Category: medical care

aftermath of a busy weekend

This weekend, I did a lot of board/committee work for the Madrigal Choir of Binghamton, plus a rehearsal for spring outside gigs with our small group.

I had PT this morning and did a couple of errands but now I am lying down and expect to be in bed all afternoon.

With hEDS, these things can happen. You can sometimes tough your way through a couple of days or events but you wind up paying for it later.

It’s a balancing act.

This jot is brought to you as part of Linda’s Just Jot It January. Join us! Find out more here: https://lindaghill.com/2026/01/19/daily-prompt-jusjojan-the-19th-2026/

a diagnosis (finally)

While I would usually be posting on the Stream of Consciousness Saturday prompt today, I’m opting instead for doing an edited Just Jot It January post.

Okay, this is going to be more than a “jot” but will be something that I feel compelled to give an update to the usual crowd of SoCS participants.

Since March, 2024, I’ve been having a growing array of odd symptoms – I won’t bore you with the whole list – that have been interfering with my ability to function. The brain fog and fatigue have been especially problematic.

I’ve posted variously about these symptoms and their impact on my life. Along the way, I’ve been diagnosed with a number of conditions that affect a certain body part or system but have always felt that these different symptoms were related.

This week, I finally have an answer. I’ve been diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is an inherited connective tissue disorder. Because we have connective tissues throughout our bodies, it impacts many different parts and systems of the body. Each individual with hEDS has their own unique combination of symptoms which may change over time. While hEDS follows an autosomal dominant inheritance pattern, the specific genes underlying it have not yet been identified. Because there is currently no test that detects hEDS, it tends to be missed, especially because there is no medical specialty dedicated to connective tissues.

Just in case you were wondering how a 65-year-old gets an initial diagnois of a genetic disorder. My (embarrassingly large) number of medical practitioners have spent the last almost two years ruling out various diagnoses or diagnosing component parties of hEDS without putting all the pieces together. I’ve learned from patient advocacy groups that there are other people who were not diagnosed until their fifties, sixties, or even older.

I actually was pretty sure I had either hEDS or the related condition, hypermobility spectrum disorder (HSD), 19 months ago. A close family member was facing an unusual medical condition that required surgery and her doctor realized that her connective tissues were not responding in a typical way. She suggested that there might be a connective tissue disorder present and advised seeing a geneticist physician. In assembling a full family history and researching hEDS/HSD with my family member, I felt that my body made sense for the first time.

I was excited and told my primary care doctor, but she felt we had to rule out every other possible cause of my symptoms first. Even when my family member was diagnosed with hEDS last June and the genetic connection was clear, my medical team was still not making the diagnosis.

That changed when I was finally able to see a nurse-practitioner who specializes in integrative/supportive medicine. With my records, family history, symptoms, and physical exam, she was able to diagnose me with hEDS and, importantly, to order additional tests to help pinpoint the cause of my current symptoms. She also knows where to send me for treatment, which will be especially important if I need to have surgery.

hEDS affects more women than men, so, no surprise, the symptoms tend to be written off as stress- or hormone-induced. I particularly remember having to explain to a doctor that I could tell the difference between brain fog and writer’s block. I also faced skepticism that I could be this old without any medical professionals realizing I have a genetic disorder, but, as others have pointed out, that should be a reflection on them, not me. Education about inherited connective tissue disorders has been lacking in medical education but I am hopeful that new research will break through and raise awareness so that it’s easier for people with hEDS/HSD to be diagnosed and treated appropriately much earlier in their lives.

I am trying to do my part by sharing my story and accurate information. As my treatment plan develops, I’ll post about it.

I must say, though, that the people who have been most helpful to me have been my physical therapists. Although my lead therapist realized that I have a connective tissue disorder and has been helping me to strengthen muscles and improve my posture, along with heat, massage, and stretching, she isn’t allowed to make medical diagnoses. She is also happy that I finally have an official hEDS diagnosis. The hope is that the additional tests I will now have will give us more data on how best to address my symptoms.

Obviously, a genetic disorder like this can’t be cured, but we should be able to improve at least some of my symptoms. For now, it feels good to have validation that there are reasons why my body reacts as it does. No more doctors implying that it’s all in my head or that I just need to reduce stress. Maybe some of them will even be moved to learn more about inherited connective tissue disorders.

They may even find that there are a lot more of us than they realized…
*****
For more information on joining in with Stream of Consciousness Saturday and/or Just Jot It January, please visit Linda’s blog here: https://lindaghill.com/2026/01/16/the-friday-reminder-for-socs-jusjojan-2026-daily-prompt-for-jan-17th/

tired

I’m so tired today.

It’s been a week with a lot of medical stuff going on. I have some news that I hope to share but it will be complicated and I don’t have the energy to do it today.

Maybe tomorrow.

Or over the weekend.

Or next week.

Hoping it will make it into Just Jot It January, at least…

Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2026/01/15/daily-prompt-jusjojan-the-15th-2026/

SoCS: slowing down

I used to walk fast, partially due to having much shorter legs than spouse B so that even when he would slow down to walk with me, I’d still need to speed up.

Now, I am having a number of issues with my balance and need to slow down so I can concentrate on staying upright and walking relatively straight. Sometimes, I need B’s – or someone else’s – arm to help me stabilize. This is especially likely later in the day as fatigue also becomes a factor.

So, I’m slower these days but grateful to be able to be up and about, at least, on most days.

Linda’s prompt for Stream of Consciousness Saturday this week is “fast/slow.” For more information on how to join SoCS and/or Just Jot It January, please visit here: https://lindaghill.com/2026/01/02/the-friday-reminder-for-socs-jusjojan-2026-daily-prompt-for-jan-3rd/

shutdown aftermath, etc.

Vote for Democracy #49

(Photo by Lucas Sankey on Unsplash)

I’ve been struggling with health stuff again and unable to organize my thoughts well enough to tackle a post on the overwhelming state of affairs in the US but will make an attempt.

There was not really a path for the record-breaking government shutdown to have a good outcome, so it didn’t. The Trump administration cruelly shut off food assistance, even though there were funds available to continue. It did, however, highlight the truly terrible statistic that 1 in 8 people here struggle to get enough to eat. The vast majority of these are children, elders, disabled people, or employed adults. Many employers do not pay wages that are sufficient to cover the basic cost of living, so workers and their dependents need government assistance and/or charity to have enough food. This also means that, even after a lifetime of employment, many retirees don’t have enough income to survive and were never able to save enough to have a cushion for their retirement years. It’s a sign of how warped our society has become that so many are hungry in the richest country in the world. At least in the agreement to reopen the government through January 20, funding was secured for food benefits through September 30.

Meanwhile, it is unclear if the health insurance subsidies for Affordable Care Act marketplace plans will be extended. As people are trying to sign up for 2026 plans, the rates from the insurance companies have risen sharply without the subsidies in place, sometimes doubling, tripling, or worse, which will leave millions uninsured. This, in turn, will drive up insurance rates even higher, as hospitals and doctors will raise prices for people with insurance to try to stay afloat. More rural hospitals, which are already strained, may be forced to close. It’s disgusting that our country does not treat health care as a basic right, denying care to anyone without good insurance and/or mounds of cash.

There has been a lot of talk about who bears “blame” for the shutdown. To my mind, the fault lies with the Repbulicans in both the legislative and executive branches. The budget process should work through the Congressional committees to have the appropriation bills passed and in place for October 1, when the new fiscal year begins. Instead, Repbulicans insisted on ramming through their own proposals rather than negotiating with Democrats and Independents to craft appropriation bills that could pass under regular order. Even when Democrats tried to make proposals, Congressional Republican leaders and the President refused to negotiate. The Speaker of the House went so far as to not even call the House into sessions for weeks, time that should have been spent crafting budget bills so that they didn’t have to rely on short-term continuing resolutions to keep the government open.

Another major problem is that the Trump administration has not been executing laws that Congress has passed. How can Congressional Democrats and the general public trust that the Trump administration will spend the money that Congress allocates when they shamefully cancelled life-saving funds for USAID and other agencies and programs, even ignoring court orders?

There is a Constitutional way to deal with this, impeachment of the president and other members of the executive branch by the House and conviction by the Senate, but the current Congressional Repbulicans won’t take action against Trump, even when he is illegally usurping powers granted to Congress, not the President. Unfortunately, this traps the country in this hurtful, dysfunctional state until, at least, the next election.

It is possible that the Republicans could lost the majority in the House even before the midterm elections next November. If more Repbulicans resign, as Marjorie Taylor Greene plans to do in January, and seats are left open for a time period or if Democrats flip some of those seats, the Repbulicans could lose their majority and a new Speaker would be elected. A Democratic majority could launch investigations and might be able to find enough Repbulican senators to pass bipartisan legislation to better serve the country.

Meanwhile, concerned citizens will continue to protest, boycott, and raise their voices to call for their rights, liberty, and values to prevail, in line with our Constitution and laws. We have sunk so low in the functioning of our national government that it will be a long, hard slog to recover, but we will try. It will be difficult for other countries to ever trust us again, given the immense harm that Trump has perpetrated on the world. All the more reason to get to work now.

JC’s Confessions #33

being high-maintenance

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.

In recent months, I’ve become very high-maintenance.

Not a fan.

My style for years has been no-muss, no-fuss. My hairstyle doesn’t require blowdrying and products. I don’t wear make-up. My clothing style is simple. I can get ready to go out in five minutes or less.

I could spend most of my time and brainpower on more creative endeavors and helping others.

Now, it seems that taking care of myself has become a full-time job.

In attempts to improve my current state of health, there are physical therapy exercises daily and near-constant attention to my posture and head/neck position. Needed rest periods. An increasing complicated array of medications, including one that needs to be mixed in a full glass of water and drunk immediately – four times a day – which makes it a bit tricky if I have to be away from home for several hours. Trying to figure out what to eat and drink when a food recommended for dealing with one of my syndromes is excluded by another to the extent where I sometimes don’t know what to eat. Dealing with my AutoPAP machine. Fussing with dental care and retainers. Going to appointments and tests with so many specialists that I’ve lost track of them all and trying to get information coordinated among them and with my primary care doctor, because, of course, the practices, despite all the electronic records systems, can’t seem to do it. Doing research on the various symptoms and diagnoses and trying to piece everything together.

It’s time-consuming and frustrating and doens’t leave much energy or brainpower for the thousand things I’d rather be doing.

There is some hope.

Lately, my brain fog and fatigue have diminished and it seems that we are finally getting closer to a more comprehensive diagnosis and clinical outlook.

Maybe that will translate into an easier daily regimen.

I don’t think I will ever be low-maintenance again, but maybe medium?

new complications for COVID vaccines in the US

(COVID Photo by Martin Sanchez on Unsplash)

Last week, after reading a newsletter from Your Local Epidemiologist founded by Dr. Katelyn Jetelina, I got a COVID vaccination. I will be going to my annual poetry residency with the Boiler House Poets Collective at The Studios at MASS MoCA in early October and wanted my immunity to be as strong as possible while I’m there.

The newsletter had warned that there might be label changes coming from the US Food and Drug Administration that would impact the availability of COVID vaccines and that it might be advisable to get the vaccine soon, especially for people younger than 65.

I’m glad I took action.

Yesterday, the Food and Drug Administration changed the guidelines, making it more difficult for people under 65 to qualify for COVID vaccines without consulting their doctor. In response, CVS and Walgreens, whose pharmacies are a major source for vaccinations to the public, suspended giving any COVID vaccines to anyone in sixteen states, including mine, unless you have a prescription from a health provider. Part of the confusion is that the Centers for Disease Control and Prevention has yet to issue its guidance and just suffered the loss of its top leadership through firing and resignations, grounded in the fact that they were being pressured to put forward recommendations not backed by scientific research.

That’s what happens when you have a Health and Human Services Secretary like Robert Kennedy, Jr., who does not have a background in medicine and disrespects rigorous scientific inquiry.

The fact is that COVID-19 vaccines have been rigorously tested and are safe and effective, cutting down on infection rates and keeping most people from becoming seriously ill and needing hospitalization. Serious side effects are very rare, so the benefits of receiving the vaccine outweigh the risks.

Tragically, vaccines have been politicized in the US, which has cost lives. The death rate from COVID-19 for Republicans is higher than for the population as a whole because of this.

I urge everyone with questions to talk to a trusted medical professional about the research and science behind vaccines. Don’t fall for the misinformation coming from Kennedy and the people he has put in place at the CDC and FDA who disregard valid scientific findings.

You can also look for recommendations from medical associations, such as the American Academy of Pediatrics.

Don’t let misinformation keep you from taking the best care possible of your and your family’s health.

One-Liner Wednesday: persistence

Recently, a doctor told me I might have to give up on finding a diagnosis for my medical problems, but I’m not giving up.

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2025/07/23/one-liner-wednesday-some-days-ya-just-cant-win/

One-Liner Wednesday: Congressional accountability

To any member of the US Congress voting to cut health and food assistance to their constituents in order to give huge, permanent tax cuts and subsidies to the very wealthy, including fossil fuel companies: You can expect that your voters will choose a candidate in the next election who will represent their interests, not those of millionaires and billionaires who only care about their own riches and not the common good or the planet.

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2025/07/02/one-liner-wednesday-take-me-out/

EDS/HSD Awareness Month

May is Ehler-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month, begun by the Ehlers-Danlos Society to bring attention to this family of connective tissue disorders which affect millions of people around the world, many of whom will take decades to be diagnosed while others will never know for sure what causes their bodies to exhibit an unusual constellation of symptoms. I apologize for being late to the effort, although I did do one awareness post here for One-Liner Wednesday and shared some informative posts via Facebook. It’s been a bit of a rough month for me.

I am one of those people who is yet to be officially diagnosed, despite decades of symptoms, though I will spare you the details of my specific case.

The Ehlers-Danlos Society is a great resource for information about both Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD), both for individuals and for clinicians and researchers. It also plays a role in funding research around the world for these connective tissue disorders. There is a lot to know but I will just give a broad outline here.

EDS is a group of inherited connective tissue disorders, currently classified into 13 types. Twelve of the types have a known genetic cause, where a chromosome affects a particular protein, and can be identified with testing. Some of these affect less than one in a million people.

The largest group of people with EDS, though, have hypermobile EDS (hEDS), estimated to affect 3,100-5,000 people per million. While it is known to have a dominant genetic inheritance pattern, the genes or groups of genes responsible have not yet been identified. There is some question among researchers and clinicians if hEDS should remain classified as a form of EDS or if it should be considered as part of Hypermobility Spectrum Disorder in which the hypermobility is more widespread and severe than in most people with HSD.

In HSD, people exhibit joint hypermobility/instability in at least one joint, which may suffer frequent sprains, pain, subluxation/dislocation, joint or soft tissue damage, and/or early arthritis. They may also have poor proprioception, which means they can have difficulty with awareness of their bodies’ position or movement, for example, being clumsy.

They may also have symptoms over many parts/systems of their body. Fatigue, headaches, gastrointestinal problems, autonomic dysfunction, and anxiety are some of the kinds of symptoms that can be part of HSD, with each person exhibiting a different constellation of symptoms which may shift over time. This makes sense in that we have connective tissue throughout our bodies, so symptoms as diverse as unusually stretchy or delicate skin, a frequently sprained ankle, irritable bowel syndrome, and blood vessel problems can all be related through differences in the way connective tissues behave in the body. We don’t know how prevalent HSD is, because the current classification system dates from only 2017, our current medical system tends to silo various body systems into separate specialties – without there being any specialists in connective tissues – and most primary care providers haven’t been taught to recognize it. This often leaves patients in the uncomfortable position of having pieced together their own diagnosis but not being able to find a doctor willing to consider it.

I feel that it is important to be properly diagnosed, even though, as inherited conditions, EDS/HSD cannot be “cured.” It helps to know about the underlying cause in order to treat symptoms more effectively. For example, physical therapy may need to be prescribed for a longer period of time with more gentle techniques to avoid further tissue damage. Surgeries may need to be modified to better support lax connective tissue. Knowing what other symptoms may arise that are connected to EDS/HSD is also helpful, along with awareness that connective tissue disorders can help explain some disorders, such as irritable bowel syndrome, that have often been written off as idiopathic.

As EDS/HSD Awareness Month draws to a close, I’d like to thank the Ehlers-Danlos Society for their valuable work in raising awareness of these conditions, advocating for patients, disseminating information, and spearheading research into these connective tissue disorders. Maybe, as more people and, critically, more health care providers learn more about these disorders, patients will be diagnosed and treated more quickly and effectively.

I hope.

(About the photo: Doctors are taught in med school that “when you hear hoofbeats, think horses, not zebras.” However, sometimes, it is actually zebras! Zebras have come to signify EDS/HSD. My daughter T gave me this zebra unicorn pin in that spirit.)