When Things Cannot be Solved Only Managed

Lots has happened since my Dexa scan in June that I wrote about here.

One thing I noticed on the scan was my hands. Even though I had walked over 2 kms to the health center for the scan, on a warm June morning for my 11:00am appointment, (which certainly should have got my blood flowing nicely), my hands showed completely purple on the scan, which is an indicator of lack of blood flow. Even though it is somewhat normal for blood flow to be less in hands and feet, in my scan my hands showed a marked difference than that of my feet.

I felt this “proved” (at least in my mind) the pain I had been feeling in my hands since wintertime, which had not gotten any better now that it was summertime. I called my doctor and started a series of appointments and tests.

On August 14, 2025, at 54 years old, I was finally diagnosed for the first time with hypermobile Ehlers-Danlos Syndrome (hEDS). Additionally, I drew the “Could come with a heart valve problem” card: I have grade 2 (out of 4) mitral valve regurgitation.

Story:

I have had 10 years of complaints to doctors, including dizziness, (had my ears and hearing checked to no avail), Achilles tendon issues, painful crepitus in my knees, an inguinal hernia seemingly out of nowhere, slow gastric emptying and digestion problems, excessive allergy reactions that felt like over-reactions or immune reactions, just to name a few of my various complaints, which ultimately led nowhere when discussed with various doctors.

Not to blame the doctors, different ones tried to help at different intervals, but my issues were all over the map, with some rising to an acute level, (which would then prompt me to go to the doctor each time).

If there is difficulty connecting the issues, think “connective tissues…”

My most significant symptom was by January of 2020. I would feel shortness of breath if I suddenly had to jog across a crosswalk, despite walking daily and otherwise being reasonably physically fit. And I would feel winded when carrying something heavy, like a bag of dog food from the store to my vehicle. I felt like I could not take as deep a breath as I used to. The doctor never listened to my heart, he just ordered a lung function test, the results of which were that my lungs were fine, and that was the end of it. 10 years of complaining…only to be told over and over how great I look, and nothing could be wrong…that I probably just had anxiety…

Spoiler alert, it was not just anxiety.

To finally get some answers, it took severe attacks of Raynaud’s phenomenon in my hands, (since 2024 continuing to present, resulting in painful neuropathy, which has also now started in my feet), which led to finally having an echocardiogram ordered, the results from which I found out I have heart valve disease.

When I saw my mitral valve on the ultrasound…both sides looked like tattered drapes…it’s an image that is kinda burned in my mind. 3 days later I was told what the “tatters” indicated: “A torn chordae tendineae of the mitral valve results in mitral regurgitation (MR) when the damaged fibrous cords can no longer properly support the valve leaflets, causing blood to leak backward into the left atrium during the heart’s contraction.”

But why did I develop heart valve disease?

Diagnosis:

Ehlers-Danlos syndrome, hypermobility type (hEDS), which is a connective tissue disorder. This has led to progressive heart valve disease, specifically grade 2 mitral valve regurgitation complicated by the fact that both sides of my mitral valve are involved in the leak (bi-leaflet).

“Ehlers-Danlos syndrome can cause dysautonomia, specifically autonomic nervous system dysfunction affecting blood pressure, blood flow, and body regulation, including dizziness, lightheadedness, temperature and sweating dysregulation, and issues with the gastrointestinal (digestive) system, such as delayed gastric emptying, bloating, cramping, or constipation.”

These are all symptoms I have, but the doctors told me it was anxiety, wanted to give me anxiety meds, but I said no thanks. Other than taking daily Gravol for dizziness, and more recently Tylenol 1’s with codeine for the pain in my hands, I do not take any prescriptions at all. I am being referred to an ophthalmologist to establish a base line for my eyes. Ehlers-Danlos can negatively affect the eyes, more so than regular aging. I am also waiting to see a cardiologist.

Currently, my rate of heart valve disease progression is unknown, as this is my first diagnosis via echocardiogram, and I do not have any previous echo for comparison.

“Your measurements fit with Grade 2 / moderate mitral regurgitation by standard echo criteria.

You have:

• Bi-leaflet prolapse

• Eccentric jet

• Vena Contrata (VC) and PISA at upper-moderate range

(Based on an echocardiogram, having a Vena Contracta (VC) and PISA at the “upper-moderate” range means you have significant, or severe, valvular regurgitation = leakage).

• No left atrial enlargement yet

• Mild left ventricular dilation but preserved function”

I plan on living a long time with this heart valve disease. Best guess I was stage 1 about 5 years ago when I first noticed symptoms (and sadly still felt somewhat gaslighted by the doctor, even though he sent me for the lung function test, ug). That means I could have 10 years before stage 4. Unfortunately, when both leaflets prolapse like mine have, it’s called bi-leaflet mitral valve prolapse.

“This pattern is less common than isolated posterior leaflet prolapse.

—Significance: Severity risk – Bi-leaflet prolapse can sometimes be associated with a higher likelihood of progressing MR over time, because both sides of the valve are involved in the leak.

—Surgical repair: In cases that become severe and need surgery, repair is still possible in experienced hands but can be a bit more complex than isolated leaflet repair.”

Frankly, I cannot see me ever having open heart surgery to try and repair the valve, even if it gets to stage 4. Because of the Ehlers-Danlos, I think (I have not yet talked with a cardiologist) that it would be like sewing cardboard to tissue paper. Instead, I am just going to continue to live my best life each day, love on my husband and our home and our pets, and work to keep my heart muscle as strong as possible, so it can handle the pressure of the back flow of blood (thanks to my shredded heart valve) for as long as possible before causing other problems. Despite how bad it sounds, I am otherwise in excellent health (which is why it was a huge surprise for my doctor, after the echocardiogram). This is proof you need to be your own advocate. If you think something is wrong, even when you “look” fine, do what you need to do to keep following up.

hEDS is a spectrum, so not all cases will look alike. Of the 13 (or is it 14) types of Ehlers-Danlos the hypermobility type is only one without a genetic test to confirm. In fact, because I am 54-years old and post-menopausal, I cannot demonstrate the hypermobility I have had historically. Right up until the last minute, during my July 2025 rheumatologist appointment, he was almost going to send me on my way with another “It’s all in your head” attitude, then he finally listened to my heart. Not everyone with hEDS will have mitral valve prolapse, let alone progress to full-on mitral valve regurgitation, but when he heard what he called a “significant murmur,” that was when he finally looked at me as though there really could be something wrong.

Unfortunately, it took drawing the heart valve card of hEDS to get noticed.

I am glad to finally be believed: “Oh, maybe your hands do hurt more than average.” But I will admit, I am a bit saddened to find out I have heart valve disease that cannot be solved, or cured, only managed, for the rest of my life.

So, I move forward with the determination to double down on my health journey. I have upcoming appointments with an ophthalmologist, a cardiologist (when I get through the wait-list), then a bone scan done at a hospital (because “a Dexa scan is not medically diagnostic” according to my doctor, lol). And I am glad I do not have to play catch up on my health, having made changes for the better more than 2 years ago. Instead, I can just keep doing what I am doing, and work to improve my body composition with less body fat, more muscle. I will manage this diagnosis just fine. I am only just starting to learn about hEDS, and mitral valve regurgitation, but building lean muscle and overall strength will truly serve me. Sitting back and not moving daily will decondition me faster than average. I will continue to prioritize daily walks and healthy eating.

8 Years, 25 Pounds, Same Shirt

Hawaii, February, 2017

At home today, June, 2025

I have always been a pear shape (until I finally got down to my current weight, 121 pounds). So much so, that every 5 pounds gained or lost, was a whole (yes, a whole) inch difference on my hips. The 25 pounds difference in these pictures was a 5 inch difference on my hips, (40 inches down to today, 35 inches). And yet, I could wear the same shirt, and even see a hint of yes, a rib bone.

The reason I point this out is to remind myself, (honestly not trying to brag=hey look at me), that little slips off my food plan, (when it comes to overeating on, for example, a long weekend, to “celebrate”), means I could easily gain 5 pounds in just a few days, and my shorts inevitably (and seemingly overnight) would get uncomfortably tight.

Additionally, I recently had my first Dexa scan, and (as if I needed any proof) my body fat percentage was only 18.7% on my trunk, but 35.3% on my butt and legs! (Add in my arms, and my total body fat percentage as an average was 25.7%). Wow, what a huge difference!

Moving forward, I am working on changing my body composition for the better! I need more lean muscle mass, which can help my bone density, which is also VERY different (out of balance, proportion) between my trunk and legs (and not in a good way, at all).

Here’s to building strength, (still working out my new routines), and I will be getting another Dexa scan one year from now.

Old Lady Butt

My self-talk is far more loving these days. I accept my “shrinkles” from my weight loss of more than 70 pounds (from 2023 to the end of 2024), and technically I am 90 pounds down if you count my absolute highest weight ever (2003).

But I have experienced a certain degree of body shaming, including at a young age. Some of it was not malicious, it was merely observation, (when puberty hit and I developed “saddle bags”). But when you are 12 years old, observation can sound like criticism.

And back in November, someone’s observation, in connection with those infamous “saddle bags” of mine, and the shape of my legs now, post-weight loss, was “that’s because you have an old lady butt.”

In the past, this would have bothered me. Now, I embrace my butt, my shape, everything leg about my legs, because they are incredible. My legs (thighs and butt included) carry me on hikes up hills. They carry me while walking a 15K back in March. They peddled my electric assist bicycle on a nearly 50K bike ride just one week ago. TMI alert, they allowed me to easily squat in the bush for a pee (twice).

Go me, and my 54-year old lady butt!

Relief Seeking Behavior

Well, I survived last night cravings, despite getting flirtatious with a couple spoonful’s of peanut butter…

Maybe it was not emotional pain specifically last night, (I do NOT stuff down my emotions with food anymore), maybe it was my chronic physical pain that was pushing me into relief seeking behavior. I am currently dealing with daily arthritis (maybe it’s arthritis, I really don’t know what it is…) pain in my hands that I haven’t had to deal with before. (At least, I have not had pain that is daily like this is since going grain free).

I am better off petting my pets than grabbing a spoon, lol.

Consistency Does Not Get Easier

Not sure where I will wear this outfit, but it was a gift, so I had to try it on.

I had a productive few days after getting home from holidays, but then tonight, I feel depressed, I am craving sugar, I am craving my old overeating behavior.

It’s like a constant fight against myself, against my old habits, the ways I used to soothe my emotions. I may have changed my identity into someone who does NOT behave that way anymore. But it is like old identity did not die, she is still there inside me, as though she is just biding her time for when I let her out…

Your Weakness is Your Strength

Finding a New Way to Cope with Stress

These are my skinny jeans.

You know, part of me feels like these posts about “Look at me, I am in Maintenance!” come across as a little braggy, but I am just reminding myself lately that I do not want to go back up the scale to the old me. Yes, I have changed my identity that I spoke about here.

But…

I have been thinking (obsessing?) lately about the feelings I used to have when I simply would eat food for fun, for indulgence, the way I still see other people eating food. For example, go to a movie theatre. I will see people sitting all around me just eating—for the pure pleasure of eating. I mean, come on. No one is sitting there in a movie theatre eating, for example, a mixed vegetable dish as a meal to nourish their bodies. They are eating food (popcorn and candy, etc.) for fun. Absolutely, I used to do that too. And this week and last week in particular, I have been missing how it felt to escape into something (anything) to eat for the pure oblivion of a few moments of time while just eating. Because for those few moments of time, real life (with its real stresses) just disappears. Oh, real life comes rushing back in as soon as the food is done, and I must NEVER forget that, but for that little bit of time…

So, the “desire to overeat thoughts” have been hanging around again lately. They have been popping in and out of my head for almost 3 weeks now. This is why I did my last post here about feeling so comfortable in the body I have right this minute, so I don’t give it up. I was trying to remind myself why I say no every day to eating (overeating) foods I did not plan.

It seems that lately, when the same old life stresses (that come and go for everyone, I am not unique) are particularly intense, I notice that it feels the very same as in my past when similar stresses were also very intense, and I would overeat my way through the ebb and flow. It was at first an escape. Then, the misery of regaining weight was a distraction. It’s this old familiar pattern of response. Today, I must respond differently.

So, I’ve got to be willing to be someone for whom the food and the weight loss is solved, (now, in the present tense). Period. No more past patterns of behavior. Even when it seems hard to have given up that old version of myself, I am instead embracing that I am the new 2.0 version of myself. I remember the old version. I have even given her a big hug.

But now I step back and hold the old me at arms length. I am not her anymore. I don’t stuff down my feelings with food. I do not replace those feelings instead with feelings of misery about regaining weight. I used to know all about how to feel about regaining weight, I was comfortable with that negative place. In that old place, instead of hugging the old me, I’d be slapping her around and hurting her even worse than it felt that real life was hurting me at the time. I was an expert at that behavior.

So, maybe I am not exactly an expert at dealing with my emotions as this new version of myself (which is why suddenly the old me is standing just off stage. I can see her out of the corner of my eye). But what an unproductive and self-destructive state of existing it would be to go backwards at this point. And I do not want to simply exist like that (in emotional pain and trying to stuff it down with food) anymore.

I am the new me, and I am living my life feeling what I need to feel, instead of stuffing it down.

Maintenance is not Glamorous

Maintenance is not glamorous.

However….

Everyday, because I maintain my current weight, I get to wear clothes I love. In the past, I wore clothes that were sometimes tight and uncomfortable. Or even if they fit my body perfectly, I never allowed myself to feel “comfortable.” Instead, many times I found myself hyper-aware of my clothing, and therefore self-conscious of my larger size.

Even if it is not “good” to label my body as “large,” (we do not have to accept any labels we do not want, and can instead love ourselves at any size), my body was simply larger in the past than it is today. And good or bad, clothing comes with its own labels as to their size. I believe there is nothing wrong with any size, 4 or 16, small or large, but if we do not feel “right-sized” for who we want to be, then we may find ourselves moving through life with a feeling of not being comfortable in our current size. I definitely experienced this in the past.

Now I move through life feeling comfortable in my current size.

So, maintenance is not glamorous. It is not as exciting as being in a weight loss phase, with new lower numbers on the scale to track each week, or month, or lower measurements, or new clothing sizes that now fit, (and new clothes to buy!). But I must never let myself forget that I am comfortable everyday, in all my clothes. I can go to my own clothes closet and select to wear my own version of the ever elusive—before which would be from the depths of the back of the closet—skinny jeans. And I get to wear them any day I want, not just in some future picture in my mind, “I’ll wear those when I weigh X.”

Of course, it’s not just clothes. It’s also the daily exercise and activity I can do each day, while feeling strong, able, and most of all—comfortable.

Living in Brilliant Color

I heard something on YouTube the other day that really resonated with me.

“I live with my food black and white, so that I can live my life in brilliant color.”

This is what I do. My food is black and white. I simply plan each morning what I will eat today, and then I go about my day eating what I planned. And I plan good food I will enjoy eating, (which helps a lot!). I measure it all out, and keep track of what I am eating on an app on my phone, so the scale stays exactly the same (within a pound or 2). This “black and white” behavior keeps my thoughts about food calm and quiet, instead of lit up by variable reward, that I wrote about here.

What a lovely January it has been.

Being Intentional, and Too Much Cake

Intentional is my word this year. For the last 5 years my sister and I (it was her idea) have an anchor word for the year, which is one on which we can focus our thoughts throughout the year, with the intention of growing and flourishing along with the meaning of our chosen word.

2021=Culmination

2022=Momentum

2023=Secure

2024=Unimpeded

2025=Intentional

Being intentional, for me, has two main focuses. 1. Being in the moment and recognizing my thoughts and feelings, and then 2. making more deliberate choices and decisions based on that.

Firstly, being intentional requires me to be in the moment, to experience my life not overly distracted by future worries, (which has been problematic for me in the past, a long ingrained habit back to childhood). Being in the moment has resulted in me being very aware of myself, and differentiating between what are my actual thoughts, and what are my feelings, (there is a difference).

And then secondly, making decisions and choices NOT on autopilot to my old habits and triggers, or on just my feelings, but based on my reasonings, my thinking. I am taking the wheel and driving the bus, so to speak, far more often than ever before.

So yesterday, I thought I would make a cake, (gluten free, rice free, made primary with cassava root four).

Throughout the Christmas season, I had planned on having a gluten free dessert option, if one presented itself. I eat meals, I love what I eat, I put real sugar in my tea, so I do consume “sweet” things. But I don’t usually have any desserts, (which are defined as the sweet course eaten at the end of a meal). But it turned out, a gluten free dessert option never came my way. Okay, no desserts through Christmas.

Back on Canada Day, July 1, I had planned to have a treat while watching the fireworks, some gluten free fudge. But instead of having one piece, I had three. The next day, I thought a bit about why I did not stop at one piece, but the fudge was all gone, so I didn’t really think enough about it to figure out why my decision to have a treat ended up in a bigger portion than I had planned.

Until the cake last night. Three pieces later, I realized I just wanted to eat. It. All.

I wasn’t eating the cake because I liked it, (although I did certainly like it, it was very, very good), I was eating it to overeat it, just like I used to. I used to eat to overeat. Overeating (mostly sugar) either anesthetized any painful emotions I was having, or it stuffed my stomach to the point of discomfort, so that the physical pain was a distraction from whatever mental pain I was having.

But last night I was not having any mental pain, (other than the normal worries people worry about, that ebb and flow with what is happening in our lives at any given time).

(And writing that makes me realize, even more than before, that this is why I had to stop overeating my way through life. Ebbs and flows, peaks and valleys, will always be a part of life).

Anyhow, I wasn’t experiencing an emotional reason to overeat the cake last night. I simply overate it because that was the only reason I had to eat it in the first place. I wasn’t hungry, I had just had dinner. I realize I have not yet learned to intentionally eat cake, for a specific reason, like a moment (not a whole evening) of pure enjoyment. I have only learned how overeat it (because of ingrained past behaviors) for emotional reasons.

It would have helped if I had realized that BEFORE I baked the cake. I didn’t realize having a good reason to eat it would help divert me from slipping back into an old habit.

So, today? I don’t want to eat the cake unless I am eating it for a new reason, a new way to experience my food, (in particular dessert, which I so rarely eat). In the past, I didn’t just eat dessert-like foods, I overate those foods to create a particular experience. Now, having a different reason to eat them will change my experience of them. I don’t want to go back to my old way of experiencing food.

When I say I experience food, I mean as a verb, not a noun. As an action, as an encounter or to undergo (an event or occurrence). In the past, I either used to only overeat dessert-like foods, or I abstained altogether. Because I have been primarily abstaining for the last 18 months, I had not had an opportunity to be intentional about eating them, and therefore unravel some of this old pattern of behavior for myself. Instead, last night I ate some cake, then ate some more, then ate some more, until I said, hey, wait a minute! What is going on here!?

Now I know what was going on.

If I have some cake today, I will have a better reason to have it. If it was still Christmas, or a birthday, that would have been a good reason. But honestly, I don’t feel like it right now. I just finished a cup of tea sweetened with real sugar, (which is additionally sweet from the milk I put in it, because I drink tea almost like a latte with a lot of milk, and milk is quite sweet), so my desire for something sweet is already entirely satisfied. Hmmm, who knew I would need a good reason to eat something, or I would truly prefer to just not eat it at all.