zenolalia | (no subject)

The nurse today gave me a nasty look, but at least not a lecture, when I admitted I don't exercise because I'm too tired. I sleep 12-14 hours a day and gave nonstop headaches. When and where would I find the energy? To say nothing of my actual, literal fucked knee and the fact that moderate heart rate increases and parasympathetic nervous activation cause me to have panic attacks, hallucinations, flashbacks, migraines, and what may or may not be absence seizures.

The neurologists decided I have sleep apnea because in overweight. I don't snore, wake myself up, have breathing difficulties, dry mouth, breathlessness, stop breathing, gasp, have high blood pressure, have a large neck girth, have family history of apnea, or sleep on my back. But I'm fat and tired. So it's apnea.

I'm so tired of doctors.

Even with a good primary care doctor, the fact is, she's almost an hour drive away, and my specialists are so such a crap shot, and I'm just so tired.

I'm so tired and I can't ever sleep enough

Flat | Top-Level Comments Only

From:

cutecabaret

wasn't getting your gallbladder removed supposed to make you less tired? ono i'm sorry that it might be something even worse and that you still haven't gotten everything figured out - i hope you find a doctor that doesn't suck, i'm still looking myself.

From:

zenolalia

The gallbladder removal did stop the, like, sudden crippling abdominal spasms that left me curled up on the floor screaming any time I ate, so I'm calling it a win. But unfortunately, it did not have the desired knock on effects for everything else, no.

From:

hellofriendsiminthedark

I don't snore, wake myself up, have breathing difficulties, dry mouth, breathlessness, stop breathing, gasp, have high blood pressure, have a large neck girth, have family history of apnea, or sleep on my back. But I'm fat and tired. So it's apnea.

*incoherent muffled yelling and hand-waving* Forget fat people, that doctoring is what's really lazy.

From:

zenolalia

The thing that gets me is, my PCP put me down for a full sleep study, like the in-lab with the electrodes and what have you. And this neuro who has legitimately never met me, for whom I had never even done a single intake questionnaire?

He saw my weight on my referral and CHANGED me to a sleep apnea test confirmation exam.

Had he met me, asked a single question, given me a single form, I would have explained in great detail all the reasons why while I would love for it to be sleep apnea--one of the easier to disagnose and better understood sleep disorders that, critically, is widely covered by insurance--that's almost impossible in my case!

But he did not ask!

He just!!! Decided!!!!

So now I get to wait for this confirmation exam to come back negative (which it undoubtedly will), and then I get to wait a few MORE months for him and his over-booked schedule to have a SECOND opening to see me, and THEN I will get to explain and THEN I will get the lab that my PCP put in me for in the first goddamn place.

Like, I'm honestly furious about this, or I would be if I had the energy, but mostly I'm just tired.

From:

hellofriendsiminthedark

That is some second class citizenship bullshit right there.

From:

bushwah

"moderate heart rate increases and parasympathetic nervous activation cause me to have panic attacks, hallucinations, flashbacks, migraines, and what may or may not be absence seizures"

You ever just... wish temporary body-swapping was a thing? Not so you could force these people to go through with it. Just to *dare* them. Call their bluff. Because, holy fuck, who would voluntarily exercise under that kind of strain?

Also hellofriendsiminthedark is correct that the diagnosis of apnea is ridiculous and stems from moral and intellectual laziness. I don't know what's going on -- the constant pain may or may not be causing all the sleep, but the really interesting question is what's causing the *constant pain* -- but that doctor really, REALLY doesn't know what's going on, and moreover doesn't seem to have any interest in finding out. Or, uh, making it stop.

What an asshole.

From:

zenolalia

I used to exercise anyway, because in the game of PTSD and neurological disorder vs eating-and-dysmorphia disorder, dysmorphia had taken the lead. But then I got sicker, physically, and had to stop. And somehow, there are a lot of doctors who think that's a failure on my part, which is like? Fucked up.

TBH, there are a couple of doctors out there who I wouldn't mind forcing to live a single day in my particular brand of hell. Like, just to watch them squirm. I'm thinking of this one dude in Massachusetts. He's a bastard who specifically targets people who--like me--have been through basically a laundry list of every other specialist in a tristate zone and gotten nowhere. He promises that he can fix anything, and sells vitamin pills that insurance doesn't cover, that cost about $1300 a month, and so many people are grateful to him for basically fleecing them in this way. He can have a day of seizures and muscle spasms and hallucinations. He deserves them.

From:

bushwah

Do they even acknowledge that that treatment has unusual and severe side effects for you, or are they just cluelessly blundering forward à la "sometimes you have to keep going through the BURN in order to keep up on LEG DAY"?

Ehh, I'd still have ethical issues with actually *doing* it, but I see your point. Sounds like a scam artist and a quack. You know, I had a um, questionable doctor prescribe me vitamins, and come to think of it, they *did* push me to get them from a particular online store... same scam?

From:

zenolalia

Fair enough. If I thought there was any way to actually get anyone to care about him being a blatant scam artist, I'd probably go a different route than, like, Freaky Friday as torture. But I live in a town that's 80% black and 70% within the food stamps margin, so like. No one gives a shit about scammy assholes running rampant.

I think the vitamin brand was called metagenesis, but it's been about two months and the dude's website just keeps trying to sell me his stupid book, so that's not super helpful. Each individual bottle was like, you know, realistically priced for a high end vitamin, in the 50-90 dollar range. But then he was telling me I needed to take 18 a fucking day, which, my dude, what the fuck, that's over a thousand dollars a month. Because each bottle was for a different micro-nutrient or plant supplement, none of these were multivitamins or anything.

As for the exercise, every time I've ever tried to explain why I don't exercise to doctors, one of two things happens. In the good scenario, they fixate on me saying I have a bad knee, and tell me to try swimming. In the bad scenario, they fixate on me using words that I--a lowly layperson with no medical degree-shouldn't know, like "parasympathetic nervous activation" and decide that I am reciting something I read off of google instead of something I've been researching for decades because I've been living with it, completely ignore my existing PTSD and psych diagnoses (the ones that literally say in big old letters from my psychiatrist that I should not do any cardio exercises because it causes flashbacks, and that resistance training should only be done under supervision to avoid hallucination and seizure that could lead to severe injury), and just like. Give me a degrading lecture about how I can't trust everything I read on WebMD.

Like, I give my stupid rote explanation when I get new doctors, and every time it's some kind of torture. It almost makes me think exercising might be worth it, just to avoid their fuckery. Except for, you know, the non-negligible risk that I would die.

Edited Date: 2019-05-04 12:27 pm (UTC)

From:

bushwah

um, eighteen pills a day?? a) that would fuck up my throat, and b) I would give it up in the first month. I bet this fucker is counting on it, actually -- if his clients comply with treatment, they get a chance to say "I'm doing everything you said and I'm still not getting better," but if they *don't* then they still have to buy at least one round of pill bottles and they're likely to keep real quiet about any concerns they have.

There's no cure for the doctor who won't listen. To be scrupulously fair, I'm not sure there *is* a solution to your actual issues preventing exercise -- the 12/12 sleep cycle is brutal when it comes to stuff like this, and the amount of energy you can devote to exercise is accordingly quite minimal -- but if there is, it doesn't start with erecting a bunch of fake issues in front of them.

From:

starshipfox

That's awful. This treatment happens to so many people, and it's so deeply frustrating, frightening and invalidating. It's not OK.. I'm sorry it happened to you too.