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 myers.bren@gmail.com). 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.
