Today, I got a “2 for 1” special. First, I went for my stress test, which overall went very well. A few “premature ventricular contractions” at the start of the test, and then more PVCs again at the end, when I bent over to re-tie my shoes, (because I told them bending over is when I feel…out of breath…sometimes, so I bent over for a minute with all the leads still hooked up).
But otherwise, all the walking I do…has paid off. I have “above average for my age” exercise tolerance. I know it’s silly, but it was nice to get a “good grade.” I have identified that I rely far too much on external validation like feeling as though I have just “passed” a test, even a medical test, but overall, I still feel good to have got it done today, and to have confirmation that my consistency with regular cardio exercise—simply walking—has paid off in keeping my heart healthy enough to handle the extra stress of this valve issue.
And instead of having to go back for the 24-hour Holter monitor on Thursday, they saved me the drive, and hooked me up right after my stress test. It was truly lucky, as at first all 7 units the hospital had at hand this morning were all booked for people today. But then someone brought one back from their appointment yesterday, and they were able to rebook it out to me before I left. Woo hoo!
I am so glad all these tests will be done by noon tomorrow! I am also able to drop my unit off at the health lab in town (15 minutes from my house—small town), instead of driving it another further 25 minutes to the next town—larger town, where the hospital is. Also, there is a free public skating tomorrow too, so I can go skating, then drop off the monitor. Perfect! 😊
Ripley, Presley (in the pet stroller), and me. (Presley, being deaf since birth, has to be 100% an indoor cat for her safety. All her outside visits are strictly controlled and supervised).
Sometimes it feels as though true happiness is only fleeting, because it sort of is. Neuroscience has actually explored that certain events will lift us up, sometimes extremely high, (a graduation, a wedding, a vacation, your book hitting the New York Times Best Sellers List, an Olympic gold medal, whatever), but we all have a baseline we quite quickly go back down to.
In fact, in contrast to our recent burst of happiness, our baseline can now feel comparatively low.
Then we can understandably struggle with the fact that our burst of happiness felt so fleeting.
Understanding this mechanism helps me figure out why I do some of the things I do. When I am having a comparative “low” moment (which is most probably my baseline, it just doesn’t feel that way) following even a small high, (hey, I got a new couch, my first one in 18 years, I love it!), I struggle to make good decisions. It’s almost like I am angry that my happiness did not last very long. In fact, in those “low” moments, I don’t even trust that the happiness I felt was real…because it sure didn’t last long!
And then I want to medicate my lower emotions. Food, yes, some food will make me happy, won’t it?
But only fleetingly.
Then sometimes we truly feel lower than baseline for a valid reason.
I follow a blogger who has real health issues. Not that my own health issues are not real, but in terms of how the general public will scale things, my hEDS, mitral valve heart disease, and osteoporosis is most definitely trumped by cancer. He has CML, or chronic myeloid leukemia, which is “a type of cancer that affects the bone marrow, causing it to produce too many white blood cells. It is a slow-growing cancer, also known as chronic myelogenous leukemia, that can progress to a faster-growing acute leukemia if not treated.” And we can imagine cancer treatment for any type of cancer is beyond challenging on the human body. Maybe the treatment can be even worse than cancer, at times, at least until someone is on the other side of the treatment and is NED=no evidence of disease. But challenging health diagnoses aside, this blogger just lost his senior cat. And his post today had me just sobbing. In fact, a week ago, I could not even read his first post that announced the final goodbye to Clyde. When I saw the title of his post last week, I thought, oh god no, I just can’t. I wanted to “like” his post to support the blogger, but how do I communicate support without simply hitting the “like” button? Wordpress needs a “care” button, just like Facebook.
Anyhow, even though this blogger battles health issues that, in my opinion, exceed mine, (not that this is a competition), Clyde’s health conditions were even more challenging, in the end. I was just gutted by his story, but how loved was Clyde that his family never gave up on him.
And that reminds me not to give up on myself.
And I have to say this blogger, who self proclaims to not have been just the best English student in school, wrote this post today that spoke to the hardness of loss in a deeply meaningful way, but also written in such an eloquent way, that I could absorb the hardness while still seeing the incredible beauty of the unique life that was first lived.
(And although this is just my opinion of his words written, I know something of what I speak, you know, me having a Master of Fine Arts degree in Creative Writing, and all, just sayin’).
Thank you to all the storytellers out there (aka bloggers) who adrift in the sea of YouTube, Instagram, and TikTok reels and shorts, still feel called to put down words on the page. And deeply touch and inspire their fellow man.
Well, as if the Raynaud’s was not bad enough, this week I have been on a roller coaster ride with what Chat GTP calls Refractory Constipation.
“Refractory constipation is a severe form of constipation that does not improve with standard treatments like high-fiber diets, laxatives, and behavioral therapies. It is defined by the persistent and inadequate response to adequate therapy, which may be up to 4 weeks for each medication or 3 months for behavioral interventions. Management of refractory constipation may require a more intensive and specialized approach.”
Why your constipation is so refractory (hEDS-specific reasons):
People with hEDS often struggle with constipation not because of low fibre or hydration, but because of:
1. Dysmotility from connective-tissue laxity
• The bowel is physically more floppy and less propulsive.
• Transit time slows, so fibre can solidify rather than help—especially insoluble fibre.”
Well crap! (No pun intended).
Even though that all sounds really dramatic, to tell the truth, it truly sounds like a fit to what I am experiencing.
So, an hEDS related problem needs an hEDS tailored solution, which I am working on, (short answer includes regular but therapeutic-dose amounts of magnesium oxide). Although being really slow in that department is nothing new to me, it has been far worse this week.
And today is the second anniversary of my dad’s passing that I wrote about here. I should have gone skating. Instead, I spent most of the day having a lot more “what’s the flipping point?” thoughts. Add in gas build up when exercising, and it feels like my body is really turning on me! I used that as an excuse to avoid doing much in the moving my body department today.
Then we had a wonderful Sunday night roast beef dinner, and I ate a lot, without weighing my portions. My “who cares” thoughts fueled this. Then I ate a healthy dessert, (strawberries), but I really didn’t need any more food, because I was already starting to feel stuffed! Then the thoughts of, “If you are already going to feel like crap, might as well drink a big glass of that egg nog in the fridge that you have been resisting.” Good news, I managed to come here and blog instead of drinking the nog.
Hopefully I am not writhing in agony in bed later for over stuffing myself (thank goodness cooler heads prevailed before I drank that egg nog!) because I am still dealing with my “food is going in and who the heck knows when it will finally make its way out” problem. It will probably take weeks or longer to sort myself out with the new and evidence-based for hEDS advice I will be implementing. Sigh.
Sorry for all the bathroom talk. Now that I think about it, diet blogs do not usually mention the price some of us pay in the bathroom (hEDS or not) when we are NOT eating “perfectly” on our meal plan. But maybe they should. 🙂
“The next time you find yourself blaming or shaming someone, because they deserve it for how they wronged you, take a pause and a breath and ask yourself: What is it in me that needs attention here? Shift your energy. Take responsibility for your own life and embody the energy that you want to attract.”
Lately, I have been stuck in a rut of cycling into feeling sorry for myself for every time I have ever felt gaslit about my health, by doctors, and yes, even at times by my spouse. But truthfully? I was my own worst critic. I felt unheard and abandoned by myself. In fact, I experienced a lot of self-loathing, because feeling unwell usually resulted in bad food choices that made my feelings/symptoms worse. Those times my body was sending me a message saying hey, something does not feel right, I ended up feeling (rightly or not) that the narrative was: it’s all in your head, just stuff it down, and I regularly told myself exactly that. Instead of believing the signals coming from my body, instead I asked myself: what are you getting from “not feeling right?” What are you getting to avoid? Something feels “off” because you must WANT something to feel “off,” so then you won’t have to show up for your life in some way. Just stop it.
Ultimately, I was really hard on myself, and I have been grieving, in a way, that I treated myself like that.
I feel very bad for my former self that I put down and punished for “misbehaving.” I wouldn’t EVER treat anyone else that badly. Yet I blamed and shamed myself.
But now that I am no longer gaslighting myself, I need to ask: What is it in me that needs attention here?
I cannot change the past, but I can change my future. I need to quit dancing on the edge of that cliff. I need to take care of myself. I need to treat myself with kindness. I need to love myself (my body) just like I would my best friend.
Moving through stage 4 into stage 5 of the 5 stages of grief is not an “all at once” event. I am experiencing it as a roller coaster ride of one day in depression, with the next day lifting somewhat back up out of those depths, but then it only takes one thing to plunge me right back down.
I am getting sea sick just typing that out, because it so viscerally reminds me I am currently living those exact whiplash ups and downs.
Unfortunately, I am also experiencing a certain feeling that I am NOT supposed to feel depressed at all. I should feel lucky…because other people have it worse.
I am just going to put it out there: thoughts of other people having it worse has NEVER made me feel any better about whatever I am dealing with. If I was lucky enough to be pain free yesterday, but I am experiencing pain today, how does thinking about someone else’s pain help me deal with my pain today?
Yes, yes, I get the logic behind that thinking. You ask yourself, how bad is your pain? And you answer that by asking yourself how bad does it compare to other times in your life, and/or how does it compare to someone else who has it worse off than you? Then maybe you feel better because the pain is not as bad as another time in your life, and/or it is not as bad as someone you know who is really, really, having the worst time in life, that you can imagine. And you count yourself lucky, and write out a gratitude list, and you do feel grateful.
But then…you are still left dealing with your current pain, because no matter what, you hurt.
And if you used to soothe your pain with food, (as I used to do), and you don’t do that anymore, then you are just left with…feeling the pain.
For me, I felt pain after I tweaked my knee Saturday, and it brought my whole mood down because…I felt pain.
Maybe it was not a lot of pain.
Maybe it was not even close to as bad as someone else’s pain.
But I kept feeling it, it bothered me, it stole the peace I had been feeling before I encountered it. If I say I “let it” bring my whole mood down, am I self-blaming? Am I weak because I couldn’t “shake it off” and push it aside with thoughts of how bad other people are suffering instead?
I know in the past being told, “well at least you don’t have it as bad as so and so,” has never made me feel better about whatever it is/was that I am dealing with. Instead, statements like that have left me feeling unheard, and even negated, as though I have no right to feel any pain at all if it does not rise to the level of being “the worst it could be.”
I know this blog post comes across as me doing some complaining, oh woe is me, but this space is where I do feel heard, even if it is just being heard by me, myself, and I. I am in pain, and I feel depressed, and the only way out (for me) is through. So, no, thoughts of other people’s pain, or a gratitude list (which I do have, and it’s long, and I am grateful), will make me feel better right now. I just have to feel what I feel.
I feel a bit better today, but I had slid into a serious mood slump yesterday. I am still having trouble getting over this last diagnosis of osteoporosis.
I have been a person who likes to measure and compare things. Like Lisa Simpson in “The Simpsons,” I always wanted (still want) to be graded on things. Of course, I always want to get a good grade…
The bones in my lumbar spine just got a really bad grade -3.3.
Even with my heart valve disease, I found out I am ONLY grade 2 out of grade 4 regurgitation, caused by both the anterior and posterior leaflets of my mitral valve having been torn by my underlying connective tissue disorder, hEDS. Really, there is no need to worry until it gets to grade 4, right? 2 is a good grade compared to 4, right? I type that a little sarcastically, because my doctor was practically (and annoyingly) blythe about that diagnosis. For me, finding all that out was one helluva shock, because I had no clue I had any problems with my heart at all! (Prior to that, my shortness of breath symptom had been just attributed to how I breathe, with a lung function test that showed I was fine). I thought at only 54 years old, finally with a stellar BMI, that I was healthy! I mean, other than my sore hands, numb finger tips, sore knees and ankles, and…well…I definitely did NOT think I had a heart condition!
I digress.
Even though I suspected something, (that Chat GTP had pointed out, based on lower than average upper body bone density numbers contrasted to my very good lower body numbers—I walk a lot), I thought maybe I was headed towards osteoporosis, that maybe I had osteopenia (defined as a t-score of -1 to -2.5). I honestly never thought I would have already blown past those numbers all the way down to -3.3.
I know I am hyper fixated on this number. It is just a number, afterall. It means nothing, and I am the same person I was last month before I knew “the number.”
It just means I am a person with some serious defects in the manufacturing…and that is okay.
Someone said something brilliant the other day: The journey does not get easier, you just get stronger.
I have been blogging a little more lately, especially with my recent health diagnoses of hEDS, (which causes pain in my hands, joints, and which has been impairing my digestive tract for years), mitral valve heart disease, (which, quite frankly, could someday be life limiting), and osteoporosis, (t-score of -3.3). Did I mention I also have MCAS? Here is a set of pictures, (day 2, then day 3), of an allergic reaction I had to an insect bite, which is typically an “over” reaction for me, due to mast cell activation.
Yikes! Written all down like that, I sound worse off at 54 years old, than my 80-year-old mother who is a breast cancer survivor!
Anyhow, I love blogging. I love getting my words out of my head. I love sharing my experiences.
What I do not like is “stuffing” myself down.
I grew up in a household where it was easier to stuff myself down, make myself “small” because I was “too much.” And food was an easily accessible tool, compounding by 80’s diet culture that was practiced in my home telling me that as a girl I should not eat any extras, but my brother could eat whatever he wanted because he was a boy, and naturally skinny on top of it all.
And even though I grew up and moved away from home, the turning to food to stuff-myself-or-my-feelings-down habit stuck. The habit of stuffing down discomfort instead of feeling it.
Blogging is the opposite of stuffing it down. I feel heard, even when it’s only myself that reads these words. I am actually a bit shy in real life, so it almost seems counterintuitive to find such immense comfort in putting my words, any of my words on a variety of subjects, out into the public space. It’s not exactly about connection, although some connection with others has been a very happy byproduct. It’s mostly about talking to myself, outside of my own head, and feeling heard in ways I did not consistently (if ever, but I am willing to allow that my memories are not perfect in this regard) feel that I was heard growing up in the household dynamics in which I was raised.
Here’s to another weekend of NOT stuffing it down. I am fortifying myself with this blog entry to have a far better weekend than 2 weeks ago. We are going to a Halloween experience tonight, and I may even wear a make-shift costume (and then post a picture) if I don’t get too shy to actually do it.
I had a rough few days, (Friday through Monday, Canadian thanksgiving long weekend), for the first time in a long time. I think knowing I have some health issues that cannot be solved through healthy lifestyle choices, all of a sudden made it seem like…what’s the *#$!% point? BUT nothing is better, not our physical health, certainly not our mental health, and not how we show up in the world for our families, none of it is better when we treat our bodies like a trash can.
I even avoided the scale, and for me, that is the first time I have done that in over 2 years. Yikes, who am I? I am NOT someone who behaves like that.
I think I have been going through the 5 stages of grief post hEDS diagnosis that I wrote about here, and heart valve disease, more about that here.
1)Denial
I was definitely in denial while on vacation in August to visit family. I got the diagnosis the day I flew out, so it just had not sunk in yet. At one point on my vacation, my brother ended up yelling at me, “Accept your new reality!” because I was about to hang off some monkey bars and risk dislocating my shoulder, (which has never been the same since dislocating it that I wrote about here. Sure, the accident caused the dislocation, but my hEDS means it would/could easily slip out again. Even the emergency room doctor warned me about it re-dislocating easily, after he reduced it, dislocated it again simply checking its position, and then quickly had to reduced it a second time, while asking me in a very surprised tone if was double jointed).
2)Anger
Then I was mad…stupid doctors…sending me for a lung function test, never checking my heart…telling me it’s all in my head…sending me for more than one abdominal ultrasound when I complained about my slow digestion causing my stomach to swell like I had an alien about to burst out of it…then saying “nothing looks wrong…” grumble, snarl…
3)Bargaining
September involved a lot of bargaining…I will walk this many kilometres, I will do these hikes, I will do 3 walks of 14K each, and all together they add up to a marathon…I will make incredible healthy soups with a perfect balance of macros and eat nothing else…
4)Depression
Then I started having moments…where it felt like depression was just waiting in the wings, just a little out of sight…but I could see it casting a shadow…and then when I got a call from the doctor’s office asking for an appointment to discuss the results of my bone density scan, (the one I had recently that IS medically diagnostic), it hit me. They want to talk to me about something of concern. AND it would be about something diet and exercise won’t fix. (At least not alone could diet and exercise fix it, especially if it has been caused by complications related to my having hEDS, I may need a proper prescription drug to help).
So, it’s official, I have osteoporosis, and yes, my doctor strongly recommends I take a prescription to help.
I had the appointment yesterday, and they told me, the -3.3 T-score on my spine means I do have full blown osteoporosis. And my stated Fracture Risk, the FRAX, can underestimate risk in conditions like hypermobility or connective tissue disorders as these can increase fragility and falls risk.
The fact of my hip density being higher than spine is common in connective tissue–related osteoporosis, where trabecular (spine) bone is more affected than cortical (hip) bone.
Prior to now, I got to say “No, none at all,” when someone asked, “Do you take any prescriptions?” Now my doctor says I need a prescription drug to help with my bone loss because of my fracture risk. That feels like a change in my identity, from someone who does not take any prescriptions to someone who now says, yes, I take a prescription bisphosphonate for my osteoporosis. And I know that it does not have to DEFINE my identity. But it’s a big change. A change I really do not want to make, simple as that. I have not yet got my head around it.
Especially not at the ripe old age of 54-years old?? No, this is not an identity change I want to make. I am back in stage 1)Denial.
It’s just been a lot. Hypermobile Ehlers-Danlos Syndrome, heart valve disease, now osteoporosis? Finding out I was Celiac was easy compared to all this. At least it felt it was easy, as though I could “solve” it by just figuring out how to eat “perfectly.” (Which turned out impossible, because there is no such thing as perfect, but I could at least delude myself back then).
I am not sure why, but a prescription for a Bisphosphonate, which “strengthen bones by binding to them and slowing the breakdown caused by bone-eroding cells (osteoclasts). This allows bone-building cells (osteoblasts) to more effectively rebuild bone tissue, reducing bone loss,” does not feel like I am “solving” anything. I am under no delusions this time, I suppose.
3 months ago, my identity was “I am healthy”:
Sure, I have digestive issues, but it is because I have just not yet found the absolute “perfect” combination of “perfect” foods for my body, right?
Sure, my hands hurt from Raynaud’s and neuropathy, but surely if we just knew the root cause, it’s probably something I am eating, (should I give up eggs maybe??), so we can “fix” it.
Sure, I have the occasional shortness of breath, but if I just did not get so “worked up” with silly worrying, I would stop feeling “anxious.”
But now my identity is…there are some major defects in the manufacturing…
I must at least try to maintain my current vitality, and NOT succumb to thinking there is nothing I can do, including focusing on diet and exercise for bone density building. But ug, I feel exhausted with thinking about it all for the last 2 months. So, here is it, Kübler-Ross’s stage 4 depression, rearing its ugly head…
Lots has happened since my Dexa scan in June that I wrote about here.
One thing I noticed on the scan was my hands. Even though I had walked over 2 kms to the health center for the scan, on a warm June morning for my 11:00am appointment, (which certainly should have got my blood flowing nicely), my hands showed completely purple on the scan, which is an indicator of lack of blood flow. Even though it is somewhat normal for blood flow to be less in hands and feet, in my scan my hands showed a marked difference than that of my feet.
I felt this “proved” (at least in my mind) the pain I had been feeling in my hands since wintertime, which had not gotten any better now that it was summertime. I called my doctor and started a series of appointments and tests.
On August 14, 2025, at 54 years old, I was finally diagnosed for the first time with hypermobile Ehlers-Danlos Syndrome (hEDS). Additionally, I drew the “Could come with a heart valve problem” card: I have grade 2 (out of 4) mitral valve regurgitation.
Story:
I have had 10 years of complaints to doctors, including dizziness, (had my ears and hearing checked to no avail), Achilles tendon issues, painful crepitus in my knees, an inguinal hernia seemingly out of nowhere, slow gastric emptying and digestion problems, excessive allergy reactions that felt like over-reactions or immune reactions, just to name a few of my various complaints, which ultimately led nowhere when discussed with various doctors.
Not to blame the doctors, different ones tried to help at different intervals, but my issues were all over the map, with some rising to an acute level, (which would then prompt me to go to the doctor each time).
If there is difficulty connecting the issues, think “connective tissues…”
My most significant symptom was by January of 2020. I would feel shortness of breath if I suddenly had to jog across a crosswalk, despite walking daily and otherwise being reasonably physically fit. And I would feel winded when carrying something heavy, like a bag of dog food from the store to my vehicle. I felt like I could not take as deep a breath as I used to. The doctor never listened to my heart, he just ordered a lung function test, the results of which were that my lungs were fine, and that was the end of it. 10 years of complaining…only to be told over and over how great I look, and nothing could be wrong…that I probably just had anxiety…
Spoiler alert, it was not just anxiety.
To finally get some answers, it took severe attacks of Raynaud’s phenomenon in my hands, (since 2024 continuing to present, resulting in painful neuropathy, which has also now started in my feet), which led to finally having an echocardiogram ordered, the results from which I found out I have heart valve disease.
When I saw my mitral valve on the ultrasound…both sides looked like tattered drapes…it’s an image that is kinda burned in my mind. 3 days later I was told what the “tatters” indicated: “A torn chordae tendineae of the mitral valve results in mitral regurgitation (MR) when the damaged fibrous cords can no longer properly support the valve leaflets, causing blood to leak backward into the left atrium during the heart’s contraction.”
But why did I develop heart valve disease?
Diagnosis:
Ehlers-Danlos syndrome, hypermobility type (hEDS), which is a connective tissue disorder. This has led to progressive heart valve disease, specifically grade 2 mitral valve regurgitation complicated by the fact that both sides of my mitral valve are involved in the leak (bi-leaflet).
“Ehlers-Danlos syndrome can cause dysautonomia, specifically autonomic nervous system dysfunction affecting blood pressure, blood flow, and body regulation, including dizziness, lightheadedness, temperature and sweating dysregulation, and issues with the gastrointestinal (digestive) system, such as delayed gastric emptying, bloating, cramping, or constipation.”
These are all symptoms I have, but the doctors told me it was anxiety, wanted to give me anxiety meds, but I said no thanks. Other than taking daily Gravol for dizziness, and more recently Tylenol 1’s with codeine for the pain in my hands, I do not take any prescriptions at all. I am being referred to an ophthalmologist to establish a base line for my eyes. Ehlers-Danlos can negatively affect the eyes, more so than regular aging. I am also waiting to see a cardiologist.
Currently, my rate of heart valve disease progression is unknown, as this is my first diagnosis via echocardiogram, and I do not have any previous echo for comparison.
“Your measurements fit with Grade 2 / moderate mitral regurgitation by standard echo criteria.
You have:
• Bi-leaflet prolapse
• Eccentric jet
• Vena Contrata (VC) and PISA at upper-moderate range
(Based on an echocardiogram, having a Vena Contracta (VC) and PISA at the “upper-moderate” range means you have significant, or severe, valvular regurgitation = leakage).
• No left atrial enlargement yet
• Mild left ventricular dilation but preserved function”
I plan on living a long time with this heart valve disease. Best guess I was stage 1 about 5 years ago when I first noticed symptoms (and sadly still felt somewhat gaslighted by the doctor, even though he sent me for the lung function test, ug). That means I could have 10 years before stage 4. Unfortunately, when both leaflets prolapse like mine have, it’s called bi-leaflet mitral valve prolapse.
“This pattern is less common than isolated posterior leaflet prolapse.
—Significance: Severity risk – Bi-leaflet prolapse can sometimes be associated with a higher likelihood of progressing MR over time, because both sides of the valve are involved in the leak.
—Surgical repair: In cases that become severe and need surgery, repair is still possible in experienced hands but can be a bit more complex than isolated leaflet repair.”
Frankly, I cannot see me ever having open heart surgery to try and repair the valve, even if it gets to stage 4. Because of the Ehlers-Danlos, I think (I have not yet talked with a cardiologist) that it would be like sewing cardboard to tissue paper. Instead, I am just going to continue to live my best life each day, love on my husband and our home and our pets, and work to keep my heart muscle as strong as possible, so it can handle the pressure of the back flow of blood (thanks to my shredded heart valve) for as long as possible before causing other problems. Despite how bad it sounds, I am otherwise in excellent health (which is why it was a huge surprise for my doctor, after the echocardiogram). This is proof you need to be your own advocate. If you think something is wrong, even when you “look” fine, do what you need to do to keep following up.
hEDS is a spectrum, so not all cases will look alike. Of the 13 (or is it 14) types of Ehlers-Danlos the hypermobility type is only one without a genetic test to confirm. In fact, because I am 54-years old and post-menopausal, I cannot demonstrate the hypermobility I have had historically. Right up until the last minute, during my July 2025 rheumatologist appointment, he was almost going to send me on my way with another “It’s all in your head” attitude, then he finally listened to my heart. Not everyone with hEDS will have mitral valve prolapse, let alone progress to full-on mitral valve regurgitation, but when he heard what he called a “significant murmur,” that was when he finally looked at me as though there really could be something wrong.
Unfortunately, it took drawing the heart valve card of hEDS to get noticed.
I am glad to finally be believed: “Oh, maybe your hands do hurt more than average.” But I will admit, I am a bit saddened to find out I have heart valve disease that cannot be solved, or cured, only managed, for the rest of my life.
So, I move forward with the determination to double down on my health journey. I have upcoming appointments with an ophthalmologist, a cardiologist (when I get through the wait-list), then a bone scan done at a hospital (because “a Dexa scan is not medically diagnostic” according to my doctor, lol). And I am glad I do not have to play catch up on my health, having made changes for the better more than 2 years ago. Instead, I can just keep doing what I am doing, and work to improve my body composition with less body fat, more muscle. I will manage this diagnosis just fine. I am only just starting to learn about hEDS, and mitral valve regurgitation, but building lean muscle and overall strength will truly serve me. Sitting back and not moving daily will decondition me faster than average. I will continue to prioritize daily walks and healthy eating.
The Bio Joy Diet 