Voices for the Long Haul

It is difficult to explain to people how I feel after I went through a harrowing experience being diagnosed with Covid-19 the day after July 4th of this year. I had gotten together all the goodies we normally enjoy on that day. My husband is an amazing cook. Instead, I spent the day in bed, shivering then sweating. Shivering and sweating. All day. I don't remember much about that day. I felt very out of it the next day. My husband decided I was going to the ER to just make sure it was the flu.

This was so much more than the flu. I ended up being admitted due to low oxygen levels, fever and cough. I was told I tested positive for Covid-19 from the rapid test and the swab test results would be ready the next day. I slept a lot. I was told I'd be in the hospital at least that night. I naively believed that idea. It turned into 16 days of a roller coaster ride I never wanted to get on, and I LOVE roller coasters. Out of the 16 days, I spent 4 days in ICU, on the brink of needing to be on a ventilator. I was lucky, my doctor ordered convalescent plasma with antibodies almost immediately. After some steroids I felt great and even asked about going home.

Within 12 hours, I was on the highest oxygen I could be on without being on a ventilator. I crashed pretty quickly. It was the incredible care I received while there that got me home, on oxygen support, on the 21st of July. I thought recovery was imminent after I got home. Instead I was on oxygen a total of 69 days from the initial ER trip.

Recovery didn't come. I slept on my couch as I was still quarantining from my family. Suddenly I had up and down blood pressure, a super high heart rate, blood sugar issues, the same nasty cough, immense fatigue, brain fog, PTSD symptoms that needed Xanax to take care of, terrible joint and muscle pain and shortness of breath. I couldnt stand up very long or walk very well. I had to drag an oxygen wire to the bathroom and sit while showering. My hair started falling out. The light was gone in my eyes. I slept all the time because sitting up was exhausting.

It is now November, I'm still struggling with most of these. I did get off the oxygen support but I am still using an inhaler. I couldn't work and lost my job and my health insurance. It is safe to say my life is completely changed because of Covid.

I am a long hauler. There are a lot of us. We deal with this symptoms months after diagnosis. I'm not even the worst or the longest I've heard. We all have something in common: we get ignored. Long haulers are often overlooked in the scheme of things. People argue over death tolls and statistics but hardly ever look at the long haulers and say, "We see you."

It's become very important me as I sit in a life I don't recognize, jobless, in daily pain that I manage with legal medical cannabis, to speak up for long haulers. We need a voice. I am not the only voice out there, but I am planning on doing more in my local community to gain support. We need you to believe us, whether you are a doctor, a friend, a stranger just reading this randomly. We need to be believed. None of us want this. I want my active life back, doing theater and running 5ks at Disney World. Now I worry about making car payments, being able to afford my health insurance premiums through the ACA and wondering when I'll be "me" again. I was already turned down for disability help despite being unable to work.

I may never be me again, but when given this situation that seems to be for nothing, I plan on giving it a purpose. I'm slowly building a site called "Voices for the Long Haul", which began in Facebook as encouragement for other long haulers but will become a base for my personal mission to represent long haulers and to bring us together.

We are all in this together. Be kind, you may not be able to see what someone is going through.