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.