Thread by @arianek

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.

I don’t understand how especially when someone’s health and life have been absolutely devastated by medical injuries and malpractice, how they can just be treated with such contempt and psychologised (only multiplying the trauma of what’s happened).

I have been drafting another thread about the prednisone more specifically, and have so many more things I want to say about rare and complex disease care in BC, care for @Dysautonomia especially. About the gaps - the abysses - we fall into.

But I’m trying to prepare mentally and physically for going into the hospital for the rest, so not sure how much I’ll be able to get on here… also, depending on much the nasty side of the conservative contingent keep harassing me…

Not all Christians or conservatives are bad, not at all. They’ve been some of the first to want to help and defend my right to live. But gosh, the dark side of any religion or political inclination always finds the most vulnerable people at the most vulnerable time, and pounces.

After the first 10 days since I spoke out, which were mostly very lovely people wanting to help, the dark side got hold of my story and the vitriol and twisting of my story is something else. This whole experience just gets stranger and stranger… what is my life??

I’m sitting here trying to rethink my Advance Directive for last minute changes, given my increased desire to live, meanwhile I found out a couple days ago my spine BMD has decreased a full point since last scan (it’s REALLY bad now thanks to the prednisone I was misprescribed).

And I keep wondering what quality of life I could possibly regain long term - IF I can even somehow keep getting IVIG… I wish I could go back two years and never go to that ER where they nearly killed me, and never see this rheumatologist who put me on the prednisone…

The Rituximab reaction was less predictable, and it was supposed to be my way off the gruelling and expensive IVIG. But the prednisone and that hospital admission… they’ve ruined my life and there’s no remorse or accountability.

Especially this doctor was supposed to be the best of the best. How can someone make MULTIPLE mistakes like this and destroy someone so much? And then be so flippant about it? And then expect me to ever trust them with my “care” again? Baffling.

We are supposed to be able to trust these people. “Do no harm”. Of course we have to take chances sometimes and accidents happen. But too much of this was malpractice, really just sloppy, terrible, irresponsible action.

I can’t believe I’m even going to let myself be admitted again, after everything that’s happened. But my mind has recovered too much from the prednisone damage, and my old self is still in here and still wants to have some version of my life back if it’s possible.

I don’t know if I could ever regain enough function, and get enough of this managed to the point where my quality of life is decent - especially given the multiple types of serious pain I have now that I didn’t before.

Even if the bowel stuff and pain can improve, and we can keep IVIG long term, my body is so deeply damaged - my bones, teeth, skin, muscles, joints, eyes, everything is unrecognisable and deteriorated. It’s like I aged 40 years in 1.5.

And there’s the PTSD. I will never be the same as I was before, if you have never had life threatening illness, you won’t understand it - I couldn’t have. But wow, I get it just a little now, what people who have been in other long term life altering situations go through.

You can never have that naivety about life again, it’s like an existential crisis to the max. This is why people with PTSD get therapy dogs. I get it now. Anyway I’m rambling.

I want to keep telling my story, but being flooded by all this nastiness since my post went viral has made it harder to put myself out there, and near impossible to follow replies. Think of me this week if/when I disappear - good vibes, prayers, whatever you got I’m grateful for.

And as always - my main ask is I’m desperate for a compassionate GI doctor (and pain management/palliative) in #Vancouver who actually wants to try to help me. I don’t need doctor *recommendations*, my referrals get rejected. I need someone who WANTS to take me on. Thanks all. 💕