Today, I got a “2 for 1” special. First, I went for my stress test, which overall went very well. A few “premature ventricular contractions” at the start of the test, and then more PVCs again at the end, when I bent over to re-tie my shoes, (because I told them bending over is when I feel…out of breath…sometimes, so I bent over for a minute with all the leads still hooked up).
But otherwise, all the walking I do…has paid off. I have “above average for my age” exercise tolerance. I know it’s silly, but it was nice to get a “good grade.” I have identified that I rely far too much on external validation like feeling as though I have just “passed” a test, even a medical test, but overall, I still feel good to have got it done today, and to have confirmation that my consistency with regular cardio exercise—simply walking—has paid off in keeping my heart healthy enough to handle the extra stress of this valve issue.
And instead of having to go back for the 24-hour Holter monitor on Thursday, they saved me the drive, and hooked me up right after my stress test. It was truly lucky, as at first all 7 units the hospital had at hand this morning were all booked for people today. But then someone brought one back from their appointment yesterday, and they were able to rebook it out to me before I left. Woo hoo!
I am so glad all these tests will be done by noon tomorrow! I am also able to drop my unit off at the health lab in town (15 minutes from my house—small town), instead of driving it another further 25 minutes to the next town—larger town, where the hospital is. Also, there is a free public skating tomorrow too, so I can go skating, then drop off the monitor. Perfect! 😊
I am a thief of memes. I love saving memes, and then redistributing memes, thereby incorporating memes in my blog posts.
In my last post, I used a meme that mentioned coffee, but it sort of bugged me (just a little, okay, maybe a lot, in my slightly neurodivergent way) that I am not actually a coffee drinker, I am a tea drinker in a coffee world.
So, this meme fits my identity much better. Although I don’t actually need help at the moment, (or maybe I do), the universe has been sending me help anyway, by way of many vloggers and bloggers who are doubling down their efforts for this last month of 2025. I am so inspired. Even if some of us are struggling, and feel all they can do is make it through the month and focus on a New Year’s reset, (and I honor those people too, because that means they have not given up), there are those who have managed to find the extra motivation to do things today, all this month, that will serve their future self on January 1, in a positive way.
Remaining committed to being in “the game,” (even if the game starts a few weeks from now instead of right now), well, that is always better than quitting. With that in mind, I went skating again yesterday, and I went for my daily walk today, my third day in a row trudging through the first snowfalls of this year.
Okay, how great is it that the first of December is a Monday? I feel inspired. Even though I have had the occasional thought, “Why are you excited about upcoming medical appointments, they don’t actually change anything about your condition…” my predominant thoughts have been that it will be wonderful to have a more comprehensive baseline through which future tests can be compared, that I wrote about here.
So, whatever your journey is, health, exercise, weight loss, weight maintenance, school, learning, home organizing, heck, a little of all of the above, my goal this month is to ignore negativity (my own self-negativity in my head) by replacing it instead with positive action.
So, in addition to going to some upcoming medical appointments, (1.stress test, 2.get heart holter monitor, 3.take holter monitor back), I am especially focused on the fact that without planning it, I am less than 90kms from 1500kms walked for the whole year. My consistency with my regular walking has resulted in the highest kilometers walked EVER in one year, at least ever since I started tracking on RunKeeper in 2012. (Previously, my best year was 1446 kms walked in 2016, my lowest year was 172.3 in 2018).
Wait. 172.3 kms in total in the year 2018?? Wow, I forgot all about that year. Talk about selective memory, (I obviously blocked out how bad it was). I remember now that in 2018 I had terrible joint pain, most likely due to out of control inflammation. As a Celiac, I was eating a lot of gluten-free grains, like quinoa, brown rice, “gluten-safe” oats. But then…I just got lucky. To the best of my recollection, it went something like this: In December of 2018, I went to the cupboard to get my quinoa or brown rice or oats, to cook up with my blueberries, but then I just stopped. I stood at the cupboard remembering how good I felt in 1999, when I tried the Atkins diet. So, I decided right there and then to go grain free. (Not low carb like Atkins, because I was still going to eat the blueberries, but no more grains).
33 days later, the pain in my joints was gone! I just woke up that morning, and it was gone. I looked back to when I stopped eating grains, and counted that it had been 33 days.
(In hindsight, I think my chronic joint pain and inflammation had been some version of “leaky gut” associated with my hEDS, but I just called it grain—grains of any kind—intolerance, because I did not know until just this year that I have hEDS).
I feel really lucky that I discovered a “cure” that worked specifically for me, (although constipation and upset stomach is still an issue), but no more joint pain!! For me, grain free is pain free.
Here’s to a great December, (and to listening to your instincts about your own body).
I think I have been complaining far too much lately, and not appreciating life enough. American thanksgiving posts are an excellent reminder to focus on gratitude. So I corrected some of my bad attitude by going skating Wednesday morning (our local arena provides free public skating, multiple times a week, how was I wasting these opportunities??) and finally started appreciating again how great our local arena is.
When my dad passed away in November of 2023, I posted here about how lucky I was to have skated with him on a frozen lake, 3 different times when the weather was cold enough without snow that the lake turned to glass. And I went skating many times that winter (at the free public skating at the arena) to remember my dad.
Then I did not go skating at all in 2024. Thought about it, then thought about my cold hands, and then just never did it, (even after I got heated gloves).
So happy I finally kicked my butt in gear, and got back on the ice, and remembered my dad.
Then, the good news is I actually just got a call that Wednesday afternoon right after skating, the cardiologist had a last minute opening for the next morning, so I went yesterday. Omg, seeing a specialist is next level! Everything is booked so fast, no messing around! What a relief. I did not realize how…abandoned I had felt by my family doctor, who had basically said, “It’s okay, it’s no big deal, it’s only moderate not severe yet.”
It’s not like I had a heart murmur for years, or like since I was a kid, and that having my heart checked was just “routine,” or something. I had NO idea anything was wrong with my heart at all until this summer, so to me, it was a big deal! (And I had skipped right over mild, and was already up to moderate, and borderline severe on one of the measurements).
The cardiologist said she does NOT want me to have to wait a whole year between echocardiograms to check again, so we can see if my condition is stable or progressing. So, my next echocardiogram is now scheduled for February 26, so by my birthday at the beginning of March, I should know if my condition is stable (fingers crossed).
And she wants other tests for a more comprehensive baseline of where I am at now, through which future tests can be compared, because my significant osteoporosis (at my age) is a real red flag, in her opinion, along with my other low levels, like iron, which could weaken my heart further.
It feels so great to feel…supervised. I did not realize how comforted I would feel to know, even though it does not actually change my condition or anything, just that someone is checking up on the situation. And my next echo appointment is already booked. 🙂
Ripley, Presley (in the pet stroller), and me. (Presley, being deaf since birth, has to be 100% an indoor cat for her safety. All her outside visits are strictly controlled and supervised).
Sometimes it feels as though true happiness is only fleeting, because it sort of is. Neuroscience has actually explored that certain events will lift us up, sometimes extremely high, (a graduation, a wedding, a vacation, your book hitting the New York Times Best Sellers List, an Olympic gold medal, whatever), but we all have a baseline we quite quickly go back down to.
In fact, in contrast to our recent burst of happiness, our baseline can now feel comparatively low.
Then we can understandably struggle with the fact that our burst of happiness felt so fleeting.
Understanding this mechanism helps me figure out why I do some of the things I do. When I am having a comparative “low” moment (which is most probably my baseline, it just doesn’t feel that way) following even a small high, (hey, I got a new couch, my first one in 18 years, I love it!), I struggle to make good decisions. It’s almost like I am angry that my happiness did not last very long. In fact, in those “low” moments, I don’t even trust that the happiness I felt was real…because it sure didn’t last long!
And then I want to medicate my lower emotions. Food, yes, some food will make me happy, won’t it?
But only fleetingly.
Then sometimes we truly feel lower than baseline for a valid reason.
I follow a blogger who has real health issues. Not that my own health issues are not real, but in terms of how the general public will scale things, my hEDS, mitral valve heart disease, and osteoporosis is most definitely trumped by cancer. He has CML, or chronic myeloid leukemia, which is “a type of cancer that affects the bone marrow, causing it to produce too many white blood cells. It is a slow-growing cancer, also known as chronic myelogenous leukemia, that can progress to a faster-growing acute leukemia if not treated.” And we can imagine cancer treatment for any type of cancer is beyond challenging on the human body. Maybe the treatment can be even worse than cancer, at times, at least until someone is on the other side of the treatment and is NED=no evidence of disease. But challenging health diagnoses aside, this blogger just lost his senior cat. And his post today had me just sobbing. In fact, a week ago, I could not even read his first post that announced the final goodbye to Clyde. When I saw the title of his post last week, I thought, oh god no, I just can’t. I wanted to “like” his post to support the blogger, but how do I communicate support without simply hitting the “like” button? Wordpress needs a “care” button, just like Facebook.
Anyhow, even though this blogger battles health issues that, in my opinion, exceed mine, (not that this is a competition), Clyde’s health conditions were even more challenging, in the end. I was just gutted by his story, but how loved was Clyde that his family never gave up on him.
And that reminds me not to give up on myself.
And I have to say this blogger, who self proclaims to not have been just the best English student in school, wrote this post today that spoke to the hardness of loss in a deeply meaningful way, but also written in such an eloquent way, that I could absorb the hardness while still seeing the incredible beauty of the unique life that was first lived.
(And although this is just my opinion of his words written, I know something of what I speak, you know, me having a Master of Fine Arts degree in Creative Writing, and all, just sayin’).
Thank you to all the storytellers out there (aka bloggers) who adrift in the sea of YouTube, Instagram, and TikTok reels and shorts, still feel called to put down words on the page. And deeply touch and inspire their fellow man.
Well, as if the Raynaud’s was not bad enough, this week I have been on a roller coaster ride with what Chat GTP calls Refractory Constipation.
“Refractory constipation is a severe form of constipation that does not improve with standard treatments like high-fiber diets, laxatives, and behavioral therapies. It is defined by the persistent and inadequate response to adequate therapy, which may be up to 4 weeks for each medication or 3 months for behavioral interventions. Management of refractory constipation may require a more intensive and specialized approach.”
Why your constipation is so refractory (hEDS-specific reasons):
People with hEDS often struggle with constipation not because of low fibre or hydration, but because of:
1. Dysmotility from connective-tissue laxity
• The bowel is physically more floppy and less propulsive.
• Transit time slows, so fibre can solidify rather than help—especially insoluble fibre.”
Well crap! (No pun intended).
Even though that all sounds really dramatic, to tell the truth, it truly sounds like a fit to what I am experiencing.
So, an hEDS related problem needs an hEDS tailored solution, which I am working on, (short answer includes regular but therapeutic-dose amounts of magnesium oxide). Although being really slow in that department is nothing new to me, it has been far worse this week.
And today is the second anniversary of my dad’s passing that I wrote about here. I should have gone skating. Instead, I spent most of the day having a lot more “what’s the flipping point?” thoughts. Add in gas build up when exercising, and it feels like my body is really turning on me! I used that as an excuse to avoid doing much in the moving my body department today.
Then we had a wonderful Sunday night roast beef dinner, and I ate a lot, without weighing my portions. My “who cares” thoughts fueled this. Then I ate a healthy dessert, (strawberries), but I really didn’t need any more food, because I was already starting to feel stuffed! Then the thoughts of, “If you are already going to feel like crap, might as well drink a big glass of that egg nog in the fridge that you have been resisting.” Good news, I managed to come here and blog instead of drinking the nog.
Hopefully I am not writhing in agony in bed later for over stuffing myself (thank goodness cooler heads prevailed before I drank that egg nog!) because I am still dealing with my “food is going in and who the heck knows when it will finally make its way out” problem. It will probably take weeks or longer to sort myself out with the new and evidence-based for hEDS advice I will be implementing. Sigh.
Sorry for all the bathroom talk. Now that I think about it, diet blogs do not usually mention the price some of us pay in the bathroom (hEDS or not) when we are NOT eating “perfectly” on our meal plan. But maybe they should. 🙂
My Raynaud’s attack yesterday afternoon, both hands at once, sigh, brought my mood down again. Many people feel the pain when the fingers go red and the blood rushes back into them. My personal experience is that it my fingers also feel very painful when my fingers go white like this:
Almost like I can feel the cold emanating from them. Numbness yes, but also a painful feeling of cold almost radiating from my hands, like I could cool the whole room down! Just like those scenes in “The Sixth Sense” when Cole knew a ghost was in the room…and he sat there breathing and we could see his breath.
“Primary Raynaud’s occurs by itself with no underlying disease, while secondary Raynaud’s is caused by another medical condition, such as an autoimmune disease, injury, or certain medications. Secondary Raynaud’s is less common but tends to be more serious.”—Google
“The next time you find yourself blaming or shaming someone, because they deserve it for how they wronged you, take a pause and a breath and ask yourself: What is it in me that needs attention here? Shift your energy. Take responsibility for your own life and embody the energy that you want to attract.”
Lately, I have been stuck in a rut of cycling into feeling sorry for myself for every time I have ever felt gaslit about my health, by doctors, and yes, even at times by my spouse. But truthfully? I was my own worst critic. I felt unheard and abandoned by myself. In fact, I experienced a lot of self-loathing, because feeling unwell usually resulted in bad food choices that made my feelings/symptoms worse. Those times my body was sending me a message saying hey, something does not feel right, I ended up feeling (rightly or not) that the narrative was: it’s all in your head, just stuff it down, and I regularly told myself exactly that. Instead of believing the signals coming from my body, instead I asked myself: what are you getting from “not feeling right?” What are you getting to avoid? Something feels “off” because you must WANT something to feel “off,” so then you won’t have to show up for your life in some way. Just stop it.
Ultimately, I was really hard on myself, and I have been grieving, in a way, that I treated myself like that.
I feel very bad for my former self that I put down and punished for “misbehaving.” I wouldn’t EVER treat anyone else that badly. Yet I blamed and shamed myself.
But now that I am no longer gaslighting myself, I need to ask: What is it in me that needs attention here?
I cannot change the past, but I can change my future. I need to quit dancing on the edge of that cliff. I need to take care of myself. I need to treat myself with kindness. I need to love myself (my body) just like I would my best friend.
I am not trying to plug this book. The last thing I need is a book-long lecture that has me READING about what I should be doing, instead of just going out today and DOING it.
But this is the core message:
“Instead of fearing mortality, this book challenges us to use it as fuel—to stop waiting, start living, and focus on what truly matters.”
Boy, I think I really needed to hear that today.
The biggest thing I have not been loving myself very much for over a month now. All I have been doing was bemoaning how my body has failed me in some way. The biggest kicker has been there is a huge difference between suspecting something is not quite right, and now knowing it.
I haven’t fallen completely off the ledge about the things I now know about my body and health and longevity, but I have been dancing on the edge. And it has to stop. Now.
Let’s hear it for a Monday start with a better attitude. My body is amazing, and will simply allow me to do the things I want to do today. That is always a win.
Boy, am I ever being tempted to go back over to the dark side lately. The biggest question steering me towards my darker thoughts is my old thinking that nothing really matters. That no matter how hard I try, in the end, ultimately nothing health-wise is up to me.
There is no such thing as the perfect meal plan, or the perfect foods that will prevent disease. Bad stuff will still happen despite good food choices. Nothing is guaranteed, no matter how much we want to believe that if we eat “healthy,” (whatever it is that we decide defines “healthy”), we will get/remain healthy.
So, why bother?
I know this is all a bunch of my old thinking, thoughts that will enable me to simply give in and give up, but these thoughts having been persisting all week regardless.
But a newer voice, maybe a voice of reason, says keep trying.
The Bio Joy Diet 