15 minutes! Just like what I posted about 2 days ago here! What perfect timing that I just read this in a blog post, even though it is from someone’s blog from May 30, 2018.
A fellow blogger, and fellow healthy lifestyle enthusiast that I know, has been doing some re-uploading of old posts, (to preserve their original date posted, as she updates her blog), and I am absolutely loving reading these old posts! She had (still has) such excellent observations about what it is to struggle, but also to ultimately choose healthy food and activities (never give up!) because we owe it to ourselves to live our best lives, and that starts with our health. I was having trouble posting a comment to her, as these posts are re-uploads, so I thought I would mention here a few of her posts that struck me, (and they are all really great, truly).
More than one post was an excellent testimonial to daughters, to step daughters, to all women really, to not let people decide for us what we think about our bodies. In particular, one post reminded us that advertisers simply make a lot money if they sell us dissatisfaction with how we look, (don’t let them!). Another post called out any fitness influencer who would try to shame us for NOT competing with all other women, effectively pitting us against each other, instead of encouraging solidarity and celebration of one another.
And the most heart touching (and partly gut wrenching) story was about the soul of a young girl, a soul that truly saw that she needed “to sparkle,” and bought her a necklace for her birthday. The girl just knew when she saw it, that she had to get it for her, and lo and behold it had been the exact necklace that had caught her eye in the mall weeks earlier. If that does not make a person believe, nothing will.
Anyhow, our words here in this blogging space matter more than we know. We do not know who we will touch when we write what we write. The fact that I wrote just 2 days ago, that for the month of August I am only going to do 15 minutes a day if that’s all I can do, (which is a fairly big step down for me, and I basically feel forced to set the bar so low because of my recent health, and I had been feeling like a bit of a failure about it even though it’s not really my fault), but then I see her post today (re-posted from 2018) about a 15 minute walk and talk? What are the odds that would even happen?? The blog was entitled “The Value of Simplicity,” which has replaced any bad feelings I have about only doing 15 minutes. Maybe I will do more, but 15 minutes still counts.
One good walk, one bad walk, both the same route, same distance, same pace.
But on one of these walks, I was short of breath. And I generally felt tired and out of shape. And I never know which walk I am going to experience, good or bad, when I walk out the door.
Unfortunately, experiencing this uncertainty gets me thinking instead about staying home on the couch, because why risk having the bad walk when I cannot predict which one I will have?
As if motivating myself to exercise for my health is not already difficult at times, the last thing I need is this unpredictability. I need to be actively managing my diseases to control symptoms, including keeping my heart muscle healthy. Deconditioning my muscles by doing less and less activity, or allowing some excess fluid to accumulate by being sedentary, will NOT make anything better.
But when I feel short of breath on a walk, I don’t feel…safe.
There is a difference between being alive, enjoying my life, and feeling safe.
I am alive.
My heart is beating.
My body is still here.
The last echo says my heart is compensating well.
There is no treatment scheduled. Just monitoring.
Life has continued moving forward, so I can enjoy it.
But safety is something else entirely.
Safety is not wondering whether every new pain means my heart is not compensating as well as before. Safety is not studying my body for changes. Safety is not having to have tests that may show changes, but learning that those changes…don’t mean anything yet. Safety is not having to wait for the results of the test that will finally mean something. It is trusting that tomorrow is mine without feeling the need to bargain with it.
Before progressive heart valve disease, I never understood how deeply I believed I was safe.
I knew terrible things happened. I knew people became sick. I knew lives could change without warning. But there was still a quiet distance between those possibilities and me.
Progressive heart valve disease has destroyed that distance.
It taught me that a life can change after the results of a single test. It taught me that my body can be holding something dangerous while I am simply vacuuming, folding laundry, cooking dinner, and thinking about plans for next spring.
It taught me that feeling okay does not always mean everything is fine.
So yes, I am alive. And I am deeply grateful to be alive, and I am getting out and enjoying life. But I am not in that positive space all day every day. Especially if I have a bad walk.
But my daily gratitude does not erase the part of me that, at different times, is waiting for the next set of test results. It does not silence the fear that rises when something hurts or when my body feels unfamiliar. It does not rebuild the innocence I had…before I learned how quickly everything could change.
There is grief in that too. Grief for the version of me who once moved through life without constantly thinking I could lose life sooner.
People sometimes see survival as the moment the danger ends.
Survival for me is learning how to keep living with that sense of danger that lingers, and after my sense of safety has been taken.
Survival is slowly teaching my nervous system that every ache is not an emergency. It is getting tests without searching for the all the possible hidden warnings inside them. It is still making plans while knowing how fragile plans can be.
Maybe one day those two things will feel closer together.
Maybe one day being alive will not feel like something I have to continuously prove, protect, or prepare to lose.
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. ♥️
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.
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.
Most of us gals that got together for the reunion that I wrote about here, are on Facebook. But the reunion was just for us, so none of us really felt the need to post on Bragbook, oops, I mean Facebook, about the events of the reunion, by sharing some of the hundreds of pictures we took. The weekend was just for us.
For me, in addition to making those connections again, (which was so amazing, I cannot believe I ever worried about it), I wanted to get those ever important “great pictures,” which I did. 😊
Because this blog is in a fairly quiet little corner of the internet, I think I will share those wonderful pictures here.
And tell a funny story about my husband.
The morning of the reunion, my husband dropped me off with my back pack of clothes for the weekend, and with another back pack with pajamas and snacks for the sleepover. He wished me a fabulous weekend, and headed home with our dog and cat for his own weekend of fun and sun on the lake, (because the weather was beautiful!)
But before he left he said, “Now, make sure you don’t let them talk you into doing anything you are not comfortable doing.” Bahaha, what did he think I was, a teenager who may succumb to peer pressure? I think he has watched too many chick flicks. I never should have let him watch Bridesmaids with me, lol.
It was because of that comment, that after our very quiet lunch out at a winery on the Saturday afternoon of the weekend, I had one of my friends take a picture of me in front of this party bus. I texted my husband this picture with the caption, “Well…we did a thing…”
The truth was, after lunch half of us—the out-of-towners—went to the big shopping mall, and the rest of us went back to the townhouse, where we all took a nap, true story! At first I was going to just scroll my phone on the couch while the others laid down for a bit in some of the bedrooms, but then I actually fell asleep on the couch! You see, we had the sleepover the night before, and what did we do? We stayed up very late watching Netflix, so I was more tired than I realized!
Anyhow, it was the best weekend ever, I am so glad I was there for all 3 days.
So, here are the pictures of me, and then the group, first these are the ones from last year, June 2025:
And here are the pictures from this year, June 2026:
And 50 years ago (50 years!) this was our kindergarten picture, which included almost all of us:
Even if not everyone was in this kindergarten picture, 5 of us were. Wow. And the reunion included two others who had joined the group when we were in grade 1 and 5 respectively. Add in another of us from across the street that was just one year behind the rest, and even throw in a little sister, and a cousin that came and played on our street every summer, to round out our 2026 group beautifully. 😊
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. 😊
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.
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.
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).
I came across this the other day, and it made me laugh. And, of course, then I wanted to do a deep dive into what it means to me to “look good.”
First of all, for me, defining any phrase is entirely individual, subjective, and can come with multiple meanings. It is far too easy these days to jump to a conclusion when someone says anything, really, unless we constantly keep ourselves in check by remembering we only know our own meaning, not someone else’s meaning. (Unless we ask them, and then they tell us their particular, individual, and specific meaning).
So, I’ll tell you my meaning.
Right now, I still care to “look good” in photos. And I have posed for wonderful photos at all my weights, up and down the scale, (that I wrote about here, never requiring before hand that I weighed a “perfect weight,” or I would have missed out on getting the photo taken). I think a person can “look good” in a photo at any size. But looking good in a scan or x-ray, for me, is the desire to get the all clear that things “look good” medically.
In the last 12 months, I pretty much have had more experience with this than I had had in my entire life prior.
June 2025 = DexaScan. Interestingly, my mom had a different aesthetic in mind when she commented my bone scan skeleton picture was “not very flattering.” Omg, I can’t even make this up, yes, she said that. On one hand, sure, she was “sort of” joking. On the other hand, she really was sizing up the spread of my hips in the picture.
I am assuming my hips were what she was looking at, because that was the body part that shows as somewhat skewed in the picture. This DexaScan skeleton picture is broken up into sections. which skews how it looks compared to my other DexaScan picture taken at the same time. But my hips were what my mom always pointed out to me as a kid. If I had just been “slim-hipped,” like her growing up, instead of having “saddlebags like my grandmother,” then maybe I wouldn’t have been given sugar twin and diet yogurt and denied chocolate at Easter. Yes, once puberty hit, my older brother’s gift was still chocolate, in fact, 50 Cadbury Easter Cream eggs. But my gift was a Gund stuffed bunny, no chocolate allowed for me. I still loved the stuffed bunny, by the way, but being treated differently than my brother based on my body shape and weight took an emotional toll that I am finally allowing myself to grieve and process, (still a work in progress, because I can clearly see from the photo below—1984, I am 13 years old—that there was absolutely nothing “wrong” with me at that age, but I interpreted the messages I was receiving that there was something wrong with me, and back then had even added a “fun” sticker to the picture in my old album).
August 2025=Echocardiogram. The ultrasound technologist said, “Your heart is very photogenic,” (which struck me, as it reminded me of what my mom had said about my Dexa). So, I asked her, what makes it photogenic? She said something along the lines of not being barrel chested helped, and having gaps between my ribs, allowing the ultrasound probe to send and receive sound waves without bone obstruction, which eliminated dark shadows. And a thinner chest wall and less tissue between the skin and the heart meant better ultrasound penetration, resulting in sharper image resolution. Cool.
October 2025=Bone Density Scan. Anyhow, short story long, I do care about “looking good” medically. And I suppose with purple (cyanotic?) fingers on the Dexa, which led to the investigation and diagnosis of hEDS…And then the Echo, which led to a diagnosis of Mitral Valve Heart Disease…And then questionable bone density numbers on the Dexa, which led to a medically diagnostic bone density scan and a diagnosis of osteoporosis…I just feel that my overall spirit took a hit with so many “not looking good” results. And truthfully, my repeat echo at the end of February was the worst yet, because it meant my situation is progressive, not stable like I was hoping for prior to that first repeat scan for comparison. I don’t worry about it all day, every day, but I do worry my next echo in November won’t be “looking good” either.
Speaking of repeat scans, I have my first repeat Dexa June 10. Yes, I seem like a glutton for punishment, but this is my first chance to have an opportunity to compare to my last year’s scan, (the scan that started it all).
But I must not let NOT “looking good” in this next Dexa, (and I mean medically, not aesthetically, like what my mom looked at, lol), bring me down in any way. I worked hard this last year no matter what the scan says. Even if nothing is better, had I thrown in the towel, it would have been worse. Like my French grade that I wrote about here, even if I get a B minus instead of an A, I know in my heart that I have still given this health journey my best effort, and plan to continue.
The Bio Joy Diet 