I need to remember, that when a person is struggling, how other people react to their struggle is entirely about them, not the person. When times are difficult, we really need to evaluate who are “our people,” and who are not, (while remembering, no revenge is needed, sigh).
I can do everything “right,” count every macro, take all the vitamins, and my body might still say: Nope!
I have spent a lot of my life (let’s be honest) fairly focused (obsessed) with dieting, because at a young age I grabbed and then held onto the idea that “going on a diet” and losing weight would solve a lot (if not all) of my problems.
I carried this belief well into adulthood, and maybe even a part of me still wants to believe it even now. I simply did not want to let go of the belief that it was true, because diet (all the things I eat in a day) was something I could control, seemingly, in a world of so many things out of our control.
Probably, periods of “giving in” or “losing control” over what I was eating, were JUST so I could go on another diet and feel like I was “taking back control.”
Sigh.
Therefore, I have also spent a lot of time playing mental games with myself when it comes to food and exercise, to unpack excuses from realistic reasons, find the root causes of poor decisions, determine and solve the drivers of motivation and procrastination, and create effective tools and structure for positive routines leading to desirable outcomes.
That all just sounds like a load of crap to me right now. If this was a Nike commercial, it would say: Cut out all the bullshit, and just. do. it. Do better!
But sometimes you are doing better…yet the outcome is still NOT what is expected. I am not perfect, but when I look at how I have been managing my diet, consistently, for the last 2.5 years now, I suspect there is more going on with my body these days than simple calories in and calories out.
It’s not just menopause, (and now I am on HRT). It’s not just two months of numbers displayed on my smart scale. It’s not my clothes. It’s not even my recent test results. It’s something else I can feel, and yes, I think I can see it. I think my body composition is changing, in an accelerated way, and not for the better.
Of course, yes, my smart scale is confirming this. So, which came first, the scale or the feeling? Honestly, the feeling came first, which is why I wanted the scale.
If you listen to medical testimonials on YouTube, you will hear a common theme. “The test results said everything was normal, but I just knew something was wrong.” In my opinion, people do have an instinct about what is going on with their body, even if they struggle to have the language or the ability to say exactly what it is. So they go to the doctor and describe the symptoms they can put words to, and hope the doctor will run the right test that confirms that IF something is wrong, what that something is.
Deep down, I know that I am not saying I think there is something wrong just because a smart scale says there is, or a recent follow up test says there are negative changes. I know it’s because I have been feeling less strong, less capable, like the things that I do take more effort than they used to.
I feel like I my muscles are actually…getting weaker.
I have a sneaking suspicion I am not absorbing as much as one would hope in terms of the protein I do eat…I am thinking of switching to high protein (ultra filtered) milk, (even though double the protein will mean double the price), and trying for even higher daily protein goals, to better swing the odds in my favor.
“Why hEDS-Related Delayed Emptying Causes Protein Malabsorption:
Impaired Digestion Time: When the stomach empties too slowly, food remains in the stomach too long, leading to partial digestion and preventing the necessary breakdown of proteins into amino acids for absorption in the small intestine.”
So, I am trying to increase daily protein, to consistently over 100 grams a day, but maybe I am not absorbing it. And because I have NO control over it, I have to stop twisting myself into to knots worrying about it. It is what it is.
That does not mean I want to stop trying, but I have to stop worrying about the outcome. I will be honest, I have been allowing too much worry about outcomes I cannot control steal my peace.
One thing about having a smart scale tracking so many metrics, is I started only weighing myself on it once a week. It was just too weird to try and do it every day. Fluctuating hydration levels meant I could lose a significant amount of muscle (??) in just 24 hours? No, probably not. So, once a week measurements have been making much more sense.
But…it does look like my body composition in terms of muscle is declining.
I am NOT going to let this depress me. Firstly, maybe the scale is not all that accurate. Secondly, it would probably be worse if I was not trying so hard to NOT lose muscle. Could I be doing more to improve my muscle? Probably. Even though I am hitting my protein goals, I am not really resistance training. And that is okay. I am doing really well despite dealing with declining heart function.
I have to look at the good stuff. I feel well overall, but I cannot deny I have had more fatigue to deal with than I did—even at this time last year. But I am not going to beat myself up. I can honestly say I am showing up for my health every day and doing the best I can with the energy I have.
I could add a little bit of resistance training maybe, but first I am going to talk to my cardiologist at the end of the month about exercise (and muscle loss) and fatigue.
I am glad I got the scale. I would rather have a rough idea where I am at (give or take it’s unverifiable accuracy), than just pretend everything is probably fine, and be really shocked when I get my Dexa Scan in June. This way I am prepared for my Dexa, and who knows, there is a chance I will be pleasantly surprised. Either way, I know I am trying, and tracking is just a part of that, regardless of what the tracking says.
Hobbies. Another blogger got me thinking about what I can do while I wait to talk to my cardiologist about my recent follow-up Echo results. I can lean into my hobbies.
I can go skating, which I just love! I can keep going walking, especially because spring is almost here. I even did a “gentle” hike last weekend, (more on that later). I love reading and creative writing, (so much so that I studied it in university and made it my profession), so I can certainly get back to more of that.
But lately, I find myself treating my health like a serious time-consuming hobby, if not a full-time job, lol.
After receiving somewhat unfavorable numbers on my follow-up echocardiogram that I wrote about here, I finally thought to research if there is anything I can do to slow the progression of my mitral valve regurgitation.
When I first learned I had mitral valve disease related to having a connective tissue disorder (hEDS), I had grade 2 (out of 4) regurgitation. I even said in that blog post, “I will not know until some time goes by, and I can have a repeat Echocardiogram, and see if my current level of grade 2 regurgitation is stable for now, or is it progressing.”
Unfortunately, I am now grade 3, with an EROA of 0.3 cm² showing on my recent echo report:
“An Effective Regurgitant Orifice Area (EROA) of 0.3 cm² is generally considered to be in the moderate-to-severe (Grade 3) range.”
So, now that I know things appear to be moving in a less desirable direction, I want to make sure I am doing everything I should be doing in terms of dealing with this new reality.
“Grade 3 (moderate-to-severe) mitral valve regurgitation requires active management to reduce the workload on the heart and prevent progression to severe disease or heart failure. Key strategies involve strict blood pressure control, a low-sodium diet, tailored physical activity, and close medical monitoring.
Lifestyle Modifications to Slow Progression
Good news, I am already doing every single one of these things on this list! But darn, I was hoping I could feel empowered by finding out something NEW that I could do also, but alas, there were no surprises here on this list.
(And can I just say, holy crap, where would I have progressed to in the last 6.5 months if I was NOT already doing those things…)
I’ve never been one to add extra salt to my food, so according to the LoseIt app where I plan and track my food, I average about 2 grams a day. My excessive tea drinking means I am constantly dehydrating myself (tea is a natural diuretic, and I drink a lot of it). So that keeps my overall fluid volume low (less pressure).
Luckily, I have naturally low blood pressure, (very low, it’s always been that way), I just took my reading yesterday afternoon, check it out:
And I went for a nice walk on Saturday, even going up a hill, (a gain of 400 feet, a moderate/easy hike, okay for my heart, as far as I know). But my average heart rate was only 111 beats per minute, so I feel confident I was in the moderate category. (Not sure what the little bit of excitement was there at the end, maybe my sister made me laugh, or something, because we were walking downhill by then, lol). I will be discussing exercise with my cardiologist, but I am pretty sure maintaining my cardiovascular health is helping my heart handle my valve problem.
So, I guess I will stay the course while I wait, and live each day to the fullest, hobbies definitely included.
(Photo taken February 27, 2026, the day after my very first repeat echocardiogram).
I look so healthy. In some respects, I am healthier than I ever have been in my life. Hurray for planning what I eat, (lots of whole foods, thanks to being Celiac, grain free, etc), and eating what I plan for the last 2.5 years, and tons of walking.
But, in the last 6.5 months, my heart valve disease is progressing.
On February 26, I had my very first follow-up Echocardiogram. Before this, I only ever had the one Echo, performed last August, so I had absolutely no other numbers to which I could compare it to.
In fact, prior to last August, no doctor had ever even held a stethoscope to my heart. All I knew was:
In 1999, I had a small elective surgery, (my one and only, and with me then vowing I would never voluntarily do something surgical EVER again, lol), and my heart was fine back then.
In December of 2018, I noted in my journal I had “shortness of breath,” but that maybe it was due to vitamin B9 deficiency, (back then, I was trying to sort out my diet, digestion problems, and other deficiencies I had like iron).
In January of 2020, I had a lung function test due to my “shortness of breath,” but my test was normal, my lungs were fine.
So, my first sign of “shortness of breath” was about 7 years ago. I figured that was probably when I first developed “mild” mitral valve regurgitation. So now, I was truly hoping for a stable comparison Echo, because I did the math. If I was maybe “mild” 7 years ago, and I am moderate now, maybe I have 7 more years before I cross over into “severe.” Because it had only been 6.5 months since my last Echo, which had placed me at “moderate” regurgitation, it made sense to me that ‘relatively unchanged’ was a realistic expectation after only 6.5 months.
In fact, 50% of people with a mitral valve prolapse (which can eventually cause regurgitation) can remain stable for decades! The other 50%, well, factors like high blood pressure can drive progression, but no, my blood pressure is actually low. Advanced age and other negative health conditions? Nope and nope. Bad cardiovascular fitness can weaken the heart, making it harder to handle a valve problem. But that does NOT apply to me either. My fitness was tested, I am above average for my age, even if I didn’t have a valve issue. Even though my weight has fluctuated up and down in my life, I’ve always been someone who is trying to “move more.” I’ve mostly battled just being overweight, (and then always going on a diet), but I have rarely gone up and over into the obese category. And even though there have been times in the last 14 years that I didn’t walk as much, in that time I’ve logged on RunKeeper almost 12,500 kms worth of going out for a walk. I got my first step counter/pedometer back in the year 2000. I went to Workout Express! I am healthy, right??
So, this all feels like I am getting a raw deal here somewhere. It does not feel fair.
I know, sigh, life is not fair. It just is. And obviously this card I’ve been dealt is not nearly as bad as it could be…but I still wish I could just put it back in the deck, and have this NOT be my reality.
Of course, I need to just wait and discuss the findings with my cardiologist on March 30. There is no point in stressing while I am waiting. Maybe these numbers are not the tipping point yet, or anything like that. And it was very smart of me last summer to have asked for the referral to see her. I am lucky to already be set up with her. Someone specialized is already in my corner.
But what started the whole cascade of stress for me was the rest of my Echo numbers hit my health portal yesterday, on March 3, which was my 55th birthday, of all days. Sheesh, talk about timing. And this is where I got into trouble, I googled stuff like:
Question: What does it mean if my E/A Ratio: was .86 and is now 1.01, with a former E/E’ Average of 9.2, which is now 20.5?
Answer: Based on the values provided, your echocardiogram findings indicate a significant increase in your left ventricular filling pressures and a progression in the severity of diastolic dysfunction (difficulty with the heart relaxing and filling with blood).
Oh, for crying out loud, that sounds bad.
I guess I shouldn’t be surprised, ‘relatively unchanged’ was less likely considering my hernia situation is not stable either. Ug! Stupid “issues with my tissues,” it just is what it is. But I am still bummed out, and a bit stressed.
And the truth? I think I have been feeling it get worse. Last time I had normal pulmonic vein flow. This time they see systolic reversal in pulmonary vein flow. I think that is why I was starting to feel “out of shape,” and extra tired, which I blogged about on January 9. I do have increased shortness of breath, but it’s intermittent. I may have a brief moment on a walk, where I feel winded, but then it’s gone quite quickly. I am actually more out of breath making my bed everyday! (It’s a king-sized bed, it has a fairly hefty comforter that goes over top of it). So maybe I don’t need any intervention at this point…but things are changing. I’ve been feeling it.
On one hand, knowing things are changing with my heart is causing me worry/stress. But NOT knowing doesn’t make it not true, so is there any point to NOT submitting to these follow-up tests, right? I needed to know these numbers, even if they do stress me out. It’s a no-win situation when you are dealing with a serious health issue.
Another WordPress blogger also has ongoing health concerns that are being closely monitored, and recently he had this to say:
“If I could offer one small suggestion to anyone walking that road, [waiting in a doctor’s office], it would be this: bring a book. Or in my case, a Kindle. Reading helps me escape the mental spiral. It shifts my focus away from lab numbers and test results and places it somewhere far more peaceful. If you let it, the stress will take over. And some weeks—like this one—it tries really hard.”
He is so correct, and I appreciate his words of wisdom. There is no point in letting the stress of waiting…and the eventual waiting in the literal waiting room…take over. Despite the progression in just 6.5 months, especially “Systolic reversal in pulmonary vein flow,” which sounds bad, I will enjoy this month immensely. I am off on a trip to see family, and then I will be back in time for my appointment on March 30.
Here are some of the actual comparison findings, side by side, and then what Chat GTP said about it.
Echo findings last time, August 11, 2025:
Prolapse of the anterior and posterior leaflets of the mitral valve.
Moderate mid-systolic eccentric mitral regurgitation.
Normal size left atrium.
Left atrial volume index of 31 ml/m2 (normal is 34 ml/m2).
Normal pulmonary vein flow.
Pulmonic Valve: Normal structure and function of the pulmonic valve.
No pulmonic regurgitation.
Main pulmonary artery normal in size.
Left ventricle ejection fraction = 65-70%
Left ventricle ejection fraction is calculated at 67% by Simpson’s biplane.
Left ventricle Mass (ASE) index 68 g/m2
Echo findings this time, February 26, 2026:
Prolapse of the anterior and posterior leaflets of the mitral valve.
Moderate mid-systolic eccentric mitral regurgitation. Unchanged.
Changes: Left atrium mildly enlarged.
Left atrial volume indexed is mildly enlarged, now measuring 38 ml/m^2 (normal is 34, prior was 31 ml/m^2).
Right atrium volume index increased 25% from 23ml/m^2 to 29 ml/m^2, (but still considered within normal limits until over 30).
The pulmonary vein flow has systolic flow reversal.
Pulmonic Valve: Normal pulmonic valve function with trivial pulmonic regurgitation.
Systolic reversal in pulmonary vein flow.
The aortic root indexed is enlarged 2.2 cm/m^2, (normal for my BMI is generally around 1.8)
Left ventricle ejection fraction = 60-65% (weakening)
Left ventricle ejection fraction is calculated at 60% by Simpson’s biplane (last time 67%)
Left ventricle Mass (ASE) index increased to 79 g/m2 (16% increase)
Lateral increase in early diastolic velocity of the mitral annulus from 8.8 to 31.2, (threshold is 15)
Left ventricle filling pressure increase, E/E’ Average was 9.2, is now 20.5.
Hmmm…That all sounds bad. But then Chat GTP talked me down off the wall. Changes, yes, but tipping point? Maybe not:
“In the 6.5 month interval, you see your:
• Ejection fraction drop from normal to low normal
• New left atrium enlargement, along with left ventricle mass and dilation increase
• New pulmonary vein flow reversal and enlarged aortic root
It feels like a tipping point.
But physiologically, this still fits within:
Moderate chronic mitral valve regurgitation, with progressive remodeling due to chronic volume overload.
Your cardiologist might:
• Repeat echo in 6 months instead of 12
• Consider cardiac MRI if quantification is uncertain
• Track left ventricle end-systolic dimension carefully.”
Nothing left to do but wait, lower my stress, and stop googling.
I have been enjoying skating again, very much. I fell yesterday, “Toe pick!” but if you ever watched the film “The Cutting Edge,” you know that sure, falling is never fun, but if you are already in motion, you end up sliding on the ice after you go down, which actually disperses some of the impact. So, I didn’t break anything, just a bruise or 2. #worththeriskevenwithosteoporosis.
Having hEDS means my skin is highly sensitive. “This increased sensitivity is a recognized, though not always emphasized, symptom that can manifest as pain, discomfort, or an exaggerated reaction to light, touch, or textures.” —Google. I used to think my sensitivity was one of my slightly neurodivergent traits, but it is nice to know it’s not just “all in my head.” Honestly, it almost always takes me more than one try to put on a pair of shoes, because if I don’t get the seam of my sock just right, then it will bug me to distraction.
Also, I do not have very thick skin, literally and figuratively. Literally, my skin is quite thin and translucent in certain areas, back of the hands, top of my feet, inside of my arms, so that all my veins are highly visible. Figuratively, because I am very sensitive to criticism and feeling as though I may not be believed, especially when it comes to whether something “hurts” or not. Pain is very individual and subjective, but sadly, not being believed by doctors does happen to a certain amount of patients. And my mom, who has a very high pain tolerance and forgoes freezing at the dentist for a filling, is fond of saying, “It doesn’t hurt, you only think it does.” I have to remind her she is the exception, not the rule, and I was NOT gifted with that particular high tolerance gene.
Interestingly, having a public blog actually opens me up to criticism, but I love this narrative space despite the risk. I try to be a nice person, word my posts in a manner to reflect my true nature as someone who is open to all sides of an argument, and not one to be judgmental. I am more interested in learning new things, not in trying to change anyone’s mind. But regardless, not everyone is going to like me, or what I have to say. I’ve often thought it is only a matter of time until someone out in cyberspace calls me a drama queen, especially now that I have been complaining (but actually intending to simply validate myself, not necessarily complain) about recently diagnoses and “issues with my tissues.” BUT! Thankfully, in the 15 years I’ve had this small little blog, (started in 2011 first for my creative writing, then expanded in 2019 to include my dieting health journey), I have never received a negative comment. Personally, I really love the WordPress community, and I am grateful for people who post regularly, and even those that don’t. I love people who share their stories.
I cover all this personal back story because I found myself yesterday, on February 9, taking a picture of the remaining pink circle on my chest. Sunday night, I felt a faint burning sensation in 2 of the spots that started as hives 3 weeks ago, but nothing was visible to the naked eye. Then yesterday morning, the burning sensation was gone, but the other 3 spots were still itchy. One of them was pink, so I took a picture. I am still experiencing on and off digestive discomfort as well. Ug! Talk about sensitive! 3 weeks later, and I still need to take allergy medication. After the spots faded significantly in the first week, I discontinued the prescription steroid cream. I only use that stuff sparingly, as it is quite strong, especially considering my sensitivity. I am just taking the Allegra, when I experience a symptom.
But then I asked myself, why are you taking a picture of that 1 barely visible spot?? Because unless I have “proof,” I fear I won’t be believed that I am STILL having this reaction.
I second guess myself, and this recent reaction (with a 6-week gap between exposure and slight reaction, and then my huge reaction which erupted January 20) is so bizarre, it has really triggered my feelings of “I may not be believed.” I am not taking a picture to convince anyone else. Nope, the picture is just for me.
I know this is routed in childhood experiences, and medical trauma when real pain and fear of injury is not believed, (for example, an impacted wisdom tooth to which local anesthetic had not yet fully taken hold, the fact of which was initially dismissed by the oral surgeon I was trusting to extract it). As I typed this, I felt the urge to declare, “I have the x-ray of the impacted wisdom tooth if you don’t believe me,” and post a picture! Except, no one is saying they don’t believe me, except me. I am the only one here, in this space, saying that. But second guessing myself like this constantly, always seeking to provide “proof,” it is particularly bad for my own self esteem.
Sigh. I am recognizing this behavior, and I am working on being kinder to myself.
Years ago, (I feel like I was naive back then, maybe I still am, lol), I really tried to examine what would be the first steps on the path to regain. I felt like there was a range of pounds regained on the scale that specifically—yes—that would define that path.
Seems pretty obvious to me now, but numbers on the scale are just the result of walking down a path of my behaviors, focusing on the numbers without addressing the behaviors that caused the numbers.
For me, I realize it is truly not a new higher number on the scale, it is the behaviors that precedes that new number. In fact, certain behaviors and choices (to overeat emotionally) and then NOT seeing the scale go up to a new number (at least, temporarily, or after just one time off plan) used to lead me to think I somehow “got away with it,” (the overeating behavior, that is).
For me, I believe that to achieve long term maintenance, I must NOT allow the behaviors. Period.
What is going to work for me long term is planning what I eat, and eating what I plan, no random unplanned food to stuff down my discomfort. Simple. I can plan dessert. I can plan larger holiday meals. I just CANNOT randomly (without a plan) overeat dessert-type foods to stuff my emotions.
And for me personally, I do not think there is any amount of regained weight that is acceptable for me, IF that weight gain is caused by a return to old behaviors in overeating, especially based in the desire to stuff down discomfort (emotional, or even physical). And especially allowing the old behaviors on a regular basis, and then restricting to lose regained weight.
Thankfully, this post is not about regained weight. I currently weigh 122.8 pounds. But January was a rocky month, compounded by a multi-week-long attack of intense immune memory-driven recall dermatitis (external part of the reaction), followed by days of worse than usual digestive problems (internal part of the reaction). Apparently “recall dermatitis is notorious for being slow to fully resolve once it’s activated,” and I have been living that reality. (Sunday, February 1, I still woke up with one itchy pink circle that needed medication. Two other spots were itchy also, but invisible to the eye, not pink). I still feel a tingling “itch” in those spots, as we speak.
My body is unpredictable. Therefore, that can affect the stability of my weight, which is fine just as long as it’s NOT because I made unplanned food choices.
I saw problematic behavioral choices before the systemic immune attack that I do not want to continue, but thankfully, I did not succumb to during. That was a pattern I had of soothing in the past, not just the soothing of emotional discomfort, but sometimes of physical discomfort. Seeking relief. But those behaviors, overeating and/or restricting afterwards, they do NOT/will NOT serve me in a positive way.
I have a habit of assigning meaning to random dates, (meaningless to anyone but me). It can be a bad habit, because healthy routines should not need “special” reminder dates, or special restart dates. Today, right now, is the only date I need to pay attention to.
My heathy routines should just be my daily normal. And they are. Until they aren’t.
Today, I find myself looking back at the past (and past dates) because in the present moment, I find myself concerned. Could I end up returning to my past food behaviors? I definitely thought about it when I struggled with the discomfort of the immune/allergy reaction. I am aware that I carry my past wherever I go. I have discussions with my past. I know that does not sound good. I can (and should) let my past go, and I definitely do NOT want to use my past as an excuse for something I choose to do today. And my future is not yet written, so I can simply choose to live in the moment, and surround all my moments with good choices.
On the other hand, he who forgets the past is doomed to repeat it. That is good advice too.
January 12, 1999: That was a really big date in my past, the anniversary of which was a few weeks ago. It was the first time I ever saw 200 pounds, (204, to be exact), on the scale. After that, I lost quite a bit of weight in 1999.
Then, after making a big geographical move and regaining weight, I also saw 207.5 and 204 pounds, in the years 2003 and 2004.
I have never seen weights as high as those ever since. The closest I have come, I saw 193.5 and 192.9 pounds. The first of those 2 weights was in 2011, and after that weight, in 2012, I went gluten free and lost quite a bit of weight. I saw the second of those 2 weights in 2023, again after another big geographical move, before my recent consistency and determination brought me to where I am today. I have not seen 200 pounds or over on the scale in the more than two decades since 2004. But I spent decades of my life losing and then regaining significant amounts of weight, getting close to some of those 5 high weights I listed. What a waste of my time, losing to only regain, (totaling over 500 pounds! that I wrote about here), over and over again.
Very recently, 5 other dates have been really significant:
1)Dec.21/25
2)Dec.25/25
3)Dec.31/25
4)Jan.5/26
5)Jan.11/26
On all 5 of those days I overate excess food that I did not plan to eat.
I did not have the recall dermatitis attack until January 20, but maybe I had started something smoldering ahead of time with less than perfect food choices, and/or those 5 different days (that I succumbed to old soothing food behaviors) was because the immune attack was already percolating (and depleting my willpower) ever since wearing the adhesive pads for 24 hours on December 9th to 10th. I will never know for sure.
I personally know people that are right now, in these first weeks of 2026, working hard to reclaim their health. And yet on these 5 different dates, my behavior was the opposite, (whether or not I had a possible excuse physically—something effecting my immune system—does not matter, because there will be always be available excuses to “give in” and eat “whatever,” and I canNOT let “I feel bad” emotionally or physically to be one of them). Those dates are representative of me essentially throwing my health away, certainly not holding on to it. The health I have now is health that I have worked my whole life to achieve, (unpredictable reactions aside). I am at a healthy body weight, with the ability to go for walks, go skating, and play on the floor with my grandson. My current health is the culmination of me about to turn 55 year old, having worked consistently to make good choices for the last 2.5 years. Yet, the choices I made on each of these 5 dates…Where am I going to be if I return to that behavior??
What is the number 1 thing on this list of “5 Pillars”? = Health.
1)Health
2)Financial security
3)Routine/peaceful life to calm your nervous system
4)A few true friends
5)Emotional resilience to weather storms and keep moving forward, set boundaries and say yes only to things that support you
After I copied this list, I spent the last few weeks leaning into all 5 of these:
1)I went back to my routine healthy food and exercise choices
2)I worked on our year-end financials, to get/keep our financial ducks in a row
3)I leaned into planning and scheduling my daily routine
4)I went skating and enjoyed the company of other people
5)I proved to myself that I am resilient enough to weather a recent storm
This is a much better list of 5, than my list of those 5 dates of bad choices.
I did have a thought. 2.5 years of discipline and consistency, where I do NOT overeat. There were a few times I did have a little more food than I planned, I am not perfect, but those were an isolated incidents, where I was back the very next day to eating what I planned, (without rapidly following reoccurrences). Then I started HRT on December 15, and after that, I have 5 different days over the course of 3 weeks where I choose to overeat, just like I used to, and I struggled to stop?? Is this a physical response to the HRT? Or am I just comforting something emotional in a way that I have not indulged in for over 2.5 years?? No, I don’t think it was the HRT. More likely it was a depletion of my resources (that I did not know was happening, except I did mention extra fatigue here) that could have been a factor, while my immune system went into overdrive.
It feels like I have turned a corner, and I am still taking HRT. And because no date on the calendar will ever compare in meaning to waking up today, at 122.8 pounds, I am once again feeling resilient. I have made it through my recent “storm” of old behavior, and “storm” of immune reactions, to the other side, where thoughts about turning to excess food as a comfort have gone quiet.
This is not perfection, but progress.
P.S. Something that just tickled my slightly neurodivergent love of patterns, is that despite this being 2026, I think this is my year of 5’s. I just made a list of 5 years where I struggled at my highest weights. I just made a list of 5 dates where I struggled with unplanned overeating. I just made a list of the 5 pillars of health, and I am posting this on the 5th. And I am 5 foot 5.5 inches tall, and I am about to turn 55 years old.
Sigh. What a month January was for me. Just when I thought nothing “new” would happen, we had a truck accident that I mentioned here, where a solid sheet of ice from the top of a passing cube van slid off and hit us amidst a notorious corner of Highway 1, while we were driving into town, resulting in my husband going 3 weeks without his truck. And then I had (still having) a crazy immune response to something I had been exposed to December, triggered by something I probably ate in January.
I say probably, because I will never know.
What I do know is that MCAS is related to hEDS, but the immune nature of this reaction (including swollen lymph node or nodes, hard to tell) started me thinking about the fact that long before any of the diagnoses I received in 2025, I was told by a doctor in 2011 that I was probably Celiac.
There’s that word probably again.
At the time, the only way to prove Celiac disease was to get an intestinal biopsy, which the doctor said would take at least 3 months to have scheduled, all the while I had to keep eating gluten, otherwise I could get a false negative. The thing was, I was sitting in the doctor’s office, very ill, having already waited 3 months for the referral to an allergist for my non-responsive-to-allergy-medication reactions. When I finally got to see the allergist, she said, “This looks like your immune system is excited about something, not just regular allergies,” and had ordered the following blood tests:
(Written in typical medical hieroglyphics that requires some Googling, lol)
We did not have a My Chart (or equivalent) back then, so I do not have a copy of those results, (but I wish I did, darn!). All I know is the doctor that sent me for the allergist referral in the first place, looked at the results, then called me in for an appointment. Then he told me he was pretty sure I was Celiac, and that a strict gluten-free diet would help. (Then he told me about the biopsy, and the at least 3 month wait, etc.).
He had me at “gluten-free.”
Going gluten-free was life changing. We never scheduled the biopsy. I had break-through reactions, but still felt good, but then I was fairly ill again 2016-2019. Lots of tests ordered during that period of time, abdominal ultrasounds, tests for infections, tests for Lupus, as well as the lung function test in January of 2020, for the shortness of breath that started in 2018, (which was actually my heart mitral valve). The results from all these tests did not give me any answers. (It was a list of all those historical tests that I took with me to my doctor in July of 2025, which finally led to a referral to a rheumatologist—a referral which had been refused in 2020–an echocardiogram, a proper bone scan, and finally all my diagnoses).
In 2019, in addition to gluten-free, I went grain-free, then I went as ultra processed food-free as I could, and once again, I felt so much better! Life changing again. (This is why I think maybe it was the processed package of taco spice that was my recent problem. But maybe not, like I said, I will never know).
Anyhow, I recently joined a Facebook group about Celiac, and they posted this morning something that resonated with me. Although lately I have been framing almost everything through the lens of hEDS and MCAS, it is very validating to not forget I am a Celiac too, and this will always add a layer of complexity to any and all immune responses I experience:
“Day 3 of my series on living with celiac disease.
It’s the “what ifs” that make celiac disease hard.
Is this GI distress from gluten—or something else?
Is the peanut butter contaminated because someone used a gluten-covered knife?
Is this product actually gluten free, even though it doesn’t list gluten-containing ingredients?
Did my friend accidentally add a gluten ingredient to this “safe” meal?
Did I pass this on to my children?
Why did I get this when my sibling has the same genetic markers and didn’t?
How long am I going to have to wait for a cure?
And underneath all of it:
Is my diet gluten free enough?
Living with celiac disease isn’t just about avoiding gluten. It’s about living in a constant state of assessment. Every symptom becomes a question mark. Every meal comes with a quiet audit. Every off day sends you replaying what you ate, what you touched, what you trusted.
People think celiac is “simple” because the treatment sounds simple. But gluten hides. Labels change. Cross-contact happens. Bodies don’t always give immediate feedback.
So you stay vigilant.
You second-guess yourself.
So much of it lives in your head — in the calculations, the vigilance, the what ifs you carry silently. That’s what makes it hard.
Work hard and stay safe out there. I see you and there is a whole community here that sees you too.”
I am documenting this for my own records, not to complain, but to allow for my real lived experience.
I wish I knew what would “work.” The truth is, I don’t know. I don’t feel as though I know my body at all. It has become a stranger to me. Too many changes, too many diagnoses, too many symptoms, too many “issues with my tissues.”
I have spent months conducting “science experiments” on my body, when it comes to what Chat GTP called “refractory constipation.” I have tried pickles with my meals, tried kimchi, tried PEG solution, tried magnesium, tried high fiber, tried low fiber…
Sometimes one thing works…
The next time, the very same thing does NOT work.
Writing about it helps. Looking at pictures helps. 😊 Because I have a habit of giving myself self-gaslighting pep talks, with things like, “This immune response is only as bad as you think it is, or only as bad as you LET it be.” But I am not letting this happen. In fact, no one is consulting me and allowing me a say in the matter, and that is the problem.
It just is what it is, until my body is done doing what it wants to do.
I still do not know what was the systemic trigger that caused the reaction resulting in immune memory-driven recall dermatitis.
But it’s not done yet.
My skin reaction lasted all week. Friday, January 23, the activated spots made my chest feel sunburned all day.
They thankfully faded to pink over the weekend. But I have been wearing a FitBit for 26 months, then all of a sudden?:
This welt cleared up quickly with steroid cream and has not reoccurred.
And I definitely have been still feeling stiff joints, sore tendons, occasional dizziness (more than usual), and my mucosal tissues are also inflamed.
But then yesterday…
I just had a little cold diluted juice about an hour after breakfast (which I drink everyday, I have a small glass when I am thirsty, for crying out loud) and boom. First, some pain. Then within an hour my whole abdomen expanded.
I woke up this morning, and it was a bit better.
But then…
I took a shower and maybe it was the change in temperature, but my lower abdomen distended again, and currently it even hurts more than last night. Very painful to remain standing up straight. Feels better laying down, with my knees to the left.
Positive self talk is excellent, at times, but sometimes I need to just keep it real. Sometimes pain is NOT “discomfort.” Sometimes pain means standing upright is difficult, because it pulls on all the tissues that are painfully swollen. Sometimes curling on my left side into the fetal position will lessen that pain. Sometimes making a blog entry like this makes me feel better, because it just brings the experience out into the open as a fact, and not just a story I am narrating to myself in my head.
Warning: This post contains pictures of hives!
When I wrote this post on Monday, it was inspired by having eaten with my husband the night before. He felt like eating tacos, and instead of making myself something completely different, in a completely different pan, I decided to “join” him, and eat some taco meat (that I had prepared myself) on a bed of lettuce, while he ate tacos in shells with all the fixings. Because eating “together” is fun.
But I didn’t feel very good the next day. It was a reminder to me that my stomach generally prefers no surprises.
The Old El Paso Mild Taco Spice packet looked reasonably “safe”:
“Corn Starch, Salt, Spices (including chili pepper), Maltodextrin, Onion Powder, Sugar, Vegetable Oil (canola/soybean), Silicon Dioxide, and Natural Flavor.”
Apparently, for me, maybe it was not safe?
What happened next…I almost do not believe it myself.
Exactly 6 weeks ago, on December 9th and 10th, I wore a 24-hour heart monitor.
Of course, once I pulled off the 5 sticky patches, I had a rash under each spot. I treated the rash for a few days with my eczema cream, and it went away.
Fast forward to Sunday, January 18. I ate 139 grams of taco meat (yes, I weighed it) on lettuce, with a few grape tomatoes (which I literally eat every single day with my pickles, at lunchtime) and some cheddar cheese I grated myself and sour cream, (both of which which I eat often and without issue).
Monday, January 19, I did not feel all that well, and I was very gassy, (slow protein digestion). And I had a sore lymph node under my arm. I thought, well, that’s unsettling, (no one likes to feel a sore lymph node=alarm bell), I will have to keep an eye on that. I decided, just as long as the lymph node shrinks in a few days, it will have been nothing. I decided to blog about my upcoming dinner out for valentine’s, because with my upset stomach, it was reminding me I dislike eating out, but I must remember to think positively.
Tuesday morning, January 20, I tell my husband, wow, this lymph node under my arm is still sore. Then he says, what’s that red spot on your ribs? I go look in the mirror…
EVERY single one of the 5 spots (4 out of 5 are visible in the picture, but trust me, it’s all 5 of them, and no where else) that had become a rash after pealing up that adhesive in December…is once again flared up into a rash…but this is 6 weeks later!!
Could it have really just been the taco meat?? That is the only thing I can think that it could have been.
Anyhow, this helps:
But last night, 8 hours after taking a 12 hour dose, it wore off and these 2 in particular felt EXACTLY like I had been stung by a wasp !
Thankfully, after about an hour, the Allegra worked again, and I have vowed to take it every 6 to 7 hours (stay ahead of it) until these hives disappear.
I guess I want to document this MCAS reaction because I have experienced a certain amount of skepticism when I declare, even to my doctor recently about my hormone therapy, “Oh, I don’t think I could tolerate a subcutaneous patch, my skin is really sensitive.” Yes, I seem dramatic, but it is because this reaction was…dramatic, and a bit traumatic too. It was painful, like wasp stings, and right now my skin feels itchy and bruised, (and the spots are still red and inflamed, even though they are no longer burning like a sting). And the tendons in my ankles have stiffened up (inflammation in a “weak” spot where I have had previous/reoccurring issues). Generally, I feel like I’ve been hit by a truck. 😦
Update: I did go see my family doctor (PCP), and then talked with Chat GTP, “Although uncommon, delayed reactivation of prior adhesive-induced dermatitis is a recognized immune phenomenon. The precise reappearance at identical circular sites strongly supports immune memory–driven recall dermatitis, likely amplified by mast cell activation from a systemic trigger.” Just another interesting thing to add to my hEDS/MCAS/POTS list. My doctor checked my swollen lymph node, noted my file accordingly, and prescribed a strong steroid cream for the burning and itching. 👍
The Bio Joy Diet 