This essay was based on a conversation I had with Karyn Bishof, a former paramedic firefighter. She is also a COVID patient since 1998 and a Boca Raton advocate. This conversation has been edited to be more concise and clear.
While working as a paramedic firefighter, I received COVID-19. My job was terminated. My health has declined even more since I lost my job. Fast two years have passed since I was unable to work.
My bed is where I spend about 85%. My only commitment to my son every weekday is to ensure that he has some kind of normalcy. This includes getting him to soccer practice. I have had to deal with nausea, insomnia, heat intolerances, rashes and vomiting as well as tachycardia and tinnitus, chest discomfort, chronic pain and stiffness and severe debilitating fatigue, light-sensitive, food aversion and an occasional cough.
Each morning, I wake up with severe pain. Since March 15, I have had a headache each day. Since March 15, I have had a headache every day.
As a single mother, I struggled for 10 years. We have had to live with food stamps and Medicaid for a while. For a time, I was a PE and Health teacher, director of athletics and coach. My annual earnings ranged from $40,000 to $52,000.
My lifelong dream was to become a firefighter paramedic in 2016. I began training in 2016. It was a difficult process to go through paramedic and fire training, while also trying to work full-time. It took me about a year to be hired as a paramedic firefighter.
This was the first time that I felt like everything was going to be okay. I can save money for my son's college. We're good.
Then, I got COVID-19.
Pre- and post-COVID, my expenses for housing, utilities and bills have not changed. They average $4,000 per month. It now costs about $4,600 per month to get to the doctor and medications. This does not include the cost of medications and getting to doctor's appointments. It is scary to think about.
Medicaid covers most of the costs. My pharmacist helped me keep the cost of medications not covered by Medicaid as low as possible. Migraine medication would have cost $880 per month. There is no GoodRx available for it so I could not pick it up.
Apart from the doctors I pay cash for who are all specialists, medical marijuana is my most expensive medical expense. Over the course of my COVID journey, I have seen twenty specialists, nine of which I see on a regular basis, and three of whom are out-of-pocket or cash.
Financial issues should be considered along with long-term care and treatment.
Talk about children who could be in generational poverty. Never-ending medical debt is what we are referring to. The advocacy work began with collecting data and gathering people. How many of us seem to exist? We need help. Are we even aware of it?
We were not able to answer that question, but we became more organized and started to collaborate and build a community. A Facebook group was created recently for long-haulers who needed to post fundraisers. We want it to be a central place for long-haulers looking for help and those willing to help.
We're now meeting with Congress, the National Institute of Health. Except for my work with the NIH RECOVER initiative (a study that aims to identify the prevalence of long COVID in America and the associated symptoms and diagnoses), I am not paid for this work. For occasional meetings with this group, I earn $100 an hour.
While I was working, it was possible to pay everything down, get out from debt and build my credit rating. Now all I have is credit cards.
After a doctor dismissed my case, he said that I had psychosomatic symptoms and that my workers' compensation payments were canceled on December 31, 2020. I was also denied disability because I stopped receiving funds through the Pandemic Unemployment Assistance program.
I would like to know why I was denied. I have the strongest evidence of any long-hauler I know. I've seen every specialist, pushed for every test, and long COVID is considered a disability.
People think about COVID-19 in terms of life and death. They think about being prevented from visiting their favorite places and having to wear masks. And what they will do with their children through all the schooling situations. Everyone seems to forget about those in the middle, who weren't killed but haven't died yet. The pandemic's greatest impact is felt in the middle, and this is long COVID. Long-haulers are left without financial support and jobs if they are not educated and advocated for. The long COVID (long-term) is a serious problem that will impact our economy and health for many decades.
We wouldn't have had to fight so much just to prove we are sick.