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.
It was only later when I was hospitalised I was able to switch to weekly infusions which I tolerate better but are still arduous to endure. (The province doesn’t like paying for weekly.) My doctors did not say anything about the amount of meds I was having to take being unsafe.
6 months after Covid, I started having bizarre burning/flushing episodes, with extreme burning concentrated in my lips, nose, and stomach. I begged for help for months - it was terrifying and seemed linked to the antihistamines but I don’t know if the Covid played a part.
It eventually got so bad I couldn’t eat, I went to ER multiple times to be sent home starving and still on fire inside, until my neurologist pulled some strings and got me admitted at Lions Gate summer 2021. The six days I spent there were some of the most terrifying of my life.
The stories coming out on the news then were barely the tip of the iceberg, it was straight out of a nightmare or horror movie. I spent almost the entire time in a gurney in the ER waiting room, the doctor doing absolutely nothing, while being starved and bombarded with meds.
I told them over and over the drugs were making me feel worse, I became hypoglycaemic and lost consciousness, thankfully the brief time I was in a unit with better staffing, eventually I started vomiting foam uncontrollably and couldn’t walk… I came out weighing 75 lbs.
We asked for me to be discharged because we knew I would die there otherwise. We went home briefly but I was readmitted at Mt St Joseph within 24 hrs. My electrolytes were so bad it took 5 more days before I was stable enough to go home still burning, again treated as reflux.
They changed all my meds there, worsening my GI symptoms, I haven’t had a normal poop since. A few days before LGH the rheumatologist who’d taken me on put me on a high dose of prednisone after misdiagnosing the burning as being from the lupus I’d finally tested positive for.
I’d never been on prednisone before, and by the time I got home it was making me delirious. I wasn’t warned about its risks + didn’t realise until nearly a year later that was the start of severe neurotoxicity. (I’m not sure if it was the dosage or if I have a hypersensitivity.)
Within a matter of a few weeks, I started dropping things, developed a tremor, walked like I had Parkinson’s, started dribbling urine, and the burning spread so my whole body felt on fire and like I was being electrocuted like when you touch a cow fence…
I was aware and could communicate but could barely stay awake and felt like I’d been drugged. I went to the hospital multiple times + was sent home with no answers, told to stay ON the prednisone + taper off the other meds I had been put on, while waiting for an MRI.
That MRI didn’t come until December when I had finally been admitted to VGH (after another traumatic ordeal in the ER) because after months of this and developing a horrible case of shingles the week after my first Rituximab infusion, I could no longer eat again.
They kept me two weeks, I failed an NG tube (feeding tube through the nose, also majorly traumatic), was on TPN for a few days, and then the GI doctor the second week who only mocked me and screamed about not wanting me on his floor, sent me home - completely undiagnosed.
I do not know how @brunodbo kept me alive those months. I was in another dimension, terrified, locked into this agony with less and less care from my specialists who did not know what to do and mostly absolutely DGAF. The prescribing doctor kept saying it could be the lupus…
But it turned out it was the completely unnecessary prednisone frying the crap out of my brain. I was kept on the high dose for 6 months before starting to taper when I was sent home NYE 2021. As I tapered down last spring, it started to become clear it was the cause all along.
I was locked into that state for almost a year. The damage was severe. I have significant neurological + cognitive deficits, am extremely debilitated from the immobility + muscle atrophy. My bones are dust. My hair fell out. My teeth are damaged, I’m too sick to get them fixed.
My nails are curled and painfully dig into my fingers. My skin is like leather. I still feel like I’m on fire mostly in my face and mouth, but also when I’m scratched or injured. I went from a sickly but coping and mobile within the house 40 year old to a debilitated 90 year old.
I was encouraged by the rheumatologist to come off the prednisone too fast and have severe arthritis I didn’t before, and the second round of Rituximab in June not only required prednisone which set me back months, but sparked severe damage to my GI system.
I’ve been begging for help ever since, but refused admission to hospital for a work up. I’m terrified to go anyway after how violent and damaging they’ve been. Finally an internist is trying to help me but I’m so far gone…I’m trying to wait for an outpatient colonoscopy.
I fear I’m too weak to survive the prep nevermind the procedure. The burning pain is totally uncontrolled. I can barely walk. I’m in agony with bowel pain, nausea, diarrhea every day. Palliative care wouldn’t help me. My GP is trying but I’m too complex for this system.
When the Rituximab made me so much sicker I applied for MAID and would have gone through with it, but was given the 90 day waiting period. It was unimaginable torture and now I’m still here, of sounder mind but suffering, maybe not unhelpable but unable to get the help I need.
The hospitals are not safe, I’m immune suppressed and had a bad vaccine reaction so haven’t had a booster. I’m terrified, in agony every day, don’t tolerate meds well. Every day I come close to calling the MAID doctor. I want to live but not like this and I don’t know what to do.
You’d think when doctors deeply harm you, permanently damage you, traumatise you… that they would feel bad and actually rally and try and save your life. But nope - too complex and you’re not a human anymore. They leave you for dead.
And because apparently even fellow disableds are happy to defame me on my death bed, I just used my entire energy for the day to defend myself against a bully who could have just gracefully let this pass. But no, cause apparently my life is a fucking joke even to them.
https://twitter.com/arianek/status/1624500368683200512
Part 4, I guess: hear about psych consults, my poop, and the sociopathic behaviour of too many doctors. I’m sure my speaking out will backfire but I have so little left to lose.
https://twitter.com/arianek/status/1624829627058491392
Part 5: an update on last week, plus bonus photos of me if you want to see who I am/was…
https://twitter.com/arianek/status/1624845614151532544
Part 6: The glimmers of hope are already fading. In 2023, in Vancouver, Canada, somehow you will be left for dead if you’re too “complex” or an “undesirable” - even if that is because of medical injury. Those who could help won’t, and the few who want to can’t.
https://twitter.com/arianek/status/1625203061231878144
Part 6.5? Oh yeah don’t forget I’ve felt like I’m on fire for 2.5 years and can’t get help with that either. That’s why I was (wrongly and unnecessarily) given the prednisone that destroyed me in the first place.
https://twitter.com/arianek/status/1625681481065697282
Part 7: FUCKING FINALLY (it probably won’t save me but maybe at least I’ll get to know what’s wrong?)
https://twitter.com/arianek/status/1625977325467897856
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