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 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.

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.

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.

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.