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 to 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.
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.
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. 👍
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.
I think I have been complaining far too much lately, and not appreciating life enough. American thanksgiving posts are an excellent reminder to focus on gratitude. So I corrected some of my bad attitude by going skating Wednesday morning (our local arena provides free public skating, multiple times a week, how was I wasting these opportunities??) and finally started appreciating again how great our local arena is.
When my dad passed away in November of 2023, I posted here about how lucky I was to have skated with him on a frozen lake, 3 different times when the weather was cold enough without snow that the lake turned to glass. And I went skating many times that winter (at the free public skating at the arena) to remember my dad.
Then I did not go skating at all in 2024. Thought about it, then thought about my cold hands, and then just never did it, (even after I got heated gloves).
So happy I finally kicked my butt in gear, and got back on the ice, and remembered my dad.
Then, the good news is I actually just got a call that Wednesday afternoon right after skating, the cardiologist had a last minute opening for the next morning, so I went yesterday. Omg, seeing a specialist is next level! Everything is booked so fast, no messing around! What a relief. I did not realize how…abandoned I had felt by my family doctor, who had basically said, “It’s okay, it’s no big deal, it’s only moderate not severe yet.”
It’s not like I had a heart murmur for years, or like since I was a kid, and that having my heart checked was just “routine,” or something. I had NO idea anything was wrong with my heart at all until this summer, so to me, it was a big deal! (And I had skipped right over mild, and was already up to moderate, and borderline severe on one of the measurements).
The cardiologist said she does NOT want me to have to wait a whole year between echocardiograms to check again, so we can see if my condition is stable or progressing. So, my next echocardiogram is now scheduled for February 26, so by my birthday at the beginning of March, I should know if my condition is stable (fingers crossed).
And she wants other tests for a more comprehensive baseline of where I am at now, through which future tests can be compared, because my significant osteoporosis (at my age) is a real red flag, in her opinion, along with my other low levels, like iron, which could weaken my heart further.
It feels so great to feel…supervised. I did not realize how comforted I would feel to know, even though it does not actually change my condition or anything, just that someone is checking up on the situation. And my next echo appointment is already booked. 🙂
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 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.
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.
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.
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.
I had a rough few days, (Friday through Monday, Canadian thanksgiving long weekend), for the first time in a long time. I think knowing I have some health issues that cannot be solved through healthy lifestyle choices, all of a sudden made it seem like…what’s the *#$!% point? BUT nothing is better, not our physical health, certainly not our mental health, and not how we show up in the world for our families, none of it is better when we treat our bodies like a trash can.
I even avoided the scale, and for me, that is the first time I have done that in over 2 years. Yikes, who am I? I am NOT someone who behaves like that.
I think I have been going through the 5 stages of grief post hEDS diagnosis that I wrote about here, and heart valve disease, more about that here.
1)Denial
I was definitely in denial while on vacation in August to visit family. I got the diagnosis the day I flew out, so it just had not sunk in yet. At one point on my vacation, my brother ended up yelling at me, “Accept your new reality!” because I was about to hang off some monkey bars and risk dislocating my shoulder, (which has never been the same since dislocating it that I wrote about here. Sure, the accident caused the dislocation, but my hEDS means it would/could easily slip out again. Even the emergency room doctor warned me about it re-dislocating easily, after he reduced it, dislocated it again simply checking its position, and then quickly had to reduced it a second time, while asking me in a very surprised tone if was double jointed).
2)Anger
Then I was mad…stupid doctors…sending me for a lung function test, never checking my heart…telling me it’s all in my head…sending me for more than one abdominal ultrasound when I complained about my slow digestion causing my stomach to swell like I had an alien about to burst out of it…then saying “nothing looks wrong…” grumble, snarl…
3)Bargaining
September involved a lot of bargaining…I will walk this many kilometres, I will do these hikes, I will do 3 walks of 14K each, and all together they add up to a marathon…I will make incredible healthy soups with a perfect balance of macros and eat nothing else…
4)Depression
Then I started having moments…where it felt like depression was just waiting in the wings, just a little out of sight…but I could see it casting a shadow…and then when I got a call from the doctor’s office asking for an appointment to discuss the results of my bone density scan, (the one I had recently that IS medically diagnostic), it hit me. They want to talk to me about something of concern. AND it would be about something diet and exercise won’t fix. (At least not alone could diet and exercise fix it, especially if it has been caused by complications related to my having hEDS, I may need a proper prescription drug to help).
So, it’s official, I have osteoporosis, and yes, my doctor strongly recommends I take a prescription to help.
I had the appointment yesterday, and they told me, the -3.3 T-score on my spine means I do have full blown osteoporosis. And my stated Fracture Risk, the FRAX, can underestimate risk in conditions like hypermobility or connective tissue disorders as these can increase fragility and falls risk.
The fact of my hip density being higher than spine is common in connective tissue–related osteoporosis, where trabecular (spine) bone is more affected than cortical (hip) bone.
Prior to now, I got to say “No, none at all,” when someone asked, “Do you take any prescriptions?” Now my doctor says I need a prescription drug to help with my bone loss because of my fracture risk. That feels like a change in my identity, from someone who does not take any prescriptions to someone who now says, yes, I take a prescription bisphosphonate for my osteoporosis. And I know that it does not have to DEFINE my identity. But it’s a big change. A change I really do not want to make, simple as that. I have not yet got my head around it.
Especially not at the ripe old age of 54-years old?? No, this is not an identity change I want to make. I am back in stage 1)Denial.
It’s just been a lot. Hypermobile Ehlers-Danlos Syndrome, heart valve disease, now osteoporosis? Finding out I was Celiac was easy compared to all this. At least it felt it was easy, as though I could “solve” it by just figuring out how to eat “perfectly.” (Which turned out impossible, because there is no such thing as perfect, but I could at least delude myself back then).
I am not sure why, but a prescription for a Bisphosphonate, which “strengthen bones by binding to them and slowing the breakdown caused by bone-eroding cells (osteoclasts). This allows bone-building cells (osteoblasts) to more effectively rebuild bone tissue, reducing bone loss,” does not feel like I am “solving” anything. I am under no delusions this time, I suppose.
3 months ago, my identity was “I am healthy”:
Sure, I have digestive issues, but it is because I have just not yet found the absolute “perfect” combination of “perfect” foods for my body, right?
Sure, my hands hurt from Raynaud’s and neuropathy, but surely if we just knew the root cause, it’s probably something I am eating, (should I give up eggs maybe??), so we can “fix” it.
Sure, I have the occasional shortness of breath, but if I just did not get so “worked up” with silly worrying, I would stop feeling “anxious.”
But now my identity is…there are some major defects in the manufacturing…
I must at least try to maintain my current vitality, and NOT succumb to thinking there is nothing I can do, including focusing on diet and exercise for bone density building. But ug, I feel exhausted with thinking about it all for the last 2 months. So, here is it, Kübler-Ross’s stage 4 depression, rearing its ugly head…
The Bio Joy Diet 