the long version

It’s that time again when I come back to my blog after almost a year away because I now have something to write about!

Because I can’t remember (more on that in a moment) what I’ve written on here and don’t feel like re-reading to find out, I’m going to assume I haven’t talked at length here about my Mysterious Illness. So here’s a brief recap: for the last 10 years or so my energy has been steadily decreasing, while brain fog, anxiety, heart palpitations, depression, fatigue, post-exertional malaise, terrible short term memory, degrading long term memory, and chronic inflammation and pain have steadily increased. I’ve been to many doctors, alternative medicine practitioners, and had so many tests done, only to mostly be told I’m fine (even though I can barely muster the strength to take a shower most days and can’t sleep at night because I’m so inflamed that any pressure on my body causes flu-like aches that keep me awake). When I could no longer pretend I was a fully functioning human being anymore back in 2018, I finally started seeing an integrated medical doctor who actually took me seriously AND pursued answers with me (my GP was useless), and we discovered a couple abnormalities that, when treated, helped a bit.

Over the last year though (2020, amirite?), my symptoms have gotten much worse. So bad that every single day I have that intense lactic-acid-build-up-feeling of soreness you get after over-working your muscles when you’re out of shape, except I’m not doing anything of the sort (I’m lucky if I can walk the dog a few times a week). (Turns out, lactic acid build up is exactly what’s happening because my microcirculatory system is effed up. More on this in a moment.) When I lie in bed, I constantly have to toss and turn because anywhere there is pressure on my body that lactic acid starts to build up. Sleep, as you may have guessed, has been very hard. And all this time I’m thinking I’m dealing with Chronic Fatigue Syndrome (which isn’t well understood anway) but this PAIN. It is something else.

So all year I’m like this, some weeks worse than others, no weeks remotely as functional as I was even the year before, accumulating more and more symptoms as time goes on. Then, we had someone come out in early November to inspect our basement and found out we have mold. As a person well-enough-versed in environmental health concerns thanks to growing up in a home that leaned heavily in the direction of “alternative” medicine, this rang a bell. I also know I tend to get worse every November (the heat gets turned on in late October and we have forced air). Not to mention, my symptoms became significantly worse in 2020 after I started working from home full time. So I brought the mold up with my integrative medicine doctor who immediately admitted that mold exposure was outside of his wheelhouse and referred me to a functional medicine doctor who is also an expert in environmental & chronic illness.

SO, I saw her for a consultation, she ordered a BOAT LOAD of tests, and lo and behold: mycotoxins. Like, a LOT. Like, so many that my numbers are BEYOND the scale used in lab tests. Also other test results that were bad enough to make my doctor go “Wow…I am surprised you are even upright.” when she reviewed them with me.

Mycotoxins are, according to the NIH, “secondary metabolites produced by microfungi [mold] that are capable of causing disease and death in humans and other animals.” So it’s not exactly the mold itself making me sick but, like, their waste? (I’m not a scientist but it sounds like Spice to me. HIGH FIVE FOR FINDING A WAY TO FIT IN A DUNE REFERENCE, ALWAYS.)

So in my (new) doctor’s words (paraphrasing because my memory sucks), “looking at you, on a scale of 1 to 10, 10 being on your death bed, I’d say you’re pretty healthy, 1 or 2 . Looking at these lab results, I’d say you’re an 8.”

This is not something you want to hear, but also it kind of was? Like, finally someone knows how sick I am. Finally someone knows, not just believes, that I have not been being a giant baby/making it up in my head.

Mycotoxins cause a broad spectrum of problems, and because all the systems of the body are interconnected, basically all my systems are fucked up: cardiovascular (my newly diagnosed arrhythmia, POTS/dysautonomia, and also my very low anaerobic threshold which causes that lactic acid build up I mentioned earlier), endocrine (my low T3 and adrenal insufficiency + crazy low stress tolerance), neurological (brain fog, weak cognitive stress tolerance, and a pretty awful memory these days), and immune (autoimmune activity, insanely high levels of inflammation). I probably left something out but, hey, shitty memory.

If you’ve ever dealt with an illness or injury that took a long time to diagnose you know there’s a complicated mix of feelings when a doctor finally tells you there’s something wrong with you. And there’s even more complicated feelings all those years your doctors tell you you’re fine and low-key hint the symptoms are in your head. It’s akin to gaslighting (I know this is the buzzword of the decade, but it’s also the zeitgeist IMHO), only doctors generally aren’t trying to manipulate you, they’re just…ignorant. And probably arrogant.

But it DOES something to you, truly. I was so overwhelmed when I got my diagnosis that I didn’t understand everything I was feeling at first. I was a lot less happy than I thought I’d be, partly because of the price tag of treatment. I won’t say how much, but let’s just say I had $5k set aside for working with this doctor and it was laughably short. (I am EXTREMELY BLESSED to have generous parents with the means and desire to assist here. Many people are not so lucky). But there has been a lot of grief, too.

As I processed the reality of my illness, or rather the validation of its reality and severity, as well as my own experience, I realized I had not been allowing myself to really inhabit my feelings about it over the years, other than intense frustration. I didn’t think I was allowed to be desperate, or desperately sad, or grief-y about it, because of all that unintentional gaslighting. Because even as I got worse and worse and literally felt like I was dying and my body was just very slowly shutting down, part of me wondered if it was just “in my head,” or I was just “being dramatic,” or being a hypochondriac about “a bunch of little symptoms.” There was always this consideration of “well, I can do all the normal things that require use of my body, it’s just not pleasant and I’ll be fucking exhausted for weeks at a time afterwards…but maybe I’m just being lazy?” Like, I can deadlift 150lbs on my first try but I will fuck up my back…

But I had been reaching out for help (something that’s hard enough as it is for me to do; thanks Puritan Bootstrap Culture!) over and over and over again, and I was consistently told over and over and over again that there was nothing to be done, nothing physically wrong with me, nothing that exercise and diet couldn’t fix (hint: those things cannot fix it and can in fact make it much worse). I had been desperate to get better. And since I was not getting better, I considered this illness a moral failing on my part, that I must be doing something wrong because not only could I not make myself better, I couldn’t even seem to make doctors to believe there was anything wrong with me, or find the right doctor to treat me.

This doesn’t mean I didn’t have people who believed me. I did. Some people didn’t and don’t understand the severity of it, but I have enough people in my life who are living with/know someone living with chronic illness that they get it. But I constantly felt (and still feel) like I had to defend and explain my experience to people in a way that was real to them, and it was/is exhausting. (I did it here in this blog post, too. Whatever. I’m going through some things.)

Anyway. Why did it take so long to get a diagnosis? I can only guess. Maybe it’s because I had almost no typical mold exposure symptoms: no sudden onset of anything, it was all gradual, and I don’t have any allergy-like reactions to the mold like coughing or sneezing or red eyes. Maybe it’s because I “look healthy.” Maybe it’s because western medicine is always about 20 years behind reputable alternative medicine (I was just recalling with a friend earlier today that 20 years ago candida albicans overgrowth was a “quack diagnosis” and now I’ve known handfuls of people being treated for it by MDs over the past 10 years).

So I don’t fault my GP for not being able to figure out what’s wrong with me. There’s major problems with how America does healthcare and we all know it. I don’t have the energy for that here.

TL;DR: I’m really sick and it took years to get a doctor to take me seriously let alone get a diagnosis, which low-key felt like gaslighting, and now I have FEELINGS.

So I have at least a 12 week road of intensive treatment that will hopefully lead me to recovery and healing. I had my first batch yesterday and, well, I peed blue this morning. ¯\_(ツ)_/¯ I will update again…soon?

Update: I wrote this 4 weeks ago and never posted it because *fatigue* but so far I am feeling a lot better! Still can’t do much physical activity but I’m not in nearly as much pain, and I have enough energy most days to both cook dinner and shower if I want to.


2 Responses

  1. I’m so glad you finally figured out what the problem was and have a doctor who is able to treat you!

    I have been in the same place with thinking I’m just “lazy” and if I try hard enough I could do normal stuff. I’ve also had my share of experiences with some doctors, some friends, and even a few family members who thought my symptoms were because I was a woman or because I was manipulative or some other type of gaslighting. Being chronically ill is surreal sometimes.

    Here’s hoping you continue to heal and feel better! Thank you for writing and posting this. It made me feel seen, aw well.

    1. Thank you! It’s always kind of hard for me to post about this stuff because I feel like so many people have written my experience off, but I always think about how hearing about other people’s similar experiences has helped me feel seen, too. Without talking to other people who have been through similar things I might still be in that “I’m just lazy” place. <3