Category: medical care

SoCS: crumpled?

I remember reading Linda’s prompt for Stream of Consciousness Saturday yesterday and thinking that I would pass this week because absolutely nothing came into my head, but, this morning, as I lay crumpled on my bed because taking a shower was too tiring and I’m trying to rest so I can participate in a poetry reading this afternoon, I thought I should post because I thought the prompt word was crumple but it was actually crackle, so never mind.

Yeah.

Brain fog.
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Please join us for Linda’s Stream of Consciousness Saturday! Details at the link above.

diagnostic progress

I’ve posted variously over the last year about some health problems I’ve been having with a puzzling combination of symptoms, including left-side tinnitus and visual blurring, balance problems, fatigue, brain fog, and left shoulder/neck pain and stiffness.

I’ve been accruing specialists over the last year as we ruled out diagnoses for various body parts but I have always felt that my symptoms were connected because they developed in the same timeframe and seemed to interact with each other. I also, for family history reasons, suspected that there was an underlying connective tissue disorder.

Over the last few weeks, we’ve made some progress on the diagnostic front. I’ve finally been diagnosed with cervical instability, which, when not caused by trauma or Down’s syndrome, is often associated with connective tissue disorders like hypermobility spectrum disorder.

I also had a CT angiogram which resulted in a diagnosis of fibromuscular dysplasia in both internal carotid arteries. This is caused by a problem with the connective tissue within the blood vessel walls. There’s a likelihood that it is affecting other blood vessels, which may be behind some other symptoms in far-flung parts of my body.

At this point, I need to go to a major medical center for further evaluation and, I hope, some relief from symptoms. FMD is not able to be treated directly but there may be some treatments that will improve bloodflow and reduce risk of complications. Fortunately, a college friend who is on the faculty at Columbia University medical school in New York City was able to connect me with their neurology department and I will have a visit there later this month. A team approach is often needed for FMD – and connective tissue disorders, in general – so I may well wind up with a medical team in NYC which will interface with my team here at home.

Thanks to all of you who have been following along on this medical journey and sending me your well wishes and support. I’m likely to be continuing my rather sporadic posting as symptoms allow. For example, the angiogram caused some unforeseen aftereffects that knocked me out for several days and I’m still more limited than I was in terms of energy and clarity. I appreciate your continuing patience with me as I navigate this uncertain time.

Reblog: Poem by Deborah Marshall

I had to share this heart-breaking poem from fellow Boiler House Poets Collective member Deborah Marshall in the Silver Birch Press ALL ABOUT MY MOTHER series. Anyone who has been a care-giver for a loved one with dementia will likely find resonance with this achingly real scene.

Day 15, Bed 201B, Granger 2 by Deborah Marshall (ALL ABOUT MY MOTHER Series)


This has been one of the longest-running series for Silver Birch Press. You can find my post about my own entry here.

end of #JusJoJan

Just Jot It January is ending with a whimper for me.

I had to visit the urgent clinic yesterday evening and barely managed not having to report to the emergency department at the hospital. I need to follow up with my primary care first thing this morning, though, so I’m getting this post out just in case I do wind up needing further treatment in the light of day.

Thanks for all the well wishes, thoughts, and prayers you have been sending my way.

Joanne

To join in on this last day of Linda’s Just Jot It January, visit here: https://lindaghill.com/2025/01/31/daily-prompt-jusjojan-the-31st-2025/

getting there…

I’m slow to recover from my angiogram on Monday. I will, though, be heading to physical therapy early this morning, which will be the first time I’ve left the house. Later in the day, I have a phone appointment with my insurer, who may finally have account numbers for me. Fingers crossed!
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There’s still time left to join in Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2025/01/30/daily-prompt-jusjojan-the-30th-2025/

angiogram update

Yesterday, I had a bilateral cerebral CT angiogram.

It went…okay-ish?

There were some less-than-optimal parts, like needing three attempts to get an IV started in the right location, getting twice the usual dose of sedation meds and still not really being sedated enough, and having a bizarre side effect afterward that involved seeing brightly-colored geometric shapes in my peripheral vision that weren’t there.

The doctors performing the procedure said they didn’t find anything abnormal, which was upsetting when I thought I was finally going to get an explanation for what has been going on for almost a year now. I realized today, though, that I don’t have the full results yet because those will come from the radiologist who has to review all the CT images.

So, maybe, tomorrow or later this week, there will be some answers?

Here’s hoping…

Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2025/01/28/daily-prompt-jusjojan-the-28th-2025/

SoCS: what I’ve sunk to

I am having real trouble keeping things in line.

Until last spring, I was used to having days that were fairly busy with activities, errands, and writing. Granted, I did need to use a calendar to keep everything in line but I had the wherewithal to keep up.

And now I don’t.

This last week has been particularly challenging.

The current theory, for which there is quite a lot of evidence, is that I’m having some blood flow issues that are keeping me from getting enough blood to my brain and perhaps my left arm. I’m scheduled to have an angiogram on Monday to look into my blood vessels and see if there are any compression areas or blockages. It will be diagnostic, so we might finally be able to figure out what is going on and what we can do for treatment.

I admit that, until yesterday, I had hoped that they might be able to treat whatever they find during the angiogram. I fantasized about coming out of the sedation without the constant buzzing in my left ear that has been there since last March.

But, no.

It hasn’t helped that the transfer of my health insurance after B’s retirement has not gone smoothly. I do have insurance in effect but I don’t have the account numbers yet. Yesterday, they almost cancelled the angiogram because of it. I told them I would let them bill me directly so that they would go through with it.

The extra stress has not been a lot of help.

My fatigue has gotten even worse. I had hoped that I could rest this morning so that I could go to a poetry reading and church this afternoon but I have to face the fact that I can’t. I’m writing this from bed because even sitting in my recliner seems like too much work right now.

My new weekend plan is to lie down as much as possible and rest so that I can get through getting to the hospital for my test Monday morning. It’s likely I’ll be there the whole day but should be able to come home by evening.

Maybe, finally, with a diagnosis.
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Linda’s prompt for Stream of Consciousness Saturday this week is “in line.” Join us! Find out more about SoCS and Just Jot It January here: https://lindaghill.com/2025/01/24/the-friday-reminder-for-socs-jusjojan-2025-daily-prompt-for-jan-25th/

getting sketchy

So, things here are getting pretty sketchy. I have an angiogram scheduled for Monday but am feeling increasingly unwell, which may or may not be related to the purpose of the angiogram.

I’m still hoping to attend a poetry reading that is important to me tomorrow afternoon, but will have to wait and see what kind of day tomorrow is.

At this point, I’m planning to continue to post every day for Just Jot It January but if I just post the word “Jot” at some point, you’ll understand that that is all I can manage.

I have physical therapy this afternoon. Maybe that will help…

Find out more about #JusJoJan here: https://lindaghill.com/2025/01/24/daily-prompt-jusjojan-the-24th-2025/

2024/5

In late December/early January, many people look back over the year, reflect on its highs and lows, or create some kind of tally.

Sometimes, tallies are created for us, such as Words With Friends, which I have played for 13 years, helpfully telling me I made 8,875 moves in 2024. In my early years of WordPress blogging, they would send us each an annual wrap-up, which I enjoyed. Theoretically, I could put some stats together myself, but I don’t have the wherewithal to manage it.

Some of my poet/writer friends would tally their publications – and rejections – for the year. Given how 2024 went for me, the lists of both would be short, as would the list of completed poems, although I am very grateful that I managed to attend the Boiler House Poets Collective week-long residency at The Studios at MASS MoCA.

My 2024 was mostly taken up with personal and family health issues and my spouse B preparing for his retirement from IBM, which has now happened.

We begin 2025 in uncertainty. With daughter T and I still struggling to find full diagnoses and treatment, what we had imagined B’s retirement to look like is not going to be enacted, at least, not right away.

None of this is helped by the huge uncertainty about what will unfold when DT becomes US president again on Jan.20.

My father used to say “One day at a time” a lot. I am, though, by nature a planner, so I had trouble with the concept.

Now, sometimes, I feel that things are moment-to-moment or that time is somehow suspended or irrelevant.

So, yeah, 2025.

Guess I’ll strive for one day at a time…
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Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2025/01/07/daily-prompt-jusjojan-the-7th-2025/

SoCS: still behind

If I looked back through my ten plus years of posts here, I’m sure I would find plenty that talk about my being behind on posting and lots of other things.

Even though I’ve tried to pair down on my commitments, I never seem to be caught up.

Dealing with my health over these last ten months, things have gotten way worse. I feel like I am only handling about a third of what I used to do – and, some days, not even that.

I’ve cut out a lot of tasks, assuming I would get back to them when I was better.

Now, I wonder if these cuts will be permanent…

At some point, if I re-define what I should be doing, maybe I won’t be behind anymore.

That would be novel…
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Linda’s prompt for Stream of Consciousness Saturday this week is “in front/behind.” This post also is part of Just Jot It January. Find out more here: https://lindaghill.com/2025/01/03/the-friday-reminder-for-socs-jusjojan-2025-daily-prompt-for-jan-4th/