“COVID is the gift that keeps on giving

I got COVID the first time in March of 2020. I was traveling for work and hit three airports in one day on the way home. About a week after that, I felt like I had the flu without the fever. COVID was so new, and everyone said fever was part of it. I was 28 years old and had no pre-existing conditions.

I went to the ER on a Tuesday, and the doctor told me I presented positive for COVID, but they didn’t have any tests to confirm my diagnosis. He gave me an inhaler and sent me home. Two days later, I couldn’t get up or hold a water bottle. I ran a 10K two weeks before getting sick, and all of a sudden I couldn’t walk to the bathroom. On Friday I went to the only ER I could get into that had a test. They admitted me on the spot. That was my first stint in the hospital. I was there for five days, but I didn’t get my positive test results until three weeks after I took the first test. I was admitted and given oxygen. By my third day in the hospital, they had created the COVID unit. It was covered in black trash bags and looked like a haunted house. They hit capacity. I was discharged on a Tuesday and told to try and get better.

I never got better. I made two more appearances in the ER after passing out and other complications. I eventually tested negative and, but I couldn’t get in to see any doctors. I hurt and couldn’t walk or stand for long. I finally saw a pulmonologist and did every blood test imaginable. I tested positive for COVID again and was sent to the hospital ER. A physician’s assistant told me I wasn’t sick enough, so they couldn’t admit me.

My fiance, Kyle, packed me up the next morning and drove me to the ER at UAB in Birmingham. I was admitted, then the bottoms of my lungs collapsed. I am thankful that Kyle took me to a hospital because otherwise I don’t know what would have happened.

I worked on rebuilding my lung capacity to get back to where they actually function. My new full-time job was just trying to get better. I had physical therapy, chiropractic care and massage therapy to try to relax my muscles. I started having these episodes that seemed like seizures after my lungs collapsed. I would pass out for about 30 minutes or go in and out of consciousness. That continued for about eight weeks. Doctors said to wait it out. I couldn’t wait it out anymore, so I went to the Mayo Clinic in Jacksonville where they are doing research and looking for solutions to long-COVID. My first time around I was there last summer for five weeks.I kept traveling back and forth for more tests. We’ve been able to see some improvements, and I’m walking more. Their team of doctors and providers are incredible and they are the reason that I’m still here.

I’ve had brain fog and memory loss and learned to record what the doctors tell me. I have also lost a lot of my hair. I still have body aches and headaches and faint taste and smell. So far, we’ve learned that COVID attacked my nervous system and flipped my immune system upside down. My body is basically in fight or flight at all times and isn’t able to calm down and heal itself. It’s inflamed all of the time. I now have celiac disease from this. I’m Italian, and giving up gluten is not my favorite. I’m tracking all my exercise and all of my food and water intake. We’re trying out different medicines to get my body to calm down. We’ll try everything as long as there are no horrible side effects. The doctors are learning about long-COVID as we go, so my case is helping them understand what works and what doesn’t.

I am thankful for insurance, but insurance management is a nightmare. My insurance specifically continues to change COVID policies. At first, anything COVID-related was completely covered. Now there’s a question of what they will cover for long-COVID. I have to go to physical therapy to increase my lung capacity. Now my insurance company says it is a by-product of COVID, and they won’t pay for it. I have all of these back bills of physical therapy and other tests, scans and MRIs. I don’t know what’s going to be covered or not, but I don’t want to turn down an opportunity to get better. So how do you make that decision?

COVID affects everybody differently. They’re finding that about 15% of all COVID patients have some form of long COVID. I want to show someone else that there is light at the end of the tunnel, and they can make it this far. You have to be an advocate for yourself within healthcare. I was pushed away by doctors who told me it was in my head until I got in front of the right doctors who said this is why this is happening.

I’ve just learned to take things in smaller chunks. A small victory is still a victory. I went 45 seconds for the first time on the bike at physical therapy. Three weeks later, I could do a minute-and-a-half. Now I’m up to 10 minutes–that used to be a warmup, and now it’s my whole workout.

Being sick with an invisible illness like this is so isolating, and most people don’t understand it. If it wasn’t for my friends and family, I wouldn’t have made it this far. The company I work for puts my recovery first and allows me to adjust my roles and responsibilities.

Kyle and I planned to get married last October, but we postponed it. So fingers crossed, we’re getting married on October 9. I had a virtual shower and one of the games was blowing up a balloon the fastest. I told them they were lucky to have so much extra oxygen. You have to laugh and make the most of this.

Accepting that I didn’t do anything to cause this was hard. I don’t think I’ll ever be back to where I was pre-COVID, but there’s been so much that I’ve learned through this whole process. I have a better understanding of what matters. I no longer worry about the little things. I’ve learned to take nothing for granted.”

Emily