Ren’s Story

Site created on September 15, 2021

Hi loves. I'm not really sure how to do this. What I do know is that community and supportive people in my life have been so helpful as I've journeyed through the world of physical and mental health discoveries for most of my life. 

Before I dive into my story, here's a bit about what the heck this site is for. CaringBridge provided some words to use, since my brain is so ridiculously fuzzy, so here they are: Welcome to my CaringBridge website. I am using it to keep family and friends updated in one place. I appreciate your support and words of hope and encouragement. Thank you for visiting.

I don't even know where to begin, so I'll start with the present. I've just received the most validating diagnosis I've ever received from a doctor. It feels like all of the puzzle pieces of lifelong illness and chronic pain (and more recently mental illness) are finally fitting together into something that is recognizable, describable and... TREATABLE. 

My diagnosis is Chronic Inflammatory Response Syndrom (CIRS). I just received a bunch of information from my doctor and will try to update this as I am able to, and here is my best attempt at a summary of what this means. Basically, my body has some genes that do not allow me to properly process things known as biotoxins, the main culprit being mold and... I live in the Pacific Northwest. Ah, the irony. My body is, and has been for the past several years, in a constant state of "fight or flight" because it has been trying to process an overload of these toxins that it literally cannot process on it's own.  

Just about a month ago, I was referred to a doctor who told me she was committed to getting to the bottom of this, and here we are. Before that I had been tossed from doctor to doctor to doctor to therapist to other therapists to nurse practitioner to acupuncturists to craniosacral practitioners and on and on to try to figure out why the following symptoms have been present, and getting progressively worse, the past 5-6 years: heart palpitations, foggy brain/memory (forgetting words/needing to speak slower), headaches, dizziness and vertigo, ringing in my ears, light and sound sensitivity, nausea, GI issues (gas, constipation, diarrhea) pain/weakness/tremors in my muscles and body, excessive thirst and frequent urination (basically being dehydrated all the time), excessive hunger (hanger), extreme fatigue, shortness of breath, night sweats, insomnia, anxiety, depression (to name a few) If I go back further in my story, I can recognize different flare-ups likely related to mold and other toxins, but never enough to reach this concerning level of toxicity. Again, I am okay and this is treatable. 

In the past five years, I've been diagnosed with chronic anxiety with depressive flares from a therapist, was treated for vertigo by a physical therapist, diagnosed with IBS from a naturopath, and seen by so many doctors for "sinus infections due to allergies." I have also been told by many doctors over the years that I have chronic pain but that "we just don't know the cause - maybe from playing basketball all those years, or from the car accident as a teenager?" To be fair, as a teenager, I did have a herniated disc and damaged disc in my lower back, as well as mild scoliosis, which without a doubt, did not help any biotoxin situation at the time. Other doctors have researched chronic lyme (which I do have a marker for, but not enough to diagnose), as well as thyroid levels,  and then there's the ongoing research of my ferritin and iron levels, which are still pretty low (ferritin currently at 11, but iron is slowly climbing).  Long story short, the collection of all of these diagnoses, and then some, all fit the CIRS diagnosis. 

Between the physical symptoms and the constant strain of trying to access a broken medical system, this has taken a toll on SO much in my life. Relationships have fallen apart, including those with employers and partners, as well as my relationship to my own body and self (I've somehow also done the MOST work on these pieces during this time and ironically feel more connected to self and body than I ever have right now). This has DRASTICALLY impacted my ability to show up to work, especially this past year as symptoms escalated and insomnia and dizziness increased. I have just started nannying for a new family very part time (12-15 hrs a week) the beginning of September, and am still struggling to show up to work.

The good news is that, again... this is TREATABLE. It will be a long and tedious and EXPENSIVE road to get there, but there is finally a light at the end of my tunnel. First step is to remove myself from toxic environments, including the basement apartment I was living in the last 5 years. I am temporarily staying with my partner, but need to find safe and healthy longer-term housing soon. For the time being, with any new place that I will be spending significant time in (this includes the home of the family I'm beginning to nanny for, whatever place I eventually move to, as well as my partner's home) I will need to test it for mold (costs a couple or few hundred dollars per test). I will also be taking a medication that will help bind the mold so that I can eliminate (yes, poop) it out.  This will take time, and it feels good to be starting it soon.  The other toxin test that I will need after beginning detox costs a couple hundred dollars. It tests for the current presence of MARCoNs bc I have low MSH - the hormone that controls mucus membranes such as nose and throat and gut - hence the chronic sinus infections, IBS, etc. My car is also 15 years old and undoubtedly has many types of mold growing in it, so I am also trying to figure out how to purchase a new car.  Much of my belongings are still in the moldy basement, so I will also be trying to figure out what to keep and what to trash, and paying people to haul away large furniture items. While living at less than paycheck to paycheck. WTF. 

My cats are staying with friends right now and I haven't even begun the journey of investigating whether their symptoms have been "old kitty status" or from mold exposure. I haven't done any research about what it would involve to test them, but do know that vet bills can add up very quickly.

More good news is that I have a doctor who has experience treating CIRS patients and is supervised by a doctor that has even more experience with CIRS. My acupuncturist has also treated folks with CIRS and I will be continuing with both of them, thankfully at reduced costs, moving forward. I am also still seeing a talk therapist, who specializes in somatic therapy, weekly.  I am so grateful for this team of folks, and for all of the support I've received from so many of you that continue to love me through all of the scary-icky the past several years. 

This is as much of my story as I am able to get out with my energy levels/brain fog right now. I will try to update when I am able to. 

The most important thing I am asking for right now is patient and loving support, as well as financial support if you are able to. I set up a GoFundMe on this site here, which you can access by clicking on "Ways to Help" on the taskbar up there. I will also accept funds through Venmo  (@Ren-Myers) and PayPal (email is Thank you for ANY support you are able to provide. And really... I want to be connected with the people who know how to laugh and play, both of which are coping mechanisms for me AND ALSO super important for me to have in my life right now.

I will continue to provide updates about my journey through the "journal" portion of this site as I am able to. If I don't respond to texts or calls from you asking about updates, please come here. I am trying to minimize the amount of emotional labor I need to expend by telling multiple people over and over again. I love you all and cannot wait to be back at fully functioning Ren sometime in the future.

Newest Update

Journal entry by Ren Dirt

Hello there,

It's been quite some time and also not long at all. The changes that have occurred in this time frame are numerous and life-altering. Truth be told, I'm not even sure where I left off in my last update here, so I'll start with what I know to be true right now, and hope the rest of the details come out in the process.

Right now, I am sitting in a room in my partner's apartment, my two kitties sleeping on the bed next to me. My mom is in town and will be leaving tomorrow. Today, we will sort through the remainder of my belongings in the garage and decide what stays, what goes to thrift stores, and what gets trashed/recycled. The bed, this desk and it's contents, the chair, this laptop, various other objects strewn through this apartment, as well as a few boxes in the garage... make up everything I "own" right now. Stuff is just stuff. And also, when such a massive purge happens in such a short amount of time, it feels... odd. Gutted. 

In mid-October, I was told by my previous landlord, that I had just about 5 days to vacate the moldy basement I had been living in for five years (but hadn't inhabited to since early Sept due to my diagnosis), explicitly going back on written email agreements we had made the previous month. After pointing this out, she agreed to extend it to our originally agreed upon time, with no discussion about whether I would continue to house my belongings further, which was again in direct contradiction to what she previously agreed on.

I somehow managed to rally an amazing team of 2 friends and my partner to help clear everything out of my old home. At least 500 pounds of my belongings went to the dump, the rest went to my partner's garage. I spent approximately 4-5 hours each weekend day in the house with my N95 mask on and every window and door open, sorting through all of the things with these humans that  I love. This amazing team was unfortunately not able to finish all of the cleaning that weekend, so my rockstar friend came and finished it up all of their own, including scrubbing an oven that had been left completely dirty when I moved in. They spent several hours there, without me because of timing and mold-exposure. I lost so much that weekend, and also was reminded about the relationships in my life that matter the most. Unfortunately, my previous landlord described the place as "quite dirty," and deducted from my security deposit. I don't have the energy to say more about that story now.

I acknowledge that I am writing this while in a very dark place, crawling around in the shadows, and I acknowledge that there have been shining moments of brilliance that I am unable to reach or feel right now. Right now, it's like this. And that's okay, too. 

After spending at least 4 days and 10+ hours in the moldy  basement, as well as spending time in an airbnb (my mom came to stay with me the last 3 weeks and got an airbnb for me and cats to stay in with her... and it ended up being moldy), I experienced my first re-exposure symptoms. My doctor and I put the puzzle pieces together, recognized the familiar symptoms and the quick onset: dizziness, heart palpitations, body aches, shortness of breath, ringing in ears, teeth pain, seeing stars/spots in my vision, nausea, headaches. We recognized these symptoms, but only after I experienced a bout of vertigo while sitting on the floor with the child I nanny for (babe was okay and parents were there to take over - thanks pandemic?). 

Okay, I can't anymore with the writing today. I've more to write about - positive MARCoNs and strong biofilm and prescription on the way, kitty vet visit, car in the shop to get detailed and being overcharged, mold testing kits sent to multiple locations in this country, watching everything I own pretty rapidly go away, confused stares and questions when I tell people what's going on, learning that I might be on the mold-binder medication for life, forgetting more and more and then less and less, learning about the "VIP" (heh, yes, VIP) treatment nasal spray to regenerate brain tissue that the mold has destroyed, no home yet (just temporary resting places with much turmoil), a new challenge or twist/wrench in the plans/recovery process every day, not feeling human most days and then doing "normal" things like going to a pumpkin patch and the cognitive dissonance that accompanies, recognizing how FUCKING MUCH it takes to just be here in this body right now.

It's funny, whenever I would have those conversations with people about what I would do when the apocalypse arrives, whether it be natural disaster, virus (heh), whatever... I often would say that I'd just want to take the easy way out and die, because why the fuck would I want to survive that. What I didn't realize is that I've been in the midst of my own personal apocalypse at least the last 6 years or so and I somehow have proven the exact opposite. My will to live is so incredibly strong, my instincts fine-tuned. For some reason, I want so badly to still be a part of this world that I am fighting tooth and nail and gut and brain and heart and all the other parts of this body that are riddled with mold... in order to still be here.

Okay, I really think I'm done with the words for today. Thanks for reading my latest spew :)

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