Tag: diagnosis

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?

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/

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.)

JC’s Confessions #31

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.

On April 6, 2025, Pope Francis appeared in public for the first time after returning home from his long hospitalization. It was at the end of a special Jubilee liturgy for the sick and health care workers and others who care for them. He had written the homily and a special blessing for the mass, although they were read by others. Francis wrote:

In this moment of my life I share a lot: the experience of infirmity, feeling weak, depending on the others for many things, needing support. It is not easy, but it is a school in which we learn every day to love and to let ourselves be loved, without demanding and without rejecting, without regretting, without despairing, grateful to God and to our brothers for the good that we receieve, trusting for what is still to come.

I am currently entering the second year of dealing with a complex medical situation that has not yet been fully diagnosed. I don’t know if I will be able to be adequately treated or if I will continue to see progression in my symptoms.

It’s hard.

I confess that I am not always gracious in this situation. I manage to let others do things for me and to ask for accommodations if I need them, but I find it difficult to set aside regret and to trust in the future.

This is especially hard for me in regard to my future as a poet. I don’t know if I will regain the creativity I’ve lost to brain fog and fatigue. I’m even losing the concentration and attention to detail needed to do submissions for my already existing poems and manuscripts.

I’m trying not to get to the point of despair.

These next few weeks are important in that I have a new batch of tests and specialist visits coming up.

Maybe having some more information about what is happening will help me to be better with being sick.

Maybe not.

I’ll try.

(I realized when I went back in my blog to find the number confession this was that this confession is, in a way, a continuation of #30.)

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…
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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/

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/

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/

Next step

Following up from yesterday’s post, my specialist appointment is resulting in an order for the next step toward diagnosis, an angiogram to evaluate the blood vessels in my neck.

I’m not sure how long it will take to get on the schedule but I’ll let you know when I have more information.
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Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2025/01/03/daily-prompt-jusjojan-the-3rd-2025/

JC’s Confessions #30

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.

I try to take mental notes as I go through life in order to give myself guideposts for the future, to give myself advice as needed.

I have watched, sadly, some instances when, as people struggled with medical conditions, they stopped doing things because they were embarrassed to be seen needing assistance or having to do things differently.

As I’ve been dealing with my still undiagnosed health problems since March, I’ve tried to keep some of my commitments going, even though that has meant making major accomodations. For example, I’ve sung the last two Madrigal Choir concerts seated because my balance problems have made standing without support to sing impossible. I also only made it through our afternoon rehearsals by lying down before rehearsal and during our break because it’s difficult to hold my head up unsupported as the day goes on.

I’ve put other commitments on hold totally, even though I get “can’t you just?” comments. The truth is that whatever I do comes at a cost. If I push too hard, I pay for it with a surge of symptoms and fatigue that can go on for days. I choose to do that for a limited number of things but I can’t do it for everything or I literally would not be able to get out of the house – or even out of bed.

We may be close to getting, at least, a partial diagnosis and some treatment, if I’m lucky. I’m alternating between hope and despondency. I don’t know how much longer I can keep this unsatisfying balancing act going.

Do I have the humility to keep asking for the accomodations I need to keep a few of my activities going or do I give up and wait to see if I can get back to doing all the things I want in the way I’m accustomed?

It’s difficult, because I’ve seen too many people lose some joy and time with friends waiting to get better when they never did. With my limited energy and brainpower, I’m fighting to keep some things going, when the alternative would seem to be losing them totally and, perhaps, irrevocably.

So, what am I confessing?

I know my health condition is not a sin. Or what I’m doing to try to cope. Or not being able to power through these situations.

But I do feel guilty for letting people down and not being able to do what I want and not having my accustomed creative and critical thinking skills.

Maybe not for much longer.

Maybe permanently.

SoCS: a new wrinkle

I just finished writing up some notes on a problem I had at physical therapy yesterday.

We were trying to tape my upper back/shoulders and inadvertently caused symptoms in my neck and made my tinnitus louder.

We immediately removed the tape but I’m still having some aftereffects today.

We are still looking for a diagnosis that explains all my medical weirdness but we aren’t there yet.

Meanwhile, I appreciate everyone’s graciousness and patience in waiting for my posts to appear. It’s been an intense few weeks, as you might have guessed in that I still haven’t done a post-election entry. I’ll get there eventually.

I’m trying to extend the grace and patience people are showing me to myself. Sometimes, I even manage it…
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Linda’s prompt for Stream of Consciousness Saturday this week is to use the word “just” in the first sentence. Join us! Find out more here: https://lindaghill.com/2024/11/22/the-friday-reminder-and-prompt-for-socs-nov-23-2024/