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”.
A Multitude of Musings 
I’m so sorry that you’re having such a bad time. Sounds like so much mismanagment from way back.
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True but I can’t help believing it’s also partly just the fact that medicating a patient into compliance is easier than figuring out how to properly support them.
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Doesn’t sound like a good week
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Thanks for sympathizing. Yes, it sucked quite a bit.
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I will be thinking of you! I hope your irritable bowel syndrome symptoms are nothing too serious. It sounds like a lot of appointments with a lot to deal with! Sending love and hugs!
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Thanks so very much! 🙂
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I’m so sorry you are having such help problems. I would keep on about those tremors. I used to get them bad and there is treatment available. You should see a neurologist at the least. I’ve also had bleeds on the brain but mine were more recently and the Dr says they didn’t cause any permanent damage. Even the best doctors can get things wrong though. I think my daughter worries about her psychosis medication as she is getting older now, just a few younger than you. It’s such a problem balancing drugs that help and drugs that cause harm over time.
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Thanks for your kind comment. I agree it’s all a balancing act, but my medication wasn’t prescribed for psychotic symptoms. Rather, it was purely meant to sedate me. I do understand that’s how the system used to work (an to an extent still works), so don’t fully blame the individual clinicians.
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I’m sorry to hear about your frustrations with your medical appointments. It sounds like you have such a lot to deal with. I hope you can get some answers about the IBS and tremors soon to put your mind at ease a little.
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Thank you. I hope the IBS is just that indeed. Re the tremors, to be honest my mind is hardly at peace with the fact that there’s nothing that can be done about them and the prognosis is they’ll only get worse. I try to have hope that the decline won’t be too fast, but it’s tough.
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This all reminds me of what was a growing problem years ago that my friend’s son got caught in. He was diagnosed with ADHD and instantly put on strong meds to “control” him. He became a virtual zombie. So much of the light went out of his life and his mom seemed oblivious to it all. I understand putting faith in doctor’s orders, but her son was so much a different person. Doctors at that time did this treatment a lot and it was heartbreaking to see how it affected the youth of the time (the 90’s to early 2000’s). Doctors do not always have the right course of action. You kind of have no choice, but to follow their lead in hopes of it working. You do still have to be vocal if it is not working right. I so hope that you get some correct avenues in your medical care to improve your quality of life. Even with years of knowledge, the doctors are not always right in every individual.
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Aw, I feel for your friend and her son. this is truly hard indeed. I think your friend’s and her son’s experience as well as mine are a sign of the times, ie. the need to “stabilize” everyone who does not conform to society’s norm. I once, a few years ago, read somewhere that neurodivergent (autistic/ADHD/etc.) people are like the canary in the coal mine that is modern society. I for one do believe that autism/ADHD/etc. are real and they aren’t necessarily overdiagnosed or overtreated on an individual level. What I mean is, it isn’t teens/parents/etc. labeling themselves/their kids/etc. with these conditions that is the problem, but rather it is society being increasingly unable to accommodate people who are neurodivergent and choosing to medicate the individual rather than make society more accessible. If society accommodates more for individual differences, people won’t feel the need to seek medical advice as much. Sorry for ranting.
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Don’t be sorry. You are right. There have been modifications done for physical handicaps for years now, but except for a limited few “quiet rooms” or sensory friendly hours at a small handful of stores there really is nothing. It is like putting a band-aid over a hole in the dam. More needs to be done. We have the ability to adapt to differences but often the most severe cases can’t. Shouldn’t we be willing to bend a bit so they can fit in and feel more accepted. We let the bathroom stalls be larger, sidewalks without curbs, audio response crosswalk signals for vision impairment, and a million more things. I certainly can make a change to make other’s lives better. … although I am learning more and more of the next generation are not. I wish society could change… but it will take many years, if it happens at all. I applaud those minor things I have seen and mentioned above. It will take many more small steps like these to link the world more together.
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I agree to an extent. What I meant though is people with what is now considered mild autism/ADHD/etc. wouldn’t have needed a diagnosis back in the 1980s or earlier because society was more accommodating of them than it is now. People with more severe disabilities, be it physical or developmental, like myself, have always been left behind and I doubt accommodations alone could help these people fit in.
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Sorry that you’ve had a stressful week with your medical appointments and the bad news from the appointment with the intellectual disability physician. It sounds like a lot to deal with. I hope that you get some answers with the tremors and the IBS and that you can be more reassured about what is going on. #WotW
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Thank you. The IBS symptoms turned out to be nothing serious, thankfully.
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those appointments sound rather intense, I’m sorry your declining, I hope something can be done to prevent further decline in the coming months. Xx
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I hope so too but I doubt it. Thanks for stopping by.
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