Before I got sick I was living my best life, a multitasking supermom and business owner. I ran 2 businesses volunteered at several non profits, even in my church, while homeschooling my young son. Mid -March 2020 my family and I got a very mild illness. Runny noses, a light sore throat, mild fatigue and low grade fevers. No cough, or shortness of breath. Which meant, we were denied access to a Covid test. Yet I knew it was Covid. I just knew.
Then, Mothers Day, May 10th 2020, my life was forever changed. I had my first incident that sent me to the Emergency Room. Little did I know it would be the first of over 30 trips to the ER from long Covid. That night, I went to eat a piece of shrimp, I felt strange. My jaw felt tight, I couldn't swallow, my heart raced, I felt light headed and dizzy. I went to sit on the couch trying to figure out if I was having an allergic reaction or a heart attack!
I went to the ER and standard tests showed nothing alarming to the medical staff. The nurse told me it was an allergy and anxiety. But I knew something was terribly wrong. A terrifying incident a few weeks later after eating a piece of fruit, measured my heart rate at over 160 and included temporary paralysis of my mouth, arms and legs. I remember sobbing as my limp legs were dragged out of the car and into the ER. I knew something was very wrong! Hospital staff disagreed. My primary care doctor did her best to send me referrals to specialists, but those appointments were several weeks out, as most places were closed due to the pandemic. Each specialist I saw just referred me to a different type of specialist.
I declined quickly! I lost 50 pounds in just 4 months and became wheelchair bound. By September I had been diagnosed with starvation, a tear in my esophagus, elevated heart rate, ovarian cysts and more. Yet still hospitals didn't believe my symptoms I described as real and continued to note my symptoms as anxiety. So when my oxygen levels started dropping to 85% at the beginning of September 2020, I began recording my symptoms and hospital visits with video. I knew I needed to have proof when I inevitably landed in the Emergency room. I knew my words alone weren't good enough.
In September, I went to the Emergency room, to have tests run to find out why my oxygen was dropping. The nurse screamed at me to leave immediately! She refused to run tests, threatened me with arrest and had hospital security push me out of the room in my wheelchair in the span of 5 minutes. Thankfully, I had the presence of mind to film this incident live! I later discovered that hospital had tested me 3 times, in the past without my knowledge for illicit drugs. Even though I would test negative for illicit drugs each time and never asked for pain medication. I was still treated like a dangerous drug seeking criminal.
I soon learned other black longhaulers were tested for illicit drugs without their knowledge while receiving care in the Emergency room. Professors, firefighters, teachers. It didn't matter the profession, geographic location, or income. The same racially biased behavior and dangerous level of neglectful care occurred time and time again. That is why I became and medical equity advocate.