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. 👍
Funny story, that “muscle guarding” of joints I mentioned here, yeah, it’s pretty hard to guard while sleeping. So Sunday morning, I woke up with my knee, (the one that can easily slip out of place, both knees can, but my left is the chronic offender), completely and painfully slipped out of place. This is not the first time (and I dare say not the last) that I have woken up from simply sleeping with an injury. Luckily, bracing it for a few days helps it heal, (sort of).
The interesting thing is how it feels to walk around with a brace on. It is such a contrast to how I usually feel, because my knee feels practically indestructible with this brace on. The same thing occurs when I have an issue with my wrist, and put my wrist brace on. As a kid, I was an expert at using tensor bandages of various sizes for all my “weak” spots, but now I have a cupboard full of various braces from my local drug store from which I can select. A few days of “resting” [insert offending body part here] with a brace on, the pain is mostly gone and I feel safe leaving it, once again, unprotected.
But the whole time with the brace on, my knee or wrist feels practically bionic! I just loved The Six Million Dollar Man (and The Bionic Woman) TV shows when I was a kid. I thought the whole concept of having ordinary human powers increased by the aid of bionic devices (real or fictional) was amazing! And yet, with a brace on, I feel like I am getting a taste of what it would truly be like to be bionic.
And then it hit me, maybe people without hEDS never feel so “weak” in the first place? Maybe what is normal for other people is to feel “bionic” (in comparison) all the time? Wow, what a thought.
It’s been normal to me for my whole life that I do not feel all that strong. I figured I was just one of “those” kids, the ones that play the piano and read a lot of books, the ones that just did not develop the strength that they could have. I felt different than the rest of the kids, but I did not think I was made differently. I just thought I hadn’t done the things I needed to do, like climb more trees, etc., to be like them. Even at a young age I knew that I could easily injure myself, simply because I had and did easily injure myself many times. I remember the first time I tried to play volleyball, one hit of the ball hurt so much! After all the fingers I had broken and sprained, (and no, it was NOT to get out of having to practice the piano), and maybe from watching The Bionic Woman, I came to gym class the next day armed with tensor bandages around each wrist, and wow, that made such a difference! Bionic!
I definitely look back at some of these childhood memories through a new lens. I am just put together a little looser than average, and that means yes, I can hurt myself in my sleep.
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. 🙂
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. 🙂
The Bio Joy Diet 