Blog Post 01: Welcome
I grew up happy and healthy. I wasn’t without health issues, but who is? I had scoliosis, generalized anxiety disorder, and asthma. Plus a complicated history of bronchitis and pneumonia. However, all were managed and none had much of an effect on my day to day life.
My junior year of college marked the start of the COVID-19 pandemic. We were sent home and, there, it didn’t seem so bad. I was with my family and had the ability to be outside in the sun everyday. Upon returning to Nashville my senior year, the realities of the pandemic became much harsher. It’s a tourist city in a conservative state. Masks were viewed as a recommendation, not a requirement, and many of my fellow students were hesitant to give up their social life for their senior year. My asthma put me into the “high risk” category and my anxiety spiraled to the point of needing medication. I had made it 11 years unmedicated. It was an isolating experience, but one made manageable by close friends who understood my situation and made the necessary sacrifices to stay safe.
December 27, 2020 I tested positive for COVID-19. This test came less than 2 weeks after my second case of bronchitis since Thanksgiving. My body was already run down and already at higher risk. I was living with my now ex boyfriend and, on December 31, he brought me to the ER. Unfortunately, the reality of COVID is that there isn’t a whole lot they can do for you, shy of putting you on a ventilator when it gets to that point. He brought me home, monitored my heart rate and oxygen levels hourly, and woke me up for meals, as I otherwise slept all day and night.
When I returned to Nashville in late January, it was hard to ignore the side effects of my run in with COVID. I was exhausted. A kind of fatigue I had never experienced before. I was napping everyday, sometimes more than once. I struggled to concentrate and no longer had the ability to cook or exercise, things I once loved to do. I was previously a D1 athlete and now my lungs were damaged enough to have me doubled over and wheezing after just one flight of stairs. I started seeing a pulmonologist, who deemed me a “COVID long hauler” and put me on an inhaled steroid, which helps my lungs, but makes me immunocompromised, further contributing to my risk level. My body had been so oxygen deprived for so long that I was severely anemic and even iron supplements weren’t helping.
Post-COVID, I am a shell of who I used to be. Close friends and family know this but, to the outside world, I like to think I put up a pretty good front. (See attached photos, for reference). I rescued a dog, got a 4.0 my final semester at Vanderbilt, graduated with two degrees, survived a terrible breakup, moved across the country alone to accept a job at Seattle Children’s, and met someone new. On paper, I had created a pretty great life for myself. In reality, nothing about me felt great.
Since moving to Seattle, I’ve been on the hunt for a diagnosis. I’ve seen countless doctors for countless appointments where they run countless tests. I’ve been told I’m depressed and to try seeing a therapist. I’ve been told that this is just long haul COVID and, unfortunately, they just don’t know what to do for us yet. I’ve had the word cancer thrown at me on three separate occasions for three separate body parts, just for it to be negative each time. I wish I had the words to explain what this rollercoaster does to your mental health. I don’t. I’m not sure anyone does. The funny thing is, I wished for cancer. Prayed for it. COVID long haul is a synonym for “we don’t know.” For “we can’t help you.” Lymphoma? A scary word, a terrible diagnosis, but an answer. An answer that has a known treatment plan. That seemed like a dream. I just want to know. Something. Anything.
It has now been 14 months since I tested positive for COVID. I am still exhausted, I still struggle with basic self care tasks, I still lack focus and motivation, I am still anemic. To be sick for over a year is only something you can understand when you’ve experienced it. I hate the way I look. I’ve gained weight, my body is covered in purple marks from the excess levels of steroids that I’ve been prescribed, my lymph nodes are swollen all the time. I hate the way I feel. I used to be so driven, an overachiever by anyone’s standards, and now cooking dinner after a day at work can bring me to tears. I don’t recognize the person I am now. I don’t like her. I miss who I was December 26, 2020.
I write this the night before my first appointment with yet another new doctor, February 24, 2022. She has a background in diagnostics and I come holding an 8 page packet I’ve compiled with all of my previous labs and imaging results. I hope she takes me seriously. I hope she considers all the pieces. I wish she was Dr. Greg House. These past 14 months have tested me and pushed me to a point where I’m not sure how much more I can take. I’m crying as I write this, but I’m hopeful that tomorrow is the beginning of the end of this nightmarish journey.
Each of these comparisons show photos taken just hours apart. A visual representation of the way I’ve presented myself, despite how sick or how sad I’ve been.
