a Scarlet D

tl;dr summary at the end of each section.

VNS

We increased the power to 1.75 mA, the next will be 2.0 in a couple weeks or so. I was pretty much tolerating 1.50 but it was still painful and the heartburn was annoying. At 1.75 the pain has increased to something that makes me gasp a little, as it’s sharp and sudden when it fires. It just feels like a surprise every time, and it’s extreme enough that it gives me a little bit of a fight response. After the initial few seconds of intense pain, it mellows a tiny bit. it’s not as bad, but it still hurts.. At lower settings it was a nuisance from time to time, but I didn’t even notice it for the most part. When it fires right now I look at the clock to see how long it’s been, and I’m seeing that I feel it hard enough to check at most every 15 minutes, often every 5 which is every single time, More so in bed, We just turned it up yesterday, so that may get better. Lying down it seems to hurt more, especially on my side. When I’m upright I will get the little coughing fit, but not too much. Lying down it makes me feel like I can’t breathe. When that happens, I purposefully open my mouth wide and take a deep breath. It proves I can actually breathe, and helps settle my mind a bit. Unsettling.

tldr; Overall the higher settings are painful, more heartburn, cough/breathing issues and annoying.

TMS

Still doing daily, will end around St Patrick’s Day. Hurts when it’s firing, and when the VNS and TMS fire at the same time I don’t know which one sucks more, but they’re working together for maximum effect. I spend most sessions looking at the clock and figuring out when the next VNS shot is, and closing my eyes in between. The last time I did this TMS I passed the time chatting with the techs, which they’re more than happy to do to help me tolerate it. This time I maybe utter a dozen works for the whole session. Bit sad.

tl;dr Still sucks

Ketamine

Still doing ketamine weekly. For some reason it’s lasting longer. With my tolerance I was getting to the halfway point and being aware enough that I knew I was in “real life” (which I’m still convinced it not real, that the ketamine state is the reality.). Now I’m making it almost the whole hour. Tech said I was talking some last week. I said a clear “WTF” but not the acronym. Continuing indefinitely.

tl;dr Doesn’t suck

PCS

Had a phone screen for eligibility for a Prefrontal Cortex Stimulation implant. They said I looked good so far. They implant leads in my head – in contact with the gray matter, not into it. There are wires going to a device in my chest which runs the impulses, etc. Much like my VNS but instead of shocking the vagus nerve, it’s hitting the brain. It’s personalized somehow, but not sure exactly how. Oh, the brain surgery would leave scars on the upper forehead. Don’t know how bad, how subtle, and how it would affect my hairline. That could be a problem. Study would be funded completely, so no cost to me on any of that stuff. I would have to have the VNS turned off for a period to see if it had any effect. Like a month or so. Would be weird not to feel it anymore. Also, for the PCS implant, they would have to explant the VNS first. No idea who pays for that.

tl;dr Something like a VNS for the brain, would require neurosurgeons playing in my head.

EMDR

Have an interview with an EMDR specialist in a couple weeks. Would be talking about using EMDR to address my chronic suicidal ideation. Would also do a refresher of the CPTSD work I did a couple years ago. I’m numb to the suicidal ideation, but I’m realizing more and more how other people might be horrified what goes on in my head. It’s a running conversation about how I could use what’s around me to end me, and if I should do that.

tl;dr Hypnotism to make me want to live

DBT

After TMS is over, I’m going to have an open schedule again. Like, two appointments a week. So I’ll be looking to take yet another DBT course. That will keep me plenty busy, and maybe I can get my old coach. Doubtful, but you never know.

tl;dr Might do later on

SSDI

Talking to the Ticket To Work guy again. Refresher: Social Security Disability pays their company to work with people on disability to help get them back in the workforce. My guy is awesome. Helpful but also super supportive and understanding of my situation. I’m in no way ready to go back to work, but I want to start to understand what my new profession will be. He’s going to send me some positions as ideas.

tl;dr Not working soon but trying to imagine it.

PHQ

I have to take the PHQ-9 depression inventory daily with TMS. For a while I was really low, like under 10. The maximum is 27, my personal best is 26 a few years ago. These days I’m in the low twenties, up to 24. You’re supposed to take it every two weeks to get a running picture of where you are, but TMS wants a micro view, thus taking it every day. I’ve taken hundreds of these, but every single time I read the question and think hard about my answer. I guess I want to know the numbers are completely accurate. I use the latest score to understand where I’m at. Sometimes it surprises me by being higher or lower than I expect.

tl;dr Still mentally ill

USD

Not that you asked, but financially I’m holding my own. Between the long term disability insurance my company gave me – and will fund for up to two years just out of the goodness of their hearts, and the SSDI I’m bringing in enough to hold my own and not draw down my savings too much. I’m serious about how much I appreciate my former employer paying for that LTD indefinitely. I was lucky (and smart) enough to build up a good amount of savings at the last job, so that helps. Technically I could live on it without any other income, probably for over a year. But I don’t want to do that if I can avoid it.

My expenses are medical payments, food, streaming services, and utilities. I don’t get out much. No major purchases, no more major trips, and trying to reduce costs as I can. I can give you my Venmo if you want to drop a couple hundred thousand dollars on me. Otherwise I’ll continue to be somewhat self sufficient. 🙂

tl;dr I’m fine right now, donations welcome

Me

We’ve upped my daily stimulant, and I can feel it. I move more, and get a chore or two done sometimes. Recycling still needs to go out. But that’s like a 50 foot trip down the hall. I am getting out of bed when I have to for appointments. Otherwise not so much. I didn’t do anything this weekend except go out to dinner with my BFF on Friday. Didn’t even go outside, I hear it was nice out. I keep busy with things like Minecraft or watching pointless documentaries, but really don’t do much. I feel isolated and lonely, and those are the times I feel almost actively suicidal. (That means not thinking about it, but making a plan or executing it, so I’m safe but really close to not being safe.). I dream of trains and apocalypse. I don’t see a future – in that I don’t know who I will be, or what I will be doing. I don’t think of 2027 and imagine where I’ll be. It’s just nothing. When people make an appointment with me, I always think (but don’t say) “Yes, if I’m still alive.

I read that paragraph and understand how messed up it is. Retroactive trigger warning, sorry.

Also, every single therapeutic thing I’m doing seems like something useful. But I don’t believe any of them will help, as nothing before has helped. (One or two exceptions)

I have a couple of my crazy friends (from programs, what else am I going to call them?) calling me from time to time for support or just bored. It’s good to hear a voice who cares but more importantly understands completely what I’m talking about. And it’s nice to know I’m helping them too. Thanks K and J!

tl;dr Depressed, poor outlook.