Medical Appointments #WotW

Posted on by Astrid

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”.

#WeekendCoffeeShare (February 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. No more coffee for me today, as it’s nearly 8PM. Please grab yourself a cup of your favorite beverage though and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been all over the place. We’ve had rain, sunshine, temperatures around 9°C and freezing nights. In the province of Groningen, there was a code red weather warning for ice.

If we were having coffee, then I’d share that I haven’t been very physically active again this past week. That is, I did go for walks almost each day, but I didn’t do any other exercise.

If we were having coffee, I would share that I however was quite crafty over the week. I made a bracelet and tried making another one. I also tried to work with a texture mat on polymer clay for the first time today. The result was interesting.

If we were having coffee, then I’d tell you that the homemade granola I baked last week was a great success. I made another batch on Wednesday, this time adding instant coffee. This one didn’t turn out as awesome as the previous one and I’m not sure whether it’s the nuts maybe having gotten slightly burned or it’s the coffee flavor not matching well with the other flavors. I gave some to a fellow resident who likes trying homemade food, but he didn’t like it.

If we were having coffee, I’d tell you that I finally heard from the Center for Consultation and Expertise (CCE) consultant. I received a short note describing recommendations she’d make to my care team. She’s going to provide continuing education to the care team on these things.

I don’t know how to feel about the whole thing. On the one hand, I’d like to see her saying she’s going to educate the team as a sign that I don’t need to change but the team’s approach to me does. On the other hand, it still stings that she hardly spoke to me and not at all without the staff being present. I still have quite a lot of questions, but her work with me has ended with this letter.

If we were having coffee, I’d tell you that the occupational therapist came by here this week to shed some light on ways to help me cope with my hand tremors. She hoped a weighted wristband would help. I was initially quite optimistic, but on the first try when my hand was trembling, I noticed it not only made no difference in that respect, but the thing was in the way when I tried to operate my iPhone.

I from noticing that got rather frustrated once again about the doctor not being clear about what causes these tremors. She claims it’s aging, stress and maybe medication, yet refuses to taper my meds more quickly. I’m kind of worried that, like the CCE consultant and practically everyone involved in my care, she’s not giving me the full story. I know I have a right to information regarding my medical care, but there are exceptions to this when the clinician believes this information would significantly harm the patient. If this is the reason I keep getting only vague comments about my medical situation, I want to tell my physician I’ve already envisioned the worst and the uncertainty is more harmful to me than it would be knowing I have, like, a neurodegenerative disease.

If we were having coffee, lastly I’d share that my ears are blocked and I hardly hear a thing out of my right ear. I will get them syringed on Sunday.

No Reason for Alarm, Apparently #SoCS

Posted on by Astrid

Hi everyone. I’m pretty frustrated right now. This is in part related to the usual struggles with my day schedule, ie. the fact that the only thing that’s clear about it is when I have support and when I’m supposed to be by myself. I’ve explained a zillion times that I need my activities to be more structured but the staff keep saying I can’t do any meaningful activities when I’m in distress. This may be partly true, in that polymer clay, baking and cooking are harder for me to do when I’m in distress, but when there’s no clarity about which activities I’ll do, the sheer magnitude of the list I have to choose from, overwhelms me before I can even decide whether I’m in good enough a mental state to do such an activity.

Another thing that’s been bothering me, are my physical symptoms. I’ve had horrible tremors for a few years already, but over the past year or so they’ve steadily gotten worse. My institution’s physician tells me to distract myself when it happens because it’s probably in part stress-related. However, I can barely operate my phone or computer when my hands are trembling and all the activities that I can do on my own that would at least in theory distract me, involve my iPhone or computer.

Yessterday, the tremors were so distressing and also my leg was in a constant state of tension. The tremors mainly affect my right side, while the muscle tension was on my left side. I have mild cerebral palsy affecting mainly my left side, so it’s kind of understandable that I’d experience spasming in that leg. However, there’s no known explanation for the tremors. Yes, they could be psychosomatic, but they could also be due to medication (one of my various psychiatric medications), some kind of long-term effect of my cerebral palsy, or any combination of these.

Knowing that my doctor doesn’t see a reason for alarm, is somewhat comforting. At least there’s no reason for me to believe I have a neurodegenerative disease. That doesn’t mean the thought doesn’t creep up on me at times though. However, even when I am able to realize that I’m not suffering from Parkinson’s (not that my tremors are at all similar to those someone with that disease would suffer from), the tremors are still debilitating.

On Monday, the staff are going to ask my GP’s nurse practitioner about the symptoms yet again. My intellectual disability physician tells me to distract myself, apparently believing my symptoms are psychosomatic. I’m pretty sure the nurse practitioner is going to say the same. However, if only those telling me my symptoms are all in my head and due to stress, could help me lessen that stress!

This post was written for #SoCS, for which the prompt today is “alarm”.