I talked to the support coordinator, the one who’s officially the other part of the home’s support coordinator but attends my meetings with the behavior specialist because I don’t get along with my support coordinator (my former male assigned staff). She had talked to the intellectual disability physician and I won’t have a meeting with her on tapering my medication until late September. The reason is the fact that there’s lots of temp workers at the care home during the summer months and they want me stable for now. Well guess what? If you want to wait for there to be few temp workers, you’d better wait for 2034, as I usually say. For those not aware, 2034 is my code word for never. It’s inspired by the book called 2034, which is about World War III.
I’m pretty angry about this whole thing, because well I already have mildly decreased kidney function as is. That is, I had mildly decreased kidney function a year ago at my last bloodwork, so who knows if it’s gotten worse now? And, as you might know, kidney disease doesn’t usually cause symptoms until it’s pretty advanced.
I don’t even mind waiting till September, except that this means seven months on my current med combo rather than the originally planned six weeks. And except that who knows what will get in the way in September? For all I know, the support coordinator might’ve gotten pregnant or sick or have left like the last one.
I honestly feel like they want to stabilize me with medicine rather than with the right support. And, for what it’s worth, I’m not very stable as is. Never was. Not with five different medications, many of which on high doses.
This post was written for John Holton’s Writer’s Workshop, for which one of the prompts is to pick a line from a song you like and use it as the title of your post. I picked the line “Stabilize with medicine”, which I’m not sure is a full line, from the song Serotonin by Girl in red. This song is rather explicit, so I hope John doesn’t mind me sharing it in his challenge.
A Multitude of Musings 
Sounds to me like they need to pay closer attention to the kidney function. Thanks for participating!
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They certainly should. It’s really annoying that I get bloodwork done only once a year and they actually, when I was worried, told me that kidney disease doesn’t become a problem until your egfr is below 30 (it was 66 at the time, above 90 is healthy). Well, in case you don’t know, below 15 means dialysis or kidney transplant. An egfr of 66 doesn’t warrant treatment with meds yet, but it certainly is worrisome in the sense that meds that affect kidney function need to have their dosage adjusted. Which they weren’t in my case.
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that is a bit annoying, and I hope you don’t have further decreased kidney function! Fingers crossed!
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Thanks. I hope so too.
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I hope you can get them to monitor your blood work since there will not be a med change for a while. Thanks for sharing the song… first I have heard it. I listened to it and then went to a lyrics video to see the lyrics too… I can relate. Be well!
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Thanks for your kind words. I really hope they will reconsider my not tapering my meds especially if my bloodwork comes back the same or worse than last year, because honestly if we’re waiting for the team to be stable we might just as easily wait forever. I’m so sorry you can relate to this song. I can to an extent too.
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Yeah temp workers are becoming the norm in some businesses, you want things sorted out now not later, I get that. There are some who think medication is the only way to go and they are wrong, they think medication is the bees knees and it can be but not on its own. Our kidneys are sensitive to medication and we need to keep that in check
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Agree 100%. I mean, I would’ve seen their point if the meds were truly effective, but I’ve been struggling badly for years. I honestly don’t see whymoderately stressful life circumstances should mean I can never change anything about my health, especially since my life is always moderately stressful due to the nature of my living in a neurotypical world as a neurodivergent person. I can see why meds have their place in helping me function better in this neurotypical world, but at this point the risks outweigh the benefits.
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Medication is great when it works and really helps and yeah there can be times when the risks outweigh the benefits, you would discuss it with a professional if only you could, is it any wonder so many people mess around with dosage and such without speaking to the professional. My mum often messed with my parents medications increasing or decreasing if she thought it was needed then she would tell their GP what she had done and he never once thought she had done the wrong thing.
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Yes, I see your point and completely understand your Mom too. I’m trying to get in to see the physician myself, because I may not have said this but this decision was made without my input and relayed to me over the phone. I actually have every right to refuse my medication, but I’d rather go the cooperative route.
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I have a problem with kidney disease. They labeled it stage 2 the last time they were worried about it. I seem to be stabilized for now, but I am on liquid (I can’t think of the word I want, but I can’t have more than 50 ounces per day), and I am on a water pill which makes me pee what little liquid I get out. Now, I am living in an assisted living facility, and my health is not well managed at all. That is both physical and mental health.
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I am so sorry about that. I know at least for me I would be worse off if living independently vs. now that I’m in a care facility but still it sucks. My mental health isn’t stable at the moment, but it wasn’t when I was on a higher dose of medication either. My decreased kidney function doesn’t warrant treatment with medication (at least didn’t at the time of my last bloodwork a year ago), but I don’t want it to get to this point either. I’m not even forty, for goodness’ sake.
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You are worse off then I. I am in my later 60s and I have so many things wrong and cannot live alone either. The care here sucks though.
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That’s so tough. While I understand your point about my having it worse because you’re in your late 60s, I think poor quality of care sucks regardless and my physical health is probably better than yours.
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I’m so sorry to hear this. They should be responding to your needs right now. I have so many side effects to medications for depression and we still haven’t found one to work. Actually seeing my doctor tomorrow. You are in my thoughts and prayers.
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Thanks so much for your kind words. Good luck on your doctor’s appt! In my case, the side effects would’ve been sort of tolerable had my medication actually been effective, but it isn’t. I finally put my foot down yesterday and will now have a meeting with my intellectual disability physician, a behavior specialist (not the one normally responsible for my care) and probably one of my staff.
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I’m glad you are getting that appointment. Praying it goes well for you.
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It went quite well indeed. Thanks for the prayers.
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