It’s been a month (aka 4 days) since my last post. I sent a message to my Psychiatrist-in-charge and a lot of his answer was “you need to weigh the options yourself.” He talked about risk and mitigation and those types of things, but it just made me feel worse. I don’t think I was expecting an “Outrageous! Definatey stop the study!” or even a “Quit whining and sign it.” I guess I don’t now what I was expecting.
I started over with the detailed document and worked on questions I have. I’m on page 5 / 40something and have (checks clipboard) 36 questions already. I wanted to keep working on it tonight but it makes my soul hurt, so I’m not sure when I’m going to work on it more. I do know I’m less and less worried about missing the December 1st intake meeting. One of my questions is about my suicidal ideation, and I thought I read somewhere in all of this that suicide risk is a disqualifying factor. Would like to know that before I invest a lot of time in this.
Why don’t I want to do it? Because I’m not getting a good vibe off the document, I’m worried about what might happen (or not happen) to me, and I’m afraid of losing my care team, who I have worked with for so long and trust and appreciate. There is a 50/50 possibility that I wouldn’t get the DBS turned on in the first batch, which means I would spend over a year with the therapy and meds that I am on right now, sans ketamine. I haven’t spent a year without a major incident since this thing began, 7 years ago. While I’m usually the one who wants to get worse so it pushes me over the line, I don’t think I like the idea of someone else being at those controls. I don’t know, I just feel scared of the study at the moment.
Why do I want to do it? It’s a science based technology whose description does not start with “we don’t know why it works, but..” like the rest of them. I’m willing to do it for my family, I guess in the hopes that I’ll go into remission for a long time. (DBS alleviates only when it’s running, it does not cure, BTW). My care team recommended it. I have nothing better to do. This is not a very compelling paragraph.
I keep bringing up the ketamine, for the following reasons
- It helps
- It’s the only thing that helps right now
- I feel like it’s been cut off without explanation. I can guess it’s because it messes with the same brain that’s in the study, but I want to be better informed as a patient
- I worry about what else is going to get cut from my current catalog. If they make me stop taking the med that keeps my restless legs syndrome at bay, I’ll quit on the spot. I worry they’ll change my PRN (on demand) meds, which have taken me forever to figure out which one works for what and when. Are they going to prescribe me one of the drugs we passed over due to horrific side effects? Will I have any say in this?
Maybe it’s a little bit of a canary in a coal mine, for me. The anxiety this is causing (and the following overpowered depression) is making me crazy, and like my whole support system is about to fall apart. Fuck.
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