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Credit: Jae Walker

It took me a month to get over COVID and the draining, squeezing bronchitis that took over my body. My symptoms began on Monday with an extremely stuffy head. By Wednesday, I had moved onto intense leg nerve pain, trembling, struggling to breathe (and feeling exhausted after short bouts of talking), loss of appetite, a migraine, nausea, and more. I took the in-home COVID test, and although I was supposed to wait 15 minutes, the results came back positive before five minutes even passed. After proof of a positive test, my doctor prescribed me Paxlovid, which I began taking on Friday.

The Physical Toll

I know my body. I know what I can tolerate and what I cannot. In 2019, I got bronchitis and became really sick, missing two weeks of work at my then new job. That incident made my asthma much worse, forcing me to give up vaping, which was my only source of pain relief since my patient journey began.

I have multiple autoimmune diseases, including a rare neurological disease that is so uncommon that it can’t be studied or treated through medical trials due to the limited number of people with the disease. I receive IVIG treatments through a port, walk with a cane, and have undergone infusions. I learned to get over my intense fear of needles  when I began doing self-injections using autoinjectors. Then down the road, I even had to measure liquid methotrexate myself using an empty syringe before each injections.

I’ve also experienced allergic reactions to biologics and to the rubber in the caps of the autoinjectors. I took a chance by proceeding with the biologic despite my latex allergy, but unfortunately, it didn’t provide the relief I needed and I suffered the worst fatigue and brain fog I had ever experienced in my patient journey.

When Friday rolled around during COVID, I started the Paxlovid treatment, which required prior authorization by my insurance. By that point, I was so bad I wasn’t sure I was going to make it. At the very least, I knew if I didn’t get better, I would be in the hospital in 24 hours. The combination of IVIG treatments on top of my biologic, multiple DMARDs, and other medications have left me with an immune system that resembles a cancer patient. I just cannot fight infections.

My roommate had to help me stand up out of bed, hold me up as I walked to the bathroom, help lower me onto the toilet, and then help me back up again when I was done. I leaned hard against the sink when I had to wash my hands. He hovered over me to make sure I did not fall because I was still stubborn and struggling with the fact that I could not do anything for myself at that time. I could barely sit up in bed, and when I did manage to eat, it was only a few bites. I struggled with how quickly I lost function and ability in my body.

There was no adjustment period. I just suddenly could not breathe, walk, or think straight. The brain fog was so much worse and the nausea gnawed at my gut. I had new nerve pains shooting up and down my legs unmercifully, making it almost impossible to lay down or even touch them against any surface, whether the bed, my pajamas, or clothing of any kind. Every one of my senses was bombarded and overwhelmed all at once with pain, anxiety, and discomfort.

Dog shows and videos make me happy. That is my happy space. I tried to use this to distract myself from the cycle of pain, fatigue, shooting nerve pain in my legs and utter fire in my feet. Yet staying distracted was hard. My PCP, who has been by my side since 2018, told me to regularly test my oxygen levels and blood pressure. She understands the risks and the issues that come with my medications, diseases and diagnosis, and mental health struggles. She kept very good tabs on me, and her concern was most appreciated.

We established my upper and lower limits, went over what to look for in terms of warning signs, when to call her, and when to go straight to the hospital. It was difficult to balance recording my oxygen levels, blood pressure, and distracting myself to help keep my anxiety and my pain levels down. Every time I felt like I was losing myself in something enjoyable, I had to snap my attention back to my vitals. For someone with obsessive compulsive disorder (OCD), that manifests itself in obsessive thoughts, which is a true challenge.

The Mental Toll

All it takes is one scary thought to hook into the tornado of obsessive OCD thinking. Each thought picks up speed and momentum based on the power of the thought before it. Part of my OCD also includes an issue with germs, and COVID became a special interest beginning right before lockdown.

I began studying patterns of the virus when it was wreaking havoc in China and had not decimated the U.S. yet. I read everything I could get my hands on. When it came to the U.S., I had the John’s Hopkins virus case counter up on a tab in Chrome at work and home. I could and did educate various doctors that I saw for treatment. Those doctors should have been up on the latest developments, especially because they treated high-risk patients.

I also became furious when COVID cases were counted differently and places of business began opening up and returning to “normal.” COVID was not under control, because the strain that I got just wracked my body and tore me up. And it would have been worse for me if I had not been vaccinated, or if I had not had access to a caring doctor who prescribed Paxlovid in time to keep me out of the hospital.

Having a plan for if I got worse and knowing when that would be, helped my mental health during the extremely difficult process of being sick. Having the support of friends (many of whom I now consider family) helped sustain me throughout the process. I had folks messaging me and checking up on me, making sure I was following doctor’s orders. It was genuinely a team effort to get me through having COVID.

To this day I still have lingering effects, including increased nerve issues in my legs and a greater sensitivity to cold in my muscles, joints, and ligaments. I can barely tolerate being in 30-degree weather now without hours of pain and stiffness afterward. My muscles will knot and cramp up from the cold. And my joints ache deep in my hips and sacroiliac joints. But at this point, I am just thankful I made it out the other side. And I genuinely hope that I never have COVID again.

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