By January 2023, the doctors were treating me as if I had sarcoidosis, an autoimmune related disease. I was prescribed an immunosuppressant which made me ill twice a day like clockwork. I had to call out from my job and work remotely until my body adjusted. After a week or so at the therapeutic dose, the sickness did not go away, so the provider pulled me off of the medication. I was still on steroids at this time, but was tapering down to a lower dose. At the end of February, I tested positive for covid for the second time. It was pretty mild this go around. Overall, I was maintaining, but my cough was still persistent and seemed to be getting worse. I’d get flare ups upon exertion, being around strong scents, and being exposed to cold and hot air. I was becoming more familiar with my triggers.
One Friday evening in March (around St. Patrick’s Day), Evan and I went out to dinner. Having dates and outings and keeping adventure alive were all things that made us feel “normal,” despite the experience we were going through as a family. We were just about finished with dessert when I had a significant coughing spell. My heart rate jumped to the 150s, but my oxygen saturation stayed in the safe range. When we got home, I sent my provider a message in the patient portal letting him know of the incident. The following day, Saturday, he called me and told me to go to the hospital to make sure I wasn’t having a pulmonary embolism. I dropped everything I was doing and Evan and I headed to VCU.
While I didn’t have a pulmonary embolism, they admitted me. Not only were my lungs severely inflamed, it turned out I had rhinovirus and was still testing positive for covid. My shortness of breath was also worsening. The doctor said an open lung biopsy would be a sure way to tell what was going on with my lungs. At this point, sarcoidosis and interstitial lung disease were the two lung diseases that were on the table. I ended up transferring my care to VCU since they were going to be performing the biopsy…
Simultaneously, there were several significant happenings already on the books: a major exhibition installation at work in April, and two out of town weddings in May and June. Since both of the weddings involved traveling by plane, and I couldn’t fly after surgery, the thoracic surgeon scheduled the biopsy a couple of days after we got back in town on June 13.
The exhibition installation proved to be a major success and highlight of my career as an exhibition designer. We co-produced the exhibit with the sculpture artist, which involved intensive planning for over a year and a half. Five large-scale sculptures were installed over a twelve day period. I was so fortunate to have carried the exhibit to the finish line (along with the team), and not be interrupted by my biopsy.
The two weddings were incredibly meaningful, too. The one in May was a reunion with my closest friends, and some of them hadn’t met Evan. He got to see a big piece of my heart in real time. In June, we ventured out to Colorado for another friend’s wedding in Boulder. As soon as we touched down in Denver, adventure took hold of us. In addition to the majestic Rocky Mountains, beautiful Colorado landscape, and celebrating our friends’ union, we experienced Meow Wolf, Denver Botanical Garden, a show at Red Rocks, and another show in Boulder. It was at Red Rocks where my limitations became even more obvious due to the elevation. No matter what, our family continued to seek joy and live life to the fullest. Little did I know that I’d be prioritizing living life fully, in an even more intentional way, a year later.
