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 took 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. 👍

Food is Love

I get it, this is a cute cartoon and something that is very normalized in society today. Pleasurable time with other people can involve food. I know my husband absolutely includes food with any date night or daytime outing. For him in particular, food is love.

The way I currently live around food can look like dieting/calorie counting trying to keep my excess weight off. And yes, that is a part of it. There is also the Celiac factor, since 2011, which means navigating all foods for me to be gluten-free. Then add in the benefit I found (personally, for my body) in navigating all foods for me to be grain-free, which reduces my joint (inflammation) pain. Then add in the benefit I found (personally, for my body) in pretty much avoiding all ultra-processed multi-ingredient foods, including commercially available any food with colors and/or fillers, even natural ones. Anything with emulsifiers even things like carrageenan in dairy cream. And commercially available items with chemicals and preservatives, especially those in salad dressings=light my tongue up on fire. This is explained by my hEDS that gives me a lot of “issues with my tissues,” especially with my skin (eczema) and my digestive track, (nausea, bloating, constipation). That just leaves me meat, fish, eggs, dairy, fruits, and vegetables, (which is still a lot), and I simply have to cook almost everything myself from scratch.

After an otherwise wonderful holiday to Hawaii in 2017, I realized I had spent too much time feeling sorry for myself in restaurants, as I struggled to find foods that I did not react to.

After the trip, I reflected on what I could change, (namely, my attitude), and came up with my own personal motto, #notaboutthefoodthistime. I did not want to ever again waste time feeling sorry for myself in any restaurant. I decided from then on, it was not about the food, but ONLY about the company and the experience.

Except, when in a restaurant, well, it’s always about the food, isn’t it?? How can it not be??

When I see posts that show how “fun” it is to share food and good times, I remind myself, that for me, valentine’s dinner out with my husband will be about getting dressed up, and being happy he can enjoy a decadent meal out, instead of my homemade and somewhat leaner offerings at home. I will enjoy the experience, and who cares if the food I choose to eat is somewhat minimal, in comparison. Once again, I will remember my personal motto, #notaboutthefoodthistime.

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.

Workout Express Circa 2004

I found this picture from December 2004, from when I was going to Workout Express three to four times per week (after working 9 to 5 at an office). I am even wearing their t-shirt in the picture, and my cheeks are flushed from having just done a workout, and then driven home.

I was dedicated. Until I wasn’t.

It is truly exceptional to not only get fit, but to also stay fit. I tried to get fit and stay fit many times since my year at Workout Express. Did I even make it a year? Yes, I think I made it a year and a half. I quit when I changed jobs in April of 2006, because by then I was not going as much as I used to anyway. When I changed jobs in 2006, I was actually working on “building a career or business.” Both of those things, in fact. Helping my husband build his business, and going back to school part time to build myself a new career too. We were not raising kids full-time, but we were dealing with our fair share of “handling chaos.”

By the time I started this blog in 2019, I was trying to get fit, for the umpteenth time, and it took me a while to get to where I am today. Now I am trying to stay fit while “aging.”

Aging has added a layer of difficulty to staying fit, just like building a career and business, and handling chaos did. Maybe even more of a layer. And, of course, staying fit while handling chaos still exists. Unexpectedly this week, a huge sheet of ice slid off a cube van that we passed on the highway going 60 miles an hour, and it basically wiped out the whole front end of our truck! We were lucky we were not hurt, because it hit our front end, breaking everything through to and including part of the radiator. But luckily we did not get pushed off the road, and it did not hit or go through the windshield. Even though we have insurance, there is plenty of chaos filing the claim, extra traveling for repair estimates, then waiting for all repairs to be done, all the while being without the use of the vehicle until it gets completed, etc. That’s just life.

I have to remember aging is just life too. I need to adapt to the different signals from my body, and it’s fluctuating and/or changing capabilities. 20 years ago, because I was changing jobs, I basically abandoned Workout Express without a clear plan of what I was going to do instead. I have now learned that staying fit means staying with fitness routines, and adapting and changing them as necessary, but never abandoning them.

Where I Am Now

This is a really good reminder for me today, because have been struggling lately with a bit of extra fatigue. And it’s funny, because it was almost on a subliminal level, and then I finally realized that feeling tired like this was making me feel “out of shape.” And I want to be uninfluenced by these kind of subtle feelings that can hover under my radar, steering me towards bad decisions, like giving into sugar cravings. Instead, I want to pay attention to signals from my body, even when they are subtle, and be eyes wide open with my decisions.

So firstly, dieting 101: sugar cravings for energy = eat fruit, for example, eat an apple. That actually worked for me yesterday and today. I ate an apple, and I felt better. An apple is a much better option than giving in and eating some kind of pure sugar junk food (chocolate)!

Secondly, I am NOT out of shape, as in being in a state of poor physical condition. I walk regularly, yesterday I went ice skating for an hour, and I had an excellent stress test result in December, with my cardiologist very impressed with my exercise tolerance. So, even if I have been feeling some extra fatigue lately, I cannot let that signal to me that somehow I am “out of shape,” and therefore, what’s the point in continuing my routines, as though they are somehow not working. I know for a fact they do work! I just need to push past this extra tiredness, which is probably just temporary. It could be caused by many things, lack of sunlight (it’s January), maybe I am fighting off a virus, or maybe my blood sugar is fluctuating a bit, who knows. All I know is nothing about my life will be improved if I let myself slack off now. 😊