Living in the Future Instead of in the Present

Saturday, May 9, a better day and nice ride on the motorcycle, in the middle of a lot of crappy days.

Here we go again. I haven’t been feeling well physically, lots of painful bloating, for one. And so I started living in the future again. For example, “When I feel better [at an unknowable future time] I will do such and such.” And then entered into my mind my good old stand by: “When I get thin…then I’ll do such and such…”

Yes, I still do that in my head, prefacing future plans with “When I get thin…”And then I remind myself that firstly “thin” is an abstraction, because I can call myself “thin” right now, only if I choose to. But I must NOT want to call myself (in my head) thin, because then I would lose my excuse for not living in the here and now, and instead thinking of some unknowable future time when things will be “better.”

Of course, that means it is NOT actually be about being thin at all. What I really mean is when I get to be something I am not right now…then I won’t feel these bad feelings about myself anymore. Those feelings are ones that I allow to hold myself back from living my life.

I know all this wallowing in pity is not healthy. And it’s not very productive either. I am almost embarrassed to admit I am being like this. Physical symptoms aside, I can still choose my thoughts, and I am not choosing wisely, I am simply falling backwards.

And I am embarrassed to admit it. And that feeling is fueling even more negative thoughts.

For me, shame and embarrassment seemed to be conflated.

On my April 7 blog I wrote, “For some reason, doing the same old same old, day in and day out, feels like inaction, instead of action.”

That sentence has stuck with me ever since. Especially now when the same old same old seems to be achieving different results.

I re-read a quote the other day about shame. It came from a former blogger, (but her blog is no longer on the internet). Shame about regained weight may have actually stopped her from continuing her blog. Regain is difficult because it involves feeling like you have failed (embarrassment, shame) because you reached a certain level of specifically defined success, only to then find that “success” slipping away as the numbers on the scale climb.

Myself, I have been experiencing digestive problems. I haven’t been doing anything “wrong” that I am aware of, but my body is not staying in homeostasis. And trying to “right the ship,” so to speak, feels like such a struggle. It feels just like times when I have regained weight.

Of course, the numbers on the scale having been going up too, along with the bloating and chronic constipation. I have been ending up in physical pain, dealing with vertigo migraines (and new to me ocular migraines), just as if I overate something that will trigger my immune system (for me specifically—gluten, grains, chemical food additives, emulsifiers), even though I think I ate everything “right.” And the scale number just adds insult to injury.

It makes me want to chunk in the towel and simply give up trying. Why forgo any foods, if the end result is that I am miserable and bloated anyway?

“Shame underlies self-destructive behaviors:

-Hidden shame often drives self-destructive behaviors and other psychological

symptoms such as rage, avoidance, or addictions.

-Self-destructive behaviors often are an attempt to regulate overpowering, painful

feelings but lead to more shame, propelling the self-destructive cycle.

-Secrecy, silence, and out-of-control behaviors fuel shame.

-Shame makes people want to hide and disappear, reinforcing shame.

-Shame is created in children through scolding, judging, criticizing, abandonment.”

But I also read something else:

“You don’t control people.
You don’t control outcomes.
You barely control your day half the time.

But what you do control is how you interpret what’s happening… and what you choose to do next.

Your attitude is the filter.

If you want to change your life, it begins with changing one thing:

Your attitude.”

Ug! It’s so true. But it is one of those tough truths I have to face. My attitude lately has been a big problem. And all these recent physical symptoms are conflated with past eating behaviour that resulted in these same physical symptoms. Even though my eating behaviour is different now, (dare I say “better”), the result seems to be the same—physical pain, discomfort, and climbing scale numbers. So, what’s the point in continuing to try?

Is Your Nutrition Advice Clear As Mud?

“Eat vegetarian… no, meat is good for you.”⁣⁣⁣

“Eat carnivore … no, you need vegetables and fiber.”⁣⁣⁣

“Eat fibre… no, it feeds SIBO.”⁣⁣⁣

“Eat low FODMAP… no, it starves your microbiome.”⁣⁣⁣

“Eat nuts & seeds… no, fat and phytic acid are bad.”⁣⁣⁣

“Eat fruit… no, citrus and salicylates are bad for eczema.”⁣⁣⁣

“Eat fermented foods… no, histamine is bad.”⁣⁣⁣

The things that have worked in the past are simply not working…this week. But maybe next week whatever has got my system off kilter will clear out, and the ship will have righted itself?

Only time will tell. In the meantime, I have to NOT self-destruct.

Well, you look like yourself, but you’re somebody else, only it ain’t on the surface

You’re Somebody Else

Song by Flora Cash ‧ 2017

I saw the part of you

That only when you’re older, you will see too

You will see too

I held the better cards

But every stroke of luck has gotta bleed through

It’s gotta bleed through

You held the balance of the time

That only blindly I could read you

But I could read you

It’s like you told me

Go forward slowly

It’s not a race to the end

Well, you look like yourself

But you’re somebody else

Only it ain’t on the surface

Well, you talk like yourself

No, I hear someone else though

Now you’re making me nervous

You were the better part

Of every bit of beating heart that I had

Whatever I had

I finally sat alone

Pitch black flesh and bone

Couldn’t believe that you were gone

Well, you look like yourself

But you’re somebody else

Only it ain’t on the surface

Well, you talk like yourself

No, I hear someone else though

Now you’re making me nervous

Well, you look like yourself

But you’re somebody else

Only it ain’t on the surface (on the surface)

Well, you talk like yourself

No, I hear someone else though

Now you’re making me nervous (nervous)

Where are we?

Well, you look like yourself

But you’re somebody else

Only it ain’t on the surface

Well, you talk like yourself

No, I hear someone else though

Now you’re making me nervous

Well, you look like yourself

But you’re somebody else

Only it ain’t on the surface (on the surface)

Well, you talk like yourself

No, I hear someone else though

Now you’re making me nervous (nervous)

I saw the part of you

That only when you’re older, you will see too

You will see too

I know I Shouldn’t Care So Much

Apparently, there are 7 stages of grief. They have added in the initial shock as the first stage. You have to first find out about it (whatever it is that will cause the grief), before you can be in denial about it. And they have also added in processing the grief, as the last stage. Because after acceptance, you need to process it.

7. Processing grief

“There is no right or wrong way to grieve – the process is highly individual. In addition, there’s no quick fix; the healing process takes time and varies from person to person. Importantly, there is no “normal” timeframe, so be patient with yourself.

Suggested strategies:

Express your grief in words or another creative outlet, such as painting or drawing.
Connect with others – this can be loved ones or community support groups.
Ask for help, in whatever form.
Practise deep breathing regularly.
Set small, realistic goals.
Ensure you’re getting enough sleep and aim for some form of movement each day.
Eat a healthy, balanced diet and keep hydrated.
Rehearse how you respond to questions and new situations.”

Me? Because my grief involves a failure of my body, (life limiting failure of my mitral valve requiring open heart surgery to repair or replace—which is still not an easy or quick fix), part of me is hyper-fixating on my body. And I am obviously hyper-fixated on writing about my body. Sorry, lots of “wash, rinse, repeat” in my posts lately.

But who really cares about my body? Well, I care. Maybe too much, but it is part of how I am processing my grief over changes in my body’s health. But what other people think about my body? I don’t really care what other people think, at least not anymore, not like when we are young and we worry about what our friends think of us, (socialized mind stage of adult development).

I’m in my mid-fifties now, and I work hard on my health daily, (even though that is somewhat reluctantly, of late, because of negative thoughts, but I am still working on it anyway). So I really don’t care what someone else thinks about my body, only what I think.

I care—just for me, myself, and I, and that helps encourage me to still take care of my body daily. Sticking to a daily healthy plan.

I still have all the diet culture scripts I grew up with. The ones that said thinner is better, nothing tastes as good as thin feels, a moment on the lips is a lifetime on the hips, etc. AND the perfectly toned bodies of women I grew up with in magazines, on TV, and in film still have their imprint on me. Growing up, those were bodies I didn’t seem to match, because I had…cellulite…even as a teenager. And now, thanks to aging, I have wrinkles. And, thanks to weight instability (losing and regaining hundreds of pounds, literally,) I have shrinkles. And I care, maybe more than I should, about how I look when my husband takes a picture of me. I am not going to lie here on my blog, and say that I don’t care about how I look, especially in a picture that is a visual reminder for a memory of a moment or event.

I don’t care what other people think about how I look…but yeah, I care, for me, myself, and I, (and for the picture), about how I look, for myself.

But! Thanks to about 2.5 years of weight stability and daily walking, I am less…embarrassed (in how I self-judge)…about wearing mid thigh shorts. And again, I wasn’t embarrassed because I worried about what other people would think about the uneven texture of my thighs. I was embarrassed because of what I thought about the uneven texture of my thighs. Frankly, I saw it as a reminder of how I had not taken care of myself, my health. I would even feel painful pangs of regret when I looked at a photo that highlighted something like wrinkled and shrinkled thighs.

In fact, knowing I will regret it all over again if I do NOT take care of myself moving forward, is sometimes the ONLY thing stopping me from turning to overconsumption of a large amount of food (sugar, my favorite) to numb my emotions. Fear of regret is powerful for me. I have been taking care of myself better than constant over-consuming for almost 3 years now. And for me, that is huge, having never managed it for such a long stretch of time before now.

My husband took the picture of me on the left on May 12, 2024. And I was embarrassed 😳. From my point of view, my thighs were really wrinkled and shrinkled from my 70 pound weight loss, which reminded me I had not been taking care of myself when I gained that weight (over and over again).

The picture on the right is from April 25, 2026, and my 2.5 years of regular walking, weight loss, and then weight stability has made some definite improvement. So, it still doesn’t matter what anyone else thinks. What matters is what I think, and I can see positive results. That gives me less regret about the past, and helps me stay in the present and leave the past behind me. The future is also uncertain, health wise, so it is more important than ever to stay in the present moment.

And it does not matter if it’s all down hill from here (realistically, I am not getting any younger, lol), because I am proud of the hard work I have put in to maintain my weight right now, and that I prioritize daily movement. I am reminding myself there was/is a real important reason every day to forego overconsumption of food to momentarily soothe my emotions, and instead to do the best I can with my health, (regardless of outcomes that are beyond my control). Even if it does not rise to the power to make some of my health issues disappear, NOT making my health worse is still power I do have.

And honestly, focusing on wrinkles and shrinkles is a wonderful distraction from thinking about my heart adaptively remodeling itself while it fights with my prolapsed mitral valve leaflets. And this is accountability for me also. How can I post about prioritizing my health despite wanting to chuck in the towel, if I then don’t follow through? If I say here that I am going to stick to the healthy plan, and NOT fall into a pound of sugary foods that will increase my heart rate and blood pressure, then, well, I guess I have to stick the healthy plan.

Only in Canada, eh?

From April 21, 2026, walk in the sunshine, shorts and tank top, (same tank top as in this post, lol)…

To April 22, 2026, free public ice skating at the local arena.

The arena still having ice? Of course it does. This is Canada, and we love our hockey, so our small town hockey team is still practicing and playing in tournaments. (Heck, the Stanley Cup isn’t even until June sometime).

And I have to brag, Sicamous, British Columbia, is renowned for producing a high number of NHL hockey players relative to its small population (approx. 3,000 residents), often cited as having one of the highest, if not the highest, per-capita rates in North America.

Key NHL players from Sicamous include:

Shea Weber, Kris Beech, Cody Franson, Colin Fraser, and Rob Flockhart. (Cody’s dad works at the arena and sharpened my skates!)

Glad I am still making myself go out and live, as that is all any of us can do. And the struggle seems a bit less today, with all these wonderful activities I can do.

Well, I Did Not See This Coming

April 19, 2026 – Gorge Creek Trail.

This is another blog post I am writing mostly just for me. I need to say these things out loud, write them down, put them out there.

I am really struggling.

As this is my very first time in LONG term weight maintenance, I think it is really good that I have created this blog. Because it is so easy to forget where I was at just 2 years ago, and what I was learning about myself, and hopefully remembering that now will help me.

I went looking for an old blog entry from 2 years ago, because we had gone hiking to Gorge Creek (with 4 waterfalls) around this same time in April, and I remembered taking a picture there and using it in a post. I simply wanted to know what exact date in the spring that was, because I want to go hiking there again. (Turns out, the hike I was thinking of was on April 20, 2024, and I posted the picture on my May 1, 2024, post).

It was a struggle to plan to hike there again, and then follow through, just like I had to “make” myself go skating on Wednesday. But like Wednesday, I was so glad we went and did the same Gorge Creek hike we did exactly 2 years ago. I wasn’t sure my body would think it was the “same” hike as 2 years ago, because it feels like so much has changed with what I know about my health since then. But I am still me, and it was not a strenuous trail then or now, or I would not have planned to do it at all. (My husband and I did a very strenuous hike in 2021, long before I knew I had a heart valve problem, and we decided right after that hike we would NEVER attempt that one ever again, and we won’t. Eagle Pass Lookout, you are one and done! Gorge Creek I could do every single day).

It really helped to revisit that same place, and take a similar picture, to remind myself = I am still me.

But, when I went looking for that 2 year old photo, I ended up reading my blog entry from May 25, 2024, and a few lines I wrote back then really struck me today. This one:

“I don’t think I was necessarily taught to hate myself, but I have spent a lot of my life disliking lots of parts of myself anyway.”

And this one:

“And I realize, almost as though it is all of a sudden, those feelings are just gone right now.”

Well…that self-hated is back. I did not anticipate that.

Even though back in 2024, I did not know why those feelings were gone, their absence has really helped me in the last 2 years not go back to overeating to smooth the jagged edges of my emotions. However, I think (I know) they are back right now because of this line I wrote 2 years go:

“It [self-hated] enabled me to do self-destructive things like not take care of myself.”

Part of me, right now, is tired of taking care of myself…because taking care of myself didn’t stop what has happened to my heart valve, so what’s the point? So, if I hate myself again, then I can give up on myself. I am literally looking for an excuse to self-destruct.

Wow.

I know that sounds so stupid, let alone self-destructive. I have also written about being deliberately self-destructive before. It’s an awful thing some of us have done to ourselves. When we hurt, we go inward and hurt ourselves even more, even hurting ourselves physically. Sometimes it helps to hurt physically to match how much it hurts mentally. I have hurt myself in the past in this way, with terrible food choices that cause painful reactions, overeating that cause physical discomfort, and of course, the resulting weight gain that cause both physical and emotional pain.

Wow.

Of course, I KNOW that instead of self-destructing, I must just control what I can, and let go of what I can’t. What I can control? I can stay healthy and steady with planning what I eat and eating what I plan, and not speed up progression of my heart valve failing. BUT, what I can’t control? I can’t slow down the progression of my heart valve failing either.

And that is where I keep getting stuck.

So, I have to be honest, I am really struggling. And only I can validate myself in this struggle, right here, right now, on this blog. Therefore, this is another blog post I am writing just for me. I need to stay it all out loud, write it down, and put it out there. I am really struggling.

And my good old friend self-hated wants to step up to the plate (no pun intended) and help me out (but NOT really help, obviously) by leading me down the path to ultimately painful overeating. I can hear a vintage Roseanne Barr comedy act in my head, (I am paraphrasing from memory): “Fat moms are so much better than skinny moms—because do you want to know my advice? Here, eat this whole cake, and when you wake up from your sugar coma, it will be a whole new week.” 😊

But I know that eating a whole cake is not going to work in the long run to smooth the emotional jagged edges I am dealing with, they always come right back. And tanking my health right now (heavy overeating WILL raise my heart rate and blood pressure=fact) could instead truly hurt me, so I just have to just NOT do it.

I Went Skating, But it is Still a Struggle

I did it, as promised in this blog yesterday, I went skating, April 15, 2026. At first it was empty, but within 5 minutes I was joined by all the regular users of the arena, who greeted me warmly after my 5 week absence. I was absent due in part to my travels in March, but also due to me struggling to find my footing for the last 2 weeks.

Part of my abstinence from certain behaviors around food (emotional eating, overeating in general) has hinged on my creation of a new identity for myself as a “healthy” person. I have consistently been telling myself a story about what healthy people look like (for me). 1. They exercise regularly. 2. They eat in a balanced way, so that they experience weight stability, (which may look like planning what they eat, and eating what they plan). And 3. They make healthy food choices, choosing whole (less processed) foods where they can, and paying attention to macros like protein grams, for example, depending on their individual needs. I also added in emotional health, like emotionally healthy people don’t procrastinate, they prioritize routines and keep a clean home/environment, and they plan their meals ahead of time to keep a running grocery list (and then they can shop for grocery sale items), things like that.

So, I have been identifying with my personal definition of a healthy person for almost 3 years now. And armed with that identity it was easier NOT to color outside of those “healthy” lines listed above. Bonus, I started to feel really good, and look better too, based on what personal outward-looking goals I had for myself, like get to wear a pair of “skinny” jeans. (To each their own in this regard).

But recently finding out my mitral valve regurgitation is NOT exactly stable has really shaken my identity, from my point of view, as a “healthy” person. My cardiologist confirmed that although my mitral valve heart disease is in a relatively stable plateau phase, it is most definitely a progressive situation, and open heart surgery (probably open heart because of my bileaflet prolapse) is inevitable. No surgery this year, but maybe next year, we will see what my November echo numbers say.

The possibility that my heart could simply remain the same for decades was a story I told myself after my very first echo last summer. And it’s true, 50% of people with a mitral valve prolapse can remain stable for decades. But I was not diagnosed with just a prolapse, I was diagnosed last August with moderate regurgitation (caused by bileaflet prolapse). More likely something in there just finally wore out, maybe as long as 6 or 7 years ago, and it’s been progressing ever since. But we’ve only just now discovered it, with the regurgitation already being near the “severe” stage. I was at the top end of grade 2 last summer, and now I am at grade 3. Despite my heart dealing with the chronic volume overload being considered as in a “relatively stable period of adaptive remodeling,” or “plateau,” the condition is progressing, and fairly steadily, considering the small window of time between my 2 echos (August to February). If this meant true stability, instead of relative stability, I would get to wait a year between my echocardiograms. Instead, I already have one on the books for November.

Since learning all that just over 2 weeks ago, I have been struggling with one question: Healthy people don’t have a chronic, treatable (but incurable), heart valve disease that is progressive, do they? What is my identity now that I know it is progressive?? For the time period after my very first echo last summer, until my cardiologist appointment 2 weeks ago, I told myself there is a chance my regurgitation was stable, and could be stable for decades, because it was true, that was a possibility. But now I have learned that is not the case for me. So, who am I now?

Unfortunately, I have not yet redefined my identity based on this new information, in a way that will move me forward in a positive way. Instead, I am struggling.

I know I keep going over and over this same story about it, here on my blog. But writing about it is how I am working through it, and I am glad I have this outlet.

And I went skating.

This is where I will just leave it for now.

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).