Tag: symptoms

on being a zebra (unicorn)

May is EDS & HSD Awareness Month. EDS stands for Ehlers-Danlos Syndrome and HSD for Hypermobility Spectrum Disorder. They are a group of inherited connective tissue disorders that remain under-diagnosed and under-treated. Case in point: I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) in January at the age of 65, making sense of decades-worth of unexplained symptoms.

The Ehlers-Danlos Society uses the zebra as a symbol of the EDS/HSD community because there is a saying among the medical community that “when you hear hoofbeats, think horses, not zebras” but, sometimes, there really are zebras. Zebras also each have their unique stripe pattern, in the same way that people with EDS/HSD have their own unique presentation, depending on how their collagen and connective tissue is impacted across different body systems at that particular time in their life. The medical system in the United States and in many other countries tends to divvy medical care to specialists who only look at one body system but connective tissue disorders are easier to recognize if one takes a more integrative approach.

And a fun zebra fact: A group of zebras is called a dazzle, which leads to the Ehlers-Danlos Society saying, “Together, we dazzle!”

As I’ve continued to research hEDS, I’ve been engaging in personal forensic diagnostics. So many things I have experienced in my life make sense now that I know of my genetic inheritence of hEDS. For example, I developed tendon problems in my elbow as a young teen which impacted my abilities as a pianist and organist. When I eventually had to resort to surgery in my thirties, the outcome wasn’t as expected and I had to give up playing. I now understand that this was due to my hEDS inherited collagen defects.

My IBS, IC, endometriosis, vulvodynia, pre-term labor, allergies, mast cell activation disorder, cervical instability, near-sightedness, depression/anxiety, cerebellar ectopia, sleep apnea, early gall bladder disease, hiatal hernia, acid reflux, chronic fatigue, diverticulosis, chronic kidney disease, sensitive skin, joints that bend more than expected, and more all have a connective tissue component and are more likely in people with EDS/HSD.

Daughter T gave me the zebra unicorn pin as a gift. While the zebra is the symbol of EDS/HSD, adding the unicorn element helps to play up the uniqueness of each individual.

And it’s super cute!

The point is that another person with hEDS could exhibit a totally different set of symptoms from mine or we could share some symptoms and not others. It just depends on which connective tissues are compromised and how much at that particular time. Other factors are involved, too, like age, activity level, hormone and endocrine function, etc. It adds to the zebra-unicorn element and takes a thoughtful and informed practitioner to pick up on the possibility of an underlying connective disorder behind all the symptoms of different body parts.

In December, there will be an update to the EDS/HSD diagnostic guidelines. My hope is that the medical community will use these and the best practices guidelines that will follow in spring 2027 to finally look more comprehensively at their patients and diagnose and help them at much younger ages than currently.

Some people are also under the mistaken impression that it doesn’t do any good to give a diagnosis when you can’t cure the disorder. While it’s true that we can’t current treat the genetic cause, there are treatments to help alleviate many of the symptoms. It’s also imperative for practitioners to know the EDS/HSD status for anyone who is contemplating surgery. Surgeons need to know about connective tissue differences so that they can compensate for that during the procedure and the recovery protocols or, perhaps, decide that surgery is not appropriate. Many EDS/HSD patients also need long-term physical therapy to help them function; it makes a huge difference if physical therapists are knowledgeable about connective tissue disorders so that they help rather than hurt.

As I continue my journey with hEDS, I will keep you posted here at Top of JC’s Mind. If we are super-lucky and we find effective treatment for my brain fog and fatigue, I may even post more regularly.

I will, though, always remain my unique, zebra-unicorn self.

frustration

Since my hEDS diagnosis last week, I’ve been trying to arrange for a number of tests that my specialist ordered.

Some of the tests I was able to do on a walk-in basis and those went smoothly. I’ve been having trouble, though, with orders that had to be faxed. I’ve only been able to schedule one of the three tests, despite repeated phone calls and a few written messages.

It’s only been a week and a half, but I’m feeling really frustrated.

After the months and months of go-rounds of various specialists, waiting to see them, and waiting for the tests they ordered, I’m impatient for more information, in hope that we might actually be able to have some options to deal with my most troubling symptoms.

Deep breath.

More waiting, more phone calls.

What’s a few more days or weeks when we are dealing with something I’ve had my whole life.

PS: After I posted, I realized that today’s prompt for #JusJoJan was “impatience” so, yeah, guilty of that, too.

Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2026/01/22/daily-prompt-jusjojan-the-22nd-2026/

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.

still positive

Spouse B is still testing positive for COVID on Day 11, although the line on the test kit is fainter so maybe he is getting closer to the two negative tests 48 hours apart to be ready to be unmasked together without worry.

Not sure yet what we will do about Thanksgiving. It will just be the three of us and we were planning to do something other than the traditional turkey dinner. Maybe we will just postpone until we can all eat together in the same room. T and I have been eating in the dining room while B sequesters himself in his office at mealtimes.

We all remain grateful that his symptoms were relatively mild and short-lived but we are anxious to actually spend time together again. We are also grateful that T and I aren’t infected but we want to make sure we remain cautious. B would feel so badly if his case spread to us because we got tired of following protocol. Given the length of time that has passed, we all realize T and I dodged catching it when he was infectious before and in the early hours of the symptomatic phase.

So, at least, three more days of masking in our future.

I might need to order some more KF94 masks…

(COVID Photo by Martin Sanchez on Unsplash)

One-Liner Wednesday: household COVID update

Spouse B seems to be through most of his symptoms on Day 5, but will continue to mask and isolate at home, while daughter T and I are continuing to be symptom free and are masking at home when we are with each other and when we have to go out in public. (COVID Photo by Martin Sanchez on Unsplash)
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This update brought to you as part of Linda’s One-Liner Wednesdays! Join us in these brief (usually fun or inspirational) posts! Find out more here: https://lindaghill.com/2023/11/15/one-liner-wednesday-worried-who-me/

out of luck

I’m sad to report that, despite our best efforts, we finally have a case of COVID-19 in the house.

My spouse B tested positive yesterday. We think he was exposed at an in-person work event on Wednesday.

We are taking precautions to isolate from each other but daughter T and I were both exposed to B before he developed symptoms when he was probably infectious, so it’s a waiting game at this point. We’ll be testing before going out in public and masking when we do to avoid infecting anyone else, in case we are pre-symptomatic.

So far, B has had fever and symptoms similar to a bad cold. Our primary care practice wants to hold off on prescribing Paxlovid but will if his condition worsens over the next couple of days.

I knew our luck would run out one day but I’m upset and worried to have COVID in the house. Because I’ve been reading about it and observing the twists and turns in its history since the beginning, I know that things sometimes go very badly, even in someone who is healthy and up-to-date on vaccines, so…

Photo by Martin Sanchez on Unsplash

SoCS: an unexpected call

[Warning for family: This post is about Nana’s hospice care. You may prefer not to read it.]

I got an unexpected call this week from my mom’s (Nana here at TJCM) hospice social worker. She wanted to set up a family meeting with her and the hospice nurse. It was a bit unusual to have a formal meeting time set up, but we agreed to meet in my mom’s room at Mercy House, the hospice residence where she moved in May. We were fortunate that my older sister was here visiting, so she was able to join in, too.

What I hadn’t suspected was that the meeting was about re-certification issues. In most hospices, acceptance means that life expectancy is six months or less. With some diagnoses, that determination is relatively clear, but, with heart failure, as my mom shows, it isn’t so clear.

Nana was re-certified at three months, at six months, and then every two months since. We are now at fourteen months. There have been lots of ups and downs, but, sadly but not unexpectedly, the overall direction has been one of decline with continuing weakness and fatigue that has worsened significantly over the course of this year.

Therefore, we were shocked that the social worker told us that the medical director was considering de-certifying Nana. I guess I shouldn’t have been shocked, as there had been a couple of other times that the medical director has questioned re-certification, but it seemed so clear that symptoms were worsening that I never thought there was a possibility that he would think Nana didn’t meet the criteria to remain in hospice care.

As I understand it, there are two basic issues. One is that the medical director only has access to data points collected during visits from the hospice personnel, perhaps two or three hours a week and always during the day. Second, the criteria to stay under hospice care have to do with rate of decline, so, even though Nana would easily qualify to enter hospice care in her current condition, it doesn’t necessarily follow that she would be re-certified to remain under hospice.

So, on hearing the news from the social worker, I freaked out a bit. Well, not outwardly. But losing hospice care at this point would be very complicated. In order to be in residence at Mercy House, one has to be under hospice care, so de-certification would have meant having to move Nana, which would be complicated and exhausting. We had a preliminary plan in place, but we hoped not to have to implement it.

What we could do was give the social worker more information of what we were seeing when we were there visiting, which covers about nine hours most days. Nana was also able to give us some more information about night-time issues.

The social worker took the additional information we were able to provide and the medical director was able to see how it fulfilled the criteria for Nana to be re-certified. We were very relieved. From now on, though, I will be more deliberate about noting changes in case we need to fill in the blanks again.

Through it all, we are grateful for the care hospice has been able to provide. If it were not for their expertise in managing symptoms, it is likely that we would already have lost Nana. As it is, we continue to have the hope of more time with her.
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Linda’s prompt for Stream of Consciousness Saturday this week is “call.” Join us! Find out how here:  https://lindaghill.com/2018/08/03/the-friday-reminder-and-prompt-for-socs-august-4-18/

 

 

 

Alzheimer’s article

A blogger-friend Susan Cushman posted a link to this excellent article on dealing with Alzheimer’s disease.

There is significant history of Alzheimer’s disease in my family. My paternal grandfather and two of my aunts and one uncle were affected. We are very lucky that my dad, who is now ninety, has not been affected and is well past the age at which his own father and his siblings first had symptoms.

My parents have also had many friends who have developed Alzheimer’s or other forms of dementia.  There was so much in Dasha Kiper’s piece that was familiar to me from listening to my parents, from symptoms to everyday life to reactions of caregivers and family.

Enough from me, because the article is on the longer side and I’d much rather you spent your time reading Ms. Kiper’s words rather than mine.