SoCS: my year

My year has been a mess.

(It’s probably dangerous to write about it in stream of consciousness but here goes…)

2024 has been largely spent trying to untangle personal and family health situations. In March, I developed a constellation of symptoms, including left side tinnitus and visual blurring, left side neck pain and stiffness, numbness/tingling most prominently on the left side of my head, balance problems, and brain fog and fatigue.

There has followed a bunch of tests, specialists, and physical therapy – with weeks and months of waiting – and a lot of ruling out of diagnoses, but no answers yet.

Given family history and my own research and trying to pull together all the scraps of information I get from my care team, I think I have a decent guess on diagnosis but it doesn’t really matter unless I can find a doctor willing to look at the whole situation instead of their own specialized body part.

Meanwhile, I’ve lost almost a whole year of poetry work. My creative brain isn’t functioning most days. Sometimes, I get a window first thing in the morning but often not. I’m spending most afternoons in bed because of the fatigue and because it is difficult to hold my head up without support for extended periods. If I push through and do too much on a day, I’m likely to pay for it by being largely non-functional for a day or two or three or a week afterward.

I’m also lacking in my ability to remember and keep track of things. My critical thinking skills are slowed down, too. I try to do tasks that involve a lot of thought early in the day to have the best chance of remembering and piecing things together.

It’s sad and terrifying and frustrating.

I feel like a lot of who I know myself to be is missing and I don’t know if or when it will be back.

A recent test seems to show poor blood flow in one of the arteries that supplies my brain. I’m hoping that this might give us a treatable thing to work on but I’m currently waiting for the appointment with the specialist who can interpret the test. There will probably be more tests before we get to the diagnosis/treatment part.

I don’t know if 2025 will bring my brain back or if I will be facing further deterioration.

I’ll try to let you know…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “my year.” Join us! Find out more here: https://lindaghill.com/2024/12/27/the-friday-reminder-and-prompt-for-socs-dec-28-2024/

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Author: Joanne Corey

Please come visit my eclectic blog, Top of JC's Mind. You can never be sure what you'll find!

19 thoughts on “SoCS: my year”

  4. I hope you get answers and treatment options soon. One of the things we do in theatre that I carry over into life is the concept of a “running list.” On a show, the running list would be the list of tasks/changes/details in order, so for someone like me, who was often a swing and moved between tracks, I could always refer to it and see “what comes next.” I often carry that over into life now, when I’m juggling projects. It lacks the pressure of a To Do list, but holds the basics to keep me on track for a day, and there’s comfort in feeling certain daily tasks get into the body (sense memory has a lot to do with working backstage, and muscle memory). We do something similar now for my mom with a daily whiteboard, where the tasks are listed and she crosses them off as she does them, so she doesn’t have to worry about whether she remembered to take that pill or did she feed the cats this morning or last night?

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    1. Thanks, Devon. I appreciate the running list concept. I love the utility of it and can certainly appreciate the whiteboard check-off aspect. Trying to keep lists in my head is difficult for me now…

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  5. Joanne, I’m sorry to hear what you are going through. Here’s to improvement in 2025, as well as happiness, whether poetry gets written or not. You are the poem and always will be. With warm wishes for the new year,Anne

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    1. Thank you so much, Anne. Tearing up as I read this…

      All of this was starting as I was trying to re-edit my full-length collection, which I’ve started to send to a few places even though I didn’t have a chance to workshop the revisions. Part of the reason I’m hoping for some prognosis soon is that I need to figure out if I should keep on sending it out or publish it by other means. I don’t know if I will have brain enough in the several years it may take to get it out through traditional means.

      For now, I will try to remember your words, “You are the poem and always will be.”

      Wishing you and yours all the best in 2025!

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  7. I’m very sorry you’ve been going through such hard challenges. I can see signs your problem solving skills are still there by how you organize your time. Keep on advocating and getting others to advocate for that “doctor willing to look at the whole situation instead of their own specialized body part.” I’m hoping you find someone who can pull it all together and consider your ideas as to what’s going on. I’m assuming you are keeping your own health journal or something like that. That’s a goal of mine. I’m saying a prayer that you get helpful answers and effective treatment.

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    1. Thank you, JoAnna. I’m grateful to have the help of a nurse advocate from our insurer to help with arranging second opinions and, perhaps, referral to a major medical center. Meanwhile, I have another specialist coming on board later this week and on the questionnaire I’ve filled out, they actually ask what I think could be possible causes for my symptoms. I’m not sure, though, that that even gets reviewed before the appointment. We’ll see.

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        1. I admit that the brain fog that gets worse in the afternoon, on top of my naturally-slower INFJ thought processing, may interfere. This doctor may, though, be more attuned to my problems, though, especially because there is evidence of a blood flow problem to my brain.

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