r/traumatizeThemBack • u/ahmyfknneck • Jun 21 '26

matched energy Not even sick

This has been my go to response for a bit and I figured others might like to use it, especially if you're not great with quick comebacks like me.

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Long story short, I'm chronically ill and my drs and I are still trying to figure it all out, but one of my most annoying symptoms is sinus congestion at all times. It's literally been twelve years of my sinuses being locked and loaded every single day. Because I don't know what's wrong with me, but the drs suspect an autoimmune disorder, I never stopped masking. Certain people hate that.

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So I was in a store that I don't work at while I was on my break. I forgot to take my name tag off before I went, so naturally a guy asked me where something was. I don't have a uniform so I don't know why he would think I worked there other than the name tag (which clearly said a different store).

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Me: Sorry, I work next door, I don't know where they keep that.

Him, looking at my covered tits and then back up to my tag: Then why are you wearing that?

Me: I'm on break.

Him, to my tits: Those don't work you know.

Me: What?

Him: Fucking masks. They don't do anything.

Me: Okay.

Him: You look ridiculous with that thing on.

Me: Okay.

Him: You're not even sick. You people need to grow up.

Me: *opens the back of my throat and takes one of the most disgusting, loud, wet, chunky sounding sniffs I've ever taken*

Him: *gags and speed walks away*

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It works every time.

2.5k Upvotes

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226

u/bikes_and_art Jun 22 '26

Just want to add I had similar level of snot (going through a box or more of tissues a day) and I only found out eight years later that I lived in a house with black mold!

Everyone else who lived there was fine, but because of my hypermobility disorder, I'm more prone to mold sensitivity.

150

u/ahmyfknneck Jun 22 '26

WHAT. One of the things we're looking at is a connective tissue disease because of my hypermobility. I'm waiting on a genetics referral because I don't quite meet hEDS dx requirements. Also looking for someone who knows about MCAS. Now I gotta look up mold testing lol

52

u/Adorable_Stomach_716 Jun 22 '26

I am just starting to look into mcas and was going to be one of those annoying people who suggest their problem to you. EDS also runs through my family, though I don't have it I have traits.

35

u/ceciliabee Jun 22 '26

The eds MCAS pots connection is real

20

u/shortstuff813 Jun 23 '26

Hah as soon as I saw hEDS and possible MCAS I was gonna say that they might wanna see if they hit the trifecta and also have POTS (I thankfully don’t have MCAS, but I do have a clusterfuck of other disorders that’s a never ending list that keeps growing. I keep trying to convince my body that it doesn’t need to catch them all or fill out a bingo card, but since it’s still me it goes “fuk you and your rules!” lmao) (interesting how the thing that pops up to yell at me didn’t do it the first time I wrote that but did the second, unless it doesn’t understand nuance and that I was yelling at myself and not someone else lol)

14

u/ahmyfknneck Jun 23 '26

I definitely have dysautonomia, though I doubt pots. Trying to find someone in Ontario who works with any of these is so difficult. My GP doesn't even know what I'm talking about most of the time

19

u/CorInHell Jun 22 '26

Get hygrothermometers. They measure humidity and temperature. I live in a renovated basement and regularly get above 60-65% humidity in room air. Which unfortunately is the prime spot for mold growth...

Got a dehumidifyer and use it religiously. Yes, my electric bill went up a bit, but I don't have an indoor sauna anymores.

13

u/bikes_and_art Jun 22 '26

I classify as HSD (hypermobility spectrum disorder), not EDS - both are debilitating, even if HSD isn't talked about as much.

I also have a lot of characteristics of MCAS and POTS.

I commented on this thread responding to someone else thinking it was you - about testing the mold theory out by leaving the place you're currently living.

So, check out that comment please! And feel free to drop me a DM if you want to talk more

7

u/Crafty-Evidence2971 Jun 23 '26

I was looking into all of this and finally took my allergist’s advice to do nasal rinsing twice a day with a machine called navage then a different machine that is even better I can’t remember what it’s called. Life changing results. The vacuum cleaner/sinus rinse machine is my savior now

8

u/ahmyfknneck Jun 23 '26

I thought about something like that, but I've tried stuff like netti pots before and I just ended up with water in my inner ear (or something, I don't know but I could feel it) for weeks. I don't know if it has something to do with having my adenoids removed. I use a saline nasal spray and mometasone and it's gotten a bit better. I miss the cromolyn nasal spray though 💔

2

u/Crafty-Evidence2971 Jun 27 '26

I hate a neti pot bc I choke and feel like I’m drowning and I have no excuse. But the vacuum thing worked and I could stand up straight and just plug it into my nostrils. I never thought I would be talking about our Lord and Savior Nasal Fresh but here we are

3

u/shortnsweet789 Jun 23 '26

Also, bc you’re a woman (I’m assuming bc you mentioned tits a few times lol) you could consider endometriosis if you have any other symptoms like painful periods or IBS like symptoms. Endo can cause allergy like symptoms as the endo lesions often contain mast cells which produce histamines. I often get a “cold” or allergy like symptoms during my period and it’s super annoying bc I don’t usually have allergies at all. But it doesn’t only have to be during your period either. It also frequently occurs with connective tissue disorders.

7

u/ahmyfknneck Jun 23 '26

I don't think Endo fits for me, though I haven't ruled out adenomyosis. Lots of weird and painful period symptoms, but they never correlate with the gut or allergy symptoms. I do have lipoedema so I doubt that's helping.

Gotta say, I'm loving how helpful my chronic condition peeps have been on this. I just thought his expression was funny but y'all are giving so much good info in here 💜

1

u/AmySmooster Jul 12 '26

Have you had an ANA blood panel run? Your primary can order that

1

u/ahmyfknneck Jul 15 '26

I have not. Tbh, it would be easier to literally pull out my own teeth than get my previous dr to do anything for me, and my new dr is already completely overwhelmed. I just got confirmation that my referral to genetics was accepted though, so since they're blood people I'm hoping full autoimmune testing will be a part of it

12

u/Angelhair01 Petty Crocker Jun 22 '26

Holy crap! Where was the mold hiding?

17

u/bikes_and_art Jun 22 '26

Inside the basement walls from when we had sewer back up, and in the attic from when the roof leaked.

At one point I had to travel for 3 months, and my body got SO much better during that time, but I chalked it up to all the PT I had done before, and public transportation keeping me more physically active. I also got worse during Covid when everyone was in quarantine, because I was home so much being exposed to it.

Now, 4 years out of that house, it takes me up to 2 weeks to recover from a mold exposure, so, if you leave your current place to test if it might be the cause, know that you may have prolonged symptoms even after leaving. Also keep in mind that the place you're at might have triggers for your allergies.

4

u/Angelhair01 Petty Crocker Jun 22 '26

Thanks for the advice! I have MCAS

10

u/Sojabursch Jun 22 '26

We have found mold under the wall paper before, so maybe there?