Category: medical care

One-Liner Wednesday: Project 2025 and mifepristone

Project 2025, the lengthy document spearheaded by the Heritage Foundation to lay out plans for the “conservative president” they expect to be elected this year and which mirrors Trump’s Agenda 47 and the Republican party platform, would direct the FDA to reverse the current approvals of mifepristone nation-wide, restricting medication abortion, miscarriage care, and other uses, even though the medication has proven to be safe and effective. (p. 458)

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2024/08/14/one-liner-wednesday-closed-for-the-season/

health update

I thought I’d do a brief update on my health status, despite still being in the middle of the diagnostic swamp.

When I wrote my last update, I had not yet started vestibular therapy or had my hearing test. The hearing test ruled out hearing loss as a cause for the tinnitus. I’ve been making progress with vestibular therapy and my balance is improving, although fatigue or being out in the summer weather aggravates things considerably.

It’s looking increasingly like the basic problem may be in my neck, so I have just begun physical therapy on my neck and we are looking into referrals to specialists who might be able to arrive at a diagnosis.

Meanwhile, I’m continuing to operate at diminished capacity. The tinnitus remains constant. There is still a lot of fatigue and brain fog and some periods of fuzzy vision. The neck pain, headache, and tingling come and go. I have to be careful not to do too much on any particular day and sometimes need naps. I am cutting back on my responsibilities and activities, which is frustrating.

Stay tuned…

Vote for Democracy ’24 #11

a week after the first debate

(Photo by Lucas Sankey on Unsplash)

I watched the first presidential debate on June 27 with my family.

To me, the clear loser in the debate was Donald Trump because he told dozens of easily identifiable lies and didn’t answer many of the questions. He also tried to take credit for some accomplishments of President Biden.

As soon as President Biden started speaking, it was obvious to me that he was ill. He also was rushing his answers, probably in an attempt to pack as much information as possible into the two-minute allowed response time. As Trump threw around lies and accusations, Biden tried to respond to those plus answering the given question and his well-known, long-standing problems with stuttering kicked in, making some of his answers a jumble.

Since then, there has been a large-scale, public freak-out about whether Biden is too old to seek another term, even though Trump is only three years younger and doesn’t lead a healthy lifestyle. Biden’s latest annual physical exam report, dated Feb. 28, 2024, shows that he has no major neurological conditions and that his gait issues are from arthritis in his back and hip, along with some neuropathy in his feet. There is no comparably detailed health report from Trump.

Some of the criticism of Biden makes me wonder if those voicing it spend time with elders. For example, collagen levels decrease with age and this makes one’s face look older. So, yes, at 81 and a healthy weight, Biden’s face looks like he’s 81. It doesn’t mean he is cognitively impaired. Yes, he moves more slowly, as you would expect from someone with that level of arthritis. The presidency is not a footrace. If it were, Franklin Roosevelt would never have been elected.

I appreciate Biden’s wisdom, experience in government, decency, empathy, and compassion. His life journey has been long and he has faced more than the usual share of personal tragedy. He has assembled a very good team of advisors and Cabinet officials. It’s true that his debate performance was terrible but, as President, one is always surrounded by policy experts, advisors, and research documents and doesn’t have to answer questions with a time limit and no notes while trying to rebut lies.

I don’t know what will happen at this point. Biden is determined today to stay in the race but, if he does step aside, Vice-president Harris or whomever the Democrats nominate will have my support and vote.

It will be a vote for democracy.

I won’t vote for Trump because he is an immoral, lying, convicted felon who doesn’t care about our country and its laws. I also won’t vote for anyone who supports him or puts their political party above the laws and the people of the United States. This is especially important after recent decisions by a corrupted Supreme Court. That’s a post for another day.

Today, as we celebrate the anniversary of the Declaration of Independence, let’s renew our commitment to each other, to democracy, to our Constitution and laws, and to our highest ideals. Let’s resolve to vote only for candidates who share those ideals and seek to serve the country, not those who seek only to enhance their own power and wealth and that of their rich cronies.

Together, we can keep our democracy vibrant and ready to add more centuries to the 248 years the United States celebrates today.

grossly unremarkable

Ugh! I’ve been putting off writing a health update post, hoping to get to a more definitive place before sharing but it’s taking long enough that I figured I better try.

Regular readers may recall that I started having trouble with tinnitus on my left side a few months back and wrote more about it on Mother’s Day. An MRI had been scheduled for June 21 with a hearing test to follow the next week.

Unfortunately, I was accumulating more symptoms on my left side, some visual difficulties in my left eye though the eye itself was fine, pressure or headache behind that eye, discomfort on the left side of my neck, intermittent tingling behind my left ear, a tendency to get lightheaded and feel off-balance, fatigue, and difficulty concentrating, perhaps caused by having to divert conscious attention to things like vision and equilibrium that are usually unconscious. I had been to my primary care provider several times but they needed the information from the MRI before we could proceed further, so the plan was that, if my symptoms worsened, I would go to the emergency room at our local hospital.

In early June, things did get worse. The most alarming part was that the tingling on the side of my head started spreading into my face and toward my neck and became almost constant. I also was having increased problems with my thought processes slowing down as I spent more and more brainpower remembering to move my head and body slowly so that I could keep my balance.

So, B took me to the hospital emergency department, arriving a bit before 9 AM. It was very busy, partially a result (we found out later) of difficulties at a neighboring hospital due to a cyber attack. It was so busy that I spent the first six hours based in the waiting room, going out for various tests and then being returned there. They did a brain CT relatively quickly to make sure I wasn’t having a stroke or some other acute thing. The results came back as “grossly normal” with some aspects being labelled as “grossly unremarkable,” which quickly became a favorite phrase for me, thus, the title of this post.

The waiting room became so crowded that they asked non-patients to leave shortly before noon, unless they were needed for patient care, such as parents of children or people who were acting as translators. So, B had to leave me; he waited at the hospital for most of the afternoon but eventually headed for home.

Mid-afternoon, there was finally a space in the treatment area for me, albeit on a gurney in the hallway, and the decision was made that I needed an MRI – which I already knew because I had one scheduled – but it was too late in the day to fit me in. I got to eat supper and eventually was moved to a room with hospital beds where several of us were on observation for the night.

Or so I thought.

Around 3 AM, I was moved upstairs to a unit that houses neurology patients. Somehow, they seemed to have missed all the stuff that happened in the ER and I had to prove to them that I wasn’t having a stroke all over again. I did have the MRI with contrast in the morning, which also proved to be grossly normal. This was, of course, good news in that it ruled out any tumors in my brain or sinuses, as well as other brain diseases or strokes. However, it didn’t tell us what was causing my symptoms.

The most useful thing that happened was a consultation with physical therapy. Dianne detected that my eyes weren’t tracking as well as they should be. She also did an evaluation for inner ear problems, where crystals in the inner ear loosen and migrate and cause eye and balance symptoms. While I don’t have the most common form of benign paroxysmal positional vertigo, I may have a variation of it with the crystals in a different part of the inner ear canal affected.

The maneuvers that Dianne did with my head and neck during the evaluation did help relieve some of my symptoms. The constant discomfort on the left side of my neck went away and I could move my head more easily. The tingling on the side of my head, which by then was constant, disappeared. Dianne recommended that I see a physical therapist who specializes in vestibular therapy and I have an appointment scheduled for next week. She also gave me an eye exercise to do at home in the meantime and some tips on posture. Additionally, a neck X-ray revealed some arthritis, which will be useful knowledge for the physical therapist.

I was discharged from the hospital that evening. There are supposed to be appointments for follow-up with a neurologist and a referral to an ear, nose, and throat specialist but I haven’t heard when those will be. The tinnitus is still constant and I may or may not have answers about that from my hearing test next week.

Over these last couple of weeks since my hospital visit, the severity of symptoms overall has been creeping higher. The current heat dome that is parked over us here in the Northeast US hasn’t been helpful; I’ve been feeling worse despite staying in our geothermal-heat-pump-cooled home as much as possible.

I’m looking forward to my vestibular therapy appointment on Wednesday, hoping that their experience will make more sense of my situation and maybe even arrive at a diagnosis that will explain some of my symptoms. It’s possible that there is more than one condition going on. For example, the tinnitus could have a cause not related to the possible inner ear issue.

Meanwhile, I’ve had to clear most of my usual activities from my schedule. My lack of concentration is making reading and writing more challenging, which is a shame, given that that is what I usually spend most of my time doing. I will try to do a quick update late next week after my vestibular therapy appointment and hearing test.

Hoping for some good news to share.

Other than being grossly unremarkable.

losing Joan

(Photo by July on Unsplash)

I got news yesterday of the death of a college friend.

Joan and I met in Ron Perera‘s first-year music theory class. Like me, Joan was a western Massachusetts native and a Catholic with close ties to her family. She was a talented violinist. I remember her giving a demonstration to our theory class, showing us all the techniques used to create different sonorities for us to use in our compositions.

For junior year, Joan went to the University of Michigan and decided to transfer there to finish her education. However, “once a Smithie, always a Smithie,” Joan remained a member of the Smith College class of ’82.

Joan went on to a successful career playing in orchestras, concluding with a long tenure with the Kennedy Center Opera Orchestra in Washington, DC. Her performance schedule kept her busy but, two years ago, she was able to attend our 40th reunion in Northampton, visiting family in the area which hadn’t been possible during the height of the pandemic. While we had been keeping in touch over the years, it was the first time in decades that we had seen each other and it was great. We started speculating where we would each be living post-retirement when our 45th reunion rolled around.

Right after reunion, Joan developed COVID. Fortunately, she wasn’t very sick but she was bummed about missing some of her opera performances.

It was a shock when she was diagnosed with acute lymphoma that fall. She immediately began chemotherapy. Due to the intensity of the treatment and her weakened immune system, she had to stay at home, where her husband Paul was her loving and capable caregiver.

In summer of last year, Joan was able to resume performing while her treatment migrated to a maintenance regimen. This January, she was posting about the orchestra.

And, sometime since, her remission ended and the cancer came back with a vengeance.

I didn’t know.

Early this month, I had emailed her some new photos of my granddaughters and Joan sent a reply about how beautiful they are. Sending photos had been something I had done during her home-bound period and continued to do from time to time. I am grateful that I was unknowingly able to add a moment of love and beauty to her final weeks.

Hearing the news of Joan’s death from our Smith friends was a shock and brought waves of tears. It’s also brought to mind this recent Washington Post article, raising the disturbing prospect that SARS-CoV -2 infection may play a role in the development of cancer, particularly rare or unusual ones. It will take years of research to determine whether or not this is the case but the mystery of it all is disquieting.

The final commendation at Joan’s funeral will begin, “May the angels lead you into Paradise.” May there be a beautiful violin waiting for you there, Joan.

(a different) Mother’s Day

In the US, we are observing Mother’s Day today. While its origin was in a call for peace after the Civil War, today it is celebrated as a tribute to mothers of all types and ages.

Since the death of my mother in May, 2019, Mother’s Day has felt bittersweet to me, as it brings back that time when, within two May weeks, there was my mom’s last Mother’s Day, birthday, and the date of her death. It’s complicated further by having daughter E and granddaughters ABC and JG five time zones away.

This year has brought the additional worry of a family member’s upcoming surgery and the possibility of an underlying disorder yet to be diagnosed.

Then, there is the general upheaval in the US and so many other places in the world, war, hunger, the climate crisis, disasters, and I will end the list here, but we know it is much longer.

It’s a lot with which to contend and I’m not coping very well.

I mentioned in a Stream of Consciousness Saturday post in mid-April that I was hearing a sound in my left ear. This, along with some additional symptoms, has led to several primary care visits, a diagnosis of tinnitus, some attempts at treatment, and, on Friday, a decision to order an MRI to rule out various tumors or other abnormalities.

Of course, there is the possibility of not “ruling out” but discovering.

I admit that I’m struggling. I’m practiced with blocking things out or setting them aside to concentrate on caring for family members. Part of my problem right now is that the timing is unfortunate as I am the main driver and errand-runner and don’t want to be out of commission when I’m needed to help with surgical recovery and follow-on medical appointments. I know spouse B will drop everything at work to take care of things but I also know that his project is in a critical phase right now.

I need humility, trust, and the grace to step aside and let others take over the work I should or have been doing and put other things aside for a while, but it’s hard and I’m worried and tired.

Maybe they will examine my head and not find anything.

Wait. That doesn’t sound right.

Maybe they won’t find anything dangerous.

Maybe, I can get a grip when the MRI is actually scheduled and on my calendar. After all, this is not my first rodeo with medical mystery ailments. Some of them have even been mine. I’m just more annoyed with my own. I know I need to channel some of the compassion I have toward others and apply it to myself.

And maybe take a nap.

It’s been helpful to write this down. I am questioning whether or not it is wise to post it, but have decided to do so because authenticity is part of the charm? hallmark? conceit? of Top of JC’s Mind.

And, yes, it’s Mother’s Day and B is making lamb spiedies and grilled asparagus with his homemade tiramisu for dessert.

And there have been sweet cards and a present.

And the lilies of the valley are starting to bloom.

They were my mother’s birth flower and a favorite of hers.

The photo is from my mother’s 87th and last birthday, lilies of the valley from our yard and cards from my father and their artist-friend Jim.

Miss you today, Mom.

SoCS: sound

I have a sound in my head.

Well, maybe just in my left ear.

I was hearing a thrumming sound and I thought it was from wall vibrations from our radon removal system but that is fixed now and the sound is still there.

If it doesn’t resolve soon, I’ll contact my doctor…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is to use a word that ends with “ound.” Join us! Find out more here: https://lindaghill.com/2024/04/12/the-friday-reminder-and-prompt-for-socs-april-13-2024/

19 years ago

About my friend Angie.

(Hearts graphic by Angie Traverse)

Nineteen years ago today, my friend Angie died from lung cancer. She was only 54. She had never smoked or lived in a house with high radon or worked in a place with known carcinogens but, by whatever combination of genetics and living, cancer appeared and was diagnosed when she was fifty.

She was treated by some great doctors locally and in Boston and she fought hard for four years and some months, but passed away on Good Friday, 2005.

There have been a lot of developments in cancer treatment since then, some of which are advertised on television. I often wonder if any of those medications would have helped Angie live longer and better.

For years, I made contributions on March 25 and on Angie’s October birthday to the charitable fund established in her memory but, a few years back, the online page went away. Now, I just remember and write an occasional post. One of my favorite Angie posts is this one, written when I turned 54.

That year, I also wrote a poem about Angie, which was published by Wilderness House Literary Review:

Fifty-four

We were the October Babes,
You from 1950,
Me from 1960.

On your fifty-fourth birthday,
You managed coffee ice cream with hot fudge
Despite the metastases in your neck.

On my fifty-fourth birthday,
I raise a solo toast with your favorite Coke-with-a-lemon-wedge
To the October Babes being fifty-four together.
*****

This October, God willing, I will turn 64.

I wish Angie were still here, as an about-to-be 74-year-old grandma, mom, artist, and dear friend. The world could use her compassion, creativity, and spirit right now.

COVID into the fifth year

Four years ago, here in the US, things were pretty much shut down due to the COVID-19 pandemic. B was working from home. I was the household’s designated shopper and would go, masked, to the grocery store every other week to stock up, although I’d sometimes have to visit more than one store because supply was a problem. We managed to keep ourselves safe, although we were horrified at the death toll in the US and around the world and at the people who became very ill. Over time, we also saw that some people had lasting damage to their lungs or other organs and others had symptoms that debilitated them for months.

Now, things are much better, due to vaccines and other precautions that have cut down on serious illnesses, although the US has slipped on vaccination, even as the virus has mutated in ways that make SARS-CoV-2 more infectious and immune-evasive. There are still way too many people getting sick and suffering long-term damage or death. While there are studies and some treatments on-going, there are still a lot of people suffering from long COVID.

We finally had our first case of COVID in our house last November, when B contracted it at a rare, in-person event for work. He isolated in part of our house and daughter T and I remained infection-free.

I don’t know how much longer we will be able to manage that status.

I was disappointed when the Centers for Disease Control and Prevention changed their guidance about isolating when infected with COVID. The new recommendations are for respiratory viruses in general and say that people can resume normal activities when their symptoms are improving and they have been without fever for 24 hours without being on fever-reducing medication. People are supposed to use masking, distancing, and other strategies to protect others from infection for five days afterward.

While I appreciate CDC’s reasoning, which is based on statistics, I don’t find it personally useful. It is typical that a person with COVID is infectious for ten days. It’s entirely possible to be fever-free and have improving symptoms and still be infectious. I’m afraid that most people won’t hear or won’t follow through on the part of the recommendation for masking and taking precautions to avoid exposing others after they leave isolation. This is especially troubling to me because so many people are not current on their vaccinations and/or are vulnerable due to age or health conditions. It’s great that the immunity level in the population halved the rate of serious illness and death, but that’s cold comfort if you expose a loved one, neighbor, co-worker, etc. and they become seriously I’ll or die.

If/when I contract COVID, I will isolate and mask until I test negative and am reasonably sure I can’t transmit the virus to anyone else. I want to protect my family and my community, especially our elders and those with medical issues, from contracting a virus that could cause them severe symptoms.

Please remember, when you see someone wearing a mask in public, to be kind and understanding. It’s entirely possible that they are trying to protect your health, not just their own.

(COVID Photo by Martin Sanchez on Unsplash)

JC’s Confessions #29

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, then a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.

It’s been a hard few months.

More than a few?

Hard to keep track…

When I wrote this post at the end of October, I was re-organizing to structure my time for more poetry and less volunteering, but B’s COVID diagnosis in November, which turned into two weeks of him isolating in part of the house, leaving me responsible for keeping the household going, followed by daughter T’s shoulder surgery/aftermath in December left me with a lot to do, not a lot of holiday spirit, and very little creative brain availability. Thrown on top of this was the unexpected return of the threat of shale gas development, which we thought had ended with the New York State high-volume hydrofracking ban nine years ago, this time in the guise of an unproven scheme to use supercritical carbon dioxide to extract methane from shale and sequester carbon. This necessitated the reactivation of the coalition that won the fracking ban back then and hours of conference calls, research, and emails. Oh, and what I thought would be one or two local interviews for my alma mater turned into a series of zoom interviews across the region, taking a lot more time and energy than I had expected when I said yes to the opportunity. (There’s also some other personal and family health stuff going on, which I won’t go into here.)

I’ve been struggling with prioritizing and keeping my attention where it belongs to finish tasks. My best intentions to simplify have met with the reality tsunami and washed out to sea.

I am, though, not suffering as much as I was last January when I wrote JC’s Confessions #26. Then, I realized I was still grieving. I am in a different place in dealing with losses now.

We are spending a couple of weeks in February visiting our family in London, UK. This will get me away from most meetings. If I’m lucky, I’ll get a little bit of poetry time in the early mornings or late evenings to continue work on revision of my full-length manuscript. I’m attempting to line edit the whole thing and, perhaps, re-order it to prepare for work with a professional editor in April. It’s felt like fits and starts so far but I have worked on about 20% of the poems to this point.

I have followed through on my commitment to post daily for Just Jot It January but will be pulling back the post pace for February and trying to devote that time to poetry.

So, yes, organizing my time and following through on plans is still a work in progress.

And, come next January, there is a possibility that some version of this Confession will recur.

Or, maybe, I’ll finally stop feeling badly about having to re-vamp, re-adjust, postpone, and re-jigger my life so often.

I can hope.
*****
Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2024/01/28/daily-prompt-jusjojan-the-28th-2024/