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?

My Own Worst Critic

I came across a Facebook post that said:

“The next time you find yourself blaming or shaming someone, because they deserve it for how they wronged you, take a pause and a breath and ask yourself: What is it in me that needs attention here? Shift your energy. Take responsibility for your own life and embody the energy that you want to attract.”

Lately, I have been stuck in a rut of cycling into feeling sorry for myself for every time I have ever felt gaslit about my health, by doctors, and yes, even at times by my spouse. But truthfully? I was my own worst critic. I felt unheard and abandoned by myself. In fact, I experienced a lot of self-loathing, because feeling unwell usually resulted in bad food choices that made my feelings/symptoms worse. Those times my body was sending me a message saying hey, something does not feel right, I ended up feeling (rightly or not) that the narrative was: it’s all in your head, just stuff it down, and I regularly told myself exactly that. Instead of believing the signals coming from my body, instead I asked myself: what are you getting from “not feeling right?” What are you getting to avoid? Something feels “off” because you must WANT something to feel “off,” so then you won’t have to show up for your life in some way. Just stop it.

Ultimately, I was really hard on myself, and I have been grieving, in a way, that I treated myself like that.

I feel very bad for my former self that I put down and punished for “misbehaving.” I wouldn’t EVER treat anyone else that badly. Yet I blamed and shamed myself.

But now that I am no longer gaslighting myself, I need to ask: What is it in me that needs attention here?

I cannot change the past, but I can change my future. I need to quit dancing on the edge of that cliff. I need to take care of myself. I need to treat myself with kindness. I need to love myself (my body) just like I would my best friend.

Self Care: What Should it Look Like

This is cute. The post it was attached to said this was “self-care.” A bubble bath, a mud mask, a candle, donuts, a Starbucks-esque drink, a computer. But I think we should normalize self-care looking more like abstaining, rather than indulging. Taking a step back from what we usually do, for a period of time, which maybe is not the mud mask and the bubble bath, but which is probably food, drink, and social media.

Because, let’s be honest, how many people are probably doing those things, food, drink, and social media, every day? I know I am.

So, could I go I whole day without food? Yes, I think I could, and I probably would benefit from doing that once in a while.

“Not eating for a day can have other potential health effects. Research in a 2022 review suggests that intermittent fasting may help to reduce fasting glucose and insulin levels in people with type 2 diabetes.

Intermittent fasting may also help to reduce the risk of cardiovascular disease by reducing factors such as total body weight and fats in the blood.

Research in the review also suggests that body weight reductions due to intermittent fasting may improve systemic inflammation, which links to certain cancers and other health conditions.”—Google

I am going to admit, however, this is another example of when my hEDS can have a positive benefit, for me. I regularly experience delayed gastric emptying, which is awful when it flirts with paralysis, but it has helped me, yes I will admit, get pretty slender for my height, after years of being overweight. Because delayed gastric emptying leads to (for me) never really feeling hunger from my stomach. But I still get “head hunger,” so I continue to need to be disciplined and consistent in planning what I eat, and eating what I planned. (Careful what you wish for though, lack of physical hunger pangs is really one of the very few things I can say is “good” about having hEDS, hello chronic constipation…)

Drink? Well, we should drink water, at least, if we are trying a 24-hour fast. But we could make sure we only imbibe drinks from home for a certain period of time, (no drive-thru!), if that is something in which we regularly indulge.

Could I stay off my iPad (social media) for a whole 24 hours?

Ummm…

Anyhow, just thought I would throw the 24-hour fast idea out there. Maybe not a 24-hour fast, (I have heard women more than men can end up with counter productive cortisol spikes if we fast too long—however, more research on my part is needed), but just abstaining from something for a period of time as a self-care benefit that can give our bodies (do not have digest x, y, z, etc) and/or our minds (no doom scrolling) a much needed break. That sounds like some good self-care to me, because working on our health is self-care.

Bikini Pictures: No Filter

—Picture on the left, July 28, 2024, 124.9 pounds.

—Picture on the right, July 1, 2025, 121.6 pounds

—A difference of almost 1 year, and only 3.3 pounds=real maintenance for me, for the first time in my life

—Same beach, same driftwood tree stump, no filter

I talked about my “shrinkles” here last year, so the intention of this post is not to brag—woo hoo, look at me in a bikini—and at my age! This intention of this post is to show that my “shrinkles” look a bit better one year later, thanks to regular exercise, mostly just walking…(and maybe thanks a bit to my having hEDS).

Because I am trying to convince myself to look at more positives about my health diagnoses. Even though I know I have been dealing with hEDS my whole life, I just finally have a name for it, I want to instead flip my script about knowing about these new things about my health, in an effort to deal more positively with my recent struggles with up and down mood swings.

So, a person who has hEDS can experience “a characteristic feature of hEDS is poor and delayed wound healing.”

But, they can also experience “The skin in hEDS may be described as soft, velvety, and hyperextensible (stretchy), which can sometimes be mistaken for ‘good quality’ skin, but its underlying structure is fragile, leading to the observed healing difficulties.”—Google

Myself, I think I have experienced the hyperextensibility, which helped my skin to stretch to accommodate my numerous weight gains and losses over the years. (And luckily for me, wound healing overall has not been that bad either). But I have not withstood my decades of weight fluctuations without some damage. However, there is always hope, “While skin turnover is around 14–28 days for younger people, it can take 60–90 days or longer for people in their 50s and older.”

That means for me, every 3 months or so, my skin can still improve following my weight loss, (most recently for me, a 70 pound loss), even with aging in my fifties.

I just had to give it some time.

And lots of walking.

Admittedly, July of 2024 I had gone into a bit of a mental slump, and I only walked 30 kms that whole month (doing about a 1K to the mailbox and back everyday, but no other activity). Right now, I am averaging about 100 kms per month. And I think it shows. Not just moving more, but moving more consistently.

Also, this post is to normalize that our bodies will show our history, unfiltered, our damage and scars too, and we should NOT feel bad about it. I have chosen to put out into the public space that yes, I was not perfect, I gained weight on and off over the years, because I overate many times for emotional reasons, not because I was hungry. But I also lost my excess weight, and now I am working very hard to keep off my excess weight, and this is what it looks like for me.

I am very lucky to have the body I have, defects in the manufacturing, and all.

Highs and Lows of a Different Kind

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

I am not fine.

But I will be.

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

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

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

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

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

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

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

Yes, that is how I talked to myself.

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

Or this…

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

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

So…

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

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

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

Rollercoaster Ride of High and Low Emotions

—Robert Frost

Moving through stage 4 into stage 5 of the 5 stages of grief is not an “all at once” event. I am experiencing it as a roller coaster ride of one day in depression, with the next day lifting somewhat back up out of those depths, but then it only takes one thing to plunge me right back down.

I am getting sea sick just typing that out, because it so viscerally reminds me I am currently living those exact whiplash ups and downs.

Unfortunately, I am also experiencing a certain feeling that I am NOT supposed to feel depressed at all. I should feel lucky…because other people have it worse.

I am just going to put it out there: thoughts of other people having it worse has NEVER made me feel any better about whatever I am dealing with. If I was lucky enough to be pain free yesterday, but I am experiencing pain today, how does thinking about someone else’s pain help me deal with my pain today?

Yes, yes, I get the logic behind that thinking. You ask yourself, how bad is your pain? And you answer that by asking yourself how bad does it compare to other times in your life, and/or how does it compare to someone else who has it worse off than you? Then maybe you feel better because the pain is not as bad as another time in your life, and/or it is not as bad as someone you know who is really, really, having the worst time in life, that you can imagine. And you count yourself lucky, and write out a gratitude list, and you do feel grateful.

But then…you are still left dealing with your current pain, because no matter what, you hurt.

And if you used to soothe your pain with food, (as I used to do), and you don’t do that anymore, then you are just left with…feeling the pain.

For me, I felt pain after I tweaked my knee Saturday, and it brought my whole mood down because…I felt pain.

Maybe it was not a lot of pain.

Maybe it was not even close to as bad as someone else’s pain.

But I kept feeling it, it bothered me, it stole the peace I had been feeling before I encountered it. If I say I “let it” bring my whole mood down, am I self-blaming? Am I weak because I couldn’t “shake it off” and push it aside with thoughts of how bad other people are suffering instead?

I know in the past being told, “well at least you don’t have it as bad as so and so,” has never made me feel better about whatever it is/was that I am dealing with. Instead, statements like that have left me feeling unheard, and even negated, as though I have no right to feel any pain at all if it does not rise to the level of being “the worst it could be.”

I know this blog post comes across as me doing some complaining, oh woe is me, but this space is where I do feel heard, even if it is just being heard by me, myself, and I. I am in pain, and I feel depressed, and the only way out (for me) is through. So, no, thoughts of other people’s pain, or a gratitude list (which I do have, and it’s long, and I am grateful), will make me feel better right now. I just have to feel what I feel.

The only way out is through.

Serious Defects in the Manufacturing…

I feel a bit better today, but I had slid into a serious mood slump yesterday. I am still having trouble getting over this last diagnosis of osteoporosis.

I have been a person who likes to measure and compare things. Like Lisa Simpson in “The Simpsons,” I always wanted (still want) to be graded on things. Of course, I always want to get a good grade…

The bones in my lumbar spine just got a really bad grade -3.3.

Even with my heart valve disease, I found out I am ONLY grade 2 out of grade 4 regurgitation, caused by both the anterior and posterior leaflets of my mitral valve having been torn by my underlying connective tissue disorder, hEDS. Really, there is no need to worry until it gets to grade 4, right? 2 is a good grade compared to 4, right? I type that a little sarcastically, because my doctor was practically (and annoyingly) blythe about that diagnosis. For me, finding all that out was one helluva shock, because I had no clue I had any problems with my heart at all! (Prior to that, my shortness of breath symptom had been just attributed to how I breathe, with a lung function test that showed I was fine). I thought at only 54 years old, finally with a stellar BMI, that I was healthy! I mean, other than my sore hands, numb finger tips, sore knees and ankles, and…well…I definitely did NOT think I had a heart condition!

I digress.

Even though I suspected something, (that Chat GTP had pointed out, based on lower than average upper body bone density numbers contrasted to my very good lower body numbers—I walk a lot), I thought maybe I was headed towards osteoporosis, that maybe I had osteopenia (defined as a t-score of -1 to -2.5). I honestly never thought I would have already blown past those numbers all the way down to -3.3.

I know I am hyper fixated on this number. It is just a number, afterall. It means nothing, and I am the same person I was last month before I knew “the number.”

It just means I am a person with some serious defects in the manufacturing…and that is okay.

The Journey Does Not Get Easier

Someone said something brilliant the other day: The journey does not get easier, you just get stronger.

I have been blogging a little more lately, especially with my recent health diagnoses of hEDS, (which causes pain in my hands, joints, and which has been impairing my digestive tract for years), mitral valve heart disease, (which, quite frankly, could someday be life limiting), and osteoporosis, (t-score of -3.3). Did I mention I also have MCAS? Here is a set of pictures, (day 2, then day 3), of an allergic reaction I had to an insect bite, which is typically an “over” reaction for me, due to mast cell activation.

Yikes! Written all down like that, I sound worse off at 54 years old, than my 80-year-old mother who is a breast cancer survivor!

Anyhow, I love blogging. I love getting my words out of my head. I love sharing my experiences.

What I do not like is “stuffing” myself down.

I grew up in a household where it was easier to stuff myself down, make myself “small” because I was “too much.” And food was an easily accessible tool, compounding by 80’s diet culture that was practiced in my home telling me that as a girl I should not eat any extras, but my brother could eat whatever he wanted because he was a boy, and naturally skinny on top of it all.

And even though I grew up and moved away from home, the turning to food to stuff-myself-or-my-feelings-down habit stuck. The habit of stuffing down discomfort instead of feeling it.

Blogging is the opposite of stuffing it down. I feel heard, even when it’s only myself that reads these words. I am actually a bit shy in real life, so it almost seems counterintuitive to find such immense comfort in putting my words, any of my words on a variety of subjects, out into the public space. It’s not exactly about connection, although some connection with others has been a very happy byproduct. It’s mostly about talking to myself, outside of my own head, and feeling heard in ways I did not consistently (if ever, but I am willing to allow that my memories are not perfect in this regard) feel that I was heard growing up in the household dynamics in which I was raised.

Here’s to another weekend of NOT stuffing it down. I am fortifying myself with this blog entry to have a far better weekend than 2 weeks ago. We are going to a Halloween experience tonight, and I may even wear a make-shift costume (and then post a picture) if I don’t get too shy to actually do it.

Turning the Corner

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

Today, October 24, 2025 – 122.1 pounds.

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

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

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

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

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