I am Sensitive, Too Sensitive

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.

Progress Not Perfection

Years ago, (I feel like I was naive back then, maybe I still am, lol), I really tried to examine what would be the first steps on the path to regain. I felt like there was a range of pounds regained on the scale that specifically—yes—that would define that path.

Seems pretty obvious to me now, but numbers on the scale are just the result of walking down a path of my behaviors, focusing on the numbers without addressing the behaviors that caused the numbers.

For me, I realize it is truly not a new higher number on the scale, it is the behaviors that precedes that new number. In fact, certain behaviors and choices (to overeat emotionally) and then NOT seeing the scale go up to a new number (at least, temporarily, or after just one time off plan) used to lead me to think I somehow “got away with it,” (the overeating behavior, that is).

For me, I believe that to achieve long term maintenance, I must NOT allow the behaviors. Period.

What is going to work for me long term is planning what I eat, and eating what I plan, no random unplanned food to stuff down my discomfort. Simple. I can plan dessert. I can plan larger holiday meals. I just CANNOT randomly (without a plan) overeat dessert-type foods to stuff my emotions.

And for me personally, I do not think there is any amount of regained weight that is acceptable for me, IF that weight gain is caused by a return to old behaviors in overeating, especially based in the desire to stuff down discomfort (emotional, or even physical). And especially allowing the old behaviors on a regular basis, and then restricting to lose regained weight.

Thankfully, this post is not about regained weight. I currently weigh 122.8 pounds. But January was a rocky month, compounded by a multi-week-long attack of intense immune memory-driven recall dermatitis (external part of the reaction), followed by days of worse than usual digestive problems (internal part of the reaction). Apparently “recall dermatitis is notorious for being slow to fully resolve once it’s activated,” and I have been living that reality. (Sunday, February 1, I still woke up with one itchy pink circle that needed medication. Two other spots were itchy also, but invisible to the eye, not pink). I still feel a tingling “itch” in those spots, as we speak.

My body is unpredictable. Therefore, that can affect the stability of my weight, which is fine just as long as it’s NOT because I made unplanned food choices.

I saw problematic behavioral choices before the systemic immune attack that I do not want to continue, but thankfully, I did not succumb to during. That was a pattern I had of soothing in the past, not just the soothing of emotional discomfort, but sometimes of physical discomfort. Seeking relief. But those behaviors, overeating and/or restricting afterwards, they do NOT/will NOT serve me in a positive way.

I have a habit of assigning meaning to random dates, (meaningless to anyone but me). It can be a bad habit, because healthy routines should not need “special” reminder dates, or special restart dates. Today, right now, is the only date I need to pay attention to.

My heathy routines should just be my daily normal. And they are. Until they aren’t.

Today, I find myself looking back at the past (and past dates) because in the present moment, I find myself concerned. Could I end up returning to my past food behaviors? I definitely thought about it when I struggled with the discomfort of the immune/allergy reaction. I am aware that I carry my past wherever I go. I have discussions with my past. I know that does not sound good. I can (and should) let my past go, and I definitely do NOT want to use my past as an excuse for something I choose to do today. And my future is not yet written, so I can simply choose to live in the moment, and surround all my moments with good choices.

On the other hand, he who forgets the past is doomed to repeat it. That is good advice too.

January 12, 1999: That was a really big date in my past, the anniversary of which was a few weeks ago. It was the first time I ever saw 200 pounds, (204, to be exact), on the scale. After that, I lost quite a bit of weight in 1999.

Then, after making a big geographical move and regaining weight, I also saw 207.5 and 204 pounds, in the years 2003 and 2004.

I have never seen weights as high as those ever since. The closest I have come, I saw 193.5 and 192.9 pounds. The first of those 2 weights was in 2011, and after that weight, in 2012, I went gluten free and lost quite a bit of weight. I saw the second of those 2 weights in 2023, again after another big geographical move, before my recent consistency and determination brought me to where I am today. I have not seen 200 pounds or over on the scale in the more than two decades since 2004. But I spent decades of my life losing and then regaining significant amounts of weight, getting close to some of those 5 high weights I listed. What a waste of my time, losing to only regain, (totaling over 500 pounds! that I wrote about here), over and over again.

Very recently, 5 other dates have been really significant:

1)Dec.21/25

2)Dec.25/25

3)Dec.31/25

4)Jan.5/26

5)Jan.11/26

On all 5 of those days I overate excess food that I did not plan to eat.

I did not have the recall dermatitis attack until January 20, but maybe I had started something smoldering ahead of time with less than perfect food choices, and/or those 5 different days (that I succumbed to old soothing food behaviors) was because the immune attack was already percolating (and depleting my willpower) ever since wearing the adhesive pads for 24 hours on December 9th to 10th. I will never know for sure.

I personally know people that are right now, in these first weeks of 2026, working hard to reclaim their health. And yet on these 5 different dates, my behavior was the opposite, (whether or not I had a possible excuse physically—something effecting my immune system—does not matter, because there will be always be available excuses to “give in” and eat “whatever,” and I canNOT let “I feel bad” emotionally or physically to be one of them). Those dates are representative of me essentially throwing my health away, certainly not holding on to it. The health I have now is health that I have worked my whole life to achieve, (unpredictable reactions aside). I am at a healthy body weight, with the ability to go for walks, go skating, and play on the floor with my grandson. My current health is the culmination of me about to turn 55 year old, having worked consistently to make good choices for the last 2.5 years. Yet, the choices I made on each of these 5 dates…Where am I going to be if I return to that behavior??

What is the number 1 thing on this list of “5 Pillars”? = Health.

1)Health

2)Financial security

3)Routine/peaceful life to calm your nervous system

4)A few true friends

5)Emotional resilience to weather storms and keep moving forward, set boundaries and say yes only to things that support you

After I copied this list, I spent the last few weeks leaning into all 5 of these:

1)I went back to my routine healthy food and exercise choices

2)I worked on our year-end financials, to get/keep our financial ducks in a row

3)I leaned into planning and scheduling my daily routine

4)I went skating and enjoyed the company of other people

5)I proved to myself that I am resilient enough to weather a recent storm

This is a much better list of 5, than my list of those 5 dates of bad choices.

I did have a thought. 2.5 years of discipline and consistency, where I do NOT overeat. There were a few times I did have a little more food than I planned, I am not perfect, but those were an isolated incidents, where I was back the very next day to eating what I planned, (without rapidly following reoccurrences). Then I started HRT on December 15, and after that, I have 5 different days over the course of 3 weeks where I choose to overeat, just like I used to, and I struggled to stop?? Is this a physical response to the HRT? Or am I just comforting something emotional in a way that I have not indulged in for over 2.5 years?? No, I don’t think it was the HRT. More likely it was a depletion of my resources (that I did not know was happening, except I did mention extra fatigue here) that could have been a factor, while my immune system went into overdrive.

It feels like I have turned a corner, and I am still taking HRT. And because no date on the calendar will ever compare in meaning to waking up today, at 122.8 pounds, I am once again feeling resilient. I have made it through my recent “storm” of old behavior, and “storm” of immune reactions, to the other side, where thoughts about turning to excess food as a comfort have gone quiet.

This is not perfection, but progress.

P.S. Something that just tickled my slightly neurodivergent love of patterns, is that despite this being 2026, I think this is my year of 5’s. I just made a list of 5 years where I struggled at my highest weights. I just made a list of 5 dates where I struggled with unplanned overeating. I just made a list of the 5 pillars of health, and I am posting this on the 5th. And I am 5 foot 5.5 inches tall, and I am about to turn 55 years old.

Cannot Forget the Wild Card – Celiac

Sigh. What a month January was for me. Just when I thought nothing “new” would happen, we had a truck accident that I mentioned here, where a solid sheet of ice from the top of a passing cube van slid off and hit us amidst a notorious corner of Highway 1, while we were driving into town, resulting in my husband going 3 weeks without his truck. And then I had (still having) a crazy immune response to something I had been exposed to December, triggered by something I probably ate in January.

I say probably, because I will never know.

What I do know is that MCAS is related to hEDS, but the immune nature of this reaction (including swollen lymph node or nodes, hard to tell) started me thinking about the fact that long before any of the diagnoses I received in 2025, I was told by a doctor in 2011 that I was probably Celiac.

There’s that word probably again.

At the time, the only way to prove Celiac disease was to get an intestinal biopsy, which the doctor said would take at least 3 months to have scheduled, all the while I had to keep eating gluten, otherwise I could get a false negative. The thing was, I was sitting in the doctor’s office, very ill, having already waited 3 months for the referral to an allergist for my non-responsive-to-allergy-medication reactions. When I finally got to see the allergist, she said, “This looks like your immune system is excited about something, not just regular allergies,” and had ordered the following blood tests:

(Written in typical medical hieroglyphics that requires some Googling, lol)

We did not have a My Chart (or equivalent) back then, so I do not have a copy of those results, (but I wish I did, darn!). All I know is the doctor that sent me for the allergist referral in the first place, looked at the results, then called me in for an appointment. Then he told me he was pretty sure I was Celiac, and that a strict gluten-free diet would help. (Then he told me about the biopsy, and the at least 3 month wait, etc.).

He had me at “gluten-free.”

Going gluten-free was life changing. We never scheduled the biopsy. I had break-through reactions, but still felt good, but then I was fairly ill again 2016-2019. Lots of tests ordered during that period of time, abdominal ultrasounds, tests for infections, tests for Lupus, as well as the lung function test in January of 2020, for the shortness of breath that started in 2018, (which was actually my heart mitral valve). The results from all these tests did not give me any answers. (It was a list of all those historical tests that I took with me to my doctor in July of 2025, which finally led to a referral to a rheumatologist—a referral which had been refused in 2020–an echocardiogram, a proper bone scan, and finally all my diagnoses).

In 2019, in addition to gluten-free, I went grain-free, then I went as ultra processed food-free as I could, and once again, I felt so much better! Life changing again. (This is why I think maybe it was the processed package of taco spice that was my recent problem. But maybe not, like I said, I will never know).

Anyhow, I recently joined a Facebook group about Celiac, and they posted this morning something that resonated with me. Although lately I have been framing almost everything through the lens of hEDS and MCAS, it is very validating to not forget I am a Celiac too, and this will always add a layer of complexity to any and all immune responses I experience:

“Day 3 of my series on living with celiac disease.

It’s the “what ifs” that make celiac disease hard.

Is this GI distress from gluten—or something else?

Is the peanut butter contaminated because someone used a gluten-covered knife?

Is this product actually gluten free, even though it doesn’t list gluten-containing ingredients?

Did my friend accidentally add a gluten ingredient to this “safe” meal?

Did I pass this on to my children?

Why did I get this when my sibling has the same genetic markers and didn’t?

How long am I going to have to wait for a cure?

And underneath all of it:

Is my diet gluten free enough?

Living with celiac disease isn’t just about avoiding gluten. It’s about living in a constant state of assessment. Every symptom becomes a question mark. Every meal comes with a quiet audit. Every off day sends you replaying what you ate, what you touched, what you trusted.

People think celiac is “simple” because the treatment sounds simple. But gluten hides. Labels change. Cross-contact happens. Bodies don’t always give immediate feedback.

So you stay vigilant.

You second-guess yourself.

So much of it lives in your head — in the calculations, the vigilance, the what ifs you carry silently. That’s what makes it hard.

Work hard and stay safe out there. I see you and there is a whole community here that sees you too.”

The “Systemic Trigger” Continues

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.

This Allergic Reaction Surprised Even Me

Warning: This post contains pictures of hives!

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.

Exactly 6 weeks ago, on December 9th and 10th, I wore a 24-hour heart monitor.

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. 👍

I Only Know What is Normal For Me

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.

Ehlers-Danlos Syndrome Steps into the Spotlight

I recently watched this series Run Away on Netflix. I usually multitask a bit while a series plays in the background, so I miss little bits here and there while I am still “listening” to it, but not watching it. But at one point, I did think, “Hey, I didn’t notice before that the daughter was in a wheelchair, oh well, whatever.”

But then this article about it came up on my Facebook feed:

“It looked like a mistake at first. A detail that slipped through editing. But the truth behind it is far more human than viewers expected….

…Anya is played by Ellie Henry, who lives with Ehlers-Danlos Syndrome. It is a genetic condition that affects collagen, making joints unstable and movement exhausting. Some days, a wheelchair is necessary. Some days, it is not.

That reality was carried directly into the character….

…By not turning Anya’s condition into a storyline, Harlan Coben’s adaptation shows something simple and honest. Disability is not always visible. It is not always permanent. And it does not need a spotlight to exist.”

Frankly, 6 months ago I had never heard of Ehlers-Danlos Syndrome. That was until I was told I had it too, (hypermobility-type), and it explained why my heart mitral valve has torn, why I am struggling with small vessel constriction and circulation in my hands, why I have significant osteoporosis at only 54-years old, why I have sluggish digestion, why I now have bilateral inguinal hernias while simply working at a desk job, why my knee caps slip all over the place, why my shoulder dislocated so easily, (and was then also easily reduced, multiple times in one day, but not without tearing things and taking months to heal), etc.

I never realized with all the walking I do, it involves “muscle guarding” of my joints, especially my knees, which adds to my overall daily fatigue. But I need those lean legs muscles to keep going, so I don’t lose mobility! I notice almost right away, if I stop regular walking, how fast I de-condition. Faster than average, for sure. And my heart mitral valve leaflets did not tear because of some strain I put on my heart. Instead, my heart has strain on it because the valve leaflets are torn. So I need the cardiovascular exercise to keep my heart muscle strong, so it can handle the strain of the back flow of blood (regurgitation) caused by the torn valve leaflets.

Ehlers-Danlos Syndrome is a group of disorders, and has a spectrum, just like so many other things. Previously, I have not been high enough on the spectrum of resulting issues to have ever needed a wheelchair, for example, which is one of the reasons I went undiagnosed for so much of my life. My mother remembers taking me to the doctor at about 18 months old because I “walked funny,” my gait was very strange. She said it was almost as though I was swinging my hips to push my legs forward. In hindsight, it seems so obvious…but I totally understand how hard it would have been to realistically diagnose a loose joint/connective tissue issue at that age. Needless to say, after constant verbal correction, I eventually figured out how to hold my legs in a more steady way, and to walk straight. I also remember constant verbal correction to “stand up straight,” stop walking “knock-kneed,” don’t sit like that, etc. (Of course, extra flexibility alone, which kids naturally have their fair of, does NOT mean you have hEDS, but when you start adding up all the other issues… “If you are having trouble connecting the issues, think connective tissues”).

Anyhow, I just think that it is wild to hear that an actress hired to play a roll on a Netflix series has this same condition. And when cast for the job, Netflix just filmed her either standing and walking, or in a wheelchair, simply depending on her physical needs for the day. I think that is wonderful.

Osteoporosis and hEDS: A Public Service Announcement

So, I mentioned in yesterday’s post that I would write about my new plan of action. It’s fairly specific to me, because at 54-years of age, my lumbar spine has been diagnosed with a t-score of -3.3, which is already half way through the osteoporosis scale heading for really severe (-4.0), whereas my hips are only osteopenic, (-2.1), but inching fairly close to osteoporosis themselves. This difference is common in connective-tissue–related bone fragility. So, maybe none of this would really apply to a fifty-something-year old woman who did NOT have hEDS. And even then, not everyone with hEDS will get dealt this osteoporosis card, (or the heart mitral valve card either, for that matter).

I used Chat GTP as a sounding board for the things I am about to talk about in this blog. To be clear, Chat GTP did not diagnose me. I was diagnosed by a doctor, by an echocardiogram done at a hospital, by a bone density scan done at a radiology clinic, and even by a Dexa scan, which even though is not considered medically diagnostic according to my doctor, did show questionable findings that got the ball rolling for me. (Best $249 I ever spent on that Dexa! The rest is covered by my medical insurance).

Anyhow, Chat GTP has real information at its disposal on my real diagnosed medical conditions, so it was a great place to have an evidence-based and knowledgeable chit chat. This is not medical advice, it’s just my experience and decisions based on information I have gathered.

When it comes to the different t-scores between my spine and my in my hips, the bone densitometry I had done on October 3, 2025, also looked at the neck of the hip versus the total hip, where again there was a slight difference for me:

“In your case:

• The total hip is lower than the neck

• This suggests relatively greater compromise of cortical bone than trabecular bone at the hip

This pattern is actually very consistent with connective-tissue–related bone fragility, where:

• Collagen defects affect bone matrix quality

• Cortical bone can become thinner and less resilient

• BMD may underestimate true fracture risk.”

Hmmm. Good to know.

Here’s the interesting part, if my osteoporosis was just because I started menopause about 2.5 years ago, then firstly, my t-score should not be this bad already! It’s only been 2.5 years! So we can feel confident my osteoporosis is connective-tissue related. And:

“Contrast this with:

• Postmenopausal estrogen deficiency, which often hits trabecular bone first (neck worse than total).”

Okay. It is my total hip that is worse, not the neck, (and it’s my spine that is really bad for my age). None of this would make any sense, really… except in terms of my having hEDS.

Because I have hEDS, I am very hesitant to take any bisphosphonates (like Fosomax) because of my digestion issues related to having hEDS. “GI intolerance risk is meaningfully higher in your case.”

And besides, for me specifically:

“Potential limitations of Fosamax for you

• It does not address collagen or bone quality

• It can over-suppress remodeling, which:

• May be problematic when baseline bone quality is abnormal

• Is a concern raised specifically in some hEDS populations

• Spine BMD gains tend to plateau quickly

• Fracture risk reduction in younger postmenopausal women with non-classic osteoporosis is less robust than in older populations.”

Yeah. Many women with these same t-scores that I have, are actually much older than me. I have strong legs and good balance, (and I can work on increasing my core strength also), so I am not really at risk of falling in the same way a woman coming up on 80-years old would be, (although if I did fall, I could break more easily, yes, that is true). Fracture risk is a huge concern for older women, especially in their seventies and eighties. All it takes is that one fall, leading to a fracture, and they can lose their independence. Woman in their seventies and eighties that find themselves with significant osteoporosis need to pull out the big guns to get the best return on their fall prevention investment.

I need to invest in fall prevention too, but, in theory, I should have many decades of life ahead of me, so it would probably not be good to be taking harsh medication for the next 30+ years!?!

Anyhow, even though my bone loss is not directly caused by menopause, that certainly has not helped things.

“But here’s the key distinction in your case

Postmenopausal osteoporosis:

• Primary problem = estrogen deficiency

• Estrogen replacement can be foundational therapy

Connective-tissue–related osteoporosis (suspected hEDS pattern):

• Primary problem = bone matrix / collagen quality

• Estrogen deficiency is secondary or additive

• Estrogen cannot correct defective bone scaffolding

So in your situation:

• Estrogen may help reduce the speed of loss

• It may slightly improve spine BMD

• But it cannot reverse the underlying fragility

This is why your hips are osteopenic, not osteoporotic — estrogen deficiency alone does not explain your pattern.”

So, estrogen may help a bit, so that is what my doctor and I have decided to do, good old Hormone Replacement Therapy (HRT). Sure, there is a slight increased risk of breast cancer, but leaving my osteoporosis unchecked has risks also. Everyone must make their own informed decision in this regard, weighing benefits versus risks. (And for me personally, I am also taking micronized progesterone, because I still have my uterus, so a balance of both hormones on HRT is protective for that).

And for people with osteoporosis primarily because of menopause, if their doctor recommends it, I thought this was interesting:

“For lumbar spine osteoporosis, the timing of estrogen therapy is critical, with the greatest benefits occurring when treatment is initiated in the “window of opportunity” which is in the early postmenopausal years (typically within 10 years of menopause onset or before age 60).

Key Timing Effects

Early Initiation (Critical Window): Starting estrogen soon after menopause is most effective for preventing rapid bone loss. The first 5 to 7 years after menopause are when the most significant bone loss occurs in women due to estrogen deficiency. Initiating therapy during this period helps stabilize bone mineral density (BMD) in the lumbar spine and effectively reduces the risk of future fractures.”

I am only be 2.5 years into menopause. So, I now begin HRT as part of how I am starting to work on this problem for myself, based on my own personal “issues with my tissues,” that have been most probably been the main cause for me of this significant osteoporosis problem in the first place. And it looks like I am still within this good window of opportunity to be starting HRT.

That is it in a nutshell. I hope everyone has a wonderful New Year’s. Even with health concerns, being in the driver’s seat of my decisions, and putting those decisions into action, certainly feels better than instead simply allowing myself to be influenced, without taking the time to gather an adequate amount of empowering information on which I can make my own decisions.

Well Crap! (No Pun Intended)

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 Roller Coaster Ride Continues

My Raynaud’s attack yesterday afternoon, both hands at once, sigh, brought my mood down again. Many people feel the pain when the fingers go red and the blood rushes back into them. My personal experience is that it my fingers also feel very painful when my fingers go white like this:

Almost like I can feel the cold emanating from them. Numbness yes, but also a painful feeling of cold almost radiating from my hands, like I could cool the whole room down! Just like those scenes in “The Sixth Sense” when Cole knew a ghost was in the room…and he sat there breathing and we could see his breath.

“Primary Raynaud’s occurs by itself with no underlying disease, while secondary Raynaud’s is caused by another medical condition, such as an autoimmune disease, injury, or certain medications. Secondary Raynaud’s is less common but tends to be more serious.”—Google

Yes, mine is secondary to having hEDS.

Whenever I feel pain, it just makes me feel blue (in mood) for a time period afterwards.

I will work hard today to lift my spirits in a healthy way, so that I can go into the weekend feeling good. How about you?