I did it, as promised in this blog yesterday, I went skating, April 15, 2026. At first it was empty, but within 5 minutes I was joined by all the regular users of the arena, who greeted me warmly after my 5 week absence. I was absent due in part to my travels in March, but also due to me struggling to find my footing for the last 2 weeks.
Part of my abstinence from certain behaviors around food (emotional eating, overeating in general) has hinged on my creation of a new identity for myself as a “healthy” person. I have consistently been telling myself a story about what healthy people look like (for me). 1. They exercise regularly. 2. They eat in a balanced way, so that they experience weight stability, (which may look like planning what they eat, and eating what they plan). And 3. They make healthy food choices, choosing whole (less processed) foods where they can, and paying attention to macros like protein grams, for example, depending on their individual needs. I also added in emotional health, like emotionally healthy people don’t procrastinate, they prioritize routines and keep a clean home/environment, and they plan their meals ahead of time to keep a running grocery list (and then they can shop for grocery sale items), things like that.
So, I have been identifying with my personal definition of a healthy person for almost 3 years now. And armed with that identity it was easier NOT to color outside of those “healthy” lines listed above. Bonus, I started to feel really good, and look better too, based on what personal outward-looking goals I had for myself, like get to wear a pair of “skinny” jeans. (To each their own in this regard).
But recently finding out my mitral valve regurgitation is NOT exactly stable has really shaken my identity, from my point of view, as a “healthy” person. My cardiologist confirmed that although my mitral valve heart disease is in a relatively stable plateau phase, it is most definitely a progressive situation, and open heart surgery (probably open heart because of my bileaflet prolapse) is inevitable. No surgery this year, but maybe next year, we will see what my November echo numbers say.
The possibility that my heart could simply remain the same for decades was a story I told myself after my very first echo last summer. And it’s true, 50% of people with a mitral valve prolapse can remain stable for decades. But I was not diagnosed with just a prolapse, I was diagnosed last August with moderate regurgitation (caused by bileaflet prolapse). More likely something in there just finally wore out, maybe as long as 6 or 7 years ago, and it’s been progressing ever since. But we’ve only just now discovered it, with the regurgitation already being near the “severe” stage. I was at the top end of grade 2 last summer, and now I am at grade 3. Despite my heart dealing with the chronic volume overload being considered as in a “relatively stable period of adaptive remodeling,” or “plateau,” the condition is progressing, and fairly steadily, considering the small window of time between my 2 echos (August to February). If this meant true stability, instead of relative stability, I would get to wait a year between my echocardiograms. Instead, I already have one on the books for November.
Since learning all that just over 2 weeks ago, I have been struggling with one question: Healthy people don’t have a chronic, treatable (but incurable), heart valve disease that is progressive, do they? What is my identity now that I know it is progressive?? For the time period after my very first echo last summer, until my cardiologist appointment 2 weeks ago, I told myself there is a chance my regurgitation was stable, and could be stable for decades, because it was true, that was a possibility. But now I have learned that is not the case for me. So, who am I now?
Unfortunately, I have not yet redefined my identity based on this new information, in a way that will move me forward in a positive way. Instead, I am struggling.
I know I keep going over and over this same story about it, here on my blog. But writing about it is how I am working through it, and I am glad I have this outlet.
I love tracking, accounting, inventorying, archiving…almost anything and everything. From a 20-year long list of all the movies we saw in a “big theatre,” (when we moved from a small town—my birth place—to a much bigger city, and lived there from 2002 until 2022), to all things to do with my health and body. I’ve had a home computer PC since Christmas 1990, and that’s when I started my obsession with having computer files and lists for everything.
Last summer, two things coincided with one another by coincidence (maybe). I had been wearing a kid’s version of Fitbit (I really liked the soft wrist band) since December of 2023. My friend had been wearing a Fitbit since 2020, during a time when she and I were doing a lot of outdoor hiking because things were closed on and off during the first year of the pandemic. When I finally got one, it tracked my steps and my sleep, and that was it. But I loved it, and I really liked linking mine to my friend, and seeing each other’s steps each week. My mom knew how much I liked it, and told me in July of 2025 that she was ordering herself one, and when I came to visit her in August, I could help set it up for her. She wasn’t too keen that I would be able to see her weekly steps (or lack thereof), but I was excited to also add her as a friend on my Fitbit app.
During this same time, I had gone to the doctor about the problems I was having in my hands with Raynaud’s, pain, and loss of dexterity, and she had looked at my entire medical history as a whole, (really, for the first time, she hadn’t been my doctor for very long), and ordered an echocardiogram of my heart “to rule out” Ehlers-Danlos Syndrome, (hEDS). I had the Echo August 11, got the results at 11:00am on August 14, and got on the plane to fly to my mom’s that same day at 6:00pm. If you didn’t already know, the echo ruled hEDS in, with moderate, now borderline severe mitral valve regurgitation.
It was sitting at my mom’s kitchen table setting up her new Fitbit that I saw that her new “fancy” Inspire 3 tracked so much more than my little kid’s version! It tracked heart rates, and I had just been told I had a heart problem! (It also tracks detailed sleep “architecture,” omg, what fun). I ordered myself an Inspire 3 on the spot, and had Amazon deliver it to me at my mom’s house the next day. (Gotta love this ease of access to all things in our modern world).
You can imagine that ever since I have been tracking all things to do with my heart and sleep. ♥️
So far this month, my heart has been on a bit of a roller coaster ride. The thing is, this whiplash up and down coincides with my moods, with anxiety climbing, followed by a depressed state where all my daily tasks feel like an immense struggle. Including the fact that I am struggling with my good old stand by of planning what I eat, and eating what I plan. After some serious sloth-like behavior over the weekend, I pushed myself out the door for the last 2 days to go for my walk, but boy, that was a huge struggle too. And today is free public skating…and I don’t want to do that either. But I will be happy afterwards that I went, if I “make” myself go.
So, I will make myself go. Especially now that I have written it down and told the internet, I better follow through and actually go skating later this morning.
But I do wonder 💭 ?
Is my anxiety up because my heart is a little off and it is sending weird signals to my brain? Or am I mentally anxious in my thoughts, and is that making my heart go a little off? Which one is causing which one? Which comes first, the chicken or the egg?
First of all, sometimes a feeling does not just start in our heads with our thoughts. Sometimes the feeling is caused by a physical reality. We all know about and many of us track our blood pressure with home blood pressure monitors. But pulse pressure matters too, and personally, until last summer I had never heard of it before.
“Low pulse pressure (or narrow pulse pressure) occurs when the difference between systolic (top) and diastolic (bottom) blood pressure is 40 mmHg or less, or ≤ 25% of the systolic value. It indicates reduced cardiac output, meaning the heart isn’t pumping blood efficiently, often caused by heart failure, valve issues, or severe blood loss.”
And if my pulse pressure goes below 20 mmHg, (which it has been known to do these days), it actually feels exactly like mental anxiety, except there is a physical cause, not just a mental “spiraling thoughts” cause.
But my husband argued that maybe all this tracking is part of the problem. He could be right, I don’t know. On one hand, it feels a bit relieving to know it might not be “all in my head,” this anxious feeling is being caused by a something physically “off balance.” On the other hand, am I making myself anxious and then off balance when I start overthinking about my heart valve malfunction getting worse?
I don’t really have the answer to that, except that NOT knowing, or not tracking, will not make my heart problem go away. Interestingly, at the very start of my appointment on March 30, my cardiologist told me to get a Kardia Mobile ECG device, (just a basic one, off Amazon, didn’t have to be fancy or anything), to monitor any change in my symptoms. Even if I am in a relatively stable plateau phase (relatively being the operative word), I am on close monitoring with another echo in November, and stress test in December. So she wants me to keep track of any changes in my symptoms. Sigh.
So, I know that worrying doesn’t help. And maybe tracking weird patterns causes worry. But I guess I have a history of somewhat obsessively tracking things (even trips to the movies) even before having a major health issue to track. And don’t forget the dieting, omg, the dieting that I have been tracking forever. I learned to count calories (my mom had a little pocket book with all the calories of food listed in it) BEFORE I was even at an age that ended in “teen.”
One thing I don’t really track? Blog statistics, because I know I am mostly just writing this for myself. 😊
Walking the waterfront at Sidney, BC, on March 26, 2026, 5 minutes from my mom’s front door. Time well spent living my best life, despite the rant that follows…
How many of us know if our end time is coming soon? No one. But…some of us have been given a diagnosis that tells us we are on a faster time line than average. Sooner than most. Maybe really soon, maybe not, but sooner than most.
And maybe I shouldn’t be thinking about it. But guess what? I am thinking about it! And writing about it helps! Excuse me! I am working through Kübler-Ross’s 5 stages here, and stage 4 just hit me hard!
I know that those exclamation points right there, that sounds like I am being defensive.
I suppose I am defensive. I have people in my life who constantly demand all conversations need to be positive, and I am discouraged from processing my feelings on a topic if I feel any depression about them, (which is the very definition of toxic positivity).
So, I am going to write about them instead.
The recent Netflix documentary about Moriah Wilson actually said that maybe “Her body or her soul knew she had less time than most people, and maybe that’s why she had that sense of urgency.”
So, maybe I am not the only one who feels they have less time than most people. But I do not just feel it, I have been given a medical diagnosis that says so. And frankly, having never been given a “life-limiting” diagnosis before, I really do not know how to handle it! I am just treading water here! And at some moments during the day? I am very upset and depressed about it!
So, I need to write about it.
Let’s put a clock on my “less time than most people.” If I knew I had just 5 years left, how should I spend those 5 years? The important question I have is: IF we just say that MAYBE I have 5 years left, (instead of—let’s say—35 years left), knowing that…do I live my next 5 years differently?
This post is NOT about being sad and depressed and planning the worst. This post is simply about knowing that the decisions I make today—about how I live my life today—are being overshadowed by the thought that there is a chance I could only be planning for the next 5 years, instead of the next 35 years. And does that (should that) change anything about the choices I make moving forward?
Maybe I should look at it through the lens that I am privileged to know my end is coming sooner than average—sooner is guaranteed, because of my progressive heart valve disease—but I cannot say how soon. The cardiologist thinks a have 1-2 years maybe, before surgery would be needed to prevent heart failure, (which would still take further years to occur, but still). !!
I am not saying that to be dramatic, it’s a fact.
And I am not saying that to focus on the negative, it’s a fact.
And I am not saying that because I do not believe in modern medicine, but it’s a fact that modern medicine can honestly provide no guarantees, we are dealing with a very major and delicate organ here, (see actor Bill Paxton’s death).
Sure, eventual and successful open heart surgery (most probably open heart due to bileaflet involvement instead of the more common single posterior leaflet involvement) and repair or replacement of my mitral valve can maybe buy me a bit more time, on an already faster clock. But, that’s a maybe because hEDS surgery is always a wild card, AND bileaflet prolapse is far more complex. And it is still just “buying a bit more time” on a clock that is already ticking faster…than for a person with a healthy heart. Again, these are just facts.
There, I said it. I am ticking faster towards my end time than a person with a healthy heart. Because my heart is NOT healthy, even though I look just fine “on the outside.”
I do NOT have “Coronary Artery Disease,” but I have a broken mitral valve that is leaking blood at an ever progressive rate. My heart muscle is strong, so for now, it is handling the “chronic volume overload” by adaptively remodelling itself, which is why so many numbers changed on my echo during that 6.5 month interval, and I can still go for a walk everyday like usual. But eventually, it will start adaptation that is maladaptive, which will cause “heart failure.”
Heart failure is a progressive condition where the heart is too weak or stiff to pump blood effectively, failing to meet the body’s needs for oxygenated blood.
So, my end is coming faster because of my leaking valve. Fact. Not drama, not negativity, fact.
I type all this out because it is on my mind. Not all day every day…but when I put on a load of laundry, or when I empty the dishwasher, or when I log on to my computer to download the latest bank statement, it pops into my head and I wonder when is the inevitable actually going to happen?? How long do I have??
But I don’t know. No one does.
But if I live today the best I can, because I know my time is limited, then I am winning? Is that enough? I guess it has to be, unless I can figure out some other purpose that will lift me up from stage 4 depression to stage 5 acceptance.
And I would not have know my time was coming this soon, IF I had not found out I have a heart valve defect last summer, AND then found out just last week that yes, for sure, it is progressive. That kind of blows my mind that I could not know this was even happening. This exact time last year I didn’t know. Ignorance is bliss, (or should I say was). But I cannot unring this bell, I am no longer in the dark here. I am now well aware that my heart is remodeling due to chronic volume overload, and that means eventually my heart’s adaptation will become maladaptive, overtime leading to eventual ever-worsening heart failure.
And there is literally nothing I can do about it. AND I cannot even say when it will happen, just that it will happen sooner rather than later.
So, now what? I guess I can continue to still work to control my weight. I can continue to succeed in this battle I have waged with my weight for what feels like my whole life, by planning what I eat, and eating what I plan. And keep going for that daily walk like it’s my job.
But it does not feel like enough. For some reason, doing the same old same old, day in and day out, feels like inaction, instead of action. I feel like I should be doing something more. I need a higher purpose, I get that. But I haven’t figured it out yet. And that is why I came on here to blog instead. And I fully acknowledge that Kübler-Ross’s 5 stages of grief are real, especially stage 4. And I will be working on getting to stage 5. Eventually.
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.
(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.
Someone once told me that empathy, which is “The ability to understand and share the feelings of another,” was technically not possible, and they are correct. We honestly cannot climb into the mind/body of another and share what they truly feel.
However, we do understand similar experiences, and we share their feeling through our own lens of feelings and experiences. Even when we lack a similar experience, we can feel similar grief and pain for them, amidst the onslaught of life changing events, because maybe we have experienced grief and pain of a different type before, with grief and pain being the common denominator. We do not have to exactly feel what they feel to have empathy, because we understand it and feel it through our own experiences and feelings on their behalf.
It can be important to make the distinction, however, between someone else’s feelings and our own, when it comes to negativity directed at us. We do NOT have to exactly feel what they feel, but we can understand it and feel it based our own experience on their behalf, thanks to what they have directed at us. But this is not sharing feelings in a good way, if their feelings are negative. When someone has lashed out and criticized us, we may be left feeling every sharp word directed at us, taking on what we assume are their feelings about us, and believing them, for hours or even days afterwards.
(But if you can, take a moment to reflect that you do not have to take on the burden of how they feel about you. First of all, maybe they are mistaken. Maybe what they said about you was actually more about them, not about you at all, even though it feels otherwise).
But I have not been good at NOT taking on those emotional burdens. I cannot seem to make myself “grow thick skin” or “just stop caring.” It feels as though I am just wired for this sensitivity, no matter how much I try to “grow out of it.” And people in my life not supporting me in this “extra” sensitivity I have, basically invalidating my experiences at times, seem to have made it worse!
In fact, I recently had an excellent discussion with my sister-in-law, as she watches her daughter struggling with “something the girls said at school” about her. Lordy, I remember those days! Girls, mean girls, pre-teen and teen years, school, high school, wow, I sure would NOT want to relive any of that. And yet 55-year-old me can still struggle with letting things people say bother me intensely.
I write this out NOT because I have been recently criticized, or anything like that, but because I have been self-criticizing lately, and it has gotten worse this last week. I am in a tug of war with myself, emotional me versus rational me. And I keep giving myself shit for having this type of battle in the first place! But I recognize constantly berating myself for my own perceived flaws or weaknesses (can I just grow some thicker skin already!) is really damaging to my self esteem.
And because of this bad habit of directing criticism inward, and invalidating myself, I really connected with this:
And I know my niece, also experiences this RSD, because she is being exposed to some of the same people that I grew up with (same family of origin, of course), who tend to be outwardly critical of others. In fact, when my sister-in-law tells me about certain interactions, I tend to feel validated, “Hey, that sounds just like when I was growing up, so I guess I am remembering my childhood correctly after all…”
But I ended up making this very important distinction for myself:
The rejection sensitivity I have is mostly with people who have a history of criticizing me, (or I have perceived their words as criticism, constructive or not), which has created a foundation of insecurity in that particular relationship.
The overall structural foundation of specific relationships is very key in my rejection sensitivity problem. I do not have it with everyone, just with select people based on the foundation of my relationship with them, or at other times with other people when I feel especially vulnerable.
I have been feeling extremely vulnerable in the last few months, but I am hoping “this too shall pass” and I will soon start to feel better and stronger emotionally. All I can do is keep working on it (and blogging about it helps) and continue to NOT turn to food to stuff these feelings down.
I always thought that I would “magically” be a different person if I lost weight. And yes, there is the before picture—that person who inhabited that body—and the after picture—that person inhabiting a body that now looks different.
Spoiler alert, it’s the same person.
Same person with the same brain, same thoughts, same insecurities. If you let it be.
We went out for Valentine’s Day, and I wore a new dress I had purchased (after our unexpected trip to Kelowna in January to drop off our truck for insurance repair following the sheet of ice smashing up our frontend while passing a commercial truck on the highway). I have always loved dresses with a Chinese-style and neckline, even though I never wore them out in public. In fact, I had finally donated my last two Chinese-style dresses during a closet purge about a year ago, knowing I would never wear them. Then I saw this dress at a thrift store, which had the Chinese-style neckline, but beyond that was more of a cultural mash up with its cut and fabric. I could not resist buying it.
But I keep looking at the pictures because I still don’t recognize myself. You know, part of me has never recognized myself. Growing up, my mom actually told me she thought I was vain, because I spent so much time looking in the mirror. I even remember taking my grade 12 provincial examination for English, and choosing the topic “Face in the Mirror” as my narrative essay. I don’t remember what I wrote in that essay, but it was something to do with not recognizing the other “self” that I always saw there.
Some would say “mirror checking” is a common symptom of having eating disorder-related body dysmorphia, (and/or appearance-related ritualistic or repetitive behavior). And I acknowledge that could be some of my problem.
The other part is just consistently feeling “out of body.” Disconnected. Too in my head/mind, moving through life going through all the motions of daily living, documenting events (like my husband taking my picture on Valentine’s Day when I left the table for the rest room). But then stepping outside myself and later looking at the pictures and events as thought I am watching someone else’s story unfold, and wondering who was that—there—in that moment.
Who knows what has brought on such a weird series of thoughts this morning! I was going to do our personal taxes, but then I found out the online filing date with the government does not open until February 23, resulting in a “Now what do I do…maybe I will blog.”
Maybe it’s that I am turning 55-years old in 2 weeks and I am still trying to figure out “Who am I?”
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.
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.
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.
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 