Lupus and My “New” Normal
Last updated: March 2023
Living with lupus, I had to be very cautious when it came to my health, even before the pandemic hit. The common cold or the flu could affect my immune system negatively, and I could end up in the hospital again.
Even before it was mandated, wearing a mask in public, especially on the subway, was already my "normal." When NYC and the rest of the world went into lockdown, I knew it was serious. I barely left my house, and when I did, it was for doctor's visits or to get my labs completed. No one besides the people I was living with was allowed in the house. Vacations were canceled. I worked from home full time. I was starting to feel like a prisoner in my own home.
The daily walks I would take would be in my backyard, and the people I saw and talked to were through the telephone or computer screens. The news on the television was so grim, and NYC was at the epicenter of it all. I also had lost 2 family members from COVID. Everything was really starting to take a toll on me, mentally and physically.
When the vaccines were finally out, I had a long talk with my doctors about the pros and cons. I was very skeptical at first, but in the end, I decided to get it, and it was the best decision for me. I felt it provided me with some sort of protection with the vaccination and was starting to ease up. I started walking around the block. I decided to mobile order a drink from Starbucks. I went grocery shopping with my mom. I was just over the moon about the little things that people took for granted. Of course, I was still extra cautious cause news about the vaccines and COVID was still evolving every day. I double-masked and wore gloves. Hand sanitizers were always in my purse. On some occasions, I even wore a face shield. I could feel the stares, but I'd rather be safe than sorry.
Feeling on top of the world
These past few months, I was starting to feel like things were falling back in place. I had just gotten married. I had finally spent some time with family and friends. I dined indoors and outdoors. I hopped on the subway several times. I went on vacation and rode a plane to my destination. I went to the movies. I saw 4 Broadway shows in less than a month. It just felt so refreshing, and I was feeling on top of the world.
Now here we are with 2022 slowly approaching, and my holiday plans are at a standstill. With the news of the Omicron variant, I'm beginning to freak out again. Just when I thought I might have a semi-normal holiday with family and friends, these manic thoughts are running through my mind. The days of spontaneity were long gone. Living with lupus, I was very conscious about my health and my surrounding people. It's a different level of precaution when you have lupus or any other autoimmune disease or comorbidities. The pandemic just added on an extra layer of worry.
Others may say that I worry too much, but it is my health at stake at the end of the day. So, I will do what it takes to ensure that I am healthy. I am due for my booster dose in a couple of weeks, and I know that will bring some sort of relief to me. But, the thoughts will always be there lingering. COVID or not, this is my "new normal," and I'm sure for a lot of others as well.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?