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 chose 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.
Wow, I didn’t even notice, June was a perfect month. At the end of the month of June, not only was I hitting a solid 3 year streak of tracking a 15 minute activity every single week, I also tracked an activity every single day that month.
So, I just scrolled back through my log on RunKeeper. Even though I had (still have) a perfect streak of tracking something at least once per week for the last 3 years, rarely have I tracked an activity every single day for an entire month. Without a deliberate intention to track something every single day, there was usually a few days each month, here and there, where tracking an activity just wasn’t going to happen. A good example is a day I was getting on a plane to go traveling, getting up early, maybe even with a stopover to change planes, and arriving late. Then getting there, greeting family, unpacking, etc. That is a perfect example of a day where I just wouldn’t bother to also add “track a 15 minute activity” to my to-do list.
During the month of July, I have been casting about for something new to motivate me. I have done a lot of counting how many kilometers I walked in the last 3 years since this accident. But this month I have struggled to keep up the pace, so to speak. I said in this post, we cannot stay at the pinnacle of our health indefinitely. In fact, thinking that we can seems to be a narrative that I see in the social groups around me. Someone completes a 5K race, and they are immediately asked, “Now what? A 10K?” And then after the 10K comes the half marathon, the full marathon, ultra marathon…it can go on and on. But it has to end somewhere, doesn’t it? When is it good enough? When are we done?
The pressure we can put on ourselves to beat our own selves…
Of course, when it comes to staying healthy, we are never done. Working on our health is a daily practice, which we must continue to do, if we are enthusiastic about that kind of lifestyle. However, sometimes we realistically need to adjust. We cannot always be striving to do more and more. But how do we adjust activity, if the need arises, without feeling that doing less somehow makes us less?
I’ve been trying to figure that out. I have been doing less, and unfortunately, I have been allowing myself to feel less.
But then I saw that absolutely perfect month of just 15 minutes a day, for a whole month, and well, I cannot resist making that a goal for August. I am excited, I now have some deliberate intentional motivation to carry me forward. And it’s only 15 minutes of activity to count for the purposes of RunKeeper’s log. 😊
I am still experiencing the “good walk/bad walk” issue I wrote about here. In this picture above, the “bad” walk (yesterday) was actually slightly shorter than the “good” walk today. Is was basically the exact same route both days, but today I added in going to the mailbox too. Today was actually slightly more of a walk than yesterday, both of them only being around 2K, on flat ground, between 9:00 and 10:00am, and not even hot outside. Very easy walks. And yet, my experience of both of those walks was entirely different.
But I have come to realize this unpredictability is just my new normal. And I can’t let this unpredictability stop me from getting out there and going for these nice easy walks, to do my best to maintain my cardiovascular health. Sure, with the discomfort I feel during a “bad” walk, I am not really enjoying myself in the same way I used to. But I have to stop comparing myself to myself, (the person I was last summer, for example, where every single walk was a “good” walk, how spoiled was I??), and just move on with my new normal.
I need to be thankful for how good things still are. And really, for the most part, things are still quite good. 😊
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.
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 regurgitationis 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.
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. 😊
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.
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.
The Bio Joy Diet 