Health Equity Advocate & Citizen Scientist
I was a flight attendant and part-time yoga instructor before a severe infection of COVID-19 robbed me of my health. Here is my story.
In June 2020, I became sick with what I thought was a sinus infection until one day I woke up feeling like a truck hit me. I was having respiratory symptoms, headache, fatigue, and sore throat. I had been struggling to breathe, but things turned really bad when an invisible elephant started sitting on my chest. A few days later, I ended up in an emergency room with my feet turning blue, gasping for breath, with an uncontrollably high heart rate. My chest X ray came
back with a spotted pneumonia and a few days later, my PCR test came back positive.
I was told to go home and try to recover. “You're young and healthy. It should be a rough two weeks, but you'll get better.” I had thought the same. However, the next week I was back at the emergency room. I felt like I was dying.
I ended up at a hospital that was treating COVID positive patients. I was seen in a tented facility in the hospital parking lot, then sent to an isolated COVID wing where I waited for hours. I was told again to go home and drink Gatorade. I explained my situation and continued to beg for treatment. I was told that there was a two day wait for hospital beds and “it just wasn't going to happen. go home and try to tough it out.”
When I was leaving, I saw a shirt that said ‘I can't breathe.’ I'm a biracial female being turned away from a hospital and in that hospital waiting room, all I saw was brown and black folks. And the only person I saw who walked through ‘the plastic zippered area’ was a white male.
After being turned away from the hospital, I found a practitioner who would see me virtually for the next few weeks as I continued to get worse and develop neurological symptoms. Again, my provider told me to go to the emergency room. About 5 weeks after my initial infection, they admitted me to COVID ICU, I spent a week in the hospital and then was released to a rehab hospital. Within 10 days, I started to develop severe tremors, neuropathy and lost my ability to
I started the process of applying for disability. In June 2021, I was approved, and my doctor was so excited
because we would finally be able to get the medications I needed without having to struggle and fight with insurance in order to receive them. However, we were both surprised when I found out that I had to wait an additional 24 months before receiving the health care portion being Medicare that came with it. I talked to the social worker, and found out that the waiting period wasn't 24 months from when you are considered disabled. But it's 24 months from when you were approved for disability. So, that added another five months for me. For me, this gap in coverage caused my family to spend our retirement savings. For others, this gap in coverage can be even more catastrophic.
I had been unable to work since June of 2020 and I was paying for COBRA insurance. I survived with the help of my friends, family and co-workers that had started a GoFundMe while I was in the hospital. Too sick to work, when I started to look at different insurance options, none of the options allowed me to see all of my specialists, and cover all of the medications that I was on, some of those being very important, like my heart medication,
and my asthma medications. I thought, Wow, this system is really meant for you to fail and never get better.
This situation has been catastrophic to my life. Not only am I still using mobility devices, including being in a wheelchair, but I am still having to relearn to walk. But my family has been affected too.
Overall, my story is a little bit of a roller coaster, but these experiences reflect what many other people
face every single day. So although you are reading my story right now, it is the voice of many.
This is what catalyst my journey as an equity advocate and consultant. To learn more check out my website.
Health Equity Advocate & Equity Policy Advisor
I grew up in Cincinnati, Ohio, and I am now from northern Virginia. I have had long Covid since march 2020. Before I got sick I was a multitasking supermom and business owner. I ran 2 businesses from home, while homeschooling my young son. For several years I was a volunteer at Breast Cancer Foundation, a other nonprofits that serve low income or minority women in the community.
Mid -March of 2020 my family and I got a very mild Covid infection. Later in May, I had my first long Covid incident that sent me to the Emergency Room, little did I know this would be the first of MANY trips to the hospital. 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 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 or months 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, metabolic acidosis, refeeding syndrome, 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.
From time to time my body became overwhelmed with fatigue, nausea, dizziness, intermittent paralysis, dangerously low oxygen levels, and unexpected high heart rate. To the point where I fear I’m having a heart attack. There were several months where I became WHEELCHAIR dependent. After many trips to the hospital I was dying. I started thinking about my funeral arrangements. I'd lay awake, night after night thinking mournfully about the very real potential of my son growing up without a mother. As my struggle to survive continued.
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 that I was very sick and being denied adequate care. I knew my words alone wouldn't be good enough.
Nothing however, would prepare me for this blatant racially biased incident. While being wheelchair dependent at the time, I was threatened with arrest by Emergency Room hospital staff while seeking medical help during an episode of dangerously low oxygen and high heart rate. This same hospital had tested me for illicit drug use without my knowledge 3 times prior, in response to the Long COVID symptoms I presented with. In spite of my drug tests repeatedly coming back negative for illicit drug use. I was even slated to be given Narcan for withdrawal, during one of my admissions at this hospital for Long COVID. No other hospital, not even the sister hospitals in its network just a few minutes away, treated me as if my long covid symptoms stemmed from drug use. It was then I decided to become a long covid advocate. In 2021 I started to recover. Thanks to an experienced allergist, a wonderful team of cardiologists and a very gentle physical therapist, I am now able to walk again and take care of my basic needs. I however still remain extremely allergic to all food and water. It takes multiple pills a day for me to be able to eat only a handful of different foods for the past 2 years. Even with this amount of medicine I still have multiple symptoms upon eating or even after smelling food: Tight jaw, trouble swallowing, wheezing, throat tightening, congested nose, face flushing, increased heart rate , confusion, fatigue, possibly fainting, diarrhea, constipation, puffy eyes, and more. I didn't need any medications at all before covid. I had no idea what life with long term chronic illness was like before..
Unfortunately, my last trip to the Emergency room from Long COVID, from yet another allergic reaction, remains startlingly reminiscent of my care 2 years ago. Though I thankfully wasn't treated with racial bias. I still didn't get adequate care. As, it produced little more than a bruise from my IV of fluids. Though I went to the hospital with symptoms common for myself and others stemming from long COVID. Though I have the diagnosis of what triggers this on my file. Though I was administered proper care by the hospital in the past. I wasn't administered any medication, nor was the protocol for my diagnosed conditions followed. Multiple symptoms were never even addressed.
As I stiffly hobbled out of the hospital, at the crack of dawn, I caught an uber home. Mulling over the harsh reality that efforts in advocacy thus far has resulted in little visible progress in the education of medical staff concerning long COVID.
Though being chronically ill and mostly homebound is quite the arduous task in itself. I am currently also tasked with monitoring my son's vitals daily with little hope of getting him to care for his intermittent struggle of an elevated heart rate, blurry vision, and fatigue from long covid. As there are very few experienced post viral pediatric specialists in the nation. Currently there is a wait for pediatric post covid clinic for several months. Everyday feels like I am walking what feels like the tiniest tight rope of forward progress in my own recovery and his. But instead of giving into the urge to be defeated. I instead am working in every avenue available to help find a cure for long covid or at very least unlock the mysteries of the illness that keeps myself and millions of others missing from our former place in society. This is how I became a health equity advocate. To learn more please check out my website.