Maybe It’s Just Me (and Learning About Pulse Pressure)

Yeah, it’s probably just me, lol

I love tracking, accounting, inventorying, archiving…almost anything and everything. From a 20-year long list of all the movies we saw in a “big theatre,” (when we moved from a small town—my birth place—to a much bigger city, and lived there from 2002 until 2022), to all things to do with my health and body. I’ve had a home computer PC since Christmas 1990, and that’s when I started my obsession with having computer files and lists for everything.

Last summer, two things coincided with one another by coincidence (maybe). I had been wearing a kid’s version of Fitbit (I really liked the soft wrist band) since December of 2023. My friend had been wearing a Fitbit since 2020, during a time when she and I were doing a lot of outdoor hiking because things were closed on and off during the first year of the pandemic. When I finally got one, it tracked my steps and my sleep, and that was it. But I loved it, and I really liked linking mine to my friend, and seeing each other’s steps each week. My mom knew how much I liked it, and told me in July of 2025 that she was ordering herself one, and when I came to visit her in August, I could help set it up for her. She wasn’t too keen that I would be able to see her weekly steps (or lack thereof), but I was excited to also add her as a friend on my Fitbit app.

During this same time, I had gone to the doctor about the problems I was having in my hands with Raynaud’s, pain, and loss of dexterity, and she had looked at my entire medical history as a whole, (really, for the first time, she hadn’t been my doctor for very long), and ordered an echocardiogram of my heart “to rule out” Ehlers-Danlos Syndrome, (hEDS). I had the Echo August 11, got the results at 11:00am on August 14, and got on the plane to fly to my mom’s that same day at 6:00pm. If you didn’t already know, the echo ruled hEDS in, with moderate, now borderline severe mitral valve regurgitation.

It was sitting at my mom’s kitchen table setting up her new Fitbit that I saw that her new “fancy” Inspire 3 tracked so much more than my little kid’s version! It tracked heart rates, and I had just been told I had a heart problem! (It also tracks detailed sleep “architecture,” omg, what fun). I ordered myself an Inspire 3 on the spot, and had Amazon deliver it to me at my mom’s house the next day. (Gotta love this ease of access to all things in our modern world).

You can imagine that ever since I have been tracking all things to do with my heart and sleep. ♥️

So far this month, my heart has been on a bit of a roller coaster ride. The thing is, this whiplash up and down coincides with my moods, with anxiety climbing, followed by a depressed state where all my daily tasks feel like an immense struggle. Including the fact that I am struggling with my good old stand by of planning what I eat, and eating what I plan. After some serious sloth-like behavior over the weekend, I pushed myself out the door for the last 2 days to go for my walk, but boy, that was a huge struggle too. And today is free public skating…and I don’t want to do that either. But I will be happy afterwards that I went, if I “make” myself go.

So, I will make myself go. Especially now that I have written it down and told the internet, I better follow through and actually go skating later this morning.

But I do wonder 💭 ?

Is my anxiety up because my heart is a little off and it is sending weird signals to my brain? Or am I mentally anxious in my thoughts, and is that making my heart go a little off? Which one is causing which one? Which comes first, the chicken or the egg?

First of all, sometimes a feeling does not just start in our heads with our thoughts. Sometimes the feeling is caused by a physical reality. We all know about and many of us track our blood pressure with home blood pressure monitors. But pulse pressure matters too, and personally, until last summer I had never heard of it before.

“Low pulse pressure (or narrow pulse pressure) occurs when the difference between systolic (top) and diastolic (bottom) blood pressure is 40 mmHg or less, or ≤ 25% of the systolic value. It indicates reduced cardiac output, meaning the heart isn’t pumping blood efficiently, often caused by heart failure, valve issues, or severe blood loss.”

And if my pulse pressure goes below 20 mmHg, (which it has been known to do these days), it actually feels exactly like mental anxiety, except there is a physical cause, not just a mental “spiraling thoughts” cause.

But my husband argued that maybe all this tracking is part of the problem. He could be right, I don’t know. On one hand, it feels a bit relieving to know it might not be “all in my head,” this anxious feeling is being caused by a something physically “off balance.” On the other hand, am I making myself anxious and then off balance when I start overthinking about my heart valve malfunction getting worse?

I don’t really have the answer to that, except that NOT knowing, or not tracking, will not make my heart problem go away. Interestingly, at the very start of my appointment on March 30, my cardiologist told me to get a Kardia Mobile ECG device, (just a basic one, off Amazon, didn’t have to be fancy or anything), to monitor any change in my symptoms. Even if I am in a relatively stable plateau phase (relatively being the operative word), I am on close monitoring with another echo in November, and stress test in December. So she wants me to keep track of any changes in my symptoms. Sigh.

So, I know that worrying doesn’t help. And maybe tracking weird patterns causes worry. But I guess I have a history of somewhat obsessively tracking things (even trips to the movies) even before having a major health issue to track. And don’t forget the dieting, omg, the dieting that I have been tracking forever. I learned to count calories (my mom had a little pocket book with all the calories of food listed in it) BEFORE I was even at an age that ended in “teen.”

One thing I don’t really track? Blog statistics, because I know I am mostly just writing this for myself. 😊

I Need More of a Purpose Than Just Sticking to My Diet

Walking the waterfront at Sidney, BC, on March 26, 2026, 5 minutes from my mom’s front door. Time well spent living my best life, despite the rant that follows…

How many of us know if our end time is coming soon? No one. But…some of us have been given a diagnosis that tells us we are on a faster time line than average. Sooner than most. Maybe really soon, maybe not, but sooner than most.

And maybe I shouldn’t be thinking about it. But guess what? I am thinking about it! And writing about it helps! Excuse me! I am working through Kübler-Ross’s 5 stages here, and stage 4 just hit me hard!

I know that those exclamation points right there, that sounds like I am being defensive.

I suppose I am defensive. I have people in my life who constantly demand all conversations need to be positive, and I am discouraged from processing my feelings on a topic if I feel any depression about them, (which is the very definition of toxic positivity).

So, I am going to write about them instead.

The recent Netflix documentary about Moriah Wilson actually said that maybe “Her body or her soul knew she had less time than most people, and maybe that’s why she had that sense of urgency.”

So, maybe I am not the only one who feels they have less time than most people. But I do not just feel it, I have been given a medical diagnosis that says so. And frankly, having never been given a “life-limiting” diagnosis before, I really do not know how to handle it! I am just treading water here! And at some moments during the day? I am very upset and depressed about it!

So, I need to write about it.

Let’s put a clock on my “less time than most people.” If I knew I had just 5 years left, how should I spend those 5 years? The important question I have is: IF we just say that MAYBE I have 5 years left, (instead of—let’s say—35 years left), knowing that…do I live my next 5 years differently?

This post is NOT about being sad and depressed and planning the worst. This post is simply about knowing that the decisions I make today—about how I live my life today—are being overshadowed by the thought that there is a chance I could only be planning for the next 5 years, instead of the next 35 years. And does that (should that) change anything about the choices I make moving forward?

Maybe I should look at it through the lens that I am privileged to know my end is coming sooner than average—sooner is guaranteed, because of my progressive heart valve disease—but I cannot say how soon. The cardiologist thinks a have 1-2 years maybe, before surgery would be needed to prevent heart failure, (which would still take further years to occur, but still). !!

I am not saying that to be dramatic, it’s a fact.

And I am not saying that to focus on the negative, it’s a fact.

And I am not saying that because I do not believe in modern medicine, but it’s a fact that modern medicine can honestly provide no guarantees, we are dealing with a very major and delicate organ here, (see actor Bill Paxton’s death).

Sure, eventual and successful open heart surgery (most probably open heart due to bileaflet involvement instead of the more common single posterior leaflet involvement) and repair or replacement of my mitral valve can maybe buy me a bit more time, on an already faster clock. But, that’s a maybe because hEDS surgery is always a wild card, AND bileaflet prolapse is far more complex. And it is still just “buying a bit more time” on a clock that is already ticking faster…than for a person with a healthy heart. Again, these are just facts.

There, I said it. I am ticking faster towards my end time than a person with a healthy heart. Because my heart is NOT healthy, even though I look just fine “on the outside.”

I do NOT have “Coronary Artery Disease,” but I have a broken mitral valve that is leaking blood at an ever progressive rate. My heart muscle is strong, so for now, it is handling the “chronic volume overload” by adaptively remodelling itself, which is why so many numbers changed on my echo during that 6.5 month interval, and I can still go for a walk everyday like usual. But eventually, it will start adaptation that is maladaptive, which will cause “heart failure.”

Heart failure is a progressive condition where the heart is too weak or stiff to pump blood effectively, failing to meet the body’s needs for oxygenated blood.

So, my end is coming faster because of my leaking valve. Fact. Not drama, not negativity, fact.

I type all this out because it is on my mind. Not all day every day…but when I put on a load of laundry, or when I empty the dishwasher, or when I log on to my computer to download the latest bank statement, it pops into my head and I wonder when is the inevitable actually going to happen?? How long do I have??

But I don’t know. No one does.

But if I live today the best I can, because I know my time is limited, then I am winning? Is that enough? I guess it has to be, unless I can figure out some other purpose that will lift me up from stage 4 depression to stage 5 acceptance.

And I would not have know my time was coming this soon, IF I had not found out I have a heart valve defect last summer, AND then found out just last week that yes, for sure, it is progressive. That kind of blows my mind that I could not know this was even happening. This exact time last year I didn’t know. Ignorance is bliss, (or should I say was). But I cannot unring this bell, I am no longer in the dark here. I am now well aware that my heart is remodeling due to chronic volume overload, and that means eventually my heart’s adaptation will become maladaptive, overtime leading to eventual ever-worsening heart failure.

And there is literally nothing I can do about it. AND I cannot even say when it will happen, just that it will happen sooner rather than later.

So, now what? I guess I can continue to still work to control my weight. I can continue to succeed in this battle I have waged with my weight for what feels like my whole life, by planning what I eat, and eating what I plan. And keep going for that daily walk like it’s my job.

But it does not feel like enough. For some reason, doing the same old same old, day in and day out, feels like inaction, instead of action. I feel like I should be doing something more. I need a higher purpose, I get that. But I haven’t figured it out yet. And that is why I came on here to blog instead. And I fully acknowledge that Kübler-Ross’s 5 stages of grief are real, especially stage 4. And I will be working on getting to stage 5. Eventually.

Plateau

No one who diets likes a plateau…except now I am thinking plateaus are a really good thing.

Going to see the cardiologist yesterday, actually speaking to a human being who is an expert about the changes in measurements on my 6.5 month follow-up echo, was an interesting roller coaster of emotions for me. On one hand, it’s good news. On the other hand, hEDS is still a wild card with more unpredictable outcomes. Last night, I certainly felt an emotional let down of sorts, just from the emotional build-up to the visit, and then experiencing the after effect of finally having the appointment and thinking to myself, “Now what?”

Either way, just like with any chronic health condition of this type, there is literally nothing I can do about it while my heart just does what it wants to do, except just keep living my best, healthy life.

Sigh. But I’d rather eat cake, lol. And I wish I didn’t have to constantly employ discipline to NOT worry about it (and to NOT eat cake).

Even though a lot of my appointment from yesterday sounds like Charlie Brown listening to his parents or teachers talk, I am pretty sure she said something along the lines of this:

“In patients with moderate-to-severe mitral valve regurgitation (MR) due to bileaflet prolapse, progressive ventricular remodeling—the enlargement of the heart’s left side—often enters a compensated phase that can remain stable for a period of time, though this plateau is highly variable and often shorter in hEDS patients due to tissue fragility.

While chronic volume overload typically causes progressive, unrelenting expansion, the heart may temporarily accommodate the volume, resulting in a chronic, relatively stable stage before transitioning to decompensation (heart failure).

Natural History and “Plateau”: Patients with severe mitral valve prolapse (MVP) can remain asymptomatic with stable ventricular dimensions for many years (a “latent” phase).
Plateau in Moderate-to-Severe Progression: A significant 50% of asymptomatic patients with moderate MR from prolapse will progress to severe MR over a mean of 4.5 years, meaning roughly 50% of patients may not show severe progression during that specific period.”

I think my “latent” phase, when the mitral valve regurgitation started and was mild, was after I first felt something was different, (or simply felt weird in my chest—sort of like shortness of breath), sometime in late 2018, leading to a lung function test in January of 2020 and being told I was fine.

And then it just so happened that getting that very first echo last August, and now this first follow-up echo, has occurred during a progressive remodelling due to chronic volume overload phase, as I progress from moderate to severe. BUT, I am not severe yet. I went from grade 2 to grade 3. I am NOT grade 4. As far as I can remember from what she said, I am most definitely in a “chronic, relatively stable stage,” despite the change from grade 2 to 3. My heart is temporarily accommodating the volume like a champ. Go me and my heart!

But shit, WTF, no matter what I do right now, and every day moving forward, this is not going away or getting better on its own. I am heading for an inevitable destination, and I cannot even be told when I am going to get there.

I asked her point blank, was there a chance I could avoid surgery? The answer, no. I mean, that’s what I thought she’d say, but I actually made her say it, because honestly, part of me still cannot believe any of this. Maybe if I knew I had a mild heart valve problem back in 2018-2020, and then had years and years of knowing this is my reality, (and knowing how “latent” it’s been until now), I could feel a little more confident about this most probable “plateau” phase. But nope, it still feels fresh, and raw, and new every time I have a test or an appointment. Not to mention, due to late diagnosis, I have no idea when my particular plateau phase even started, and therefore have no way to predict when it will end either…not that anyone could have with certainty regardless…sigh.

I know it sounds simple enough. So what, I have a heart valve defect that is progressive, and I’ll eventually have to have it fixed, no big deal, right? When they fix it (try to fix it), they simply open me up, stop my heart and put me on bypass, use their expertise to sew the valve back up, or maybe replace it, and then I go home to recover and live my life…until it starts to fail…again, which is also inevitable. Why even think about it now? It’s all just something that will happen in an unknowable where and when of my future, which is entirely beyond my control. Why let it steal my peace right now, for even 1 second?

Obviously, I am not going to let it steal my peace, generally. BUT, I am not going to lie and say that for just a few seconds, it’s NOT an elephant in every room I walk into. It just is. And it takes a large part of my daily discipline to just let it be there, and to instead NOT scream and cry about it when I feel a twinge in my chest.

I have another echo scheduled for November, and then a follow-up stress test with the cardiologist at the hospital, and we will see what the numbers say. In the meantime, I just have to let it be.

No Doubt

I need to remember, that when a person is struggling, how other people react to their struggle is entirely about them, not the person. When times are difficult, we really need to evaluate who are “our people,” and who are not, (while remembering, no revenge is needed, sigh).

Learning to Let Go of the Outcome

I can do everything “right,” count every macro, take all the vitamins, and my body might still say: Nope!

I have spent a lot of my life (let’s be honest) fairly focused (obsessed) with dieting, because at a young age I grabbed and then held onto the idea that “going on a diet” and losing weight would solve a lot (if not all) of my problems.

I carried this belief well into adulthood, and maybe even a part of me still wants to believe it even now. I simply did not want to let go of the belief that it was true, because diet (all the things I eat in a day) was something I could control, seemingly, in a world of so many things out of our control.

Probably, periods of “giving in” or “losing control” over what I was eating, were JUST so I could go on another diet and feel like I was “taking back control.”

Sigh.

Therefore, I have also spent a lot of time playing mental games with myself when it comes to food and exercise, to unpack excuses from realistic reasons, find the root causes of poor decisions, determine and solve the drivers of motivation and procrastination, and create effective tools and structure for positive routines leading to desirable outcomes.

That all just sounds like a load of crap to me right now. If this was a Nike commercial, it would say: Cut out all the bullshit, and just. do. it. Do better!

But sometimes you are doing better…yet the outcome is still NOT what is expected. I am not perfect, but when I look at how I have been managing my diet, consistently, for the last 2.5 years now, I suspect there is more going on with my body these days than simple calories in and calories out.

It’s not just menopause, (and now I am on HRT). It’s not just two months of numbers displayed on my smart scale. It’s not my clothes. It’s not even my recent test results. It’s something else I can feel, and yes, I think I can see it. I think my body composition is changing, in an accelerated way, and not for the better.

Of course, yes, my smart scale is confirming this. So, which came first, the scale or the feeling? Honestly, the feeling came first, which is why I wanted the scale.

If you listen to medical testimonials on YouTube, you will hear a common theme. “The test results said everything was normal, but I just knew something was wrong.” In my opinion, people do have an instinct about what is going on with their body, even if they struggle to have the language or the ability to say exactly what it is. So they go to the doctor and describe the symptoms they can put words to, and hope the doctor will run the right test that confirms that IF something is wrong, what that something is.

Deep down, I know that I am not saying I think there is something wrong just because a smart scale says there is, or a recent follow up test says there are negative changes. I know it’s because I have been feeling less strong, less capable, like the things that I do take more effort than they used to.

I feel like I my muscles are actually…getting weaker.

I have a sneaking suspicion I am not absorbing as much as one would hope in terms of the protein I do eat…I am thinking of switching to high protein (ultra filtered) milk, (even though double the protein will mean double the price), and trying for even higher daily protein goals, to better swing the odds in my favor.

“Why hEDS-Related Delayed Emptying Causes Protein Malabsorption:

Impaired Digestion Time: When the stomach empties too slowly, food remains in the stomach too long, leading to partial digestion and preventing the necessary breakdown of proteins into amino acids for absorption in the small intestine.”

So, I am trying to increase daily protein, to consistently over 100 grams a day, but maybe I am not absorbing it. And because I have NO control over it, I have to stop twisting myself into to knots worrying about it. It is what it is.

That does not mean I want to stop trying, but I have to stop worrying about the outcome. I will be honest, I have been allowing too much worry about outcomes I cannot control steal my peace.

Two Months With a Smart Scale

One thing about having a smart scale tracking so many metrics, is I started only weighing myself on it once a week. It was just too weird to try and do it every day. Fluctuating hydration levels meant I could lose a significant amount of muscle (??) in just 24 hours? No, probably not. So, once a week measurements have been making much more sense.

But…it does look like my body composition in terms of muscle is declining.

I am NOT going to let this depress me. Firstly, maybe the scale is not all that accurate. Secondly, it would probably be worse if I was not trying so hard to NOT lose muscle. Could I be doing more to improve my muscle? Probably. Even though I am hitting my protein goals, I am not really resistance training. And that is okay. I am doing really well despite dealing with declining heart function.

I have to look at the good stuff. I feel well overall, but I cannot deny I have had more fatigue to deal with than I did—even at this time last year. But I am not going to beat myself up. I can honestly say I am showing up for my health every day and doing the best I can with the energy I have.

I could add a little bit of resistance training maybe, but first I am going to talk to my cardiologist at the end of the month about exercise (and muscle loss) and fatigue.

I am glad I got the scale. I would rather have a rough idea where I am at (give or take it’s unverifiable accuracy), than just pretend everything is probably fine, and be really shocked when I get my Dexa Scan in June. This way I am prepared for my Dexa, and who knows, there is a chance I will be pleasantly surprised. Either way, I know I am trying, and tracking is just a part of that, regardless of what the tracking says.

What Can I Do While I Wait

Hobbies. Another blogger got me thinking about what I can do while I wait to talk to my cardiologist about my recent follow-up Echo results. I can lean into my hobbies.

I can go skating, which I just love! I can keep going walking, especially because spring is almost here. I even did a “gentle” hike last weekend, (more on that later). I love reading and creative writing, (so much so that I studied it in university and made it my profession), so I can certainly get back to more of that.

But lately, I find myself treating my health like a serious time-consuming hobby, if not a full-time job, lol.

After receiving somewhat unfavorable numbers on my follow-up echocardiogram that I wrote about here, I finally thought to research if there is anything I can do to slow the progression of my mitral valve regurgitation.

When I first learned I had mitral valve disease related to having a connective tissue disorder (hEDS), I had grade 2 (out of 4) regurgitation. I even said in that blog post, “I will not know until some time goes by, and I can have a repeat Echocardiogram, and see if my current level of grade 2 regurgitation is stable for now, or is it progressing.”

Unfortunately, I am now grade 3, with an EROA of 0.3 cm² showing on my recent echo report:

“An Effective Regurgitant Orifice Area (EROA) of 0.3 cm² is generally considered to be in the moderate-to-severe (Grade 3) range.”

So, now that I know things appear to be moving in a less desirable direction, I want to make sure I am doing everything I should be doing in terms of dealing with this new reality.

“Grade 3 (moderate-to-severe) mitral valve regurgitation requires active management to reduce the workload on the heart and prevent progression to severe disease or heart failure. Key strategies involve strict blood pressure control, a low-sodium diet, tailored physical activity, and close medical monitoring.

Lifestyle Modifications to Slow Progression

Strict Blood Pressure Management: High blood pressure (hypertension) directly increases the backward leakage of the valve. Keeping blood pressure in a healthy range is critical to reducing strain.
Low-Sodium Diet: Reduce salt intake to 2–4 grams per day. Excess sodium causes fluid retention, which increases blood volume, forcing the heart to work harder and increasing the leakage.
Maintain a Healthy Weight: Obesity puts extra stress on the heart. Maintaining a healthy body mass index (BMI) is recommended.
Regular, Tailored Exercise: Moderate activity (e.g., walking, biking, swimming) helps maintain heart health, but you must consult your doctor to determine the appropriate intensity. Avoid heavy lifting and very intense, competitive sports.
Avoid Stimulants and Alcohol: Limit caffeine and alcohol, as they can trigger arrhythmias (like atrial fibrillation) which often accompany valve disease.
Stop Smoking: Smoking damages blood vessels and increases the risk of coronary artery disease, which can worsen valve function.
Practice Good Dental Hygiene: Poor dental health can lead to endocarditis (a bacterial infection of the heart valve). Get regular dental checkups.”

Good news, I am already doing every single one of these things on this list! But darn, I was hoping I could feel empowered by finding out something NEW that I could do also, but alas, there were no surprises here on this list.

(And can I just say, holy crap, where would I have progressed to in the last 6.5 months if I was NOT already doing those things…)

I’ve never been one to add extra salt to my food, so according to the LoseIt app where I plan and track my food, I average about 2 grams a day. My excessive tea drinking means I am constantly dehydrating myself (tea is a natural diuretic, and I drink a lot of it). So that keeps my overall fluid volume low (less pressure).

Luckily, I have naturally low blood pressure, (very low, it’s always been that way), I just took my reading yesterday afternoon, check it out:

And I went for a nice walk on Saturday, even going up a hill, (a gain of 400 feet, a moderate/easy hike, okay for my heart, as far as I know). But my average heart rate was only 111 beats per minute, so I feel confident I was in the moderate category. (Not sure what the little bit of excitement was there at the end, maybe my sister made me laugh, or something, because we were walking downhill by then, lol). I will be discussing exercise with my cardiologist, but I am pretty sure maintaining my cardiovascular health is helping my heart handle my valve problem.

So, I guess I will stay the course while I wait, and live each day to the fullest, hobbies definitely included.

Don’t Google Your Symptoms, They Said

(Photo taken February 27, 2026, the day after my very first repeat echocardiogram).

I look so healthy. In some respects, I am healthier than I ever have been in my life. Hurray for planning what I eat, (lots of whole foods, thanks to being Celiac, grain free, etc), and eating what I plan for the last 2.5 years, and tons of walking.

But, in the last 6.5 months, my heart valve disease is progressing.

On February 26, I had my very first follow-up Echocardiogram. Before this, I only ever had the one Echo, performed last August, so I had absolutely no other numbers to which I could compare it to.

In fact, prior to last August, no doctor had ever even held a stethoscope to my heart. All I knew was:

In 1999, I had a small elective surgery, (my one and only, and with me then vowing I would never voluntarily do something surgical EVER again, lol), and my heart was fine back then.

In December of 2018, I noted in my journal I had “shortness of breath,” but that maybe it was due to vitamin B9 deficiency, (back then, I was trying to sort out my diet, digestion problems, and other deficiencies I had like iron).

In January of 2020, I had a lung function test due to my “shortness of breath,” but my test was normal, my lungs were fine.

So, my first sign of “shortness of breath” was about 7 years ago. I figured that was probably when I first developed “mild” mitral valve regurgitation. So now, I was truly hoping for a stable comparison Echo, because I did the math. If I was maybe “mild” 7 years ago, and I am moderate now, maybe I have 7 more years before I cross over into “severe.” Because it had only been 6.5 months since my last Echo, which had placed me at “moderate” regurgitation, it made sense to me that ‘relatively unchanged’ was a realistic expectation after only 6.5 months.

In fact, 50% of people with a mitral valve prolapse (which can eventually cause regurgitation) can remain stable for decades! The other 50%, well, factors like high blood pressure can drive progression, but no, my blood pressure is actually low. Advanced age and other negative health conditions? Nope and nope. Bad cardiovascular fitness can weaken the heart, making it harder to handle a valve problem. But that does NOT apply to me either. My fitness was tested, I am above average for my age, even if I didn’t have a valve issue. Even though my weight has fluctuated up and down in my life, I’ve always been someone who is trying to “move more.” I’ve mostly battled just being overweight, (and then always going on a diet), but I have rarely gone up and over into the obese category. And even though there have been times in the last 14 years that I didn’t walk as much, in that time I’ve logged on RunKeeper almost 12,500 kms worth of going out for a walk. I got my first step counter/pedometer back in the year 2000. I went to Workout Express! I am healthy, right??

So, this all feels like I am getting a raw deal here somewhere. It does not feel fair.

I know, sigh, life is not fair. It just is. And obviously this card I’ve been dealt is not nearly as bad as it could be…but I still wish I could just put it back in the deck, and have this NOT be my reality.

Of course, I need to just wait and discuss the findings with my cardiologist on March 30. There is no point in stressing while I am waiting. Maybe these numbers are not the tipping point yet, or anything like that. And it was very smart of me last summer to have asked for the referral to see her. I am lucky to already be set up with her. Someone specialized is already in my corner.

But what started the whole cascade of stress for me was the rest of my Echo numbers hit my health portal yesterday, on March 3, which was my 55th birthday, of all days. Sheesh, talk about timing. And this is where I got into trouble, I googled stuff like:

Question: What does it mean if my E/A Ratio: was .86 and is now 1.01, with a former E/E’ Average of 9.2, which is now 20.5?

Answer: Based on the values provided, your echocardiogram findings indicate a significant increase in your left ventricular filling pressures and a progression in the severity of diastolic dysfunction (difficulty with the heart relaxing and filling with blood).

Oh, for crying out loud, that sounds bad.

I guess I shouldn’t be surprised, ‘relatively unchanged’ was less likely considering my hernia situation is not stable either. Ug! Stupid “issues with my tissues,” it just is what it is. But I am still bummed out, and a bit stressed.

And the truth? I think I have been feeling it get worse. Last time I had normal pulmonic vein flow. This time they see systolic reversal in pulmonary vein flow. I think that is why I was starting to feel “out of shape,” and extra tired, which I blogged about on January 9. I do have increased shortness of breath, but it’s intermittent. I may have a brief moment on a walk, where I feel winded, but then it’s gone quite quickly. I am actually more out of breath making my bed everyday! (It’s a king-sized bed, it has a fairly hefty comforter that goes over top of it). So maybe I don’t need any intervention at this point…but things are changing. I’ve been feeling it.

On one hand, knowing things are changing with my heart is causing me worry/stress. But NOT knowing doesn’t make it not true, so is there any point to NOT submitting to these follow-up tests, right? I needed to know these numbers, even if they do stress me out. It’s a no-win situation when you are dealing with a serious health issue.

Another WordPress blogger also has ongoing health concerns that are being closely monitored, and recently he had this to say:

“If I could offer one small suggestion to anyone walking that road, [waiting in a doctor’s office], it would be this: bring a book. Or in my case, a Kindle. Reading helps me escape the mental spiral. It shifts my focus away from lab numbers and test results and places it somewhere far more peaceful. If you let it, the stress will take over. And some weeks—like this one—it tries really hard.”

He is so correct, and I appreciate his words of wisdom. There is no point in letting the stress of waiting…and the eventual waiting in the literal waiting room…take over. Despite the progression in just 6.5 months, especially “Systolic reversal in pulmonary vein flow,” which sounds bad, I will enjoy this month immensely. I am off on a trip to see family, and then I will be back in time for my appointment on March 30.

Here are some of the actual comparison findings, side by side, and then what Chat GTP said about it.

Echo findings last time, August 11, 2025:

Prolapse of the anterior and posterior leaflets of the mitral valve.

Moderate mid-systolic eccentric mitral regurgitation.

Normal size left atrium.

Left atrial volume index of 31 ml/m2 (normal is 34 ml/m2).

Normal pulmonary vein flow.

Pulmonic Valve: Normal structure and function of the pulmonic valve.

No pulmonic regurgitation.

Main pulmonary artery normal in size.

Left ventricle ejection fraction = 65-70%

Left ventricle ejection fraction is calculated at 67% by Simpson’s biplane.

Left ventricle Mass (ASE) index 68 g/m2

Echo findings this time, February 26, 2026:

Prolapse of the anterior and posterior leaflets of the mitral valve.

Moderate mid-systolic eccentric mitral regurgitation. Unchanged.

Changes: Left atrium mildly enlarged.

Left atrial volume indexed is mildly enlarged, now measuring 38 ml/m^2 (normal is 34, prior was 31 ml/m^2).

Right atrium volume index increased 25% from 23ml/m^2 to 29 ml/m^2, (but still considered within normal limits until over 30).

The pulmonary vein flow has systolic flow reversal.

Pulmonic Valve: Normal pulmonic valve function with trivial pulmonic regurgitation.

Systolic reversal in pulmonary vein flow.

The aortic root indexed is enlarged 2.2 cm/m^2, (normal for my BMI is generally around 1.8)

Left ventricle ejection fraction = 60-65% (weakening)

Left ventricle ejection fraction is calculated at 60% by Simpson’s biplane (last time 67%)

Left ventricle Mass (ASE) index increased to 79 g/m2 (16% increase)

Lateral increase in early diastolic velocity of the mitral annulus from 8.8 to 31.2, (threshold is 15)

Left ventricle filling pressure increase, E/E’ Average was 9.2, is now 20.5.

Hmmm…That all sounds bad. But then Chat GTP talked me down off the wall. Changes, yes, but tipping point? Maybe not:

“In the 6.5 month interval, you see your:

• Ejection fraction drop from normal to low normal

• New left atrium enlargement, along with left ventricle mass and dilation increase

• New pulmonary vein flow reversal and enlarged aortic root

It feels like a tipping point.

But physiologically, this still fits within:

Moderate chronic mitral valve regurgitation, with progressive remodeling due to chronic volume overload.

Your cardiologist might:

• Repeat echo in 6 months instead of 12

• Consider cardiac MRI if quantification is uncertain

• Track left ventricle end-systolic dimension carefully.”

Nothing left to do but wait, lower my stress, and stop googling.

I am Sensitive, Too Sensitive

I have been enjoying skating again, very much. I fell yesterday, “Toe pick!” but if you ever watched the film “The Cutting Edge,” you know that sure, falling is never fun, but if you are already in motion, you end up sliding on the ice after you go down, which actually disperses some of the impact. So, I didn’t break anything, just a bruise or 2. #worththeriskevenwithosteoporosis.

Having hEDS means my skin is highly sensitive. “This increased sensitivity is a recognized, though not always emphasized, symptom that can manifest as pain, discomfort, or an exaggerated reaction to light, touch, or textures.” —Google. I used to think my sensitivity was one of my slightly neurodivergent traits, but it is nice to know it’s not just “all in my head.” Honestly, it almost always takes me more than one try to put on a pair of shoes, because if I don’t get the seam of my sock just right, then it will bug me to distraction.

Also, I do not have very thick skin, literally and figuratively. Literally, my skin is quite thin and translucent in certain areas, back of the hands, top of my feet, inside of my arms, so that all my veins are highly visible. Figuratively, because I am very sensitive to criticism and feeling as though I may not be believed, especially when it comes to whether something “hurts” or not. Pain is very individual and subjective, but sadly, not being believed by doctors does happen to a certain amount of patients. And my mom, who has a very high pain tolerance and forgoes freezing at the dentist for a filling, is fond of saying, “It doesn’t hurt, you only think it does.” I have to remind her she is the exception, not the rule, and I was NOT gifted with that particular high tolerance gene.

Interestingly, having a public blog actually opens me up to criticism, but I love this narrative space despite the risk. I try to be a nice person, word my posts in a manner to reflect my true nature as someone who is open to all sides of an argument, and not one to be judgmental. I am more interested in learning new things, not in trying to change anyone’s mind. But regardless, not everyone is going to like me, or what I have to say. I’ve often thought it is only a matter of time until someone out in cyberspace calls me a drama queen, especially now that I have been complaining (but actually intending to simply validate myself, not necessarily complain) about recently diagnoses and “issues with my tissues.” BUT! Thankfully, in the 15 years I’ve had this small little blog, (started in 2011 first for my creative writing, then expanded in 2019 to include my dieting health journey), I have never received a negative comment. Personally, I really love the WordPress community, and I am grateful for people who post regularly, and even those that don’t. I love people who share their stories.

I cover all this personal back story because I found myself yesterday, on February 9, taking a picture of the remaining pink circle on my chest. Sunday night, I felt a faint burning sensation in 2 of the spots that started as hives 3 weeks ago, but nothing was visible to the naked eye. Then yesterday morning, the burning sensation was gone, but the other 3 spots were still itchy. One of them was pink, so I took a picture. I am still experiencing on and off digestive discomfort as well. Ug! Talk about sensitive! 3 weeks later, and I still need to take allergy medication. After the spots faded significantly in the first week, I discontinued the prescription steroid cream. I only use that stuff sparingly, as it is quite strong, especially considering my sensitivity. I am just taking the Allegra, when I experience a symptom.

But then I asked myself, why are you taking a picture of that 1 barely visible spot?? Because unless I have “proof,” I fear I won’t be believed that I am STILL having this reaction.

I second guess myself, and this recent reaction (with a 6-week gap between exposure and slight reaction, and then my huge reaction which erupted January 20) is so bizarre, it has really triggered my feelings of “I may not be believed.” I am not taking a picture to convince anyone else. Nope, the picture is just for me.

I know this is routed in childhood experiences, and medical trauma when real pain and fear of injury is not believed, (for example, an impacted wisdom tooth to which local anesthetic had not yet fully taken hold, the fact of which was initially dismissed by the oral surgeon I was trusting to extract it). As I typed this, I felt the urge to declare, “I have the x-ray of the impacted wisdom tooth if you don’t believe me,” and post a picture! Except, no one is saying they don’t believe me, except me. I am the only one here, in this space, saying that. But second guessing myself like this constantly, always seeking to provide “proof,” it is particularly bad for my own self esteem.

Sigh. I am recognizing this behavior, and I am working on being kinder to myself.

Progress Not Perfection

Years ago, (I feel like I was naive back then, maybe I still am, lol), I really tried to examine what would be the first steps on the path to regain. I felt like there was a range of pounds regained on the scale that specifically—yes—that would define that path.

Seems pretty obvious to me now, but numbers on the scale are just the result of walking down a path of my behaviors, focusing on the numbers without addressing the behaviors that caused the numbers.

For me, I realize it is truly not a new higher number on the scale, it is the behaviors that precedes that new number. In fact, certain behaviors and choices (to overeat emotionally) and then NOT seeing the scale go up to a new number (at least, temporarily, or after just one time off plan) used to lead me to think I somehow “got away with it,” (the overeating behavior, that is).

For me, I believe that to achieve long term maintenance, I must NOT allow the behaviors. Period.

What is going to work for me long term is planning what I eat, and eating what I plan, no random unplanned food to stuff down my discomfort. Simple. I can plan dessert. I can plan larger holiday meals. I just CANNOT randomly (without a plan) overeat dessert-type foods to stuff my emotions.

And for me personally, I do not think there is any amount of regained weight that is acceptable for me, IF that weight gain is caused by a return to old behaviors in overeating, especially based in the desire to stuff down discomfort (emotional, or even physical). And especially allowing the old behaviors on a regular basis, and then restricting to lose regained weight.

Thankfully, this post is not about regained weight. I currently weigh 122.8 pounds. But January was a rocky month, compounded by a multi-week-long attack of intense immune memory-driven recall dermatitis (external part of the reaction), followed by days of worse than usual digestive problems (internal part of the reaction). Apparently “recall dermatitis is notorious for being slow to fully resolve once it’s activated,” and I have been living that reality. (Sunday, February 1, I still woke up with one itchy pink circle that needed medication. Two other spots were itchy also, but invisible to the eye, not pink). I still feel a tingling “itch” in those spots, as we speak.

My body is unpredictable. Therefore, that can affect the stability of my weight, which is fine just as long as it’s NOT because I made unplanned food choices.

I saw problematic behavioral choices before the systemic immune attack that I do not want to continue, but thankfully, I did not succumb to during. That was a pattern I had of soothing in the past, not just the soothing of emotional discomfort, but sometimes of physical discomfort. Seeking relief. But those behaviors, overeating and/or restricting afterwards, they do NOT/will NOT serve me in a positive way.

I have a habit of assigning meaning to random dates, (meaningless to anyone but me). It can be a bad habit, because healthy routines should not need “special” reminder dates, or special restart dates. Today, right now, is the only date I need to pay attention to.

My heathy routines should just be my daily normal. And they are. Until they aren’t.

Today, I find myself looking back at the past (and past dates) because in the present moment, I find myself concerned. Could I end up returning to my past food behaviors? I definitely thought about it when I struggled with the discomfort of the immune/allergy reaction. I am aware that I carry my past wherever I go. I have discussions with my past. I know that does not sound good. I can (and should) let my past go, and I definitely do NOT want to use my past as an excuse for something I choose to do today. And my future is not yet written, so I can simply choose to live in the moment, and surround all my moments with good choices.

On the other hand, he who forgets the past is doomed to repeat it. That is good advice too.

January 12, 1999: That was a really big date in my past, the anniversary of which was a few weeks ago. It was the first time I ever saw 200 pounds, (204, to be exact), on the scale. After that, I lost quite a bit of weight in 1999.

Then, after making a big geographical move and regaining weight, I also saw 207.5 and 204 pounds, in the years 2003 and 2004.

I have never seen weights as high as those ever since. The closest I have come, I saw 193.5 and 192.9 pounds. The first of those 2 weights was in 2011, and after that weight, in 2012, I went gluten free and lost quite a bit of weight. I saw the second of those 2 weights in 2023, again after another big geographical move, before my recent consistency and determination brought me to where I am today. I have not seen 200 pounds or over on the scale in the more than two decades since 2004. But I spent decades of my life losing and then regaining significant amounts of weight, getting close to some of those 5 high weights I listed. What a waste of my time, losing to only regain, (totaling over 500 pounds! that I wrote about here), over and over again.

Very recently, 5 other dates have been really significant:

1)Dec.21/25

2)Dec.25/25

3)Dec.31/25

4)Jan.5/26

5)Jan.11/26

On all 5 of those days I overate excess food that I did not plan to eat.

I did not have the recall dermatitis attack until January 20, but maybe I had started something smoldering ahead of time with less than perfect food choices, and/or those 5 different days (that I succumbed to old soothing food behaviors) was because the immune attack was already percolating (and depleting my willpower) ever since wearing the adhesive pads for 24 hours on December 9th to 10th. I will never know for sure.

I personally know people that are right now, in these first weeks of 2026, working hard to reclaim their health. And yet on these 5 different dates, my behavior was the opposite, (whether or not I had a possible excuse physically—something effecting my immune system—does not matter, because there will be always be available excuses to “give in” and eat “whatever,” and I canNOT let “I feel bad” emotionally or physically to be one of them). Those dates are representative of me essentially throwing my health away, certainly not holding on to it. The health I have now is health that I have worked my whole life to achieve, (unpredictable reactions aside). I am at a healthy body weight, with the ability to go for walks, go skating, and play on the floor with my grandson. My current health is the culmination of me about to turn 55 year old, having worked consistently to make good choices for the last 2.5 years. Yet, the choices I made on each of these 5 dates…Where am I going to be if I return to that behavior??

What is the number 1 thing on this list of “5 Pillars”? = Health.

1)Health

2)Financial security

3)Routine/peaceful life to calm your nervous system

4)A few true friends

5)Emotional resilience to weather storms and keep moving forward, set boundaries and say yes only to things that support you

After I copied this list, I spent the last few weeks leaning into all 5 of these:

1)I went back to my routine healthy food and exercise choices

2)I worked on our year-end financials, to get/keep our financial ducks in a row

3)I leaned into planning and scheduling my daily routine

4)I went skating and enjoyed the company of other people

5)I proved to myself that I am resilient enough to weather a recent storm

This is a much better list of 5, than my list of those 5 dates of bad choices.

I did have a thought. 2.5 years of discipline and consistency, where I do NOT overeat. There were a few times I did have a little more food than I planned, I am not perfect, but those were an isolated incidents, where I was back the very next day to eating what I planned, (without rapidly following reoccurrences). Then I started HRT on December 15, and after that, I have 5 different days over the course of 3 weeks where I choose to overeat, just like I used to, and I struggled to stop?? Is this a physical response to the HRT? Or am I just comforting something emotional in a way that I have not indulged in for over 2.5 years?? No, I don’t think it was the HRT. More likely it was a depletion of my resources (that I did not know was happening, except I did mention extra fatigue here) that could have been a factor, while my immune system went into overdrive.

It feels like I have turned a corner, and I am still taking HRT. And because no date on the calendar will ever compare in meaning to waking up today, at 122.8 pounds, I am once again feeling resilient. I have made it through my recent “storm” of old behavior, and “storm” of immune reactions, to the other side, where thoughts about turning to excess food as a comfort have gone quiet.

This is not perfection, but progress.

P.S. Something that just tickled my slightly neurodivergent love of patterns, is that despite this being 2026, I think this is my year of 5’s. I just made a list of 5 years where I struggled at my highest weights. I just made a list of 5 dates where I struggled with unplanned overeating. I just made a list of the 5 pillars of health, and I am posting this on the 5th. And I am 5 foot 5.5 inches tall, and I am about to turn 55 years old.