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.  

When Things Cannot be Solved Only Managed

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.

8 Years, 25 Pounds, Same Shirt

Hawaii, February, 2017

At home today, June, 2025

I have always been a pear shape (until I finally got down to my current weight, 121 pounds).  So much so, that every 5 pounds gained or lost, was a whole (yes, a whole) inch difference on my hips.  The 25 pounds difference in these pictures was a 5 inch difference on my hips, (40 inches down to today, 35 inches).  And yet, I could wear the same shirt, and even see a hint of yes, a rib bone.

The reason I point this out is to remind myself, (honestly not trying to brag=hey look at me), that little slips off my food plan, (when it comes to overeating on, for example, a long weekend, to “celebrate”), means I could easily gain 5 pounds in just a few days, and my shorts inevitably (and seemingly overnight) would get uncomfortably tight.

Additionally, I recently had my first Dexa scan, and (as if I needed any proof) my body fat percentage was only 18.7% on my trunk, but 35.3% on my butt and legs! (Add in my arms, and my total body fat percentage as an average was 25.7%).  Wow, what a huge difference!

Moving forward, I am working on changing my body composition for the better!  I need more lean muscle mass, which can help my bone density, which is also VERY different (out of balance, proportion) between my trunk and legs (and not in a good way, at all).

Here’s to building strength, (still working out my new routines), and I will be getting another Dexa scan one year from now.  

Old Lady Butt

My self-talk is far more loving these days.  I accept my “shrinkles” from my weight loss of more than 70 pounds (from 2023 to the end of 2024), and technically I am 90 pounds down if you count my absolute highest weight ever (2003).

But I have experienced a certain degree of body shaming, including at a young age.  Some of it was not malicious, it was merely observation, (when puberty hit and I developed “saddle bags”).  But when you are 12 years old, observation can sound like criticism.

And back in November, someone’s observation, in connection with those infamous “saddle bags” of mine, and the shape of my legs now, post-weight loss, was “that’s because you have an old lady butt.”

In the past, this would have bothered me.  Now, I embrace my butt, my shape, everything leg about my legs, because they are incredible.  My legs (thighs and butt included) carry me on hikes up hills.  They carry me while walking a 15K back in March.  They peddled my electric assist bicycle on a nearly 50K bike ride just one week ago.  TMI alert, they allowed me to easily squat in the bush for a pee (twice).

Go me, and my 54-year old lady butt!

Relief Seeking Behavior

Well, I survived last night cravings, despite getting flirtatious with a couple spoonful’s of peanut butter…

Maybe it was not emotional pain specifically last night, (I do NOT stuff down my emotions with food anymore), maybe it was my chronic physical pain that was pushing me into relief seeking behavior.  I am currently dealing with daily arthritis (maybe it’s arthritis, I really don’t know what it is…) pain in my hands that I haven’t had to deal with before.  (At least, I have not had pain that is daily like this is since going grain free).

I am better off petting my pets than grabbing a spoon, lol.

Consistency Does Not Get Easier

Not sure where I will wear this outfit, but it was a gift, so I had to try it on.


I had a productive few days after getting home from holidays, but then tonight, I feel depressed, I am craving sugar, I am craving my old overeating behavior.

It’s like a constant fight against myself, against my old habits, the ways I used to soothe my emotions.  I may have changed my identity into someone who does NOT behave that way anymore.  But it is like old identity did not die, she is still there inside me, as though she is just biding her time for when I let her out…

Finding a New Way to Cope with Stress

These are my skinny jeans.

You know, part of me feels like these posts about “Look at me, I am in Maintenance!” come across as a little braggy, but I am just reminding myself lately that I do not want to go back up the scale to the old me. Yes, I have changed my identity that I spoke about here.

But…

I have been thinking (obsessing?) lately about the feelings I used to have when I simply would eat food for fun, for indulgence, the way I still see other people eating food. For example, go to a movie theatre. I will see people sitting all around me just eating—for the pure pleasure of eating. I mean, come on. No one is sitting there in a movie theatre eating, for example, a mixed vegetable dish as a meal to nourish their bodies. They are eating food (popcorn and candy, etc.) for fun. Absolutely, I used to do that too. And this week and last week in particular, I have been missing how it felt to escape into something (anything) to eat for the pure oblivion of a few moments of time while just eating. Because for those few moments of time, real life (with its real stresses) just disappears. Oh, real life comes rushing back in as soon as the food is done, and I must NEVER forget that, but for that little bit of time…

So, the “desire to overeat thoughts” have been hanging around again lately. They have been popping in and out of my head for almost 3 weeks now. This is why I did my last post here about feeling so comfortable in the body I have right this minute, so I don’t give it up. I was trying to remind myself why I say no every day to eating (overeating) foods I did not plan.

It seems that lately, when the same old life stresses (that come and go for everyone, I am not unique) are particularly intense, I notice that it feels the very same as in my past when similar stresses were also very intense, and I would overeat my way through the ebb and flow. It was at first an escape. Then, the misery of regaining weight was a distraction. It’s this old familiar pattern of response. Today, I must respond differently.

So, I’ve got to be willing to be someone for whom the food and the weight loss is solved, (now, in the present tense). Period. No more past patterns of behavior.  Even when it seems hard to have given up that old version of myself, I am instead embracing that I am the new 2.0 version of myself. I remember the old version. I have even given her a big hug.

But now I step back and hold the old me at arms length. I am not her anymore. I don’t stuff down my feelings with food. I do not replace those feelings instead with feelings of misery about regaining weight. I used to know all about how to feel about regaining weight, I was comfortable with that negative place. In that old place, instead of hugging the old me, I’d be slapping her around and hurting her even worse than it felt that real life was hurting me at the time. I was an expert at that behavior.

So, maybe I am not exactly an expert at dealing with my emotions as this new version of myself (which is why suddenly the old me is standing just off stage. I can see her out of the corner of my eye). But what an unproductive and self-destructive state of existing it would be to go backwards at this point. And I do not want to simply exist like that (in emotional pain and trying to stuff it down with food) anymore.

I am the new me, and I am living my life feeling what I need to feel, instead of stuffing it down.