By Olivia Ohmer - KIDS Michigan
As Covid-19 entered my home state of Michigan, everything familiar to my daily routine quickly changed. On March 11th, my sister who had been away at college for several months, suddenly received notice that her school, Michigan State University was to pivot immediately to virtual instruction. With a quick text message, my parents let me know that they were abruptly heading to campus to bring my sister home. At the time this was happening, I was also sitting in a classroom, wondering if it was safe for me to continue in-person classes. My curiosity was short-lived as two days later, on March 13th, my high school closed. That same day, my father was asked to work at home and my mom, already working at home, found herself surrounded by family. While this sounds like the perfect recipe for a vacation, it was also a time of distress. Most kids my age didn’t understand the implication of a pandemic, but to our family, we immediately recognized the seriousness. Unlike many kids our age, my sister and I both live with type 1 diabetes, an autoimmune condition which requires insulin injections to stay alive. As a person living with diabetes, contracting covid-19 put us into a high-risk population, something that we did not want to deal with.
In the days and weeks to follow staying safe became a priority for our entire community. Our state began shuttering the doors to non-essential business and limiting activities through a new policy of social-distancing. C.S. Mott Children’s Hospital revised visiting protocols, allowing just one parent to accompany a minor, and restricted elective procedures and surgeries to only those that were critical. Our endocrine clinic and many other specialities shifted practice to providing care through virtual connections. Despite all of the closures, our government assured patients that pharmacies would remain open and that there would be no delay in fulfilling prescriptions, something that is critical as it is life-saving to me and my sister.
Along with type 1 diabetes, I also live with two other autoimmune conditions: hashimoto’s thyroid disease and chronic solar urticaria. To manage both of these conditions, I require extra support. Since chronic solar urticaria is considered rare, with less than 1.0 % of the total population being diagnosed, I am using an injected medicine off-label to help treat my condition. This medicine carries a black-box warning, restricting how it can be administered under strict guidelines at a clinic office. Although I can manage daily multiple insulin injections for my type 1 diabetes and oral medicines for my hashimotos, I must treat my chronic solar urticaria in the hospital or clinic. With risk involved with suddenly stopping my medicine, our hospital system created a safety plan to allow me to enter into a building and safely be treated.
It has been six weeks and my first experience was surreal. The normally busy clinic that I was used to going into was suddenly barren of patients. Even before I could enter the building, my mom and I were screened at the entry point by a team of three nurses. They checked me for fever, cough, cold, then provided us with a medical face mask and asked us to wash our hands with sanitizer. Next, security had us check in and we were given a sticker with the date and time to wear visibly on our clothes. My mom asked that we not use the elevator to avoid touching buttons, so we took the stairs to reach the appointment, careful not to touch handrails. Once up in the clinic lobby, there were no adults or kids in the waiting room. All non-essential clinics were closed, including optometry. For the first time, I was the only one receiving care. Immediately, a masked nurse came to usher us back to a patient waiting room. I noticed that my nurse washed her hands before entering, after touching the keyboard to enter my patient information, again before touching my medicines, and after she completed my treatment. The only time I was close to her was for the actual procedure and immediately after, she moved back to the recommended six feet of distance. We didn’t talk much and it felt very stressful to be there. To watch for side effects, part of my procedure is to sit quietly for an additional 30 minutes while I wait to make sure my body will not react. As soon as it was over, my mom and I carefully went back down the stairs, out of the building, removing our gloves and mask safely so as not to touch any exposed parts. Then, we washed our hands with sanitizer and headed home. Only once in the car, did I realize how tense my body felt. During a pandemic, most of the world works hard at avoiding dangerous situations where it is likely to contract a virus, but for me, I had knowingly and willingly, walked right into one.
As my appointments are exactly 30 days apart, this week, I once again headed back to have another round of injected medicine. This time, our hospital system closed the building where I typically went and sent us to a new location. Driving up, we noticed a vehicle drive-thru for Covid-19 testing. Seeing this was a reminder that the virus was still very present in our community, left me with that same uncomfortable feeling as my last appointment. At this appointment, there were additional staff present along with a handful of patients. Now, every single person, including the security officer, wore a medical face mask. It felt strange to not see smiles. After our screening, my mom was asked to sit in a semi-private seat outside of the location where I was to be given my medicine. Knowing she was close by was reassuring but it was odd to not know the people that were talking to me. Even though I have been a patient since I was 3 years-old, I still like to be familiar with the nurses and doctors helping me. Fortunately, my new nurse was kind and understanding. She asked me questions about ways she could help to lessen the pain, and when I needed it, she helped to make sure that I was more comfortable. I liked her so much that I asked my mom if it was possible to transfer care to her normal clinic location, which is even a different building than where we met. Learning that both my nurse and I were both experiencing change also felt comforting and reminded me that we are all in this together.
After the second appointment, I reflected on the realization that living with new healthcare, social, and school guidelines from the Covid-19 pandemic will be here for a long time. I have adjusted to so many parts of my life through social-distancing, including my healthcare needs, but I am sure there is more to learn. Until our world has a vaccine, I will continue to adapt and be flexible. My senior year of high school begins this fall and while I do not know when life will get back to the way it was, I know that I have the ability to set my belief system to know that I can deal with anything. I also know that under times of uncertainty, it is ideal to have faith and gratitude in our lives. Living with autoimmune conditions might make my time during a pandemic a bit more challenging, but I already developed the resiliency to live my best life and through positivity, I hope that I can encourage everyone to do the same.