ADVOCACY
My Journey with COVID-19 STORIES from the SPECTRUM Autism from an Autistic perspective
In the middle of February 2020, a novel Coronavirus was starting to spread worldwide, which people would know as COVID-19. This new virus turned into a worldwide global pandemic the world had not seen since the 1918 influenza pandemic, also known as the Spanish flu. This “Stories from the Spectrum” will be slightly different from previous articles in this series as it is in a question and answer format. Today we are talking with Karen Krejcha, Executive Director and Co-Founder of Autism Empowerment, Editor of Spectrum Life Magazine, and Autism Empowerment podcast host. She will be talking about her battle with COVID-19. Karen, thanks for being willing to talk about this. I know this has been a long and rough road. You’re welcome. This is a sensitive topic for my family and me. However, I hope that someone out there may benefit from hearing my autistic perspective. What were your first symptoms of COVID-19, and when did you first have those symptoms? The first symptoms I noticed were exhaustion, overall achiness, and a headache that wouldn’t go away. That was in early March 2020. Before catching COVID-19, I rarely slept more than 4-5 hours straight per night and had difficulty falling asleep. By the name April rolled around, I was having chills, fever, and sleeping 12-14 hours straight. Do you have any idea where you may have caught it from? That’s the million-dollar question! I don’t think I’ll ever know for sure. When I first noticed I wasn’t feeling well, I was working at home finalizing the Spring 2020 issue of Spectrum Life Magazine. The only place I went out to was an information night at my son’s high school for families of incoming 9th graders. That was February 24th, 2020. When did you know it was serious enough to contact your medical provider? It was that debilitating headache. It was different than any headache I’ve ever had. It wasn’t a sensory overload headache or migraine. It started in the front and was in the middle of my head, pulsating stronger then softer. When it was strong, it was powerful and radiated to the back of my head. Tylenol did nothing. Coated ibuprofen did nothing. The migraine prevention medication I had did nothing.
It was extreme on March 19th, so strong that we spent a few hours navigating the healthcare phone system reaching advice nurses and finally a doctor. By then, I was showing many symptoms of COVID-19 (e.g., headache, cough, fever, bad chills, reduced sense of smell and exhaustion), and I asked if I could get tested. They said they would like to but unfortunately, I couldn’t. Why couldn’t you get tested? There simply were very few tests available in March and April in Washington and Oregon. At that time, Oregon was only receiving 40 - 80 tests per day and where I live in Vancouver, Washington, there were few tests also. My healthcare provider network serves Oregon and Southwest Washington and I was told I could not get tested unless I was hospitalized overnight or a healthcare worker with a vulnerable population. So then what happened? I got much worse and was in the hospital emergency room for the first time at the end of March. I had trouble breathing, my oxygen was low, my hacking cough was similar to the cough I had when I had pneumonia a few years prior, and I was running a consistent fever. My headache was non-stop agony. They tested me for influenza (which if it were positive would eliminate the possibility of COVID-19) but as suspected, I was negative for the flu. While in the hospital, my oxygen levels dropped, I became dizzy, and had trouble breathing. They wanted to give me a COVID test but didn’t have any in the emergency room. They were also very low on Personal Protective Equipment (PPE). When I was eventually released, I was given an inhaler, a headache cocktail that probably could have knocked out a horse but didn’t work on me, and was scheduled for a follow-up call with a doctor the next day. I was also given COVID-19 paperwork and told to assume that I had COVID-19. They asked me and my family members to quarantine for 14 days and stay in quarantine if I continued to have fever, cough, or shortness of breath. How long were you in quarantine? I was in quarantine for almost four months due to symptoms that didn’t improve. We kept a chart of my daily temperature reads, oxygen levels, and other symptoms. Although I took fever-reducing medication, I still had daily temperature readings over 100 degrees for the next few months. It was exhausting. Continued on page 8 www.spectrumlife.org
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