Suddenly becoming the face of #MAID to this level is honeslty just kind of part of this never ending nightmare. I’m so tempted to lock my account. But until I get a GI doctor or find someone that can really help me, unless I really can’t take one more day, I have to keep going.
I have so much more to say about healthcare and illness and disability and #MAID, but right now, I just need to get through this. Will post more if I can, but if I disappear it’s (hopefully) to rest and survive the hospital and testing, and whatever is next.
If there is a compassionate GI doctor who can really try and help in Vancouver, please DM me or my spouse @brunodbo. I know doctors are not gods but I need a hero right now, someone with a can-do attitude. And pain mgmt/palliative asap to survive in the meantime.
And thanks again for the support and helping remind me I actually DO deserve better help. It has boosted my spirits immensely. While I’ve had some wild replies especially from a certain contingent, I appreciate all kind and supportive ones.
People can use their beliefs for good or evil across a fair political and religious spectrum (though it has its limits). I’m VERY progressive but often think if we worked better together on important things like improved healthcare, maybe they could be a lot better for everyone.

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More from @arianek

Feb 20
What I would give to have my old pre-prednisone brain fully back. It’s slowly coming along, but I still feel so dizzy and disoriented and have trouble concentrating. I really miss my old brain. I’m so high functioning/sharp normally that even diminished some doctors…
Didn’t believe how messed up I was. I was probably at best 40% of my normal capacity, at worst 10% for so long. That’s why it took so long to get on here and write about this. Maybe getting to around 70% now? I hate it. I miss reading, and just being able to rest and feel normal.
I don’t know if people with strokes or other brain injuries feel like this too, or what exactly is going on. My vision is still blurry (optometrist couldn’t see why, eventually will go to ophthalmologist if I get better enough). Neurologist is no help.
Read 12 tweets
Feb 19
Quick check in - even with comments limited my #IAmTheFaceOfMaid post has absolutely taken on a life of its own. Not in a good way. And yet… 1.7M views doesn’t get me a GI doctor and the medical care I need to survive this.
I’ve been so tempted to lock down my account but…desperate times. I KNOW there are doctors in #Vancouver who could help me if they wanted to. But my referrals, even if I can get them, always get rejected. I need someone WILLING as well as able. @DoctorsOfBC
I don’t want to have to go to the media for this, I never wanted this kind of attention nevermind when I’m in this kind of state (I’m not a super vain person but I look as horrendous as I feel and barely recognise myself anymore). But they are more interested than anyone medical.
Read 20 tweets
Feb 8
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.
Spring 2020 I had Covid and was in year 3 of chronic aseptic meningitis from my biweekly IVIG infusions, for which I was taking what I know now to be toxic doses of antihistamines and a lot of hydrocortisone (a steroid) to barely tolerate it, the only treatment available to me…
For my autoimmune small fibre neuropathy (which was later confirmed to be a complication of Sjogren’s + Lupus), which caused severe autonomic neuropathy that was shutting down my digestive system, making me faint, have bladder issues, severe weakness, and many other problems.
Read 33 tweets

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