This is part three of a three-part series. If you missed the first two articles you can read them here:
From Mold Illness to Mindfully Healed, Part I: Discovery
From Mold Illness to Mindfully Healed, Part II: Clean Up
My road to recovery from mold illness, along with roughly a dozen other “mystery” illness diagnoses, was a rocky one. Ultimately, it was through embracing the power of neuroplasticity that I was able to get my life back. However, a lot of the therapies I tried along the way allowed me to stay afloat, and I can’t imagine how sick I would have been without them.
The pitfalls of a symptom diary
It was humbling to read through my old journals while compiling these essays. Well-meaning doctors and nutritionists recommended that I keep daily logs of the foods I ate, any new lifestyle changes I implemented, and the symptoms I experienced. This diligent journaling left me with years of notes giving me a mental image of how much I really struggled during that time. It’s kind of like giving birth, ya know? Once it’s over and you have that sweet baby in your arms, or you’re able to live a life free of dis-ease again, you conveniently seem to forget how hard the experience was at the time.
While it’s nice now to have those notes and to see how far I’ve come, focusing on every detail of my suffering day in and day out was like adding fuel to the fire. These journal entries kept me stuck to what I refer to with my clients as my Illness Identity. Continuing to focus on, and define myself by my dis-ease was the antithesis of the work I learned to do with my mind to heal. I quite literally became my illnesses and symptoms. They dictated the way I felt, the decisions I made, and the life I was living (or wasn’t living, really).
That being said, I’ve found inspiration over the years in reading the stories of others who have struggled with similar symptoms and have discovered a way out. If recounting my challenges from that time can offer the same hope to even one of you then it’s worth it.
Though I had already been diagnosed with CFS and fibromyalgia when we moved into our moldy home, my symptoms were amplified within weeks of living in it, and they continued to worsen during the discovery and remediation. A grain-free, dairy-free, sugar-free, Paleo-ish diet morphed into the need for low FODMAPs (a complex acronym for a collection of molecules found in foods that can be poorly absorbed by some people) as signs of SIBO (Small Intestinal Bacterial Overgrowth) crept up. My days consisted of doing what I could to get my kids off to school while my heart pounded from unexplainable anxiety, followed by Epsom salt baths, infrared sauna treatments, and multiple naps. When my energy was sufficient, you could find me in the kitchen preparing meals from scratch that excluded all the restrictions of whatever limited diet I was attempting at the time.
I often felt like my afternoon drives to the bus stop were more dangerous than those of a drunk driver after a night on the town! The brain fog and fatigue were mind-numbing. My quick temper and lack of motivation to be involved with my kids left me guilt-ridden daily.
Putting on a brave face
As with most hidden illnesses, I appeared mostly “normal” to everyone else. Though they couldn’t see it, always in the inner critic, I was embarrassed by my puffy face and pale dry skin. Beneath the surface, floating fibromyalgia pain and the constant cycle of wired-to-tired plagued me. My periods disappeared for almost two years. I developed a superhuman sense of smell (aka MCS or multiple chemical sensitivities) that kept me from even taking walks down the street for fear of smelling the neighbors’ dryer exhaust. Anger (at those around me, as well as at myself and my body) had become my new norm.
Signs of hope
Then, somewhere along the line, I began to pick up that stress would counter the positive benefits of the therapies I was attempting. In re-reading my journals, I noticed that in times of joy, when I was able to escape from the Illness Identity and all that was wrapped up in it, I actually felt good. Conversations on the beach, having friends over to dinner, doing karaoke with my son… these small moments of ease took me out of my disease-related routine, and the joy put my body into a place of peace and calm. I found snippets of this in my journals, but it took me awhile longer to put all the pieces together.
In the midst of the remediation, I realized that “mold illness” was a real thing and, after much research, decided to reach out to a CIRS specialist. My Shoemaker protocol doctor couldn’t have been more compassionate and thorough. He ordered all the lab tests and found that I had seven of the ten markers for Chronic Inflammatory Response Syndrome, including the HLA-DR “dreaded gene.” Receiving five or more abnormal results indicates a diagnosis of CIRS. He started me on the first step of the protocol, which for me included Welchol instead of Cholestyramine since I’m so sensitive to medications. Being told that I would have to avoid moldy buildings and be on medication for MCS for the rest of my life didn’t sit well with me. I had been shackled to dis-ease and had been living in a bubble for many years at this point, and every part of me just wanted to be free.
In retrospect, I noticed that my journal focus around this time had changed from a food diary and symptom inventory to a list of small gratitudes each day. Awareness of these happy little moments, learning to feel into them as they unfolded, and then reliving them at the end of the day as I wrote, was becoming a new form of treatment for me.
Pieces fall into place
Within weeks of my comprehensive Shoemaker protocol appointment, a neuroplasticity specialist that I had learned about years ago through my functional medicine doctor happened to be bringing her program to my hometown. This serendipitous turn of events was a clear sign to me that there was another way. The program that was designed for people suffering from MCS, CFS, fibromyalgia, and EHS, was founded on the brain’s ability to rewire itself. The process of recovery involved targeting brain function instead of continuing to chase symptoms. Years ago, when I was first introduced to this idea that the mind could play such a pivotal role in correcting an unconscious stress response at the root of my illnesses, I was intrigued, but skeptical. Several more years of mainstream and alternative treatments would ensue before I came full circle and was ready to embrace this mind-body work head on.
I have no doubt that a healthy diet and lifestyle will always be essential if I want to continue to thrive. And, while I feel sure that the medicine I took for a few months was beneficial and helped me detox a good bit of the mold, I firmly believe that it was my daily neuroplasticity practices that truly gave me my life back. If your mind isn’t playing for the same team, then all the other protocols are being sabotaged by your opponent. I like to think of my daily mind-body practices as my greatest health insurance policy, allowing me to live a life of peace and joy, free from the shackles of dis-ease.
In service to others
It didn’t take long for me to realize the health results in the form of more consistent joy, increased energy, and a dissipation of my myriad of symptoms. Soon after, I ditched my master’s in nutrition for a master’s in health & wellness coaching. The program I completed is very much in line with the mind-body work that I gravitated toward myself. I then became a Martha Beck certified coach to get a more well-rounded (and truly unique) training experience so that I could combine all the wisdom I had gained on my health journey with the knowledge required to serve and inspire others.
ADDITIONAL RESOURCES (binders and detox tools):
castor oil packs
Epsom salt baths
Takesumi Supreme - *I have not used this personally, but it comes highly recommended by Jennifer at Predominantly Paleo
Far infrared sauna - After much research, this is the one I chose for its low EMFs and solid poplar wood
Free Your Mind Program - Disclosure: This is the neuroplasticity-based program I offer my clients to help them overcome “mystery” illnesses including CIRS.
Check out my recent interview with Heather Tesch as we discuss the origins of my multiple mystery illnesses, the one-two punch that was this CIRS diagnosis, and how I ultimately healed from it all...
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