You don't "get better," you cope.
I still had a poverty mindset when I got very sick during the COVID-19 Global Pandemic, meaning I did not go to doctors. $40 co-pay? I don't have it. Blood draw + chest x-ray? How much will that cost? You'll tell me after I have them both done and you've contacted my insurance? Absolutely not.
But then, my health and paycheck-to-paycheck lifestyle collided violently over the course of four eventful months.
December 2019 - Amazon Rainforest, South America and New Orleans, Louisiana
"Does my face look swollen to you?" I asked my friend and travel buddy in our shared hostel room before we headed out on a bike ride through the rainforest.
"No," she said with a casual glance in my direction. "Wait, hang on," she corrected when she turned to see my jawline fully. "Yeah, it's a bit swollen on the bottom."
"Damn," I whispered, vanity creeping in as I studied my slightly misshapen face in my pocket mirror. However, that didn't stop me from riding, hiking, and canoeing through the Amazon for the next three days.
Maybe some weird Colombian bug bit me and made my face swell up, I convinced myself.
Getting home for Christmas, my eldest sister immediately noticed my face and asked what was happening.
"I don't know, but it looks awful!" I pouted in the passenger seat as we drove up to Virginia to spend Christmas with the rest of the family. She quickly detoured to the nearest urgent care against my will with the promise that she would pay any co-pay or visit fees.
Wallet safe, I waited more than an hour to have a blonde haired, white woman tell me that my parotid glands were swollen - something that "just happens" - and that I should buy sour candy to suck to get the excess saliva out.
Suck sour candy; you'll be fine.
That was literally the medical advice that cost my sister $40 and made us late for Christmas vacation, Day 1. That didn't exactly improve my opinion of doctors as gold diggers.
January 2020 - New Orleans, Louisiana and Andorra la Vella, Andorra
"I have a clean bill of health," I reasoned with my eldest sister as I gleefully accepted a European teaching job in the tiny country of Andorra. "I'm not ready to live in the USA again quite yet."
My apartment in Andorra was directly across the street from a McDonald's. An entire trap for both my wallet and waistline (or so I thought). I ate McDonald's every. single. day. I cooked a chicken and potato skillet dish for dinner each night. I ate my weight in mint Mentos, provoked by the massive tubes sold in the convenience store a 2 minute walk from my flat.
I also slept all day. Literally. I didn't have to go teach until 4pm each day and got home around 10pm. I watched The Witcher and Cheer while I ate an alternating diet of double cheeseburgers and chicken with potatoes. I slept the rest of the time.
I slept from midnight until 3pm each day, ate McDonalds, taught English, cooked chicken and potatoes with Mentos for dessert, watched Netflix, and fell back into a sleep that seemingly gave me no rest.
I lost 30 pounds in 3 weeks.
I could barely keep my eyes open I was so tired 24/7. I was always hungry and yet constantly losing weight. But other than that, I was "fine."
February 2020 - Andorra la Vella, Andorra, New Orleans, Louisiana, and Daphne, Alabama
The plane ride from Andorra back to New Orleans was smoother than my telling my boss I was both quitting and leaving the country, but I thought the snow covered Pyrenees just weren't agreeing with me and that I would feel better back in my home country.
I got worse.
My sister took me to a New Orleans doctor where they validated my disdain for the urgent care "diagnosis" by explaining that urgent care doctors treat what's in front of them - they don't go looking for more. They concluded that something was wrong, took trillions of vials of blood, and were determined to figure out what was making me sick.
That all sounded like dollar signs to me. Coming in regularly to run tests that might not even find anything? I declined.
I got worse.
The lymph nodes in my neck got so large that my vain, youngest of four girls self stopped looking in mirrors. The rashes on both of my legs were so visible and widespread that my sister thought I might have sepsis. When the mattress she ordered for me arrived from Amazon, she was working in her office, so I brought it in from the front porch to the living room to open it and let it decompress. The box lightly tapped the inside of my right ankle and I fell to the floor screaming in pain at having the joint touched.
My sister decided to take us home to our mother in Alabama. Mom became my medical appointment enforcer and Samantha's support.
March 2020 - Daphne, Alabama
"Ms. Williams, can you please come back to the office to discuss the results of your chest x-ray?"
"Sure, is anything wrong?" I asked as I stood in the eye care aisle of Wal-Mart looking for something to help my burning, itching dry eyes.
"We just need you to come in to discuss," the Foley, Alabama, nurse repeated as I called my sister over to me to pick up the search for what I was told was pink eye. "Can you come back now?"
I hung up the phone as Samantha stood up in triumph with the perfect pink-eye-fixing-drops, her face quickly searching mine for tone as I told her what the office said. "It's not good when they won't tell you on the phone, is it?" I questioned in a strained voice, the florescent lights starting to hurt my eyes.
On my 30th birthday, March 6, 2020, I was shown chest x-rays that showed a mass and granulomas on my right lung. I was referred to an oncologist. My mom, sister, and I went to The Wacky Shrimp to get me a fried plate of my favorite food.
Days later, everything shut down for COVID and I kept getting sicker. My eyes became more painful, my vision started to blur, I hid in the bathroom from the sunlight, and I started having a fever every afternoon, on top of the symptoms I already had.
"I don't have COVID!" I cried while collapsing onto the bed in the exam room. My daily afternoon fever barred me from seeing a doctor to possibly get answers. The nurse was in full PPE while my sister and mom waited in the car to adhere to the new social distancing rules.
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| Yes, I am a dramatic Disney princess and flop onto the nearest item in despair in real time. |
Blood draws, MRIs, CT scans, x-rays, and more all came back terrifying, but inconclusive. My eyes were my main concern; my lungs were everyone else's.
My sister and mom wiped down groceries, bought stock in Lysol and Clorox, and watched CNN religiously around me as I writhed my days away on the couch. My mom managed my medical care, Samantha worked from home and managed the pandemic, I stopped being able to see the TV screen clearly, and so managed the sleeping and apple sauce consumption.
When my mom was able to force my fever down long enough for me to have the lung biopsy, the anesthesiologist and nurse in the room asked what was going on with my eyes - they were cherry red. They turned the lights off in the operating room while I was awake to keep me comfortable and said I really needed an ophthalmologist to be my next stop after this.
I got a confirmed diagnosis of pulmonary sarcoidosis, type/stage 2, and a prescription for prednisone, my new least favorite oral steroid.
April 2020 - Daphne, Alabama
I was finally feeling better, and I had gotten something even better: answers. However, I was still unsatisfied.
"We don't know what causes it, but you're a textbook case of it," my latest doctor half-joked.
Apparently I exhibited all the classic signs of both of my types of sarcoidosis, but the tests were all designed to rule out other, more sinister diseases, before mine was determined.
The prednisone turned me into a raging insomniac. I watched Tiger King with my sister and the rest of the world, I put together countless jigsaw puzzles that are now framed around my house and classroom, I spent my stimulus checks on Amazon during late night/early morning insomnia-induced fever dreams.
No one, neither (wo)men with a PhD or MD after their name, nor the Google Gods, could tell me exactly what caused me to have this disease. I had nothing to do but stew on why I had to get a rare disease without a cause.
The stay-at-home order was starting to drive me crazy now that I was feeling better. My mom and sister were terrified I would catch COVID while I was newly diagnosed with a lung disease. I was ecstatic that my eyes were better. They doubled down on their safety measures against the novel coronavirus.
Summer 2020 - New Orleans, Louisiana and Cairo, Egypt
The financial toll of my new illness was wearing on me. Jigsaw puzzles and reruns of Supernatural no longer mentally stimulated me. I had joined Book of the Month back in April, but that was only one new book per month at the time, and I raced through the chapters. Having groceries delivered removed the small thrill of visiting a store. My sister's purchase of Hello Fresh got me into the kitchen to cook each night, but the long, wine-filled days dragged on.
Naturally, armed with a three-month supply of corticosteroid and the words of my pulmonologist ("You may never have a flare up again. This could go away on its own and never give you another problem. We have to wait and see"), I moved to Cairo, Egypt, for the second time to teach history and science at an international school in August 2020.
Miraculously, I didn't catch COVID, and aside from some shortness of breath, fatigue, anxiety, depression, and an impending sense of "when will my next flare up be?" I was fine.
I taught completely online, hybrid, and in-person in a dizzying year. I adopted my beloved cat. I dated. But that April 2020 dissatisfaction with the lack of explanation or answers stayed with me.
Why did this happen to me?
Will it ever go away?
Why isn't there a cure? I guess because no one knows what causes it.
As the months turned into years, my doctors and I realized that I didn't have the kind that just "disappeared," but that I was coping with the disease well enough. I went from prednisone to methotrexate to hydroxychloroquine to an Advil regime to now, where I'm unmedicated and just vibing.
I joined the Foundation for Sarcoidosis Research, I added myself to their patient registry, and now I'm a Community Group Leader to help support patients in Birmingham, Alabama.
But I still have six word stories.
I want a reason and cure.
I still haven't launched my full herbalism practice - I finished a two year long master's degree program in Classics and Archaeology instead.
I haven't taught abroad since December 2021 - I've re-established myself in the US, found doctors that can treat me consistently, and have been teaching high school Ancient & Medieval History at an independent school instead.
I don't know why I have sarcoidosis. Maybe it was the string of seizures and hospitalizations I had during my freshman year of high school. Maybe it's genetics. Maybe it's Maybelline.
I don't have a cure, but I cope better now with my own mindset and limitations. I make and keep my doctor's appointments (mostly). I see the cost/benefit of visiting doctors and no longer let a co-pay prevent me from finding something out about my body (usually). I use my inhaler (privately). I lean on my family (always). I volunteer (when I can). I force Apollo to purrrrr on my chest until my fear of the unknown dissipates (daily).
My right lung will never get better, but I'm now hopeful that it will never get worse.
You know what this shows?
Beautiful. Thank you for sharing this. Your words have so much power.
ReplyDeleteYes!!! I cracked up at "maybe it's Maybelline." This is fantastic and vulnerable and real and excellently written. You will always be able to lean on us!!
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