I’d love to tell you that all of my health shit has improved, but I would be a lying liar. Things are very samey. My thyroid is mostly under control but I am still having issues with palpitations, dizziness and lots of breakthrough pain.
I’m going to see my rheumatologist soon, and also am doing a sleep test to rule out sleep apnea.
Had the colonoscopy and turns out everything is fine. No IBD. Just IBS. Mr. Blog and I just side eyed each other at this news. Because my digestive system is not fine.
Yay, so I found out today that my gastroenterologist referral was accepted. Up to 22 months before I will be seen.
Yes, you read that correctly. Lmao.
22 months. Nearly 2 years.
Nothing says you’re on your own like a 22 month wait for a specialist
Might have to adjust the game plan so I don’t dehydrate into dust particles in the meatime. Gonna speak with a registered dietician to see what I can come up with meal-wise that fits my allergy/sensitivity list instead.
… And it turns out that I have a lot of food sensitivities.
I mean, I eat and then either get itchy or sick or flush hot red on my face and chest, so I figured that would probably be the case. Well, my naturopath finally got the results back.
I have sensitivities to gluten, dairy, eggs, corn, and a few other things. I thought this testing would show a few other things that surprisingly didn’t flag.
Bell peppers, hot peppers, tomatoes, citrus outside of oranges.. and I wonder if I have been looking at this wrong, maybe.
Here’s the list
I think I was expecting that this list would be a comprehensive list of foods that make me itch. And some of them do. Some don’t. I have to be better about recording responses. Or recognizing then. I get red, hot patches on my hands. That’s a clear sign. But so is the fact that milk makes me super phlegmy and also makes my stomach very upset. Wheat doesn’t make me itch, really, but I have noticed that I get a stuffy nose. Eggs make me gassy.
These reactions, with exception of the gastric issues, are not really a big deal. Kind of annoying but, not life destroying.
Compounding all of it together, it’s putting stress on my body which I should be unstressing.
I am going to try to do an elimination diet. I’m cutting all this stuff out for 3 weeks, then will take stock of how I feel. Then I will try to add some of the stuff back in slowly. See if I can reclaim some things on the list. I will keep you all posted.. and by you all I mean the random people that wanna read my very stream of consciousness rambling.
Also, just as a stupid sidenote, I’ve been using Aveeno for my face wash and body wash. I’ve been slathering myself in the ENEMY.
Back to that empathy thing I was talking about the other day. The real trap with having advanced empathy is that you care about everything. You consider all the angles all of the time to make sure you’re doing right by the world at large. Sounds great, right? Everyone is caring about everyone.
But the issue is that, as much as I’d love to think that (deep down) we are all the same in that way, we aren’t. The western world is kind of on fire right now and there’s a percentage of the population cheering it on because they don’t care who gets hurt, sick, killed, or dies as long as America’s budget deficit shrinks.
If that’s too vague an accusation to make my point, I will make it a tad more personal to illustrate the point. At work recently it has become apparent that my competence is being used against me.
That moment you know something isn’t right but you’re not sure what it is yet
Someone’s on vacation for a week and you need me to cover? Oh, okay I guess. There’s a volunteer committee you’d like me to be a part of? A “stretch assignment” doing someone else’s work to get me even more than experience doing the thing that I’ve been doing since 2020 that I have effectively mastered? Oh, that stretch assignment that I already completed is being handled by someone else and I can pass the reins to them to do… What exactly? But ok sure.
I find myself doing more than most and more than I need to with the expectation that it’s the same as everyone is doing. And it isn’t. I know that it isn’t. Just because I am great at my job doesn’t mean that I should have more job than everyone else.
So, I am simplifying some things. I let boss person at work know that I am not up to doing any stretch assignments anymore. I want to focus on my health and basically every condition I have is impacted by stress so… Gotta cut things where I can to manage my health.
I am not sure how it’s gonna go over. I guess I will find out on Monday.
One of the things that I have tried to do since my body began to betray me (isn’t that way cooler than saying that I got sick?) is to find people experiencing the same illnesses.
Don’t get me wrong. I have some of the greatest, most supportive people in my life but… They don’t get it. Not really. They can empathize, sympathize, and try to relate it to something they’ve experienced.. but until you’ve woken up for the 300th day in a row, taking inventory of what hurts today before you move anything.. I think it would be hard to get it.
Without diving too much into it, I spent many years trying to be invisible in my own home because it was easier than being seen as a child. I would consider myself highly advanced in the art of empathy. And I didn’t get it.
Anyway, so I’ve looked to reddit mostly for people that get my symptoms, experience similar issues. But it’s weird, because you can kind of tell that, even though they experience some of the same things, that maybe they haven’t mastered the art of empathy because there is this… Almost gatekeepy vibe like.. umm you’re doing x illness wrong.
Someone will ask, who has had this experience and I respond because why yes, I do experience this thing. Almost immediately there’s someone there why what you’re doing to treat your illness doesn’t work or that whatever they’re experiencing is wayyyy worse for some reason or just generally being shitty about something you’ve disclosed about your own experience.
Like, dude. Okay. You are the best at having fibromyalgia. Can we stop dick waving now? Because I come to these communities to add value or find value in information posted there.
Everyone’s experiences vary. Everyone’s illness is different. Not every med is right for everyone and we all have different triggers, etc etc. I don’t really go to reddit for validation, because only I truly know what’s working for me.
I can’t imagine someone responding to post outlining personal experience with an “umm actually.. you should..” But it happens shockingly often. Oh this med doesn’t work for x thing. You should try this. You don’t truly have x symptoms if you’re able to… Or that’s terrible, you should be on x diet.
I decided to try seeing a naturopath as I feel like all of my illnesses are entwined but I have zero doctors looking at the whole picture. I still don’t have a family doctor so, I am seeing a walk in doctor consistently to get referrals.
So this naturopath had me do a food sensitivity test because basically I itch all the time. They also ask me to ask for an h. pylori test.
I go to the walk in doctor because my naturopath can’t test for h pylori. The walk-in doctor tests me for h pylori, and digs into my family health history. My dad has UC. Uncle had Crohns. So, yeah.. I get a stool test for that and a celiac test.
A week and a half ago I get a call to go in for the results. No celiac, no h pylori, no results from the stool test. So I literally go in and they’re like… You probably have IBS and come back if it doesn’t get better.
Like bro I have felt this all my life. But sure thing it’ll go away.
It was one of those times where it’s like, well shit I am on my own.
Two days later, they call me in for another appointment because my stool test also wasn’t normal. Want me to come in on Monday.
So either I have to shit in a bowl again or I am getting referral to a gastroenterologist for a camera up the butthole.
Isn’t life grand??
I feel like my body is just six illnesses in a trench coat at this point. But, whatever. Just more tests.
So, today I bought the Cadillac of pill keepers. It’s both hilarious and also depressing how much I needed to upgrade.
Dutch angles keep it visually appealing. IYKYK.
In a year’s time, I’ve gone from a relatively healthy person to someone that needs a shower chair, a monstrously big pill keeper, and an app to remind me to do almost everything. As much as I am striving to adapt to the new me and maintain a personality outside of my illness, it’s been a struggle.
I am a sad sack today. That is all.
Tomorrow I have to go to physio because apparently I tore a tendon a tiny bit in my shoulder just existing. I can’t pinpoint the time it happened, so it’ll be interesting to see if it truly helps the pain.
I am bracing myself for an epic flare.
Next week I finally see a cardiologist about my tachycardia and my endocrinologist about my hypothroidism.
Oh that’s another fun note. I am actually subclinically HYPERthyroid now according to my bloodwork. I honestly just laughed when I got the results. Like, what next?
I am kind of punchy today because sleep has been weird, but at least I know why. Apparently hyperthyroidism can cause that along with fibromyalgia, histamine intolerance and all the other random shit I suspect I have.
I broke down and saw a naturopath. I partially worry that I might be grasping at straws, but who knows. My insurance pays for it and it can’t hurt.
I don’t think anyone is looking at all of my symptoms at once. My rheumatologist just keeps saying I don’t know if it’s the fibromyalgia or your thyroid or..
It’s like, me either, dawg. Me either.
Giving you one last moment to bask in its beauty. Suckers.
So I am back to work after the holiday, but my hubs is not. I am deeply jealous, but I’m being so brave about it. Praise me.
He randomly went out to grab some lunch and overheard these two women talking about their long COVID symptoms. They didn’t match exactly, but had lots of parallels. Brain fog, itching, exhaustion, etc etc.
There are so many of us out here like archaeologists sifting through the rubble of what our bodies used to be prior to COVID, trying to figure out what’s left.
Uncle Traveling Matt. IYKYK.
That said, I’ve got a slew of appointments coming up in January.
Rheumatologist, endocrinologist, GP, and also with a functional medicine doctor. I would love to have someone put all of the pieces together and come up with some strategies to manage everything. I feel like I am on the cusp of managing things some days and others it feels as if I have been run over.
In closing, I am so tired. Hoping for a breakthrough sometime soon because sleep would be super.
For better or worse, the past few years have really shaken my view of the world. It’s gone from, “well most people are the same deep down,” to… “Oh shit, about half of you don’t experience empathy and that’s a huge problem.”
It is quite one thing to not have guidance in a subject and not know what to do. It is another to have guidance about the thing you don’t know about from experts who have decades of real-life experience, then discount that evidence to avoid even the smallest concession to your comfort.
Like, look… You didn’t want to get the COVID vaccine, I get it. It’s very early medicine that didn’t get to go through a ton of trial and error. Mass hysteria + the already existing vaccine fears. It doesn’t make a very convincing picture.
For the record, I took the vaccine and have boosted four times since, I think.
What DOESN’T make any sense is the anti-mask sentiment. I kept hearing that they don’t work so why wear them. First of all, they do work but you wearing the mask mostly protects other people.
So that was an immediate turnoff for the “what’s in it for me” crowd that I mentioned. The ones that would rather avoid foggy glasses than keep their own germs to themselves. Who would rather horde ivermectin and hydroxy chloroquine (which created shortages for people who needed it legitimately) than consider what actual scientists tell them.
So, no, most people aren’t the same, I guess. So my character arc has gone a bit dark, I guess. Because I don’t know if you can teach adults empathy. Maybe we are 50% screwed? I don’t even know.
I will just start off by saying.. no. Not at all. Not in small and unimportant ways or even the big, huge, wildly important ones.
This time last year I was living in a completely different province, working a temp job and trying to get an appointment with a for-pay doctor because the Quebec healthcare system is such absolute shit.
I had this nagging pain in my hands that I thought was carpal tunnel or a repetitive use injury. I had tried using telehealth and it was pretty useless and I was about to find out how fucking awful the Quebec healthcare system is.
Fast forward a year and I am a permanent employee at the temp place, I live in a different province, have actual doctors for my care and would absolutely love to just have carpal tunnel.
Not all of the unexpected is bad, though. I appreciate it more than ever now, having stability at work. I am looking forward to owning my first home around this time next year, and ultimately do like Ontario better.
I won’t dive too far into the health stuff. If you’ve read any of my other posts, you get that I am a hot mess, health-wise.
I am doing the best I can under the current circumstances, and some days I just feel like I am along for the ride, but I am still here. Even after what feels like a catastrophic year in some ways.
That’s gotta count for something. But 2025, please be kind. I beg of you.
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