COVID-19, Advocacy, and Hope
At the beginning of this pandemic, I thought I had an advantage over others. Feeling anxious and unsettled is familiar territory to me due to my experiences with lupus. Not knowing when and if I will get sick. How my body will respond when I do get sick. Having to be vigilant about washing my hands and staying away from others who are sick. Feeling isolated. Waiting for a cure. I’ve been through all of this. The truth of the matter is having a disease like lupus always complicates any health related situation and I definitely felt its affects soon enough.
A week before the shelter in place was announced, I was supposed to fly to Washington DC to attend my first Lupus Advocacy Summit held by the Lupus Foundation of America. Needless to say, the onsite event was cancelled. Luckily, the organizers had a plan B, and I was able to participate virtually. I got to meet with the office of Representative Jackie Speier and Senator Kamala Harris and it felt good to be able to advocate for lupus patients.
With the rapidly evolving situation at work, I cancelled my vacation so I can be available to my team for questions and support. A few weeks later, I developed a fever, sore throat, and diarrhea. Since I was on a plan to reduce one of my lupus medications, I didn’t know if this response was due to a lupus flare or COVID-19. As an essential employee going onsite and living with my 81 year old mother-in-law, I felt I couldn’t take any chances and decided to get tested for COVID-19. Luckily, the results were negative for COVID-19. My fever eventually subsided but I had to put a stop on tapering my medication. This failed attempt to get off the steroids completely was disappointing, but not unexpected since I’ve tried and failed several times in the past.
Weeks later, hydroxychloroquine, a medication commonly used to treat lupus and other disease was touted as the miracle drug for COVID-19. Before proper testing was done and scientific conclusions were drawn, people started hoarding the drug and the supply ran short. I was fortunate enough to order a 3 month supply right before the shortage, but some of my friends were not. Treatment options are limited for lupus patients to begin with and to have the medication taken away from patients who really depend on it is truly wrong. However, this incident did allow me to experience the power of advocacy. The Lupus Foundation of America along with other organizations jumped on the issue immediately and the supply was restored for patients. They also provided tips and resources on online pharmacies to give patients alternate options if their local pharmacy was out. The silver lining behind all this was the Lupus foundation of America got the most number of hits on its website during that period because people wanted to know more about lupus.
Having to navigate the challenges of COVID-19 definitely created more work and stress. As the months wore on, I was feeling fatigued and had trouble focusing. I thought I was starting to get burned out since I didn’t get to go on vacation back in March. I also wasn’t getting enough exercise. It wasn’t until my routine checkup in August that I realized there was something wrong. My white blood cell counts dropped below “my normal”, which is already below a healthy individual’s normal. I got test again to confirm the results and it continued to drop. My doctor was concerned and increased my medication.
Even though I was very busy at work, I decided to take a week off to focus on getting rest and recovery. I’m one of those people who can’t really disconnect unless my cell signal and Wi-Fi is cut off. We decided the best place to truly do this is to visit the national parks. We made it to a hotel just outside of Yosemite, but California was experiencing the worst fires in history. We were constantly monitoring the air quality and fire situation and eventually redirect our trip to Morro Bay and Paso Robles. It didn’t turn out to be the relaxing trip I had hoped, but we were fortunate to be able to make last minute changes fairly easily. A few days after I came back home, I started having a fever and night sweats. I got tested and was negative for COVID-19 again. The fever came on intermittently but the night sweats were constant and disrupted my sleep. Eventually, after two weeks and more adjustments to my medications, the fever and night sweats subsided. My white blood cell also came back up.
Although I’ve been very open on my blogs, it still isn’t always easy for me to talk about what I’m going through while I’m going through it. Occasionally, when you get me in the right mood and I’m with close friends and colleagues, I do share. What’s interesting is that the sharing is often reciprocated and I would find out the person or a family member is going through something similar. I do recognize that you don’t need to have lupus to have similar experiences. That is one of the challenges with diagnosing lupus, the symptoms are varied and often mimic other diseases. With all that’s happening around us, I have heard from many friends and colleagues about how challenging it has been to manage. If there is a time to justify feeling sad, depressed, angry, and frustrated, it would be now. Don’t be afraid to let yourself feel these feelings and share with a close friend. I remain hopeful because from my daily interactions with the people around me, I see and experience kindness, compassion, empathy, and resilience. I am grateful those in my circle has remained healthy and well. I also hope that through this, people will have a better appreciation of what we’ve been taking for granted, breathing clean air, being able to travel, going out to eat, getting together with friends…
There are so many worthy causes to contribute to this year, but I hope you will find it in your hearts to include the Lupus Foundation of America.