Battles and Blessings: My Struggle with Mold Illness
“You got this.” “Praying for you Kaylee!” “Love ya.” Tears rained down on my phone screen despite my best efforts toward a clandestine cry. Glancing furtively around the dim study room, it seemed that no one had picked up on what was my first loss of emotional control in a long time. I leaned back in the rigid plastic chair with a sigh and my wet pupils gazed at the city lights just starting to illuminate the bluey dusk outside. Tonight, I would begin a medication that would continue my now fourteen-month-long journey to heal from toxic mold syndrome, which I was finally diagnosed with in early September. However, my naturopath had warned that the medication would make me feel worse before I improved. Each salty droplet illuminated by the blue light of my iPhone contained old anxieties I suffered at my lowest, sickest points along my long journey toward recovery. They slowly crept back as my heart filled with the fear that I would be again confined to my bed, unable to commit to any activity and barely able to go to class just like I was a year ago, all because of six little red pills a day. However, the reminder of the loving Christian community that I have been so fortunate to find on campus during my healing was equally tear-jerking. The ordeals I endured through God’s grace and the support of loved ones came flooding back to me in that humble study room this week, and I will now attempt to convey the transformational nature of my health struggle and the lessons it taught me. Hopefully, my story can encourage you in this season of life. In the words of one of my ballet idols who suffered a thyroid illness before recently returning to the stage ten years later, “"If I can help at least one other person with my story, then I'm happy to have gone through it and I would go through it again."
My loving and supportive small group from a recent Gonzaga Mission and Ministry retreat
It all began when I returned from a wonderful three month study abroad experience in London during the Fall 2018 semester. Lying limply on a tepid blue table, I squinted into the harsh fluorescents that bounced off the sickly green curtains as the ER nurse told me I probably had some strange form of the stomach flu and that it would go away. Some anti-nausea medication to get me through the approaching flight back to school was thrust into my hands and I was sent on my way. Weeks later, I still felt incredibly ill. One bite of any food, even as innocuous as an egg, could land me in bed for three days. Thus, I developed intense food anxiety: I ate only things I knew would not bother my stomach as much, which constituted a meager diet of saltines, rice cakes, rice, plain pasta, sweet potatoes, chicken soup, cheerios...pretty much all bread or grains in different forms to create the illusion of variety. If anything in my fridge was even a day expired, I would not eat it. I hated the feeling of fullness as it meant pain and indigestion loomed ahead. I was so confused--even foods I felt were healthy and did not used to bother me, like nuts and eggs, were not tolerated by my stomach. Pretty much anything that came in a wrapper spelled doom. This left me feeling so fatigued that I could barely get up in time to drag myself to class, during which the only thing I could focus on was trying not to throw up. Crippling paranoia surrounding the latter forced me to choose the seat closest to the door in every class. I would then trudge back to my dorm, draw the blinds, turn on my heating pad, pop some Tums and gum in a futile attempt to ease my nausea, and sleep until my next class, waking just long enough to do the necessary homework for the eighteen credits and internship I was enrolled in.
Sick me happy as can be because a nice Olive Garden waiter brought me a plain breadstick with no cheese, butter, or seasonings. Eating out while in the thick of my illness was next to impossible, so having an understanding server meant the world.
Unable to commit to any sort of socialization or extracurricular obligation due to the fact that my symptoms fluctuated heavily minute to minute, some friends could not understand my inability to spend time with them and grew distant. Others, though they cared about me, could not handle my somber countenance and complaints of constant pain. Some acquaintances either completely unaware of my illness or ignorant to its magnitude would even say, “You look great, you’ve lost so much weight! What’s your secret?” I remember staring out at students milling about on the quad and wishing to be able to walk across campus without getting winded, to eat lunch without the promise I’d be in so much pain afterwards, to go about my day even if it was the most boring, mundane, normal, routine ever. The day I did not hold on to the railing going down the icy concrete steps of my apartment on a dreary February morning, slightly wishing that I would fall and that would be the end, I knew I had sunk into a deep depression that I wanted so desperately to get out of. All I wanted was a diagnosis--to know what was wrong so I could at least start working towards healing. Without a label for my mysteriously intense, long-winded symptoms, I could not obtain disability accommodations and got strange looks from people who asked what was wrong and my honest answer was, “I don’t know.” Oftentimes, they would respond with a crippling, “well, you look fine” and a look in their eyes that said, “so you must be fine.”
But I knew deep down that something definitely was not. While at school and into the summer, I underwent every test that Western medicine has to offer-- I swallowed radioactive oatmeal, drank a water bottle full of a metallic, lead-y tasting contrast solution for a scan of my abdomen over five hours, had exploratory surgery to look for endometriosis, and drank multiple sugary solutions to blow into balloons and tubes over a few hours. Endoscopies, colonoscopies, and blood tests became a commonplace routine. No amount of Tums, Pepto Bismol, anti-inflammatories, or any over the counter or prescription drug gave me any kind of relief. I met all kinds of doctors as I found myself in some kind of medical office almost daily over the summer--some were amazing, and others were downright horrible. I learned to advocate for myself and to look for even the smallest blessings in this hellish ordeal. All my professors were incredibly understanding and kind after I informed them what was going on and asked for their support. I was blessed with a writing internship with an understanding boss that allowed me to work from home. A kind receptionist went above and beyond to accommodate my schedule and recommend a skilled doctor with a great bedside manner. A neighbor who had suffered similar health problems came to visit and encourage me, getting me out of the house for little walks with her adorable dogs under shady trees in the park. A friend who lives far away drove up to my house to just sit on the couch and watch shows with me because he knew I could barely stand to be in the car due to my nausea and thus had great anxiety to leave the house. Another friend rubbed an oil from the Philippines on my stomach because hey, I hadn’t tried it and maybe it might work. I got to spend more time with my mom at home and in doctors’ offices, and experienced the radical love of my parents--they were with me every step of the way, dropping everything and doing anything it took to make me the most comfortable and happy. My family visited our house often for barbecues. I experienced community with my neighbors for the first time, as I was unoccupied with my usual social and professional pursuits and was able to attend their gatherings. My best friends sent me memes to distract me from fear before medical procedures and the pain that ensued afterwards. They sat with me and just hung out, not caring how bubbly I was or wasn’t, because they liked me for all of me. They stocked their pantries with rice, ginger tea, and other food I could eat and cooked up special bland renditions of whatever was being served at group gatherings without me even having to ask. They covered their grimaces with smiles and thumbs up when they tasted the tummy-friendly “cookies” I tried to bake because I desperately missed dessert. I found a great community of Christians on campus and experienced a lot of joy and peace from their fellowship and prayers. Even in my lowest, angriest, saddest, most frustrated moments, I found myself being drawn closer to God even when all I was doing was pushing Him away. Church and worship music became my saving grace, and continues to recenter me when all I want to do is quit. I experienced God’s true, unbridled, no-strings-attached, radical, unconditional love through my family, friends, neighbors, doctors, and even strangers, and for that, I am deeply touched and forever grateful.
Just a few of the supportive family and friends in my life
I also learned what it really means to rest. As the end of summer was nearing and I still had no answers, I began to seriously consider whether I was physically able to return to school. I knew I could not endure another heavy semester with a chronic illness, but also did not want to stay home as my type-A personality would drive me insane and my friends were a great support system that I would not want to go without for too much longer. Plus, I just wanted to graduate. I knew going back to school was the best option for me, but the question was how? Staring up at the cloudless blue sky as I occupied my familiar spot laying on the chaise pleasantly warmed by the sun on our porch, I came to a simple but almost comically groundbreaking realization: “I can QUIT things??” I jumped up and grabbed my laptop, hurriedly pulling up my four year plan to see if my epiphany was actually true. Much to my surprise, it was. While cutting out the job and internship I had lined up and pushing a few classes to spring semester was quite painful, it was also calming and freeing.
Still, getting on that plane back to school feeling like crap with no answers after over 20 negative tests was one of the biggest leaps of faith I have ever taken. Since it seemed I had exhausted all my options in the realm of Western medicine, I scoured the internet for a naturopathic doctor near my university for days before coming up with someone whose website looked credible enough to call the office. This decision was pivotal in my healing journey. I was met with the most thorough and compassionate service I had received--the doctor was almost like a detective, sleuthing through the clues I had provided in an extensive questionnaire that took me four hours to complete. Within a week of being back at school, I finally got the I had suffered ten months for--Toxic Mold Syndrome and Candidiasis. Apparently, the latter had made me more susceptible to the former, which was caused by exposure to mold in the dorms where I studied abroad. According to my naturopath, while many people have mold in their system (since mold spores are carried in dirt, it is almost unavoidable), it takes a stressful event (which, for my anxious self, was an international flight) for the symptoms to be triggered. Suddenly, all the dots were connecting--but I still had quite a bit of healing work looming ahead.
I was put on a rigorous low carb, low sugar diet to starve the candida bacterial overgrowth in my gut as well as a rigorous supplement regimen, and I endeavored to turn my entire beauty routine upside down by making sure everything I put on my body was nontoxic, down to the plates I eat off of. Still suffering from insomnia as one of my many mold symptoms, I made a point to finally stop all electronics an hour before bed, which worked surprisingly well. Additionally, I did an intense month-long digital detox to improve my mental health. While I struggled with intense sugar cravings, was stressed out by shopping trips slowed by meticulous label-reading, and became exhausted by my constant pursuit of healthy decisions, I slowly began to see small yet incredibly rewarding steps towards healing. I went from still drinking Ensure and eating saltines at the beginning of the semester to expanding my diet to include things that once caused me severe pain, slowly conquering old food anxieties. Friends and acquaintances began to notice the color coming back into my cheeks and light returning to my eyes. I could get through a whole day of class without napping. As my energy levels increased, I began exercising again--the gift of moving my body daily is one I will never take for granted hereafter. Throughout the process, I was blessed with amazing random roommates who drove me across town to my naturopath, took me shopping for nourishing groceries, listened with a compassionate, loving ear whenever I was down, tried new workout classes that I would never have dreamt I would be able to do at this time last year, and continue to be an incredibly loving presence this semester as well.
Feeling myself in my new workout clothes…I am so happy to be able to move and dance again!
While each day is a fight to think abundant, healthy thoughts and make choices that will support my health inside and out, I cannot help but feel so blessed when I look back and see how far I’ve come with the support of so many people. I never thought I’d say I was thankful for this roller coaster of a situation, but it taught me what it truly means to be healthy and showed me just how much love there is in my life--it was one thing to know I am loved regardless of how productive or fun to be around I am, but it is an amazing thing to truly believe and feel it. I never could have fathomed that I would be able to take a post-grad job across the country when I was in the thick of my illness, but now I sit here incredulously typing these words with a huge grin spreading across my face. I truly cannot wait for what is to come, and I thank you all for taking a moment to immerse yourself in my story.
Just a few more of the amazing people who helped me every step of the way!
