Category: medical care

Twenty years ago

(Hearts by Angie Traverse)

Twenty years ago today, my friend Angie died.

We had met when we were volunteering at the middle school our children attended. Angie was kind and caring and funny and talented and we became friends, although she had a plethora of friends already. Because we were both doing volunteering and taking care of family, we had the flexibility to meet for lunch and chat or work on committee projects. Because Angie’s good will also embraced family, she got to know my parents.

We thought that, one day, we would become grandparents and have multi-generational hangouts.

Unfortunately, a nagging cough when Angie was 50 turned out to be stage 3 lung cancer. It was a shock because she had never been a smoker. Despite all the best efforts of her medical team, the cancer eventually progressed and took her life at 54.

March 25th was Good Friday that year.

There was a charitable fund set up in her name and, for years, I gave to it every year on March 25th and on her October birthday. The last few years, though, the website has disappeared. I think the fund probably had enough contribution for it to be endowed so its work can continue.

I’ve written about Angie before here at Top of JC’s Mind and even had a poem published about our friendship and her loss.

I didn’t know it at the time, but Angie’s death was followed by the loss of my long-time parish community and the death of B’s dad, the first loss of a grandparent for our daughters.

2005 became one of the worst years of my life.

I fear that 2025 may be even worse, especially when I look at what is happening in the United States as our democracy disintegrates and damages lives here and abroad.

Personally, this will be the year where we figure out what is going on with my health and address it or the year where I have to deal with giving up what I thought my life as an elder would be.

A small problem when people are dying or being threatened or losing family members because Trump/Musk/Vance et al think they can break laws, norms, and ethical obligations and concentrate all power in the executive branch.

I am sorry that I am too weak to be out on the streets for protests and have to confine my activities to online posts and messages and phone calls.

I’m hoping we can turn 2025 around after these horrible last couple of months.

Trying – while mourning for those who have been hurt.

And still, twenty years later, missing Angie.

SoCS: calendar

My calendar used to be filled with meetings, volunteer gigs, poetry workshops and readings, family events, and music rehearsals and concerts.

Now, it’s mostly medical appointments.

I am still holding on to singing with the Madrigal Choir of Binghamton. We are coming up on performance week, which will be a challenge with my diminished energy.

Maybe this next round of tests and specialists will get to a full diagnosis and some kind of treatment to improve my situation. I know that it is unlikely to be fully reversed but I’m trying to retain hope that I can bring back the most important abilities and activities I can’t manage now.

If that happens, maybe my calendar will have somewhat fewer medical appointments and more poetry – with some more travel to see family and outings with friends.

Maybe that can even happen later in 2025.

It depends on what happens with the tests and doctor visits that are in those calendar boxes this spring…
*****
Linda’s prompt for Stream of Consciousness Saturday is “calendar.” Join us! Find out more here: https://lindaghill.com/2025/03/21/the-friday-reminder-and-prompt-for-socs-march-22-2025/

5 years of COVID-19

(COVID Photo by Martin Sanchez on Unsplash)

The COVID-19 pandemic shutdowns began in the United States five years ago this month. I’ve written a lot of posts about it over those years and I’m proud to say that they have been added to the archives of the Newark Valley (NY) Historical Society to be preserved for future research.

To date, there has only been one case in our household, when B contracted it at a work event in November, 2023. Fortunately, T and I did not get sick.

All three of us participated in Phase III clinical trials for the Pfizer/BioNTech vaccine and have kept up to date on recommended doses as the virus has mutated into new variants over these past five years. We’ve also taken other precautions, such as masking and avoiding crowds when virus levels are high. Admittedly, it’s been harder and harder to get information about virus levels in our area as the public health emergency lapsed and reporting became optional.

I do still get some public health and long COVID newsletters that give some information. I found out today, for example, that there is a new variant, BA.3.2, in South Africa that has 50 new spike mutations. It could stay localized and fizzle out; if it out-competes other strains and spreads, it could create a wave similar to Omicron.

As far as the United States goes, I’m concerned that the vaccination rates are likely to fall even further with a vaccine skeptic now in charge of the Department of Health and Human Services. The United States has already suffered over 1.2 million deaths from COVID with millions more dealing with long-lasting health repercussions. Vaccines can help people avert more severe symptoms and decrease the chances of being infected but work best if a large proportion of the population are vaccinated. This also helps protect people who have more fragile immune systems, such as the very young, elders, and people with compromised immune systems.

I believe that information is power, but it needs to be factual information, not wishful thinking or political posturing. We can’t pretend that the virus doesn’t still kill or sicken people and that the United States is not continuing to lose hundreds of people each week due to COVID-19.

To deny the existence of COVID and/or its impact on our lives dishonors those we have lost, those who have been sickened by the virus, their loved ones, and their communities.

Take care of each other and do what you can to keep us all as healthy as possible.

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.
*****
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!
*****
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.
*****
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/