What Having a Chronic Disease Really Means: An Identity Shift-Part 3

Yes, my own weights (burdens) are still something I can hold, and hold well. Getting old is a privilege, so I hope no one thinks I am not grateful, because truly, I am. When I say it’s a privilege, I am not talking about my kind of “old” in my fifties. I am talking about my mom’s kind “old,” she is privileged to be 81. (My dad passed away at 80, he never got the privilege of getting any older than that). But this 3-part series about my health is not about me complaining how bad I have it, because I don’t really have it bad. But I am dealing with big changes and new limitations, when I compare myself to myself, and no one else. And I am thinking that although getting old is a privilege, it is not for the faint of heart. ♥️

Parts 1 and 2 of this series are here and here.

First of all, I want to acknowledge (mostly to myself) that yes, obsessing (writing a lengthy 3-part series) on a problem, can be how I keep it a problem…But I would also argue that sometimes I really need to explore (obsess) why I am embarking on certain behaviors, (that are not serving me), so that I can make the changes I desire.

And I need to make a serious decision about what I am going to do moving forward.

A body that supports the life I want to live: that’s what I want. But my body will tell me what it is able to do, on any particular day, and I have to be willing to listen to what it needs, regardless of my wants.

In the past, it was almost always a mental feeling, (a mental block, like simply feeling unmotivated and lazy), that was holding me back from healthy activities, in favor of sloth on the couch with Netflix. And all I had to do was gather the right amount of determination and fortitude to push past that mental feeling and just go do the activity I was resisting, (and be so happy afterwards that I did). But that is the biggest change I now need to make with chronic disease. I must correctly recognize the difference between a mental feeling (block) and a true physical feeling (signal) from my body to rest. And then determination and fortitude can instead be employed towards how I feel about and react to a physical need that interrupts my wants. Just like when I use determination and fortitude towards how I feel about and react when I want to eat what other people are eating, but I can’t (because my health demands I don’t, because I have Celiac). My health will make new demands on me, and I must start listening.

The state of being in which I am currently = someone who has been diagnosed with more than one chronic disease, (and sometimes I think holy crap, how is it possible that I could have more than one??). That has to shift—at least part—of my identity, or I am in denial and not listening to my body’s needs. The identity shift is for the part of me that needs to be actively managing my diseases to control symptoms. And not feeling sorry for myself and reacting by instead not prioritizing my health. Actively managing symptoms does not necessarily mean improving them, but it does mean learning a new way of existing with them, without thinking I am just NOT being determined enough = moral failing = might as well indulge in a vice. Without that shift in my identity, as someone who has a chronic disease, (or diseases), I have recently found myself in denial of having chronic diseases at all, so then I have had an excuse to NOT take care of my body.

1)Right now, my biggest priority is actively maintaining my cardiovascular health. My mitral valve heart disease, and resulting regurgitation, (remember, not everyone with this disease has regurgitation that has become progressive, but that is what I am dealing with), has risen to the top as the chronic disease I think of the most in terms of active management.

2)But because of that emphasis on my cardiovascular health, it’s easy for me to forget that I have also have something that is considered both a medical condition and a chronic disease—hEDS—and that has resulted in two inguinal hernias. The first one did not seem to be a problem. The second one, however, is increasingly becoming a problem.

But this new identity of mine that requires all this active management?? I can see now some of my roller coaster of emotional ups and downs (and some overeating for the first time in a long time) are related to resisting my new identity as someone with chronic disease. Instead, I need to embrace it and turn it into a super power. If I want to flip the script on it in a positive way, then I actually have to embrace it as part of my identity.

Michael J. Fox is an example of flipping the script on a serious medical diagnosis. He even named his memoir Lucky Man: A Memoir. How could he think himself lucky?? But this is a perfect example of embracing a new identity and turning it into a super power: first to help himself, (his life did a complete 180 and it also saved his marriage), and then to help others with education and advocacy.

Some days I just do not feel like turning anything into a super power. Especially days when I have a problem with my new hernia, which is what prompted this whole long winded 3-part blog series. I have had two “attacks” in the last two weeks, that truly escalated to me wondering if, instead of temporarily incarcerated, my intestines could perhaps be strangulated, in which case it would have been time to go to the ER, medical invention would be absolutely necessary, not optional.

The new hernia (that bulges through a weak spot or most probably an actual tear in my lower abdominal wall) has begun to allow for a temporary incarceration of material that specifically aggravates a nerve. I have never dealt with nerve pain before. It is a very specific pain. In my experience, it’s not even the intensity of the pain when it is occurring, (but it is undoubtedly intense), it is that all my activities halt. No amount of determination and fortitude can allow me to still function through the pain. So far these attacks are temporary, (oh my, so grateful only temporarily), but they take me out of commission. All I can do is ball up on the couch or bed in the fetal position until the material shifts out of the tear, and stops coming in contact with the nerve.

Last week was my longest attack yet, at 90 minutes. It was so intense, I ended up sweating through my shirt. I would not have been able to drive a car. It was scary.

I am understandably concerned.

But my concern does not erase all the issues I have with the thoughts of undergoing any surgical repair. I am not sure why I have developed a severe level of phobia in this regard, but having a logical mind about it does not magically erase the visceral fear I get just thinking about medical procedures, of which the most intense one I can think of is surgery.

I recognize it’s a problem that I would need to overcome to allow a surgical repair (of anything) moving forward.

But…

I am allowing myself a lot of back and forth dialogue in my head about it:

On one hand, there is serious alarm, (especially after last week’s 90-minute attack, and then again Friday’s 60-minute attack). I think to myself. “I must call my doctor immediately and demand surgical intervention!” Or at least start the ball rolling as soon as possible, because there will probably be other tests and then a waiting list.

But then on the other hand, I think, “But so many doctor visits I have had in my life feel so uncomfortable and difficult. And those visits aren’t even 1/10th as bad as a procedure!”

Then lastly, I think, “Maybe I will be fine, or the next attack will just be a few twinges that pass quickly…”

The decision is made. I am NOT ready to make the decision and call my doctor, to start the ball rolling for hernia repair, prior to dealing with my next echocardiogram in November, and first seeing where I stand with that. I want to see if I can hold out with this hernia issue for 4 more months, then see where I am at with the heart valve progression before moving forward.

Omg, the relief I feel delaying a decision on the hernia issue—it’s palpable! (As palpable as material stuck in the tear during an attack, lol, leaving no doubt as to what is causing the pain). That relief tells me (for now) that is the right decision for me. Oh, such relief I feel.

But, I am embracing my new identity, to be more careful about what I can and cannot do, (high heels and ladders are to be avoided, 3 different attacks now have been linked to time spent on my toes). By listening to what my body wants and needs, without jumping to the conclusion that I just need to be “mentally” tougher and just power through, I can better manage my symptoms and do my best with the healthy I still have.

What Having a Chronic Disease Really Means: An Identity Shift-Part 2

Part 1 (of what is turning out to be a 3-part series) is here. 😊

I have decided to surrender to the fact that we all wear out as we age. I am simply wearing out a little faster than average. And writing about it in this blog is my therapy.

But certain things wearing out and giving me a bit of a scare (hernia), is no longer a reason to continue making bad choices.

The bad choices I have been making are daily giving into thoughts of “what’s the freakin’ point in trying to slow progression of something that is entirely out of my control,” and then surrendering to my good old vice of overeating.

Sigh.

A person is never “cured” of their old habits, they must instead decide to make the better choices, each and every day. My husband went to a movie the other day. His choice: the habit of having popcorn at the movies. Myself, I must make a better for my personal health choice than that, and stop giving into the adage, “Old habits die hard.” Just because an adage is a traditional, well-known saying that expresses a common observation or a general truth about life, does not mean I have to let that be my truth.

Vice is an interesting word choice. Vice is “A practice, behavior, or habit generally considered immoral, depraved, or degrading. It broadly refers to a moral failing or weakness in a person’s character.” Maybe vice is a harsh word for unplanned food eating, but it has been, most certainly in the past, a bad habit of mine, one with detrimental consequences. Eating unplanned food is the whole reason I, so many times in my life, have been medically classed as overweight or even obese, followed by times of disciplined eating resulting in weight loss…over and over and over again. Not about how I looked, but about how I felt, and what I could do. I am done self-judging how I look. But I know how I feel with extra weight, and I do not want to return to old habits that will lead me there.

For me, unplanned eating (overeating) leads to unhealthy weight gain, so yes, I would say it has been a vice of mine. Ever since talking with my doctor on June 23 about my low ferritin, RBC, hematocrit, and sodium, I have been indulging in a bunch of overeating, instead of planning, preparing, and eating with intention. With my current health concerns, I believe that keeping unhealthy weight regain OUT of the equation is important. And yet, my thoughts for the last two weeks have been mostly the opposite, “it’s not important at all, it’s completely pointless, I might as well eat what I want.”

Sigh.

Sure, I said no one is coming to save me, only I can save me. But what does “save me” even mean? I cannot save myself from certain medical symptoms and discomfort, I can only stoically live through them, (they come and go), and be thankful for the incredible health and abilities I still have.

I have decided if I simply accept and surrender to a few new limitations, (hernias, some worsening eczema, ocular migraines—the connection between migraines and mitral valve regurgitation is well documented), that will help me focus on and preserve the health and abilities I do have. Instead of slamming up against the rock (in matters of my health) in the stream, I must figure out how to go around it. It’s the impeded stream that sings.

Unfortunately, being diagnosed with the chronic diseases of mitral valve heart disease and hEDS, do NOT have the drastic health improvements attached like Celiac disease did, where all I had to do was go strictly gluten free, (not easy, but doable), and positive health improvements were the result. This is different. This is a slow decline, (just like with all aging that everyone experiences, I am NOT special in this regard), but just with a little faster pace. There are not really health improvements I can look forward to. And not accepting that simple fact is actually holding me back.

I get the power of positive thinking, and I use that power when it comes to the really good health (all things considered) I have now. But thinking (waiting, hoping) it’s going to somehow get better? Well, that thinking is not serving me. Simple. It’s not serving me in a positive way. If I accept a certain amount of decline, (instead of getting depressed about it and going off the rails with unplanned eating), then I can once again move forward with healthy choices.

There is nothing I can do or change to affect the same level of positive health results, like with going gluten free for Celiac did, with what I am dealing with right now. And I am dealing with it for the rest of my life. So, when the negative voice in my head asks why bother changing my identity in some positive way, if it won’t really improve my health in the end? I must instead embrace that I have the power to not speed it up, and that, in and of itself, is a form of improving it.

I am still figuring this all out. But I know that there is a happy and productive middle ground where I need to find myself.

Between the two extremes of:

If I just try harder I can fix this! (Like with weight loss and going gluten free for Celiac).

And

What’s the point in trying at all if this is NOT fixable?

I thank myself in advance for bearing with myself while I figure this out.

And I thank anyone else out there who is reading this too.

What Having a Chronic Disease Really Means: An Identity Shift-Part 1

I had mentioned identity in this post. In the last year, I have spent a lot of time wondering if I should “let” my identity change, because to a large extent we absolutely have the choice when it comes to our identity. We do not have to let anything, up to and including medical diagnoses, change our core identity.

Chronic disease doesn’t hurt your body first. It hurts your illusions. I finally realized no one is coming to save me, and that is good. It’s about time I simply save myself. And for the most part, I have been still doing my core identity things, as a healthy lifestyle enthusiast. But there was a part of me that was waiting for something or someone else to step in and do the heavy lifting, so to speak. To fix or change my new reality. And that thinking has got to stop so I can move forward.

There is no denying the fact that my day to day life looks different than it did a year ago, (and I actually do need my husband to do heavy lifting for me, that is medical fact=heavy lifting can both strain heart valves and inguinal hernias). But even without heavy lifting, this week has tested me. I am glad that the week is almost over.

Chronic disease is defined as “a long-lasting health condition—typically lasting one year or longer—that requires ongoing medical care and often limits daily activities. Unlike acute illnesses (like the flu), chronic diseases develop slowly, are rarely curable, and are instead actively managed to control symptoms and prevent complications.” —Google

The first identity change I made was being diagnosed with Celiac Disease. In the fall of 2011, at the age of 40, I absolutely embraced my diagnosis as part of my new identity. I truly helped to embrace a new identity, because there are a lot of changes that needed to be made to actively manage Celiac, and adopting a new identity surrounding that diagnosis is one of the tools with which to make changes for life.

And the changes I made were life changing! But more importantly, full of incredible and very noticeable improvements in my overall health.

Then recently, my sister was diagnosed with Celiac, and I felt a last puzzle piece fully shift into the place that allowed me to let go of the teeny tiny 1% piece of doubt that I had held on to, (not having done the intestinal biopsy). Don’t get me wrong, I was strictly gluten free, if not fully believing the initial diagnosis via blood test without biopsy, but then fully believing what my drastic health improvements told me. But having a family member diagnosed in a medical setting as triple positive, meaning three of the primary celiac blood tests (serology panel) returned positive results, (a form of more conclusive testing that was not available in 2011), that really shifted a piece of my Celiac identity. I truly have an autoimmune disease, not just a “sensitivity” or intolerance.

But being diagnosed with chronic diseases that do NOT have the drastic health improvements attached for me the way going gluten free for Celiac did??

That has been harder for me to deal with in a positive way.

After serious struggles this week with how I feel and function, I am now really feeling quite down emotionally. And I was feeling so “up” my last couple of posts. 😞

Hence, a few posts will be coming up about my identity as I try and sort this out for myself.

The Streak Becomes the Motivation

I like to compete with myself. I cannot always exceed my own self at whatever it is, but occasionally I have a string of successes where I “win,” and it lifts me up in spirit.

And with fatigue from low iron stores, I will grab a pick-me-up wherever I can get it.

In July of 2024, I taught my last online class at my university. After 3 years, they were discontinuing my classes as an online option. Unless I was going to move a province away to a big city and teach on campus, I was done. I was truly grateful for those 3 years. I loved being what I considered, not just an instructor of the creative writing curriculum that I wrote myself, but a cheerleader for those students, “Be seen, be heard, tell your story!” Because I worked for the Faculty of Continuing Education, I worked with aspiring creative writers during those 3 years from ages 18 all the way to 70! I really connected with almost every student, especially one in particular, who subsequently thanked me in the dedication to his self-published book!

I will admit, however, losing that job sent me into a serious funk. I had zero motivation to do anything, really. But somehow I still managed to walk to the mailbox everyday, log it on RunKeeper, (old habits die hard), and I didn’t break the streak that I did not even know I was in the process of creating. I only completed 30 kms walked that entire month, but it was just consistent enough to count.

Good lesson there, even a little is better than nothing.

Then early in August of 2024, I did an 8 kilometer hike with my sister, (yes, up a mountain, moderate difficulty), made even more difficult because for the entire month of July just prior I had walked so little. When I was checking out our elevation gain, time, etc., (because prior to that I had only been walking exclusively on flat pavement since about 2021), I noticed on RunKeeper I was almost at 10,000 all time kilometers walked since I started using the app in 2012. That lit a fire under my butt, and the push was on to hit that 10,000.

At the very end of August, 2024, I did two 10K walks, two days in a row, and hit that goal.

I also did two more 10K walks about a week later, (ensuring one was actually 12K), so that all four walks combined equaled a full marathon. I had done something similar four years earlier, completing my only two 20K walks ever, (ensuring one was actually 22K), so that both walks combined equaled a full marathon and match that it was the year 2020: two 20’s in 2020.

Anyhow, earlier this year that I noticed RunKeeper congratulated me on reaching a 130 week streak, (a little notification red dot had appeared on the bell icon that I hadn’t noticed before, and I clicked on it). I quickly did the math and realized that if I kept it up, 156 weeks would equal 3 years, and I would arrive at that milestone around the end of June, 2026.

Well, this morning it happened. I logged and completed a walk, and I hit 3 years of consistent weekly walking! (Including 14 hikes last summer with my sister, yes, I counted them, I love to count things, can you tell from this post?)

I also have already walked over 142 kms this month, (two more days to go), which beats last year June where I only walked 141 kms the whole month.

I also walked more kilometers in 2025 than I had ever before logged on RunKeeper in any prior calendar year.

Now what? I am only 65 kilometers from 13,000 all time total, so there is that to look forward to in the next few weeks.

Walking is the best (and least stressful) cardio activity I can do to help keep my heart strong while it deals with the extra burden it is dealing with. The moderate amount of daily walking I do does NOT actually add to that burden, because the heart is both an organ and a muscle. The primary tissue that makes up the bulk of the heart is cardiac muscle, which allows it to contract continuously. The worst thing I could do is let that muscle weaken over time by NOT gently “flexing” that muscle with healthy activities, (as discussed with my cardiologist).

Even when I am not motivated, tracking streaks keeps me going out the door. 😊 Not sure what will keep me going after 13,000, but I am sure I will find some new streak to count.

My Feelings Are Hungry Today

Well, this explains the extra fatigue and the extra shortness of breath I have been experiencing throughout the spring. Thank goodness those extra symptoms are less likely to be a worsening mitral valve regurgitation problem, and are instead being aggravated by my very low iron problem. (As well as my low red blood cell count, hematocrit, and sodium, all flagged low, but I only took a picture of my ferritin—iron stores—for this post). Because these days, it is so easy for me to jump to the conclusion that every chest twinge, stitch, flutter, and huff puff moment, is my heart. Ug!

Everyday, I was taking my iron supplement with my lunch, and usually waiting at least 2 hours before my next cup of black tea (many teas being full of iron absorption blocking tannins). This is because taking it in an empty stomach would upset my stomach. Add in that I have slow gastric emptying due to hEDS, that has probably been partly why taking a ferrous gluconate supplement has not been helping me according to my recent blood tests. What a waste of tablets!

My doctor has suggested simply taking it at night, (with a vitamin c source), but that I should also space it out away from when I take my progesterone, (which I am on as part of HRT to slow my bone loss), so I am giving it the best chance that nothing interferes with it.

I think I am becoming quite high maintenance to myself, lol.

I know it’s not my doctor’s job to be alarmed or concerned by my flagged low numbers. Her job is to work the problem and suggest changes I can make that may help. But ever since talking to her…I have been craving something. Some unmet need now feels hungry, and I finally figured out what it is. I feel unwell and vulnerable, and I guess I hoped she would step in with a guaranteed solution for me, like an iron infusion (but obviously, I am not unwell enough to need an infusion, despite feeling listless and lethargic at times). Instead, it’s all up to me, myself, and I. No one is coming to rescue me except me. That is perfectly reasonable, but still left me hungry for someone to take care of me, because on a certain level I feel too fragile to take care of myself. But I am not that fragile. I am still doing really well, (despite crappy iron levels).

I am still quite healthy overall despite any and all of my health diagnoses. I have to remind myself of that more often.

I think I also felt that way when I saw my cardiologist at the end of March and discussed the changes between my 2 echocardiograms. She was happy with the numbers, even though they were technically worse than they had been, so I was confused. No alarm? No upset? No alarm, because I now realize that when a cardiologist or medical professional looks at my numbers, they see a heart with severe MR that is compensating exactly how it is supposed to. Therefore, I was sent home with…nothing to do except continue doing what I am doing. I really see now why I was left feeling…like no one is doing anything for me, I felt so alone! I see clearly now that it’s my heart that is doing all the work here, (not the doctors). And it’s entirely up to me to just continue to support my heart. I feel a lot better today realizing what has been going on in my mind about this situation, and the subliminal assumption I had that anyone other than me needs to be doing anything about it.

That stops now. No one is coming to save me but me, and that is okay. Even though I feel…vulnerable, at times, that is more about the past than the present. This is the present. I need to quit looking outside myself to have my needs met. That is where I went wrong with the doctor. I didn’t realize it prior to the phone call, but I was looking to her to fix it. But no one can fix it (improve, but not “fix”) because it just is. And just like with most things, it’s up to me to fix what I can, and live my best life with the things that cannot be fixed.

All this “high maintenance” will be worth it if I feel better and getting my iron back up will take some of the additional pressure off my heart. This was a disturbing realization, that anemia is even worse for someone with my issues, but I need to feel empowered to try and solve it because good chance this is actually something that is solvable! And I am the one to solve it, not the doctor. Fingers crossed.

“Your heart’s primary function is to deliver oxygen to tissues. With mitral valve regurgitation, your heart has to work harder because blood is leaking backward instead of moving forward into the body. When you are anemic, your blood’s capacity to carry oxygen is severely reduced. To compensate, your heart has to pump even faster and harder to deliver the same amount of oxygen to your organs. This puts extra, unnecessary stress on a damaged mitral valve and can accelerate the progression toward heart failure.”

My resting heart rate is up a bit in the last month from what is normal for me, and I want to see if I can get it back down. 😊

It Helped Me to be Happy First, Lose Weight Second

Picture on the left, (also included on the “My Story” page): Revelstoke Dam tour, June 2023. Picture on the right: Revelstoke Dam tour today, June 20, 2026.

This post is connected to my other post from one month ago today, that said, “You don’t have to lose weight to be happy, but it’s okay to be happy that you lost weight.”

I’ll go one step further: it truly helps if you are happy, so that you can lose weight.

Happy first, weight loss second.

I experienced this years ago, when I had a big weight loss in the year 2004. I had to first get happy so that I could lose weight, not lose weight so that I could get happy. It is really, really hard to hate yourself thin, because it’s such a negative place in which to be. Long term sustainable healthy lifestyle changes can rarely be achieved by hating yourself. I can speak from experience, loving yourself into a healthier body is way better.

When my husband took that picture of me in June of 2023, I was happy. It was a beautiful sunny day, we had only lived nearby for 1 year, so we were still having fun playing tourist in our own new area, and I was genuinely loving life and happy to be spending the day with my husband.

I look in a full-length mirror everyday, so it’s not like I was shocked at the size of my thighs when I saw that picture. (I’ve heard about people who stopped looking in mirrors and then get shocked when they see a picture of themselves, that is not me).

But…

Because we decided to ride our motorcycle to Revelstoke for the dam tour, it’s about 40 minutes from where we live, I only had a few choices for pants that day that would fit me. Even though I was relatively happy and content, I still wished all the clothes in my closet fit me, (at that time they did not). And I had (finally) started to love myself at any size, but that day I still wished that I was more physically comfortable on the back of our motorcycle.

It was only a few weeks after that tour in 2023 when I really started to again pay attention to regular intentional exercise. In fact, I am only one more week away from the hitting my 3-year streak on the RunKeeper app, which started just after that picture was taken. And that summer, I started again consistently using the LoseIt app to keep track of what I eat. I truly find I have to keep track, even after 3 consistent years, or it’s just too easy to see my weight start to creep up.

I love myself in both these photos. But I feel better in the second photo. My clothes fit, and I am very comfortable on the motorcycle seat, and getting on and off the bike. Yes, looking good is nice, but feeling good is even better. So, you don’t have to lose weight to be happy, but it’s okay to be happy that you lost weight, especially if you feel better doing the things you love to do.

Messed Up Thoughts Around Food

A while ago on this blog post, I mentioned a comedy sketch done by Rosanne Barr I recalled from years ago. I am now viewing what she said through a new lens. Many 80’s moms were influenced (in part) by the diet culture in the greater North American society around them. And they were influenced by their own mothers. The result was many of them passed onto their daughters (and sons too) dysfunctional scripts around food. Yes, I have identified I have some messed up thoughts around food, which started with my mom giving me different foods (low calorie alternatives) than what she gave to my brother. But I am done blaming her for the messages I created around that, that I was somehow less than, not good enough, or not worthy, or that I had to change myself (get thinner) to be worthy of love and approval.

That was the story I just told myself.

But that is not the real story.

The real story is different, especially when I step back and look at with the benefit of different points of view. The stories I assumed about others were far different than I thought. Having some deep conversations with women this past weekend has taught me a lot.

Back to Roseanne Barr (I am paraphrasing from memory): “When you’re sad, 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.”

I met a gal over this past weekend who went on binges with her mother just like Rosanne was suggesting. Her mom specifically took her through drive-thrus or the store to buy her a bunch of treats. But then her mother would turn around and pay for her to go to Weight Watchers, saying “Your dad says you’re getting fat.” Upon hearing her story, I was heart broken on her behalf. Her mother contributed to both sides of the equation. First, by providing and encouraging her to eat excess foods. And then second, by communicating to her she was not good enough just the way she was, basically confirming her dad’s opinion that she was “fat,” by then paying for her to go to Weight Watchers.

I have decided right now to stop complaining about my mother, and what she did (or did not do) for me in terms of my food consumption.

And it’s about time.

It’s not like I ever thought I had it so terrible, or worse than anyone else. This blog is my story, my point of view, and I really only ever compared myself to myself. So for me, I wish for my younger self that I had felt that I was on equal footing with my brother, as to whether or not I was lovable in my current form. I wish my younger self had not thought that the different foods or different presents (chocolate for him, non-edible stuffed bunny toy for me) meant I had to change something about my body to be worthy of love. Because that is just the story I told myself at the time.

And now it’s finally time to change the story.

And because I usually go inward, comparing myself to myself, only knowing my own experience with my own mother, I had not thought about the other possible stories around food that other girls experienced with their mothers. And I had not thought about their fathers either. I knew they had a story, but it was easy to assume their story was similar to my story. Thanks to some shared vulnerability over the weekend in a large group of women, I know that all our stories are wildly different, even if the very same struggle was the same. We all grew up thinking we had to be constantly aware of our diet.

My dad never, to my knowledge, ever said anything about my weight. My experience was he was a neutral party, completing unaware of whether or not I was eating anything different than my brother. I don’t think he was monitoring my plate and what I ate at all. And I until I heard this gal’s heartbreaking story this weekend, I had not imagined walking a mile in someone else’s shoes where the message coming from both her parents, (and a mixed messages at that with her mother providing and encouraging overconsumption), was that she needed to change her weight to be worthy and/or lovable. Brutal.

I truly believe my mom only gave me diet foods and different gifts because of a simple truth: excess calories that we don’t otherwise burn off through our daily activity, will put excess weight on our bodies. I believe my mom was body shamed when she was young. First, she was body shamed for being too skinny, which in her experience in the 1950’s implied something shameful and negative, namely poverty. Second, she was body shamed for an unplanned pregnancy, and told to not come back (from her exile) having gained any weight whatsoever, “You better not come back ever looking like you may have had a baby, because we are going to keep that a secret for the rest of your life!” And then third, after marriage and two planned pregnancies, diet culture shamed her for not losing all the baby weight, and/or for “letting herself go” and becoming a frumpy housewife. Thus, she joined her first Weight Watchers meeting, and started a cycle of yo-yo dieting, eventually achieving a lifetime membership, but never achieving peace around food or her body.

I believe when my mom tried to limit my calories, she was simply trying to spare me her own heart aches around her own body that she herself experienced. She had no idea how I was internalizing the message. And I don’t think she realized (nor did I) that I was in part being driven by undiagnosed Celiac disease, which drove a certain amount of the desire to overeat because of nutrient malabsorption. I was overfed and undernourished, (and years later I have the resulting poor bone density to prove it). All she could see was my desire to overfeed, which led her to try some gentle restricting. She was never cruel, and instead provided all the low calorie substitutes I could want. But I snuck the foods that I was not otherwise “allowed” to eat, and got pretty messed up in my thinking around food. I was not naturally slender (like my brother), so with the extra foods I snuck, I gained weight. And yes, my mom paid for me to go to Weight Watchers when I was 15 years old. She was trying to help me learn how to shed the little bit of excess weight I could never seem to shake.

I have had a good amount of messed up thinking about food that I have written about on this blog. But I have to face the truth. At this stage of my life, none of my overeating to soothe emotions is my mom’s fault, or society’s fault, or even my fault, for that matter.

Because it’s not about fault.

It’s about choice.

I have simply chosen to eat foods, at times, for the wrong reasons, and it has led to weight gain, and subsequent dieting to loss excess weight, a constant yo-yo that has to stop. And I may still occasionally choose the wrong foods moving forward. I am not perfect, or perfectly intentioned, with every single morsel I put in my mouth. But I have decided right now to stop complaining about my mother, and what she did (or did not do) for me in terms of my food consumption.

And it’s about time.

Another gal, a childhood friend I’ve known my whole life, who was naturally slender and so was her mom, shared her experience also. I never knew her mom projected onto her a whole bunch of different messed up thoughts around foods. Sure, she never outwardly had a “weight problem,” but that was because she was constantly monitored and denied her own share of treats. She was expected to be the “perfect” daughter, and perfect daughters never gain weight in the first place. She said she was the only girl in her dorm at university who was sent there with a bathroom scale, so that she could closely monitor herself to ensure she did NOT gain the “Freshman 15.” She said word got around she had a scale, and random girls (no doubt with their own forms of disordered eating) would come and knock on her door and ask if they could come in and weigh themselves.

When I heard that, my heart broke for her too. Broke for anybody who ever thought they were not good enough the way they were, or that they were only good enough just as long as they never changed. An impossible standard on both fronts.

I have decided right now to stop complaining about my mother, and what she did (or did not do) for me in terms of my food consumption.

And it’s about time.

My First Follow-up DexaScan for Comparison

I am less than 3 weeks away from a 3-year (156 week) streak on RunKeeper. In the 14 years I have been tracking physical activities on that app, this will be the first time I have ever achieved a streak of consistency of this magnitude.

Therefore this blog post is NOT meant to be me complaining or wallowing in negativity. I am definitely feeling somewhat positive. I am simply processing my new DexaScan information by writing about it, that’s all.

I set the bar really high last year, go me! So, it was to be expected that us mere mortals cannot stay at the pinnacle of our health indefinitely. The fact that last year (at 54 years old) I had such a good scan, was truly a testament to my efforts in the 2 years (2 years of my now 3-year streak) prior to last year’s scan. And this year’s scan does not negate that.

Luckily, I had managed my expectations ahead of time, so I did NOT think this 1-year follow-up scan was going to show improvement. Despite my overall effort, I knew due to health conditions beyond my control, that maybe my previous A grade was headed for a B minus, (a B minus, like my French grade years ago that I mentioned here. I was still really proud of that B minus in French, because I knew the effort it took me to get it).

Well, on the Dexa I went down from an A down to a B+, so I am still really proud, because I know the effort it took me in the last year to still get that grade.

Funny story, (and I do think this is funny), the DexaScan provides a “biological age” that is based on your results. Last year I was “biologically” less than my actual age. This year I am still showing as less than my actual age, BUT the scan says I have aged 5 years in the last 1 year, omg! Part of me thinks that is a bit hilarious, because yeah, reading back through some of my blog posts, with all the different diagnoses I received, seemingly one after another after another, it does feels like I aged 5 years in the last 1, lol. Although this “biological age” is not (in my opinion) medically diagnostic is any way, shape, or form, I feel a bit validated. Because maybe not compared to other people, I am just comparing myself to myself, I have been going through a lot this last year. 5 years in 1 indeed.

In general, I know that my effort in the last year was “relatively” consistent as a healthy lifestyle enthusiast, (just like my mitral valve is in a relatively stable plateau phase, the operative word being “relatively”), and I did my best. My best effort each day overall, given the ups and downs of life circumstances each day, was still my best effort. Was I perfect every day in the last year? No. But did I do even better this last year, than in the year preceding my first Dexa? Absolutely, yes!

Kilometers walked:

1 year prior to 1st Dexa = June 14, 2024 to June 13, 2025 = 1176.01 kms.

1 year between 1st and 2nd Dexa = June 14, 2025 to June 10, 2026 = 1463.11 kms.

I must admit, however, the degree at which I lost ground feels like this optimistic and “relatively” stable plateau, with my body adapting to the chronic volume overload from the mitral valve regurgitation, cannot be all that “stable” after all. Which it may not be, but only 2 echos 6.5 months apart is just not enough data to support a definitive conclusion, especially considering I may have had the symptom of shortness of breath for maybe as long as 7 years. But there is not much I can do about it either way, except wait for my next echo in November. Sigh.

Anyhow, without bothering with all the minutia of all my actual Dexa numbers and how they have changed with this first ever opportunity to compare one set of numbers to another, here’s what ChatGTP had to say about it.

“Moderate to severe mitral valve regurgitation can accelerate muscle loss over a 1-year period, even if your nutrition and exercise remain constant. The condition places the heart into a state of chronic volume overload, which can trigger systemic inflammation and metabolic changes that can accelerate systemic bone mineral density (BMD) loss (osteopenia/osteoporosis) and appendicular lean mass depletion (sarcopenia).

Even when nutrition and exercise routines remain perfectly unchanged, the progressive mechanical inefficiency of a leaking mitral valve triggers profound neurohormonal, inflammatory, and hemodynamic shifts. These changes overpower lifestyle counter-measures, driving rapid tissue degradation that will manifest directly on a follow-up DEXA scan.”

(I am usually the type of person who wants to know everything on a subject, but lordy, maybe this was too much…Feel free to skip these next medical particulars, they are just for my records, my post ends here).

1. Accelerated Bone Mineral Density Loss (Osteoporosis)

DEXA scans measure bone calcium and mineral density. Moderate-to-severe MR triggers a systemic environment that aggressively strips minerals from the skeletal architecture via several mechanisms:

Secondary Hyperparathyroidism: MR-induced forward heart failure decreases renal perfusion. This prompts the kidneys to alter vitamin D and calcium handling, elevating Parathyroid Hormone (PTH). High PTH activates osteoclasts, which rapidly resorb (dissolve) bone to maintain blood calcium levels.
Hyperactivation of the RAAS Axis: The body responds to diminished cardiac output by chronically over-activating the Renin-Angiotensin-Aldosterone System (RAAS). Chronic excess of Angiotensin II directly stimulates the RANKL pathway, a primary molecular driver of osteoclast activity and bone destruction.
Chronic Low-Grade Inflammation: Severe valvular leaks cause chronic venous congestion in the liver and gut, resulting in micro-inflammation and the release of inflammatory cytokines (like TNF-alpha and IL-6). These cytokines simultaneously inhibit bone-building osteoblasts and accelerate bone-destroying osteoclasts.

2. Appendicular Lean Mass Wasting (Sarcopenia & Cachexia)

Advanced DEXA scans also evaluate total body composition, specifically segmenting lean muscle mass. Moderate to severe MR can accelerate a shift down the wasting continuum:

Skeletal Muscle Myopathy: Because a substantial volume of blood backflows into the left atrium with every heartbeat, the forward oxygenated blood flow to skeletal muscles drops. Even if you maintain weight-bearing exercises, this chronic tissue hypoxia restricts protein synthesis and causes mitochondrial dysfunction in the muscles, resulting in a measurable loss of lean tissue.
Transition toward Early Cardiac Cachexia: Chronic volume overload from severe MR alters your metabolic setpoint, shifting the body from an anabolic (building) state to a hyper-catabolic (breaking down) state. Elevated sympathetic nervous system drive (fight-or-flight response) dramatically increases resting energy expenditure, burning through lean muscle tissue regardless of consistent caloric intake.

I Prefer the Term “Healthy Lifestyle Enthusiast”

I am going to stop calling myself a life-long dieter, instead I prefer to think of myself as a Healthy Lifestyle Enthusiast.

Yes, I started dieting very early, learning to count calories from a little book and being given diet foods like SugarTwin, which was different than what my brother was allowed to eat. And I continued to weight cycle up and down, always “going on a diet” for the next 40+ years, yikes! That’s where I was getting the term “life-long.”

When I found out I was Celiac at age 40, that helped me adopt certain food choices that directly affected my health, with the realization that these were permanent changes I was making. And then again at age 48, I saw a huge health improvement going grain free, because there was strong evidence I had become cross-reactive to grains like rice. But I was not going on a gluten-free diet, or a grain-free diet, at the end of which I would go back to “normal.” Instead, I was making permanent and sustainable dietary changes, by finding foods I loved that did not contain gluten, and then those that did not contain grains either, and eating those and only those foods instead, for the rest of my life.

So, I had to become a healthy lifestyle enthusiast to accomplish all of this, and it is the same with a permanent reduced weight into a healthy range.

Moving forward, it’s not “diet obsession” driving me. It’s not body dysmorphia or living and dying by the numbers on the scale. I know that constant weight monitoring can look just like those conditions. But for me, it’s 100% about the daily effort I put into making healthy choices around food that I want to focus on. Just like with gluten free, and then grain free, it’s eating minimally processed and weight maintaining foods only, instead of letting negative emotions rule my choices. No “pass the bag of gluten free potato chips” for me. Maybe I shouldn’t self-judge, but I do evaluate my efforts, and feel better about myself overall when my choices are ruled by a desire to be as healthy as possible. My day does not land the same when it ends with an unplanned overindulgence prompted by wanting to soothe negative emotions.

Maybe it’s not a good thing, to self-judge at all, but I realize I do self-judge my worth each day, (because I conflated weight loss with being worthy of love), based on my food choices. I ask myself, did my choices today reflect how I valve my health? Or did I let negativity suck me down into the “what the hell” effect? I will be honest and just admit it. I have attached my self-worth to that effort I put into achieving healthy results. It’s the success I feel in completing a day of healthy choices, and not about the resulting number on the scale, whatever that may be.

Of course, self-judgement can be detrimental, but some self-judgement is just asking if I am making choices that support my identity as a Healthy Lifestyle Enthusiast, versus when I skip exercise and sit around on the couch all day, or eat something I did not plan. It’s normal for me to judge my behavior and say, “Hey, wait a minute, you are not acting in a way that aligns with your identity. You can do better than that.”

That’s also how I feel about my upcoming DexaScan numbers tomorrow. It is not about the actual numbers, just like it is not about the actual numbers on the scale. The metric is my effort, like what I wrote about here. And my overall effort in the last year has been very good, despite medical, and yes, sometimes emotional struggles too. Struggles are natural, as I have been working through a lot of identity shifting health diagnoses. Yes, it is an identity shift to find out things about yourself that you were completely clueless about. Some days I still don’t feel like I can be a person with heart valve disease, or osteoporosis, or hEDS, but it is my new reality.

In theory, your identity is your choice, but sometimes fate intervenes and changes some of your choice in the matter, especially when it comes to your health. Just like with embracing my identity as someone with Celiac, I am also a healthy lifestyle enthusiast.

Upcoming Reunion and Communication Struggles

I really like how this explains some of my experiences when I communicate with family and friends in a way that has often felt, entirely from my point of view, unbalanced or unreciprocated. I have walked away from these encounters chastising myself for being so needy, for always seeking validation, and for expecting so much from others in a simple exchange of conversation. The result is I end up feeling awkward and rejected and stupid for wanting something that I have not been able to communicate and then receive.

I am writing about this to give myself permission to not be so hard on myself. And to not be hard on others either. Some people cannot do deep, not because they don’t care, but because depth overwhelms them.

I suppose that is why I have turned to this blog in the last year to talk to the internet, but really, to talk to myself. To go deep with myself where I need to go deep. To validate myself.

I used to just stuff down all these feelings and unmet needs with food. It remains to be a struggle to not go back to that old maladaptive coping skill.

I have really appreciated this blog space to explore topics on a deep level where I meet myself, rather than expecting others to somehow read my mind and know what I am searching for, so they can meet me where I want them to meet me.

I don’t know whether this type of processing (which I have done my whole life) constitutes being on the Autism spectrum. But I have certainly struggled to maintain relationships, struggled with almost every conversation I have, and wondered if I could simply blame ASD, (which is higher in the hEDS population than in the regular population). This struggle for me is very internal, and in the last few years without using food to stuff down my bad feelings, I find myself just wanting to have less and less conversations.

Next weekend I am attending my second annual kindergarten class reunion. Yes, kindergarten. Well, almost all of us were in the same kindergarten class, so that’s what I call it. Our hometown had an upper land area called “the bench” that was subdivided into residential houses only, (no commercial businesses), with one elementary school up there that was kindergarten through grade 7, all in one school. We all lived on the bench within 3 blocks of one another, and we all went to that school. Almost all of us (except one whose family emigrated to Australia) ended up going through high school together also, and graduated together. It was pretty special to graduate with almost the exact same gals who you went to kindergarten with. Our reunion was basically only 1 day last year (with a few out of town guests staying a few extra nights), and this year it’s going to be 3 days. Even though I am local to where we are having the reunion, I am staying over for a night also, as to not miss out on the sleepover aspect. Wow, I am 55-years old and I get to go to a sleepover with these gals, just like when we were kids! I can’t wait!

But I am also dreading it.

Because it means I am going to have to talk to people, for a whole weekend.

I have already imagined a few scenarios where I fake an illness and cancel last minute. But I don’t really want to cancel. Truthfully, one of the only reasons why I won’t cancel is to ensure I get to be in all the pictures, and get copies shared to me of all the photos. Omg, you know me and how I love to take a perfect picture (that I wrote about here).

So, I will go, but I know that I just have to try and relax and lesson my expectations. And forgive myself for how I may struggle with how I communicate. And then try not to agonize too much about it for weeks afterwards. (This list is me, except for 4. Instead of going quiet, I talk too much and overshare, and then I really spend a lot of time with number 7).