Tired to death

More medical stuff today.

I’ve been trying out a concierge medical service that doesn’t do much called Forward. I have an HMO, which means about all Forward can do is act on top of that.

I messaged Forward using the app today because the anemia is pretty bad and I can’t get into my PCP until the end of the month to even get a referral to a hematologist. The anemia makes it almost impossible to function. Emily had to order food for me because, even with a stocked kitchen, I couldn’t cook. I couldn’t even order food for myself. And I could barely make it down and up the stairs to pick up the delivery. This is real. I don’t have to make it up.

Their advice was to go to the ER. When I was in Tucson, I went to my private osteopath and paid out of pocket for iron IVs. This worked for me for about seven years to regulate my iron. It would work now if I could find someone who would help. I know the solution. I just can’t get anyone to listen to me, believe me, or help me.

Why isn’t the ER a solution? Because I can’t even handle being in a doctor’s waiting room for an hour without the potential of a meltdown. I certainly can’t advocate for myself in an ER. I’d get there, decompensate, wait forever, get poked and prodded, wait some more, get treated like cattle and maybe a hypochondriac, and then have to come home after treatment (optimally) and stop talking for a week.

ERs are very scary places for autistics like me. ERs are very scary places for everyone. But I can’t go. At least not without some kind of patient advocate who knew my medical history and would help. That doesn’t exist.

The nurse practitioner from Forward got upset with me because her two options were: 1. go to the ER or 2. come into Forward so we can tell you to go to the ER. When I said those were the same thing…and were there any other options, she started calling me ma’am, which is never a good sign. Long story short, Forward can’t do anything for me except take more tests and charge my insurance company.

I don’t care how frustrated the nurse practitioner was with me. She wasn’t presenting solutions and however frustrated she was, I’m 10x more frustrated because I can’t get to a simple solution of dignified care. I just need someone to read my blood test results, listen to me, and stick a needle in my arm and pump it full of iron.

The only way I can get quality care in this country is to pay out of pocket and go around the existing systems. That takes a lot of thinking. It takes a lot of money. It takes strategy and self-advocacy. I don’t always know what’s wrong. I live in a body that doesn’t act the way others’ do and I have to try to explain things to people in a way that doesn’t make sense to them because all they ever learned was how to memorize common symptoms.

Autism isn’t just an intellectual disability. It affects everything about me. And no one teaches autistic patient care. Everyone just expects autistics to have parents to advocate for them. It’s unrealistic and it contributes to the shorter lifespans autistic people can expect to live.

We die younger. We die younger. We die younger.

I don’t know what else to say.

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