Rayetta Johnson: Controlling What is in my Control

September 03,2020

When I was diagnosed with pulmonary arterial hypertension in the beginning of 2018, I had to make a lot of lifestyle adjustments. I had to get in touch with my new normal. When the COVID-19 pandemic arrived in the United States not much was known, and as the days and weeks went by we realized how serious this virus was. I knew I was going to have to work on creating yet another new normal.

Hearing about the pandemic and knowing I was one of those at high risk caused me to feel a lot of anxiety because of the unknown. I also dealt with depression because I couldn’t do the things I enjoyed doing and had to spend a lot more time at home. When I did manage to get out I was afraid of possibly catching the virus. I ended up discussing these feelings with my therapist to help me deal with the emotions I was feeling as a result. I was also having trouble sleeping and ended up getting a prescription to help me sleep. I ended up doing a lot of reading on my Kindle Fire, practicing mindfulness, spending time on my computer, and occasionally getting out and going for a drive just so I could get out.

I live in a state where there weren’t many restrictions. Masks are not mandatory in my state. The very few restrictions and what we did have didn’t last long. Our grocery stores weren’t requiring masks, although some are now. Many have quit washing the grocery carts and aren’t enforcing social distancing. I had to find a whole new way to shop for my groceries. At first I made a list and others went shopping for me and would leave my groceries at my door. Things were in short supply so I wasn’t able to adhere to my diet restrictions like I should have. Personal protective equipment was hard to come by, and when I finally was able to get some masks made for me, I started shopping online to get my groceries. I would then go pick up my groceries outside in the pick up area. I felt comfortable about doing that because there was no actual contact between the person who delivered my groceries and myself. I also started picking up my prescriptions at the drive through.

In the state of South Dakota we are seeing lots of tourists and are having all of our usual summer activities that draw large crowds as if there were no virus to worry about. In July, Mt. Rushmore held the Independence Day celebration in which President Trump attended, not many masks were worn. We also had the Sturgis Motorcycle Rally take place, which 250,000 people were expected. This causes even more anxiety because I don’t know what to expect for an outcome.

During the pandemic I started traveling to Aurora, Colorado to UC Health to see a specialist. This requires me to travel through two other states. Due to this I have to take extra precautions and make sure I have enough masks, hand sanitizer, and whatever else I need to feel safe. Being on disability these extra expenses are a hardship. I also have the expenses of fuel to get back and forth and need to stay in a motel. My car is not reliable right now and I am having a friend take me so I give her what I can to pay her for her time.

Right now I feel that I am not able to experience the life that I want to lead due to the virus. It is preventing me from doing things that I enjoy, such as attending family gatherings, summer festivities, and more. I feel that this virus has caused those of us at high risk to lose some of our freedom. We must do what we have to do to protect ourselves and sometimes that means giving up things we enjoy. We have choices, although I for one am not going to choose something that may cause harm to me or one of my family members.

Rayetta received COVID-19 relief funds from the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.

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