arianek.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

If I had MS or Myasthenia Gravis, I could access other treatment options. But since my disease is under researched, under diagnosed, and under treated, I was badly medically injured and neglected, and am now being condemned to an early death. #NeuroSjogrens #Dysautonomia #Care4ComplexCanada

submitted 50 minutes ago • 0 comments

This bowel/ovary pain + neck/head pain are just becoming unbearable. I can’t keep living like this. I can’t get care in Vancouver so I’d have to travel to the US again, + I’m so sick and so exhausted, I just don’t know if I have another trip in me. This system is so cruel. #MAID

submitted 1 hour ago • 0 comments

I don’t know how much longer I can keep doing this. I spend all my time and energy trying to get help that never comes. The medical gaslighting. The denials of care. The harm and abuse. On top of the sickness, the medical injuries, the pain, the infection. I’m so tired. #MAID #Care4ComplexCanada

submitted 4 hours ago • 0 comments

I am normally a champion sleeper, but the level of stress I’m under due to the terror of my medical care predicament, on top of this ovary/bowel situation (severe nausea and pain every morning), is causing me to wake up super early, depriving me of sleep. #Care4ComplexBC

submitted 4 hours ago • 1 comment

Oh my god, this bowel/ovary/groin pain is horrible again. I think I had another cyst burst in the same spot two days ago and it’s still killing me. My groin and upper leg is so painful, I can barely touch it without yelping and getting bowel cramps/spasms. What can I do??

submitted 20 hours ago • 2 comments

I can't believe I'm back here. DIYing my own medical care, searching for supplements online, debating finding a new Functional Med Dr just to try and help with symptom mgmt that the medical system won't provide me, so I can try and have some quality of life as long as I can. This is ridiculous.

submitted 22 hours ago • 0 comments

It’s so tempting to give up when Canadian doctors keep slamming the door in my face. I could be helped - it’s documented by 4 US experts in my disease - but they refuse to try. What was the point in going through all of this only to be left to die again? #MAID #Care4Complex

submitted 1 day ago • 0 comments

So… I’m (almost literally) at the end of my rope with the system here refusing care to me - and SO MANY other complex patients. I don’t have much left to lose. If I go to media, who best? Avis Favaro? I actually wish most that I could write my own article in my own words. #MAID

submitted 1 day ago • 1 comment

One med exists in the US - it’s $200 USD per day for 2-4 weeks. So that’s $2800-5600 USD. Which with the crappy Canadian dollar would be like $5000-8000 CAD. We’ve already spent $30,000 in the last 14 months getting US care to try to save my life. #Care4ComplexCanada

submitted 1 day ago • 0 comments

Re: the Liberal leadership race, I’ll say this: I wish I could take either Chrystia Freeland (or Karina Gould) to my doctors appointments with me. They’re smart and tough, and don’t take any crap. Of course because they’re women, they still won’t win.

submitted 1 day ago • 0 comments

Riddle me this: why did the US specialists I saw have literally a dozen or more treatment options I could try, and here I am not even allowed to see a new doctor? This is an excerpt from the Stanford consult. For the record. Read the last sentence. How is this allowed? #Care4ComplexCanada

submitted 1 day ago • 0 comments

Lololol FML. The two antivirals that sometimes work for chronic Norovirus aren’t available in Canada. (And apparently there’s no way I can access oral immunoglobulins here either, which are the only alternative.) My life is such a joke. I’m just not meant to be here anymore.

submitted 1 day ago • 3 comments

Maybe the worst part of all of this: I cannot get the medical care I need to literally save my life, but I also can’t access palliative care, pain management, or anything else that would improve my quality of life as I decline. This is such absolute cruelty. #Care4Complex #MAID

submitted 1 day ago • 0 comments

One of the things killing complex patients the most quickly, is how 99.99% of doctors and the medical system and its regulators believe and defend their colleagues over patients. #Care4Complex

submitted 1 day ago • 0 comments

FML. The neurologist in Hamilton already wrote back and refused to take me on. This is really the end of the road for me, isnt it. This is so bloody unfair. I'm literally livetweeting the medical system killing me and nobody gives a fuck.

submitted 1 day ago • 3 comments

Long shot, but if anyone knows of any decent rental housing in Hamilton, ON area please let me know. Must be a house or unit with direct entry and NO shared air with other units, as I’m high risk for infections and extremely allergic to cats and fragrances. Thx!

submitted 2 days ago • 0 comments

[CW: sucde] I just found out a dear friend of mine who I’ve known for 15+ years just killed herself. A #Care4Complex patient who didn’t get the right care, and was left in severe pain and sickness, in a state that didn’t have MAID. She was one of the best people I know. 💔

submitted 2 days ago • 3 comments

I don’t know why (except maybe ovulating on the side of this residual ovarian cyst burst where I still have constant pain/pressure), but my bowel is not okay. I’m so nauseous + having more 💩 attacks. I feel like I’m dying. It’s going to be a miracle if I make it to Ontario.

submitted 2 days ago • 1 comment

Waking up to my new reality: confirmation from my best doctor that I will never get proper care here. The messed up part is it’s not because I’m unhelpable, but rather because no doctors in Vancouver will take me since my previous specialists and the hospitals nearly killed me.

submitted 3 days ago • 1 comment

One of the biggest things the underfunded, understaffed, broken healthcare system has stolen from both doctors + patients is time. For a doctor to be able to provide quality care (+ not at the cost of personal sacrifice), time is ESSENTIAL. Especially for complex patients. #Care4ComplexCanada

submitted 3 days ago • 1 comment

Source: NataliaHodgins on Twitter #chronicillness #chronicallyill #autoimmune

submitted 3 days ago • 9 comments

Just sitting here wondering WTF happened to my life. 🙃 I have some very hard decisions to make + don’t know how to begin to make them. Complex patients deserve so much better than this. We could have better if there was the will. #Care4ComplexCanada #Care4ComplexBC #Care4Complex

submitted 3 days ago • 2 comments

So, apparently Elon Musk has Canadian citizenship?! Don’t fret, @charlieangus104.bsky.social has set up a federal petition to have it revoked. Sign! Share! www.ourcommons.ca/petitions/en...

submitted 4 days ago • 1 comment

If you want to share your concerns with CBC about the “51st state” Cross-country Eff-up, I’m told the emails to use are [email protected] and [email protected] for the ombudsperson and editor in chief respectively

submitted 4 days ago • 39 comments

It’s wild how you can sue for hundreds of thousands, if not millions, for things like being in a plane crash, or being in an accident or attacked on the street - but when a doctor or hospital malpractices you and destroys your body and life, you can’t do shit. #PatientSafety

submitted 4 days ago • 0 comments

We’re rewatching Star Trek: Picard. So many things in it are metaphors of what I’ve been through, and I feel so sad + angry because I wish we had their technology to fix my broken body. I love being alive + wanted nothing more than to live a long, health(ier) life with Bruno.🖖

submitted 4 days ago • 1 comment

I’ll never understand how the people with the least capacity and resources can show up the most for those in dire need of support, while those with the most capacity and resources just look away, maybe show some pity, but act like there’s nothing they can do to help. #vanpoli

submitted 4 days ago • 1 comment

I just don’t get it… why nobody will really fight for me - for us - when we are dying. #Care4ComplexCanada #Care4ComplexBC #Care4Complex

submitted 5 days ago • 0 comments