This post made me think. It was prompted by someone who has been shamed for celebrating her own weight loss, as if that has to do with how she “must” perceive others, and how dare she.
But her statement is true, on all fronts. We don’t need to lose weight to be happy. It’s an individual choice how we measure our own successes. And it has nothing to do with anyone else. But public declarations, well, they are directed at an audience, and the audience will have assumptions they make about the assumptions of the poster of the declaration.
Myself, I never judge bodies larger than mine, because I know what it is to be judged, AND what it is like to live in a larger body. But someone once wondered if I outwardly judge people’s bodies, because I certainly inwardly judge my own body. But really, I used to judge myself for a bad grade without ever giving a thought to someone else’s bad grade. What we deem a “bad” grade is so individual. I believe some of that judgement (maybe all) correlates to our effort. For example, like me with French verbs, omg, I worked sooooo hard for the B minus that I got, that I never, ever thought for even one second that my B minus was not the most incredible accomplishment ever!! But for everything else, yeah, I was very disappointed that my Master’s degree consists of 15 A’s and just one A minus. Rats on that lone A minus, could I have worked harder? Maybe.
So no, I don’t judge others just because I judge myself. Because for me, the metric is effort. I know my effort. I do not know someone else’s effort. And I certainly know, firsthand, the effort involved in keeping weight off. It is very…involved. Frankly, at times, it can be a very intense struggle, especially in our current food environment, when a box of grain free gluten free cake mix is just one click away on Amazon. It involves intentional choices every single day. I have not always won this war within myself, and so I self-judge. And on the other hand, I have celebrated on this blog all my wins in the last 3 years.
The moral of the story is really don’t judge others, and don’t assume self-judgment, or self-congratulatory either, has anything to do with anyone else.
“It doesn’t matter how well you eat, you can still end up sick.
It doesn’t matter how much you rest, you can still end up sick.
It doesn’t matter how strong you are, you can still end up sick.
It doesn’t matter how much exercise you do, you can still end up sick.
It doesn’t matter how positive you are, you can still end up sick.
It doesn’t matter how hard you try, you can still end up sick.
And chronic illness isn’t impartial. It isn’t biased.
It doesn’t care how old you are or what religion you practice.
It doesn’t matter how much money you have or where you grew up.
Chronic illness is hard.
We grieve our old life. We wish we were normal. We live life sick.”
But it absolutely does matter.
I matter.
And my attitude going into today is ALL that matters.
I can simply choose to have a good day, despite feeling physically crappy. It’s still a good day to be here, breathe fresh air, clean a house that is my own, eat delicious food, hug my husband, and pet my cat and dog.
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.
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.
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 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.
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.
Most of the time, I feel alone living like this. All my thoughts spiraling, and then I add on top of those the thoughts that I shouldn’t complain, that other people have it worse, and I need to look at all the positives, not the negatives…yeah, when my thoughts spiral, those thoughts just invalidate how I actually feel, and isolate me.
This is why I find coming in here to blog out my thoughts to the internet therapeutic. I take a deep breath, sort out some of my spiraling thoughts, express them in writing, and then I feel a bit better. I feel heard, even when it’s just me listening to myself. I give myself a mental hug for having to deal with these thoughts, and to not necessarily be able to control them, but to at least see a way through them.
I carve a way forward through all those thoughts, counting, measuring, and inventorying all the things. And then go on with my day, looking exactly like I have it all put together, behind a polite smile and my to-do list.
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.
I don’t always make a big deal about Valentine’s Day, but this morning I feel inspired.
Because my dog loves my husband more than me.
And I think my cat might as well.
Animals are usually very good judges of character, and it is no exception in our home. We have had a number of pets in the 35 years we’ve been married, (I wish we did not ever have to outlive a pet, but sadly, that is just the way they were divinely designed). Our senior dog Bo came to the end of his journey in 2019, but we knew his end was near and were very lucky, (divinely lucky, in my opinion), that my nephew’s family had just had a litter of kittens. My great-niece was visiting him up north that summer, and it was perfect timing that when she was coming back home to the south, and she could bring us one of the kittens.
My husband picked her picture out of the group of kittens because she had 2 different colored eyes. We didn’t even know at first whether she was a boy or a girl, just that she was the one he was sure he wanted. Even though someone else had already spoken for her, for that unique feature, my nephew instead let us have her because we are family, after all. It turns out that feature made her congenitally deaf, but we could not love her more, and just take precautions when letting her outside.
Presley, born June 7, 2019, arrived at just 8 weeks old on August 2, and we lost our Bo on August 10. In my grief, the next day I felt very desperate, we have always had a dog, and a new kitten could only distract us from our pain to a point. I started searching online. Despite the possibilities of a story that begins with “I started searching online” having a disastrous outcome, I ending up finding a litter of half Jack Russell half Rat Terriers that a wonderful lady had bred herself in her home, not as a back yard breeder, but from her own 2 beloved personal pets. They had been born August 2, the day kitty came. In the picture, I could see that one of them had markings just like Bo, and like kitty, I did not even know if they were a boy or a girl, just that I was sure they were the one I wanted.
And that is how we came to have our 2 girls, Presley and Ripley, both Friday babies, born exactly 8 weeks apart.
And even though most of our pets seemed to have loved us equally, or maybe seemed to love me more even, as I am the one to most often fill their food bowl, both our girls seem to love my husband more than they love me. That actually makes me look at him with renewed love, seeing him through their adoring eyes.
The Bio Joy Diet 