Where to next?
8 months ago my world came crashing down…
The day before I felt miserable at work but I was leaving to go out of town so I stayed at work late to make sure everything was in order before my long weekend with a friend. I was awoken with the most intense chest pain of my life. While in the ER, I had a moment where I knew I was seconds from passing out but also felt like I was about to vomit and defecate at the same time. I recall the CNAs caring for my dad at end of life describing this experience and thought I was about to meet Jesus. Seconds later, my heart rate came crashing down and I lost consciousness.
I was discharged from the hospital a few hours later without even removal of EKG pads and told by the nurse to make a right out the door. My friend with me said you should not be going home. I responded, “but I probably shouldn’t be staying here”. We both knew something tried to take my life.
I was misdiagnosed that day in the ER. I saw countless specialists. Some MDs had no advice on my diagnosis, referrals or how to return to normal… but I was persistent. I wasn’t living, I was surviving. Some doctors began slowly connecting small dots. When the pulmonology resident told me my ER trip could have been an asthma attack, I thought no way does an asthma attack make you feel like you will defecate yourself.
A week after my ER trip later getting a nebulizer treatment because my oxygen saturation was dropping as low as 78%.
I couldn’t drive for weeks. Friends helped with chores and meals while my husband was working out of town. I am so grateful one friend was able to be consistent and take me to all of my appointments because my brain wasn’t firing on all cylinders. I eventually got a temporary driving handicap tag to begin feeling independent. Luckily, the pandemic simplified my disabled life to get groceries and other essentials.
Eventually, my holistic doctor mentioned mast cells. I asked if that causes crazy histamine response because I had told the rheumatologist whatever that is I have it. He looked at me big eyed, almost shocked, and replied “yes”.
I began reading, researching, reaching out to local friends who I suspected might also have this. An old coworker connected me with a patient of hers who also had MCAS for years with lots of success. A pattern was happening, I was hearing toxic mold and it is a potential root cause for MCAS. My symptoms matched. And at the same time, I really felt a need to check work because it was always humid and moist in both office spaces I was placed. So humid, I had asked if it was okay for me to work in a tank top (not that it is professional).
Test results came back and I had a significant toxic mold exposure. My doctors were concerned with more tests and lab results and removed me from work a second time. There was significant concern for my immune system. I wasn’t allowed to get the COVID booster because no one knew how my body would react.
After I was removed from work, I immediately lost my need for the epipen and inhaler. The itchy and painful welts on my body receded (praise God). The ice prick scalp & tongue pain left within a week. My significant hair loss subsided about 2 weeks later. There were HUGE improvements immediately. What I didn’t realize was how bad my brain or anxiety was because I had no memory.
I interviewed mold inspectors for a week. The cost was overwhelming, but I knew we needed to be thorough in order for healing to be permanent. Mold can also be carcinogenic and after watching my mom’s battle with cancer, I would take an abundance of precaution necessary for my husband and I to avoid that. We had our home thoroughly tested (4 hours) and the mold that caused my toxin could not be found. The suggestion from the environmental hygienist (mold inspector) was “given the pandemic and that I had not been anywhere else in nearly a year besides work and home that work be inspected”. He discussed peer reviewed research that air sampling is highly ineffective for detecting mycotoxins, endotoxins and actinomycetes (at best with multiple samples, ~54% effective).
“The cost was overwhelming, but I knew we needed to be thorough in order for healing to be permanent. ”
Months later (and a persistent journey), I am beginning to see a glimmer of my old self. I gave my 30 day resignation to work knowing I couldn’t physically return because they refused to perform more thorough testing. I was fired 3 days later.
So here I am… continuing to heal and looking for a safe environment to work from and bring patients into. The task is harder than I imagined as I have tested a few locations that have failed due to multiple species of high water damage molds.