Highs and Lows of a Different Kind

After my post earlier, I felt so much better. It felt great to be…honest. “I feel what I feel, and yes, I feel sorry for myself,” she declared. Instead of a more acceptable, (because I feel peer pressure to constantly check myself, and invalidate my own feelings just in case when comparing myself to others, they have it worse than me), instead just saying, “I’m fine.”

I am not fine.

But I will be.

The 2 pictures above are from Halloween 2012 and Halloween 2025. A 13 year difference.

Three times in my life (before now) I saw the 130’s. Back in 1991, after I got married (not before, lol), I saw 132 and 136 pounds for about 2 weeks (then it was Christmastime, oops, that did not last).

I have dieted since a very young age, (grade 3=stepping on the bathroom scale at a friend’s house, and being happy I weighed one pound less than my friend, is my earliest memory of worrying about my weight). I am 5 foot 6 inches, (oops, thanks to osteoporosis in my spine, I am now only 5 foot 5 and a tiny bit inches), and throughout a lot of my life I have bounced between the 140’s, and the 170’s. There were a few times when I really got up there, the 190’s=in the years 1998, 2011, and 2023. And even twice I crested into the low 200’s=in the years 1999 and 2003.

Then it took 21 years before I ever saw that weight in the 130’s again, the first of the above pictures=Halloween 2012.

In 2012, I found out I was Celiac. And after struggling with my food for decades, not just to soothe emotions, but also to some degree self-medicating digestive upset and low iron, going gluten free was truly a game changer. It felt easy to lose weight, and I was a lot healthier not battling against maldigestion, malabsorption, and other things that an undiagnosed Celiac experiences when they don’t know they should NOT be eating wheat, barley, and rye.

(The feeling great did not last, because I did not know then I also have hEDS. I saw the 130’s briefly in 2016, but experienced some of the same struggles self-medicating digestive upset and low iron for years before going completely grain free in 2019, which has helped me a bit with that. But there is no such thing as a PERFECT diet for someone with hEDS).

Needless to say, I coveted this picture. When I regained some weight, I would pull this picture out and stare at it=OMG, was that really me?? Wow, how did I do that? How did I actually get to that weight, and in my forties, no less?? (Which was 138.8 pounds, knowing that exact weight proves how diet obsessed I am/have been). Can I EVER get there again? Stop stuffing your feelings with food, you silly woman!!

Yes, that is how I talked to myself.

Anyhow, battling some depression lately has sent my brain to thoughts along the lines of=You know what would make you feel better? A whole bowl of pudding. Or these Almond cookies you just saw on Facebook. I bet your stomach could handle those…

Or this…

Of course, my stomach could NOT handle a whole batch…which would probably be what I would eat if I made them. Because I am desperate to feel better, ug! And only a whole batch will truly stuff me to the point where my physical discomfort will be enough to distract me from my emotional discomfort.

Which leads me to the second picture. OMG, is that me?? Wow, how did I do that? How did I actually get to that weight, (122.3 pounds), and in my fifties, no less??

So…

I must never forget that stuffing my feelings with food is NEVER the answer.

Next time I am tempted to overeat to soothe my feelings, I will just come here and read this post.

P.S. Obviously when I am struggling, I want to blog more, lol.

Rollercoaster Ride of High and Low Emotions

—Robert Frost

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.

The only way out is through.

Serious Defects in the Manufacturing…

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.

Living and Loving Each Day

We just loved the 3 Valley Gap Halloween thing that I mentioned here, for the 3rd year last night (we missed just one year, in the last 4 years). It was awesome, and I even “sort of” dressed up for the first time since we started going, (definitely have decided to make it “our thing”). I had to wear my big heated gloves to protect my hands, now that I had this chronic pain situation going on with them, but it actually looked neat with the glowing red lights on them, (you can see the faint glow showing on them when they are turned on, the 2 small dots there with me standing in the dark).

My husband has been (is always) really great when it is important, getting me these heated gloves, for example, (they are a total game changer, for anyone dealing with Raynaud’s and neuropathy). He is helping me through this whole big change in my health journey this year, I could not do it without him. Shout out to bloggers who remind us, (even though we are all on a personal journey that we usually blog about), that we are not on these journeys alone, and those of us with a wonderful spouse (like I have) are blessed beyond measure.

The Journey Does Not Get Easier

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.

Turning the Corner

Hiking, October 11, 2025, Halfway Hotsprings, British Columbia.

Today, October 24, 2025 – 122.1 pounds.

We got a new couch yesterday, my first new couch in 18 years. And I have been purging items from my home that I don’t need anymore, to throw away or donate, in a 21 day challenge. I feel my house is so much more balanced, and as well, my body has come back into homeostasis after my disastrous Thanksgiving long weekend that I wrote about here.

I was reading an old journal entry of mine from November 26, 2017 (at 162.0 lbs.) that said, “I went from a low for that month (in 2017) of 152.4 lbs. on Apr.7, to 174.0 lbs. on May 1.”

I also said, “21.6 pounds gained in less than one month. Just crazy. I literally went from thin to fat overnight.”

I feel like I was close to going down a similar path just two weeks ago, for the first time in 2.5 years. I used to struggle just to go 2.5 months without that behaviour.

But I feel confident I have turned things around, after hitting stage 4 of the grief cycle, and now moving into stage 5. Our new couch, the 21 day challenge, it has all changed the feel of my external environment for the better. In the past, my external environment being chaotic eventually permeated my internal environment, creating chaos within myself. Not this time.

Motivation Needs a Good Tagline

I just realized, 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, that I wrote about here, could mean I have a problem with bone building, rather than with bone loss. In that case, a bisphosphonate will not be as effective for me, as it only stops bone loss. I am not a medical professional, but what feels deeply right for me, is I want to try this first. Then 8 months from now, I will get another Dexascan, and even if it is “not medically diagnostic,” the one I had done in June 2025 was pretty close to the bone density scan I had done at the hospital, so I will be able to compare apples to apples, Dexa to Dexa, for any improvements. If over the next 8 months I really try to see if I can build bone, (specific to my needs as someone with hEDS), then after my Dexa June 2026, if there are no changes, or a worsening problem, only then will I reconsider going on a prescription.

Getting Diagnosed with Life Changing Diagnoses (more than one) and the 5 Stages of Grief

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…

The Gravity of the Situation that No Diet Can Fix:

Mitral Valve Replacement—open heart surgery?

Despite an overall positive attitude, every once in a while it hits me: diet and exercise will not fix my heart. Slow progression, perhaps, but not fix it. Every out of the ordinary blip (weird increase without probable cause) in my heart rate makes me wonder, is this dysautonmia from having hEDS, or is this the left ventricle of my heart complaining about the back flow of blood?

Having dieted since a young age, I think I thought everything can be solved (to a certain degree) if you just ate right and exercised. But nope, like my blog post here said, my heart valve disease progression can only be managed, not solved.

It helps me to talk about this, and it fortifies my resolve to “not eat junk foods” and keep walking every day.

Because I do not have any answers yet, I just have to wait and see. Open heart surgery and a “simple” valve replacement may not be my best course, I do not know. (I jokingly say “simple,” because it is never simple, even when a person does NOT have hEDS).

I will not know until some time goes by, and I can have a repeat Echocardiogram, and see if my current level of grade 2 regurgitation is stable for now, or is it progressing. Specifically, a repeat Echocardiogram is needed to track if my left ventricle is further dilating. Currently, despite having moderate (borderline severe) regurgitation, I ONLY have “Mild left ventricular dilation but preserved function.” That is truly good news, and can be attributed to all the walking I do/have done. Next month I am about to hit 12,000 all time walked kms on RunKeeper (since 2012). Wow.

Therefore, I feel that my absolute only course moving forward is to truly never waver in resolve with my overall health and cardio vascular exercise (the best of which for me is walking) to keep my heart muscle from weakening further which eventually leads to congestive heart failure. A strong heart can withstand the black flow caused by regurgitation—maybe—for a very long time before stage 4 and congestive heart failure. Here is some general information that I do know:

Mitral Valve Replacement

Do porcine mitral valve replacements and mechanical value replacements fail sooner in patients with hypermobile Ehlers-Danlos syndrome that caused both sides of the mitral valve to prolapse in the first place?

In patients with hypermobile Ehlers-Danlos syndrome (hEDS), porcine (tissue) mitral valve replacements may fail sooner than in the general population. Mechanical valve replacements carry distinct risks in hEDS due to the connective tissue disorder, but there is less direct data on comparative failure rates. The primary issue is not the implanted valve itself but the ongoing fragility of the patient’s native heart tissue, which can lead to complications with either type of prosthesis.

Hypermobile EDS and tissue valve failure:

The risk of accelerated failure is higher with bioprosthetic valves (made from animal tissue) because the valve is attached to the patient’s existing mitral annulus, which has the same underlying defective connective tissue.

Annular tissue fragility: hEDS patients are known for tissue fragility. If the native mitral valve ring (annulus) is weak, the sutures holding the new bioprosthetic valve in place may tear out over time, causing a paravalvular leak and premature failure.
Recurrence of prolapse: Even with a repair, the remaining valve tissue can continue to deteriorate. Some case studies report the failure of mitral valve repair in EDS patients, requiring a subsequent replacement with a bioprosthetic valve. The continued breakdown of connective tissue in the heart is the root cause of these issues.

Hypermobile EDS and mechanical valve failure:

While mechanical valves are more durable and not subject to the same tissue breakdown, hEDS can increase the risk of other complications.

Tissue fragility during surgery: The main concern is the fragile nature of the heart’s native tissue during and after the initial surgery. The procedure itself can be more complex due to the risk of tearing or bleeding.
Increased bleeding risk: Mechanical valves require lifelong anticoagulation therapy with blood thinners like warfarin to prevent blood clots. hEDS patients often have a greater tendency for easy bruising and bleeding due to their connective tissue disorder, which can increase the risk associated with this therapy.

Repair vs. replacement in hEDS:

Because of the risks associated with implanting a foreign valve into fragile tissue, surgeons often face a difficult decision:

Valve repair is often preferred to replacement, especially in younger patients, to avoid the long-term issues of either a tissue or mechanical valve. However, due to the underlying defect, the repair may fail and require another surgery.
Replacement can be a more logical choice in cases of severe fragility, but as noted, it carries risks regardless of the type of replacement valve.

Why the difference?

The difference in failure risk comes down to how the valve is replaced:

Bioprosthetic valves (porcine): Their failure is linked to the degeneration of the animal tissue over time or issues with the native human tissue they are sewn into. In hEDS, the latter is a significant risk factor.
Mechanical valves: They do not structurally fail due to tissue degradation. Instead, the risk is tied to the lifelong blood thinner medication and surgical complications due to fragile vessels and tissue.

For hEDS patients with mitral valve disease, the decision to repair or replace the valve is highly individualized and requires a multidisciplinary team approach to weigh the risks of each option.

The Long Walk

Today happens to be the day Stephen King’s The Long Walk hits theaters, and being a storyteller myself, please allow me to elucidate on something, lol.

Even though The Long Walk is a Dystopian theme, (oh boy, and then some), with very little “hope” to come away with, there is an underlying theme, (oh my, so many underlying themes, this is just one). We are, all of us, on our own Long Walk. We never get to get off this Walk. Don’t fight it. Accept it. You never get to hit the finish line, and then stop—you keep going, no matter what, (until death, literally).

So, when you change your identity to someone who believes their body is amazing, precious, incredible, miraculous…you treat it well, (food, movement, fresh air), every single day, forever…

So, make this the best Walk ever. And keep showing up for it every day.