Frustrated with health and not being believed

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rebelsue

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Frustrated with health and not being believed
« on: September 07, 2019, 10:49:59 PM »
I feel like I'm crazy.

I am in a hotel right now spending money I don't have because my apartment became infested with black mold when I was away on a trip. In fact, it was probably brewing for years because the air vents have always had black stuff on them but I thought it was just stains. When I came back and saw it pouring down one of the walls right where the air hits the wall, I called my landlord. When the guy came to deal with it (2 days later)  he said it was really extensive and even contacted the university for advice. I was starting to have symptoms that are kind of hard to describe and I can't seem to have much luck Googling them.

My symptoms are non-official, non-medical terms.
1) Excessive mucus stuck in the back of my throat that makes me swallow constantly
2) a "yucky" run-down feeling with periodic chills
3) a raw, sore throat and gastric reflux
4) the weirdest one of all -- a brain fog type of head sensation that feels like I'm high (like weed high) and can't think clearly and just want to stare

These are NOT the symptoms that most credible sources report for mold exposure. They aren't even on the list of rare symptoms. Most of the symptoms are respiratory and the only one vaguely respiratory is the mucus thing. I am not having asthma symptoms or difficulty breathing. Also these symptoms go away when I'm not in the apartment.

So naturally I feel like I am making all of this up and being dramatic, wasting time and money. I tried to stay in my apartment and convince myself it was all in my mind, especially after they cleaned it up. But after 3 hours in my apartment I started getting that "high" feeling and I got really scared and had to leave. I immediately started feeling better once I got out of there, and by the next morning after sleeping in a hotel, I felt normal but tired. This happened each time I'd go back to my apartment so I decided that yes, I really did need to get out ASAP. My landlord is really annoyed and despite that, has offered me a chance to move to a different unit that she had open.

I am in a hotel room which will end up costing upwards of $500 by the time I can move, which is Monday. I want these hotel expenses reimbursed but whether I ask her or try to sue her, I have no evidence that I was affected except subjective symptoms. I tried to go to a walk-in clinic and ask if they have anyway of objectively evaluating a person for mold exposure but they said no. They recommended that I call the health department but going on their website seems like they don't test people either. The only places I ever see testing for mold are on cuckoo natural medicine websites, which makes me really angry.

I have a long history with natural medicine, and it is one of my traumas. Dare i say a Trauma with a capital T. Anything from that world has very little credibility to me since I have been on the inside. I went so far as to attend a semester of naturopath school. I was obsessed with natural medicine for a decade and got as far into it as I possibly good until it all fell apart for me and that worldview was beginning to harm me more than it helped. My medical issues at the time were solved with drugs and surgery - a thing I never imagined was possible. I am now getting a Masters in Cell & Molecular Biology so I am qualified to at least assess whether a medical claim seems plausible at this point. I'm not an expert, but I'm much more of one than I was in my natural medicine days and at least have the education to read scientific journals and understand mostly what they are talking about and familiarize myself with a particular subject.

But at the same time, the natural medicine world DOES acknowledge some of these weird unofficial but very very common symptoms, even though the treatments they propose for them and the biological mechanisms (if any) they offer are complete bunk. Spending time in sick people communities online has taught me that these things I'm describing are definitely common. I know that most scientists are not sick people -- you don't meet many chronically ill people who can handle the demands of academic research life, thus there is an understanding and empathy gap. Things that are vastly common in sick communities are not heard of by the people with the ability to study them.

I am not a medical researcher, so unfortunately I can't be the one to work on it. I decided a long time ago that I wouldn't go into medical research because it would hit too close to home and my work would be too triggering and it would bias my approach to it. I work in food safety, which is on the periphery of medicine since I need to learn about foodborne illness but I don't deal with treating it in patients - I deal with preventing it in the food supply chain. But anyway. I don't know why I'm spending so much time explaining myself but I am really scared of being triggered by someone telling me something I've already thought about for years, which is common online.

I wish it was possible to actually find real information about mold. I feel like I'll never know what really happened. There are no reliable medical tests except ones offered by unvalidated alternative labs and naturopaths. I can't get any evidence to use in a law suit to get my money back for this hassle. I feel like CPTSD causes things like this to happen to me somehow. But my abusers didn't put mold in my vents, and neither did I. It's just another thing on a long long list of back luck coincidences that have plagued my life for 38 years. Why do people with CPTSD seem to have such sensitive bodies where we end up with weird unexplainable medical symptoms that nobody believes, and why do we have such lousy luck in life???

Sometimes it feels like this is a simulation, that we're all in a video game and my character was programmed to have a lifetime of chronic inconvenience that slowly drives me mad. And I'm not even a gamer, this just seems like the most logical explanation to me now because nothing in reality makes any sense at all. Why can't people study mold? Why can't we know if brain fog is a real thing? What if I kept getting those symptoms because I was afraid of mold, and they were actually panic attacks, rather than actual mycotoxin exposure? What if I found out that it was a cold or "just stress" and I didn't even have to move? What if all of this was unnecessary drama? The symptoms are odd even for panic attacks, though so I don't know! What does it all mean?

My breathing has always been fine. None of this makes any sense at all. I'm so angry.

« Last Edit: September 07, 2019, 10:55:25 PM by rebelsue »

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Jazzy

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Re: Frustrated with health and not being believed
« Reply #1 on: September 07, 2019, 11:54:54 PM »
Sorry to hear this has upset you so much rebelsue.  It doesn't seem like a very solid answer, but CPTSD is a stress disorder, and constant stress regularly has those effects on people (weakened immune system, high sensitivity to difficult situations etc).

About the medical tests; in my experience it comes down to how much time, effort, and money you throw at the problem. There might not be a mold test specifically (without a biopsy), but there are a plethora of respiratory tests, x-rays, etc. that can be done. A GP can do the basic ones, specialists exist for advanced ones. There are a lot of brain chemistry and other tests that can be done too, but they're not common yet, so you usually have to pay a university, or be accepted as a test case.

I believe you about how you describe your symptoms, nothing would really surprise me anymore. To get back to something practical, I would have your GP check you out for respiratory problems and based on that you can decide if the symptoms are likely from stress/anxiety, or from a more external source. Either way, I hope it passes soon. Take care! :)


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rebelsue

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Re: Frustrated with health and not being believed
« Reply #2 on: September 08, 2019, 12:26:30 AM »
Honestly, I am not having respiratory problems. That's the thing. Just malaise and mucus. My breathing is fine. So probably nobody is ever going to believe me.
« Last Edit: September 09, 2019, 03:18:42 AM by Kizzie »

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Blueberry

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Re: Frustrated with health and not being believed
« Reply #3 on: September 08, 2019, 11:20:45 AM »
How about you get a GP or a specialist check out your other symptoms e.g. mucus?

fwiw I've had decades of excessive mucus stuck in the back of my throat, from childhood on. It turned out cptsd-related. When I feel I have to swallow anger down, or I want to speak up about something but can't, I get it a lot.

I believe you're having all these symptoms. But have no idea if it's on account of mold or stress or something else.

If you scroll down in our Books page https://www.outofthestorm.website/books-1 you'll see Teh Body Keeps the Score by Bessel van der Kolk. An enlightening book for many of us who have physical symptoms due to cptsd. Idk that that is what you have, but it could be.

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rebelsue

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Re: Frustrated with health and not being believed
« Reply #4 on: September 08, 2019, 02:07:29 PM »
I have the mucus all the time and it gets worse or better at random. I've tried for years to connect it to something but nothing seems to correlate. it seems worse since coming back to my apartment. I'm afraid to try to see a doctor after being turned away at Med Express. I think it will make me sound like some crazy mold person who is afraid of 'chemicals' and other modern day boogiemen.

I did read parts of The Body Keeps the Score. I found the book annoying because it was so much about the author's academic career, which I just wanted to flip through to get to the actual science and stuff that would help me. After a while I caught myself skipping past most of the book and just gave up. I understand the cortisol/immune connection. But nobody seems to know what to do about it.

I'm not just shooting down everything people say, I've just heard it all. I crave something new.

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Three Roses

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Re: Frustrated with health and not being believed
« Reply #5 on: September 08, 2019, 04:37:54 PM »
Have you tried Chakra work?