Medical Appointments #WotW

Hi all. This week has once again been quite stressful. I mentioned several reasons already in my post on Thursday, but with respect to those, I still have hope. Unfortunately, I did get some bad news from the intellectual disability physician I saw yesterday. I also am due to get bloodwork done because my irritable bowel syndrome symptoms seem to have gotten worse. Fingers crossed this is nothing serious.

On Monday, I attended the monthly brain injury meet-up. It was good. I do struggle to fit in though, with me having acquired my brain injury shortly after birth and with my not having answers as to why things seem to be getting worse. I did get some answers on Friday though.

On Wednesday, I saw my GP’s nurse practitioner for the IBS symptoms. They seem to have eased a little since then, but as with everything functional medicine, they ebb and flow. I hope nothing else is going on. I mean, it’s been nearly 14 years since I got the IBS diagnosis. Back then, when I had a colonoscopy, my wife was worried about cancer, but I reassured her hardly any 26-year-old with no family history of cancer gets colon cancer. Now thankfully I’m still young for that at 39, but I do know all the warnings about going to your doctor if your IBS symptoms start or change when you’re over forty. Add to that the fact that the intellectual disability physician considers me part of the aging population and I’d rather be wrong in a good way than missing something that turns out to be dangerous.

On Thursday, I had a visit from the occupational therapist about my tremors. They’ve been getting worse, as has my mobility impairment. I also feel like I’m experiencing cognitive decline. The intellectual disability physician had referred me to the OT because she’s clueless what to do about the tremors and yet doesn’t think it’d help to send me to a neurologist. Two weeks ago, the OT had given me a weighted wristband to try, but it didn’t work at all. She’s not sure what will.

On Friday, like I said, I saw the institution intellectual disability physician. I came into her office rather upset because of the OT appt on Thursday and because I felt like the doctor was not taking me seriously about the tremors. I asked her up front to explain what they are and why it wouldn’t help to send me to a specialist. The explanation I got was roughly the same one she’s been giving me for years, but harsher: because of the brain bleed I sustained as an infant, I’m at risk of earlier decline compared to non-disabled adults. I know this is partly true from having attended meetings of other people with cerebral palsy, but 39 (or rather, early 30s, as I’ve been declining for years) is a bit young still.

However, she did admit that my psych meds, including for many years high doses of an antipsychotic, have left damage too. Unfortunately, it’s irreversible by now, so even though I’m at a much lower dosage of my meds than I was years ago, there’s no way to cure my tremors or stop the decline. The only glimmer is the fact that she reassured me I don’t have a neurodegenerative disease. That is, of course I do, it’s just not something that can be named (like Parkinson’s). In that sense, hardly a glimmer at all.

Since yesterday, I’ve been rather sad and angry. I was originally coerced into taking my meds because the psych hospital didn’t know how to handle my meltdowns and they were threatening seclusion. The dosage kept being upped for various rather unclear reasons. I mean, I was never psychotic and my depression wasn’t so severe that medication should’ve been the first course of action. But what did I know?

The worst is I’m still in the system. Not in the psych hospital, of course, but the institution is pretty much as oppressive, just in other ways. It all makes me feel rather upset.

I’m linking up with #WotW, with my phrase of the week being “medical appointments”.