve got a family member who hasn’t seen me in 5 years because they “don’t do sick”. Suddenly they wanted to visit. I’m housebound - which limits options. When topic of masking came up - I was rudely shut down. They demanded “normal”. 🧵 on the importance of setting boundaries /1 I became disabled before the Covid pandemic. I’ve got multiple severe health conditions that leave me stuck in bed (and horizontal) the vast majority of the time. As a result I can’t “hide” the fact that I’m sick. /2

Why do we undervalue the lives of disabled people so much? Why do we expect them to survive on a disability benefit that keeps them below poverty line - especially when being chronically ill drives expenses up? I spoke to a friend about this & was shocked by the response 🧵/1 We were discussing CERB - the Canadian emergency payment people received if they were laid off due to Covid shutdowns. I mentioned it felt unreasonable that it paid almost double what people on disability receive. /2

The MAiD discussions this week are taking a toll on disabled people. Our view of medically assisted death isn’t as rosy as others.

Disabled & chronically ill patients cost the system a LOT of money. We’re very sick but could take decades to die. A 🧵 on coercion & euthanasia /1 Look at the headline in image above … blatantly talking about how much money MAiD can save the healthcare system (and this was before covid). Yet we still see people talking about how compassionate it is. Can it be compassionate? I’m sure it can be. Is it always? No. /2

When my mom was dying of pancreatic cancer (after being misdiagnosed as “anxious”) I remember us talking about how at least when I got to be her age… things would be better.

20 years later and things haven’t gotten better - and the pandemic has arguably made them worse. A 🧵/1 When my mom was sick we both genuinely believed that healthcare would improve considerably before I had to face serious medical challenges. It was one of the small comforts we had in a very dark time. /2

When I was a teenager - my mom’s pancreatic cancer was misdiagnosed as “anxiety.” The experience shaped my view of the healthcare system & the damage that bias, gaslighting and psychologizing illnesses can cause. A 🧵/1 Pancreatic cancer is among the most deadly cancers - and is almost always diagnosed too late. My mom had led a very healthy life with few medical setbacks until she suddenly presented with intense itching, bruising and some back pain./2

If you’re interested in going dairy free - don’t think you have to give up sweets! You can make great treats that can be good for your health! These millionaire squares didn’t make me tachycardic like traditional desserts due to being high in protein & fibre & low glycemic 🧵 /1 This recipe is from the @thehappypear - I adapted it to include extra inflammation lowering ingredients like chaga & reishi mushrooms. The best thing about it is it’s “no bake” so it’s quick & easy and very forgiving if you mess up on quantities. First step - almond flour! /2

I’ve seen a number of people debating giving up dairy as concerns over avian flu grow. I gave it up nearly 20 years ago in an attempt to help with inflammation - and when I was healthier I experimented with making my own nut cheeses & milks. Some recipes & inspiration below 👇🏼 🧵 The photo above is banana “nice cream”… an excellent & healthy substitute for ice cream. Freeze ripe bananas and place them in a high speed blender with sweetener of choice (I used dates), other fruit, chocolate, cinnamon… the possibilities are endless & the texture on point /2

The death of Prof Amit Patel in the UK highlights a frightening problem in medicine. One that disabled and marginalized individuals have been screaming about for years. Doctors don’t always listen to the patient - sometimes with catastrophic consequences. 🧵 /1 Prof Patel had an incredibly rare condition - and he and his wife were both doctors. They understood how to manage his care and tried to direct hospital staff away from procedures or treatments that could prove dangerous or fatal. /2

“Congrats - you’re old! Maybe this year you will try and be normal again.”

This was a birthday message I received from a relative. They’re referring to my disabilities and to my Covid caution. They consider both “abnormal”.

🧵 on compassion, normalcy & chronic illness. /1 I’m sick & tired of the insinuation that being disabled means we’re abnormal. That we simply need to “try harder” and we will no longer be sick - or that our illnesses are a personal failing. Temporarily abled people always seem to think it’s OUR fault we are sick. /2

Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?

“Maybe your legs are just getting fat.”

Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care /1 This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong. /2

As a disabled person - whenever I express concerns about eugenics, triage medicine, euthanasia or DNRs - these are the types of responses I receive. Covid mitigations were sold as a means of protecting the vulnerable … and now people seem to loathe us even more than before 🧵/1 People who are temporarily abled see triage medicine and eugenics as “common sense” because it’s not going to impact them. They don’t have to live with the nearly constant fear of going to the hospital & being “triaged out” of care. /2

Its been a rough week for many - so I want to share a positive story of kindness, accommodation and excellent customer service.

I rely on Medi-honey to cope with recurrent infections. I’m allergic to virtually ALL antibiotic creams. It’s been a lifesaver. /1 🧵 I started having problems finding it a few months ago. The price skyrocketed & it became scarce. Finally found some from a medical supply store but they ran out before it could ship. Scoured other websites & ordered three tubes a few days ago /2

People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds? 🧵/1 I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them? /2

Given the DoorDash discourse started because of someone with MCAS requiring specific food - let’s talk about MCAS. It’s a BEAST of a syndrome that can drastically alter quality of life - it is NOT just a histamine issue. It’s one of the hardest things I have to manage 🧵/1 MCAS stands for Mast Cell Activation Syndrome. Your mast cells are an immune cell present all over the body & in the bone marrow. They contain histamine - but they also contain heparin, cytokines, prostaglandin & more. When they misbehave it wreaks havoc on the body. /2

A right leaning friend told me that given all the lies told at beginning of Covid pandemic he didn’t feel anyone would reconsider mitigations unless “bodies start piling up”. I explained that it’s not death toll in acute phase that is the biggest concern - it’s disability. 🧵 /1 This person genuinely didn’t understand that a virus could be a significant threat to the population in the absence of “bodies piling up”. I tried to educate on sudden deaths after recovering from Covid - that was met with “no way to prove it was Covid.” /2