"Chronic disease was a forest fire that burned my life to the ground. Once I stopped fighting the fire and let it burn away the things I had once thought valuable, I began to learn from it and accept where I was. The empty spaces gave me room for new growth and my life moved in a different direction." Gregg Kirk, "The Gratitude Curve.”
When you are sick for more than six months, you are considered chronically ill. When this happens to you, you quickly realize that even the most concerned friend will have no idea what an endurance event chronic illness really is, unless they’ve been through it. There are endless rounds of specialist visits which are prepared for like a job interview, considering the amount of prep work and documentation you provide for some of them. These appointments are merely lighthouses in a sea of waiting. Appointments, labs, imaging, and treatments are nothing compared to how long it takes to be seen, let alone taken seriously. The wait time to see a specialist was up to 13 months to see a neurologist. Years of your life go by, while you follow the protocols and manage a host of symptoms, and even as you get more information, it becomes harder to share. When I’ve shared feelings like this, friends fear they weren’t there for me. I reassure them the dinners, the childcare, the plowing, so many countless acts of generosity and kindness were everything to me. The people that checked in on me, in any way, were everything to me.
I’m talking about how hard it became, on my end, to share the truth about how lightheaded I was, how nauseated, how my pelvis had knives stabbing me on one side, then on all sides, then it never went away, not even with birth control pills, the Gynecological panacea. My joints were swollen and hot, and I had muscle spasms, tremors, feeling of shocks on my foot and face, and more. I had a wonderful primary care doctor at the time. She helped me in every way she could. Many people live with pain. No one wants to distill their life down to chronicles of pain or sparse and unsatisfactory updates from long-awaited specialists. I focused on therapy, self-hypnosis, exercise, nutrition, and following all the advice from a team of Western and alternative doctors. I kept searching for answers, because my labs and imaging were mostly normal. And every single day I wasn’t bedridden with pain or nausea, we lived our lives to the fullest. Like most women, I have a high pain tolerance, and I hid my pain whenever I could, refusing to stop trying to ski or hike.
When my youngest daughter was born after another hyperemesis pregnancy, it was complicated further by preenclampsia. The high blood pressure spikes didn’t lift with delivery, either. I was on bedrest for weeks postpartum, and my blood pressure remained unstable for almost a year. I had to stop breastfeeding her at four months because I was rapidly losing weight again. I felt faint all the time, my heart pounding out of my chest. My stomach churned and gurgled, anything I ate, I felt like I could feel every crumb pass through my guts. Night sweats soaked the bed two or three times a night; we could wring out my clothes and the sheets down to the mattress. I had migraines three times a week, but sometimes they lasted for days straight. This was on top of the other symptoms I had been dealing with already. I was no longer able to hike, swim, or bike. Not even Ibuprofen, salves, ice, physical therapy, chiropractic and more could get me out of the house most days. Over the years, I had used different methods to dull the stabbing and cramping pains in my pelvis and joints. The sharp pain in my hands started to bother me the most, since I was constantly changing diapers and snapping up my daughter’s outfits.I slathered salves, tiger balm, even Saran Wrap on my body (to heat up the Tiger balm) just to function. I have scars from heating pads, pale little circles on the small of my back and near my groin. My left foot began to go numb, starting with the pinkie toe and spreading to all three small toes. My anxiety was at an all-time high. We had once been a couple who backpacked our baby and a paddle board for miles to paddle Waldo from a private beach. We’d summited Paulina Peak (7984 ft) with Annie when she was less than a year old. I had always held down jobs requiring double-shifts and physical prowess; waitressing with heavy trays held high above my head, teaching over crowded classrooms and assemblies. Both jobs required projecting my voice and standing way more than eight hours a day. Now, my mother and my husband had to help me care for my own daughters, I was no longer capable. We used up all of our FMLA leave and then some, and he eventually took a work from home position because of my health.
Finally, we got more answers when my labs went haywire when my youngest baby was one. My liver, kidneys, cholesterol and hormone counts were all suddenly totally screw-ball. I had nonalcoholic fatty liver, which was ironic considering I’d been sober from alcohol for six years. The naturopath tested me for Lyme and I was a strong positive, by CDC standards, on two different tests. I begged her to treat me herself, having little patience for referrals at this point, but she insisted we see a Lyme specialist. She was especially concerned that I may have to be admitted to the hospital because of my cardiac and neurological symptoms. I began Lyme treatment in earnest, under the care of a Lyme literate MD from Bend, Oregon. Mallory has an MD, an ND, and an acupuncture degree, but his main passion and focus at this point in his career is Lyme, or what he calls tick-Bourne illness, or more often, “the critters”. Mallory doesn’t believe that Lyme is ever really the main problem when someone is sick like I was. Maybe all of us have Lyme bacteria, or at least all of us who, like me, bush-whacked our way through the wilderness as a rule, and not the exception. Most people's immune systems fight it off naturally, without medical assistance. But, when something else is suppressing the immune system, Lyme and other opportunistic bacteria (critters) can flourish. One of the first things he asked was if we had any reason to suspect that our house had mold. No, it’s new construction, was our reply.
Month by month, I saw small improvements in my health and energy level. I began to slowly put on more weight. I had also been diagnosed with Celiac disease, but my gastrointestinal distress never really cleared up despite being strict about a gluten-free diet, free from cross-contact. Refractory celiac was a concern, and a terrifying one at that. I still had migraines, sweats, and pain, but since being on the Lyme treatment I was having more good days. We were able to go on a few small one-night camping trips, the highlight of my summer, despite packing three changes of clothes for the night sweats.
I lived in a vacation destination for nearly fifteen years. I had always treasured visitors, taking time off from work and tour-guiding them through Oregon. Despite me sharing what was going on with my health well before their visit, it was a rude wake-up call when some family members made it clear; they were on vacation and that was not to be interfered with. Others enjoyed our home for a week and then made it plain when they returned they were resentful as hell about my headaches. The worst part was being told I seemed “perfectly fine” because I managed to keep my schedule when I could. I don’t think people realize what this does to someone’s confidence when they’re already trying to be their toughest. Another person stonewalls me anytime I mention Lyme, refusing to acknowledge it. When people don’t believe you, they don’t say it outright. They hide it, in passive-aggressive questions insinuating you must be exaggerating. It’s captured in silences or changing the subject after you share heavy news with a person that, despite sharing regularly with you, suddenly won’t validate the one thing that is the center of your life. “Isn’t chronic Lyme controversial?”I was asked. A nurse practitioner in the family heavily hinted I should be taking doxycycline. They never asked what we have already tried, or why I cannot tolerate the drug. Their patient was “fixed right up.” What was I supposed to say to these comments? It was a relief to get that diagnosis, yet it quickly turned to part of the nightmare. I felt more alone than ever.
Thankfully, most people do not question a sick person. In therapy, my husband and I learned to deal with the enmeshed family relationships, and to reflect on why we had fostered some of these one-sided friendships. Chronic illness really has burned our life to the ground, but deep down I was and am thankful. I exist on a deeper, more honest level emotionally than I ever have. Being so sick made me take nothing for granted, and I have immersed myself in my kids and the relationships that survived. Even during COVID, we were blessed with enough kindness to get us though the worst of times, but losing some of the closest relationships to me at my most vulnerable time is something I am still trying to understand. I had heard of this type of thing happening to the chronically ill, I just never thought it would happen to me. Everyone must think they are the exception, but the truth is there’s a percentage of people who are so deeply uncomfortable with things they don’t understand they cannot believe in someone else’s suffering.
Six months into Lyme treatment it was Christmas 2021, and I was only about fifty percent better. Dr. Mallory began asking again, with more pressure on us to look this time, about mold. On a hunch fueled by a late-night internet search, my husband tore apart a shower unit and found black mold in an improperly sealed shower door. Two days later, the motherlode of mold was found when we had our home professionally inspected. It was hidden behind insulation in an unsealed crawl space, and had been wafting into our home for years. The air quality was unlivable. We left our home in the middle of the night, threw out most of our Christmas gifts, and began the tumultuous practice of mold avoidance for the next eight months. We remediated the house, removing damaged materials, encapsulating unsealed areas, fogging and testing. But, this is not the end of the story for people like us. Now, coming up on eight months after finding the black mold, I still suffer symptoms of mold-illness, or CIRS, (chronic immune response syndrome.) It is a biotoxin illness, in very short summary. There may be a genetic component to being more sensitive to toxic mold. Everyone in my little family was sick from the mold, but why did I get sick first? When I looked into this, 25% of us may be genetically susceptible to CIRS. For all the skepticism I felt aimed my way, this is actually a common issue, and it’s being talked about more and more. At one time, “sick building syndrome” was more prevalent in the news. A few office workers would fall ill with nebulous and varying complaints (probably the 25% who are most sensitive to mold), but after a few months or a year, everyone is sick. The building needs mold remediation, and isn’t safe for anyone at that point. At first, mold may simply cause allergy-like symptoms in people and animals. But, long term exposure to high amounts in the air can cause organ damage, respiratory damage, cancer, dementia, mental illness and more.
It took years for the Stachybotrys mold to grow, slowly and without needing any additional moisture source besides the water molecules in the air. Needless to say, Stachybotrys is the perfect high desert mold. We bought new construction, but we made some common mistakes. The first one is assuming a new home in a dry climate would equal no mold. I’ve had many, many people tell me they consider anything black to be mildew in Bend. I believed the very same thing, and had always cleaned mold the way I was taught by my mother, with diluted bleach solution. The very first thing I was told by experts was not to use bleach. I laugh now when I think about that small learning curve when so many more were to come as we relocated as a family with CIRS. My husband and my children were also affected. I will keep writing about what happened to us, this is just the first installment in our story.
My writing brain is still coming back. One of the worst things was how it affected me mentally and intellectually. I still struggle with reading and writing. But, it’s coming back! As long as I stay away from mold…
Stay tuned for part 2…
You can find more stories of American who have suffered from mold-related CIRS here:
https://www.menshealth.com/trending-news/a39049886/mystery-illness-lyme-disease-emf-essay/
June 2021 just starting Lyme treatment