Ariane~I NEED A GI DOC IN YVR~K (she/her)
@arianek
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Co-founder @Textillia ! ✂️💕• SFU Geog • Public health/urban planning/web nerd • Sick AF #Sjogrens #Dysautonomia #IatrogenicIllness #IVIG / ♿️🌈🇦🇲🦆🐶🖖📚💌🌿
East Van (Vancouver, Canada)
Joined August 2012
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Pinned Tweet
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.
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I am the face of
#MAID
(assisted-death) in Canada.
As a 42 year old woman with a rare complication of lupus + iatrogenic injuries I will only cost the 'system'. I want to live but can’t get the care I need + have been approved for MAID.
#IamthefaceofMAID
#Iamthefaceofhumanity
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As horrible as my physical suffering has been + continues to be, the thing that hurts me the most is that I am constantly treated by doctors as if I am both stupid and a liar. I have a Masters degree. I’m knowledgeable about my illness. I’m an honest person. I don’t deserve it.
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A friend of mine said, re: a doctor saying she was too young for making a medical decision, "At what point do I get to be a full grown woman?? Like, I'm 47 YEARS OLD." and I felt that in my bones. I know I look young (from afar, the prednisone aged me badly) but I'm 42 FFS. ⬇️
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I just keep wondering how on Earth a doctor can help me, if they spend the entire appointment challenging me that I’m even having the symptoms I’m having, making me defend my experience over and over, instead of trying to understand what I’m feeling. They’re not the same thing.
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A doctor has just informed me that patients who claim to be the victims of medical abuse are the actual abusers. They only receive abuse because they’ve been even more abusive to the doctors, bringing it upon themselves, and then playing victim. I give up.
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I will never understand how people can complain so much about something so small as weaning a mask in public indoor spaces. To truly have no idea what actual suffering and life limiting illness is like. I would give anything for my biggest problem to be not wanting to mask.
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My mom (a retired microbiologist and public health researcher) just now re: Taylor Swift concerts causing Covid outbreaks: “Typhoid Taylor”. 😂🫠
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I know people have remarked on this before, but I'm always so pleasantly surprised by every single tradesperson's willingness to don an N95 to come into our house. They make it a non-issue. Yet it continues to baffle me, how it's basically the opposite in actual HEALTHCARE.
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So many invasive medical procedures I’ve had were like this. Zero warning of what was about to happen or proper consent while it was happening. Screaming and crying for them to stop, and them not stopping. This is why we patients (aka. sick, scared people) get medical PTSD.
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Why isn’t there a hospital made for complex illness patients? Where it’s quiet and they let you sleep, have food you can eat, aren’t abusive, actually know about your diseases… where you don’t have to be terrified of being harmed, and can get real help?
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I recently came across this photo of me from spring 2016. See, I used to be an “inspiring” sick/disabled person. I even made this dress myself. I’d just gotten my first mobility aid + was so excited to go out with it, since I was suffering bad orthostatic intolerance pre-IVIG. ⬇️
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This was me a year and a half ago right before my health was devastated by medical negligence and malpractice, in the form of a catastrophically damaging hospitalisation, misprescribed unnecessary high prolonged doses of prednisone, and a bad reaction to Rituximab infusions.
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I’ve been begging for care especially with my GI symptoms which are slowly killing me, my specialists have mostly abandoned me, and my medical decline is being attributed to “psychological distress” and my illness (which is absolute BS, it had improved on IVIG).
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I won’t be here much longer because I can’t even access palliative care and have been left in unbearable suffering. I can barely get up or leave the house anymore (which I must weekly to access IVIIG).
#MAID
is my only way out.
#MaidWithoutAid
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@DaliaHasanMD
💯 my mom (retired microbiologist) just gave a little impromptu education session on Covid/viruses and handed out some N95s at her volunteer group today. The other people were shocked and didn’t understand why public health wasn’t giving out this kind of info. Mostly retirees. 😫
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See my pinned post for more, and if you know a compassionate GI or pain management doctor in Vancouver who could help me very urgently, please let me know. I have been on the verge of calling to go through with MAID for months and get sicker every day. I can’t keep doing this.
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ps. People keep retweeting this saying I’m “poor” (financially) and that’s why this is happening. While that is true for many, I’m very lucky not to be poor. We are ok for now thanks to family support. Money can’t buy care in Canada. People who are also poor don’t stand a chance.
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You know, I can forgive doctors for not knowing things. But what I can’t forgive so easily is resistance or refusal to learning them. I’m sorry I know more about my illness than most doctors because it wasn’t taught in med school, but that’s reality. Why not see that as positive?
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Update: FINALLY going to get this scope next week if I can just hang in till then. Terrified, I’m so frail and immune suppressed, but current internist came through and will hopefully try and protect me in there. It’s this or ☠️ so I guess this is happening. 😭
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ps. Thank you so much everyone who’s shared and been supportive. I really don’t know if I can be helped, and have so many other daunting medical issues. but at least we have a chance to find out what the heck is going on with my bowel. 🤞💕
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Just your weekly reminder nobody is masking in the chemo clinic anymore. This week a guy two beds over was sneezing all day. Nurse pulled a curtain to create a barrier. For an airborne virus. While I appreciate the gesture, that is literally all it is.
The profound evil of masks not being required in medical settings, during a pandemic of an airborne virus, cannot be overstated. It is grievously wrong. Even worse, the apparent public acceptance of that policy is an alarming sign that human morality has been irreparably damaged.
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I wear a mask in public because Covid is NOT mild, it’s a dangerous level 3 pathogen, and we are still in an active pandemic. I want masking in public spaces, especially hospitals, so if you agree, show me your mask in comments, copy this and let’s see who’s out there.
#MaskUpC19
I wear a mask in public because Covid is NOT mild, it’s a dangerous level 3 pathogen, and we are still in an active pandemic. I want masking in public spaces, especially hospitals, so if you agree, show me your mask in comments, copy this and let’s see who’s out there.
#MaskUpC19
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💔 This is so accurate. People challenge this online (especially pro-MAID advocates), but it is 100% my experience too. I’ve been approved for MAID for a year and a half and STILL haven’t seen a GI doctor (and have no prospect of one).
#MAID
So medically assisted death has called me 12 times in 48 hours but a doctor couldn’t see or talk to me the entire year of 2023 to help me with my health.
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It’s Covid, he just tested positive. I tried to get up without help (we’re trying to quarantine) and am so shaky and having the shits now. I bet I’m already infected. This is it. Was nice knowing you all. FML. I can’t believe this is happening.
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It’s (still) true. I did my best. I wish I’d known better about so many things (that the actual doctors should have), but I’m trying not to beat myself up anymore. I still feel like I’m drowning every day + don’t know what’s going to happen, but this was not for lack of effort.
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Good morning to my fellow sicks + disableds, + to everyone still masking in public. ☀️💕 Wanna share something nice (🌸🐶🧶📚🎵🍰) with us on this fine morning, where I continue to feel like a bag of hot trash + search for reasons to keep going + not do
#MAID
? Great! I’ll start:
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Just watched the Long Covid keynote at
@sfu
’s Dream series by
@edyong209
and cheered + teared up… he is a legend for a reason, and he really gets it - complex chronic illness. I wish people like him ran the world and healthcare. Everything could be so much better.
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Watching the news tonight about the hospitals nationwide being crushed by respiratory illness and understaffing boggles the mind. Why are we STILL not using the most basic, effective prevention tools? Respirators and better ventilation would save so many lives + so much money.
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Wow. Just saw that the pain clinic is no longer masking either - but they're still fragrance free! I'm realizing that's the case in almost every clinic + hospital I go to now. You're not allowed perfume (thank goodness) but you can freely spread Covid? That's just messed up.
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Like, at what point am I old enough, articulate enough, educated enough, organized enough, knowledgable enough about my own illnesses and medical history, sick enough, polite enough, etc. to get any ounce of real respect or support or validation?? ⬇️
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I just found out that a woman from Vancouver who can't be any older than me from her photos, just did
#MAID
a couple weeks ago. She had a young child. She had ME/CFS, a condition that's difficult to treat + live with - that there's also notoriously abysmal care for in BC.💔
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It’s so weird that I’ll probably be gone soon and the world will just keep going on without me. Like I never mattered. None of this ever mattered.
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Ok, but can we talk about WHY people seek help from naturopaths? Because it’s directly related to inadequate and inaccessible (and often hostile and damaging) medical care.
Naturopathic "doctors" aren't solution to primary care crisis: by
@nicireland_news
Let's be clear: naturopathy is built on magical thinking (vitalism). They are NOT science-based & core practices (homeopathy, IV therapy, detoxes) total BS.
We can't fix
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And nobody deserves to be treated like this, regardless of education level. But it’s just so degrading. I have done nothing to warrant this constant disbelief, disdain, and dismissiveness. I am constantly punished for their mistakes, which I’ve already suffered for enough.
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I don’t want to die, even now. I just don’t know what to do anymore. I guess nobody who does MAID actually wants to die, they just want relief that medicine can’t or won’t give us. It shouldn’t be the latter, I truly believe I could be helped better. But I won’t be.
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All I can think is: when you’re debilitatingly sick, both physically and cognitively, you shouldn’t have to be the one responsible for figuring out all your own medical care. It’s TERRIFYING when you stop being able to manage everything and self advocate and nobody takes over.
The more severe you become the less able you are to research treatments, but I've yet to find a doctor who does so with the diligence of a patient. Now for weeks at a time I can't look at my phone and when I do I pay dearly. It's a terrible place to be.
#longcovid
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Someone please tell me how I’m ever supposed to get proper medical care and stay alive, when almost every doctor I have doesn’t believe anything I tell them but rather bad doctors from my past misdiagnosing me with “somatic disorders” so I can never get real medical care? 😭
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Do you see a commonality amongst all the
#MAID
stories about younger people? They’re almost all women. Why? Complex diseases that primarily affect women get horrible care, and we get treated like garbage. Tell me if this was younger men, there wouldn’t be OUTRAGE.
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💔 Watch this video. This woman in NZ… she is me/I am her. Slightly different but similar condition with so many overlapping comorbidities to what I have. Exactly how I’ve been treated. Now she’s dead.
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Please remember that inspiring sick/disabled people are typically just more well and more privileged than those who seem bitter or angry or too far gone. You only see that and then we disappear. It’s not our fault. I could not have tried harder to get better. ⬇️
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New theory about why everyone has given up and quit masking: denial fuelled mass death pact. The general public/normies have decided it’s better to ultimately destroy society + themselves for a little more delusional faux “normal”. The only ones left trying are us nerds + rebels.
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Probably pointless but reposting this one more time.
#Vancouver
please I need help and have no fight left in me. I am desperate. I don’t want to do
#MAID
but nobody will help me and I can’t keep living like this. I don’t know what else to do anymore.
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It’s going to take me a while to process the doctor’s appointment I had today. First time seeing new doc in person. He was so different. He actually sees the real me. He wants to help. He didn’t say I was “too complex” or it was “stress” or I’d “had too many tests”…
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This is exactly what I’m up against. You win. You got me, I brought this upon myself by being a terrible person. I fucking give up.
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Like, stop harping on me about my mental health if all you’re going to do is abuse me, and treat me like I don’t know anything about my own medical condition or what’s happened to me. Especially when you don’t have a clue about either and don’t even want to understand. Sigh.
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Saying things like “but nothing showed on the MRI” and “but how do you know it’s not just muscular” when I can feel my bowel being affected is just so frustrating and such a waste of time. If you won’t even listen/believe me, what’s the point of reporting my symptoms?
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I’m not inspiring anymore. I don’t wear my handmade dresses or fun earrings. I am in survival mode every single day. I never get a moment of peace between my overwhelming burden of symptoms and this endless battle with doctors and the medical system. ⬇️
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I have no way to make it stop. No power. No respect. No compassion. The couple who have been kind and respectful I can’t get enough time with, they are in such high demand. I feel so trapped all the time. It’s suffocating. This is what hurts me, this is what causes me stress.
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If doctors knew the amount of time we spend trying to be perfect patients - dress right, prep paperwork right, speak right, act right - just so they will not dismiss us and actually try to help… Maybe they would have a tiny bit more compassion? ⬇️
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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.
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To every single person “horrified” and “shocked” by the latest story about a man in Quebec who was harmed in an ER + later did MAID: this is how the system and hospitals work! This is not an anomaly! I’ve been trying to tell you all this and who is listening??? Feels like nobody.
@raghu_venugopal
Not a shred surprised either - this is NOT new or unusual. People are so naive about the state of healthcare and the hospitals. A catastrophic hospital admission (6 days in a waiting room) started my medical catastrophe that led to applying for MAID.
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It’s really wild that humans spent thousands of years developing all this amazing science and technology, so we could live better lives and deal with collective crises… Then when the moment of truth came our leaders were just like, “nah, let the fires and plagues take us”.
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OMFG how am I even watching this drivel? Bonnie Henry is FLAT OUT MAKING SHIT UP. How is this legal??? The “hybrid immunity” BS, BSing about the immune systems of elderly people, There is no scientific basis to what’s she’s saying! It’s purely a narrative to fit political ends.
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Just one week. They would come out begging for mercy, things would be completely different. I wish only sick and disabled people, people who deeply understand what severe pain and illness are like, could be doctors. The whole system would be different, we’d be treated humanely.
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🧵Well, since I couldn't get medical help after a year of trying everything and even begging, still suffering this localised abdominal pain and discomfort, being told there's nothing wrong and constantly gaslit, told I'm hypersensitive, psychologised, etc. we have some answers...
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@theBrianaMills
This also became clear with medical providers when I became too sick to keep pleasing them while getting medical care. The quality of care and attitude towards me nosedived so fast it’s scary.
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Still masking in Vancouver, Canada, while getting my infusions, cause getting Covid again would surely do me in. It’s painful because I have severe neuropathy in my face, but I’ve been working so hard to try and recover from my medical nightmare, I can’t take any chances.
Still masking in 🇸🇪 because I belong to a high-risk group and out of pure spite I intend to outlive and be a constant thorn in the side of the people who are deliberately causing harm to vulnerable populations with their bad public health policies and minimizing propaganda.
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Now I have immense difficulty walking. I have to use a wheelchair to go out every time. But all the doctors I had through these years just see a woman who was already sick and already used a mobility aid. They can’t see the before and after. ⬇️
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Blaming it on being purely muscular or sensitive nerves is the easy out, because then there’s “nothing wrong” that you actually have to help me figure out or treat. Then you can just tell me it’s my problem and to live with it. I wish they could live in my body for one week.
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I could not have tried harder to be a good person + patient. They took everything from me and they don’t even care. They go on with their lives after stealing mine from me + continuing to put me through hell. All I want is myself back but it’s the one thing I can’t have.
#Grief
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I kid you not, I am two weeks into a trial of eliminating oats (which the hospital made me start eating again at the start of my medical catastrophe) and I’ve had a noticeable reduction in abdominal pain/tenderness. 👀 Is it the inulin?!
Inulin, a type of fiber found in certain plant-based foods and fiber supplements, causes inflammation in the gut and exacerbates inflammatory bowel disease according to a recent study. 1/
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Today I very reluctantly ate my words about refusing to do anymore IVIG if I couldn’t try SubQ. This morning, I felt so much better than I have in years from missing last week’s infusion. The side effects finally lifting and coming out of the fog of weak fluiness + meningitis.⬇️
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I've had one single specialist REALLY treat me the way I always imagined was the proper, kind way to treat a patient. And two GPs (one moved back to Ontario after 6 months, the other was at a private pay integrative clinic $$$$). So it is *possible*. ⬇️
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I don't know what else to say.
#MedicalGaslighting
kills. Medical neglect kills. Medical discrimination of complex patients kills. If not through the actual disease, or deteriorating + doing
#MAID
, through the soul destroying abuse that never seems to end for us.
#BelievePatients
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How are there seemingly no books on recovering from medical trauma?? (Please no generic PTSD book recommendations, I'm looking very specifically for books related to medical trauma/medical PTSD.)
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I wish it was bad luck, but at least for female patients, especially more "complex" female patients it's absolutely the norm. And the worst is they always made *me* feel like I was doing something - everything - wrong. Like my illness and everything that happened is my fault. ⬇️
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🧵 So, a local friend of mine who’s not on Twitter (@/hostbodyhan on IG) has given me these to post on here. She attends one of the clinics at BCWomens Hospital and has not been able to get safe care there, because she has MECFS and they refuse to wear respirator/N95 masks.
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I desperately need a compassionate GI doctor in Vancouver to help figure out what happened to my intestines, after being damaged by overmedicating with prednisone and a bad Rituximab reaction. My GI doc abandoned me. I’m approved for MAID but want to live and need help.
#vanpoli
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I wish I didn’t have to retweet these things, but too many people believe that the sick + disabled people who work/travel/date/have kids/aren’t homeless are inherently better people or try harder. Truth is it’s mostly a combo of luck (of being less debilitated) and privilege.
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I know a good number of doctors follow me and I’m not sure if any of you will respond about this but since I think you are “the good ones” I’ll ask anyway: what the hell is going on in medical culture?? Nasty doctors treat their residents like shit and their patients like shit…
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I had undiagnosed dysautonomia and Sjogrens and the OI made things like shopping hard because I would get faint from standing and had bad fatigue. But otherwise I could walk fine. I could walk fine until the catastrophic hospitalisation and prednisone summer 2021. ⬇️
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ps. Also the number of times “you already had imaging for that” has been thrown in my face - things I had imaged BEFORE the last two years/the prednisone and my body being obliterated. I shouldn’t have to explain that bodies change over time and new medical issues can happen.
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And now Covid is in our house. 😭 I still had a life as a sick person, before these medical injuries. And Nice Internist (and the pain doctors, who are much less involved in my care) are the only ones who even believe me about what happened. I’m so tired of being gaslit. ⬇️
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Can people (aka. the media) stop calling Bonnie Henry “BC’s top doctor”? She most certainly is not. It’s an insult to the real doctors with actual ethics, who are working to save and improve lives in this province, and most of all do no harm.
#BeautifulBC
#bcpoli
#cdnhealth
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How close I constantly am to losing my ability to walk now. How this was not from my disease but from the medical injuries. The referral my GP put into physiatry/rehab apparently contained nothing about that and the doctor wouldn’t believe this was not from my disease. ⬇️
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But somehow it's *my* reputation + my competence + rationality + mental health and whatever else that are constantly blamed and questioned. It never ends. I thought when I got old enough or got my diagnosis all pinned down it would stop. But it NEVER ENDS and I'm sick of it.
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@NateB_Panic
The level of medical abandonment all of us with things like LongCovid, MECFS, dysautonomia,
EDS, etc are experiencing nearly worldwide is truly one of the greatest + most violent failures of the medical system and most of the people in it. We are being failed + left to do
#MAID
.
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Thought I’d share some Chopin tonight during this reprieve from IVIG crushing me. NYE 2021 I was discharged after 2 weeks in VGH, undiagnosed in the throes of a severe drug reaction. I couldn’t dress or bathe myself, could barely eat, walk, write… I’ve come a long way, I’d say.
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It baffles me. Lives ruined for a Taylor Swift concert. All it would take is some N95s and good ventilation, to make these kinds of shows safe for attendees and their idols who are starting to drop like flies. People really don’t know how good they have it, being healthy.
Taylor Swift concert goers write about getting Covid at the super spreader tour events:
Many will be disabled and die from these events: it's just the stark reality of Covid concerts:
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This is it they are pulling me off treatment they’re killing me I am done I can’t do this anymore I’m going to do maid
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I just don’t get it. How am I supposed to ever get help if the response to “I have this new medical issue” is essentially: “no you don’t”.
#MedicalGaslighting
#IatrogenicIllness
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ps. This escalated overnight… for all the obsessive pro/anti-vax/mask/Covid etc people: THIS ISNT EVEN ABOUT COVID. I am so sick of everything I post getting flooded by trolls. I’ve been sick my whole life, and was harmed by a string of medical injuries. Get a better hobby.
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I’m so tired of having to beg for help for what was done to me, and not get it. For every new doctor (of which there are few) to be misled about why I’m so sick + what I need to get better. I’m so tired of having to fight like this. Of being disrespected. Degraded. ⬇️
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Ok so I read the article about the LC spouse to see if people were being too harsh and just… 🤬🤬🤬 People are if anything being too gracious. I’m not even gonna dignify it with a link. The psychologising of his concerns alone… NOPE. All I have for her is swearing.
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@Tara_Moss
It’s so cruel. Are they in BC too? All the healthcare here is so unsafe, I get my infusions in a chemo clinic where almost nobody is masked. 😫
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And you know what it was? Not one, not two, but THREE structural bowel issues. One of them alone could explain this, but THREE. THREEEEEEEE. I am 10% relieved and 90% livid that I was gaslit and left to suffer like this, as this all worsened month over month.
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When really I've done things more right more times than any of them. I never would have even gotten diagnosed or on treatment if I'd depended on them. And the one time I put all my trust in a doctor who was supposed to be so good, she nearly killed me and devastated my health. ⬇️
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I don’t know why so many doctors treat their “complex” patients like we’re lazy or “crazy” or not trying hard enough, as if we chose this or can stop it with mindset. Why so many people in the medical system are so hostile towards people who are sick and scared and hurting.
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Well, I’m now up to a count of 4 women in Vancouver alone, who I know who have been approved for
#MAID
due to inadequate medical care (and two of them also financial constraints/poverty). None of us want to die, but we’re suffering despite having potentially treatable illnesses.
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It’s truly strange going from thinking you’ve taken your last shower, used your last tube of deodorant, had your last infusion - to catching up on dental work, doing the HPV swab, asking what other treatment options there may be. I had deeply accepted dying, but here I am.
#MAID
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Don’t do this. If you can’t understand being too sick to move, being too sick to relocate medical care, being too sick to travel, the least you can do is quietly scroll by instead of accusing me of… not wanting to survive? Making shit up? People are becoming meaner by the day.
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@coronatragedin
@AnnikaTyckerAtt
Just got word I will be admitted for the scope next week - update in profile 💕
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I told myself I had to read through a few specific medical records before my neurologist appointment on Thursday, and...I am stunned. Fuming. Every time I read more, the situation shows itself to be worse than I even thought. This is all such a nightmare. I don't know what to do.
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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.
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All this “annoy a doctor in one tweet”? Not funny. This is what destroyed my body + life. This disdain for patients, especially women + people with unusual or complex conditions. It’s resulted in irreparable harm that has left me debilitated, in severe pain, approved for
#MAID
.
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We are just fragile biologic beings, like any other animal, and we get sick. We need care and comfort and to be helped as much as possible, not punishment. Sick animals are treated infinitely better than most humans. It shouldn’t be this way. A little compassion goes a long way.
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Please folks, if you have any of the main symptoms of Sjogren’s: fatigue, joint pain, dry eyes or mouth, small fibre neuropathy, or dysautonomia (including Gastroparesis and/or POTS), *do not* accept a diagnosis of MECFS.
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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…
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🧵 It’s Friday and I am LIVID. I’ve talked to THREE young women (in their 20s/30s) this week alone, who can’t get adequate medical care for complex illness and/or pain, and so are strongly considering applying for
#MAID
. As much as I’m not anti-MAID, this is beyond unacceptable.
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