At the ER I had low CO2 levels. that doesn't happen unless you're not getting enough oxygen. I've had trouble using the CPAP machine. Hallucinations can result from low oxygen levels. Or not eating enough. Whatever the initial cause was, I think the low CO2 levels mean more then the rest of what they found. I've gotten a lot of heat for the CPAP machine. Hospitals don't like it. Centers don't like it. It takes maintenance, it is loud, it is messy with the cables and tubes. I wasn't using it enough. the losses of consciousness, the hallucinations... I need to eat more and to use the CPAP more. My body's not that strong.
Song List
1. Struggle
3 AM
The Rose
2. Rage
Perfect Circle
Tool
3. Retreat
Moonlight Sonata - Beethoven
4. Desperation
My Own Prison - Creed
5. Courage
One Day More - Les Miserables
6. Stress
Ritalin
7. Desire
The Shape of You
8. Regrets
Piano Man
9. Tranquility/calm
Harp music, doves, autumn
Bubble Boy
So here's something strange. Honestly, I don't feel like I've put a huge amount of conscious thought into this VNS device. It's one of those things that I don't feel I should try to understand that much, and it seems strange to me that people would want to know unless they have to. But the device is quite peculiar, and unfortunately by now I've had so many doctors, I was rather preferring to resign myself to being managed rather than actually managing all this.
Yet, in 2020, I made that decision to try being more natural. I've questioned that decision every single day. First it was no more Clozaril. Then it was the CPAP I started using less. Now it's the VNS. Now I'm having to use the CPAP again. Decrease one medication or intervention, back to another.
The neurologist no more a fan of the VNS decision than the psychiatrist about the Clozaril. At least I avoided feeling the need to threaten a lawsuit. My popularity among the doctors has plummeted.
It was foolish to think that I could make these changes and not attract attention. The more quietly I try to live, the more attention I seem to attract. I can't hide in the shadows forever, but how someone this medically complex lives a quiet life in the community while remaining in contact with other people seems to be beyond anyone's understanding on this earth.
I had struggled so much that I wanted to help other people understand. Then I face all the problems, and it seems like I'll be spending the rest of my life working them out.
I have collected many letters along the way. Medical terminology. I'm so tired of thinking about it. Where do you start with that many problems? I'm giving "strange" a new definition every day.
The VNS was turned down in frequency on February 25th. If the neurologist could have seemed more hesitant to do so I'm not sure how. Damn thing was making talking and swallowing difficult, and when you feel like you're drowning in saliva then you know you have a problem or two.
I've noticed a few things. First, these weird sensations in my head. at times the right side of my head throbs some down the temple, but more often the left side. then there's this isolated sensation that feels like the left hemisphere or right hemisphere pulsing. I don't even know the terminology for these sensations, but they can be quite distinct. Knowing that this device is used more for seizures then mental health is not particularly alarming to me, but I feel very aware of that fact and how much I use electronic devices and have sensitivity to loud noises or bright lights. I went from being numb and completely regulated to all sorts of weird feelings.
I would have rather left the journaling to the doctors but given how much this takes out of my life and how uncommon my life is, what can you do other than write about it and hope that somehow someone learns something. And I'd rather not spend the remainder of my life as a specimen. It's taken so much of my time.
I want so much to write about normal stuff and then end up doing nothing because my life is anything but normal. The amount of resentment in my heart... then they're like oh but you're strong! and I'm like, screw that. I'd like some new emotions please. But that's not how it works. I can't journal what I don't experience, can't talk about what I don't experience, can't do what isn't related to my biology or experiences. Then I'm looking for the cans. Today I can feel chest pain. swelling in my feet and they seem harder to move. Blood pressure has been funky.
When the VNS was first turned down, I had to remember how to breathe more naturally. There were times I stopped breathing. The dust allergy seems the least of it but it's easier to focus on that then the weird stuff that comes up with the VNS. It's truly quite disturbing. But I can't ignore it. Not when 911 becomes involved. Not when your social circle is limited to medical personnel. There's not enough denial in the world to hold that together.
PRISMO
Call the 911… for your emergency
Go to PRISMO… you’ll have
emergencies
Bounce from offices
They all have the sign
Pretty colors… but they’re so ugly
In the ER, we don’t want to know
We got you programmed
So our lies can flow
Been here before?
We don’t know your name
It’s on the chart
But we’ll keep ask anyway.
Cuz we got games to play.
You got a problem??
We’ll manipulate
Enough offices…
To bounce the problems around.
You got ethics?
Don’t deny this.
It’s fucked as shit
You got a program?
You got drones too
You know what?
There are people in this community
That you belong to.
So take some feedback
And don’t deny it.
You don’t threaten me in the ER
You don’t play games with me
It’s no longer funny.
And you can’t control me too.
Cuz we got eyes and ears too.
You got some lawyers?
Community has lawyers too.
More then a few.
You’re there for emergencies
Don’t pretend otherwise
You’re here to stay?
SO AM I.
You got choices?
SO DO I.
You got records, cameras and microphones?
Play them publicly
See what happens.
Lose your state funds
And you could go down.
You play every second.
You could go down.
I may be ugly.
So are you.
You call it PRISMO?
Sounds like prison to me.
You might hurt me.
It’ll come back to you.
Bounce the pain around
Take the survey. Put it in lost
and found.
Scrub your records.
You can’t scrub me.
You wanna yell at me?
I got a voice too.
Find another name for abuse.
That name will find you.
You need some feedback?
Here it is for you.
Don’t sabotage the community
Because they find you.
And they got lawyers too.
More then a few.
You got names yeah?
We got names too.
There's not enough people to blame
When you create blame too.
Written 2025, Accountec, LLC
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