Patient Voices | Victoria Gibbs: Lupus Diagnosis

November 4, 2023


Victoria Gibbs: Lupus Diagnosis

I had just returned from a vacation in Cozumel, Mexico, where I had gotten my first sunburn. I am of a darker complexion and never had a sunburn in my entire life. At that time, I thought nothing of it. I figured that it was normal and like any other sunburn, would eventually go away. After a week of basking in the sun, I settled back into my daily routine. I was employed at a hedge fund in operations working very long hours, commuting back and forth from Long Island, all while preparing for a national yoga competition. 

Yoga was, and still is my passion, and every day after work to decompress, I would go to the yoga studio for a ninety minute hot yoga class. I always felt so calm and at peace on my mat, the one place where everything made sense. Likewise, at this particular time, I was spending an extra thirty minutes a night and my weekends training for the national yoga competition. I had a strong practice and really wanted to qualify for the International competition, it had always been my dream. During my intense training, I started to notice that I stopped sweating in the hot room. All of that seemed so bizarre to me, yet I pushed everything aside and continued to prepare for the competition. 

I continued in this same vein for a few more weeks, until my body literally, and figuratively stopped functioning. Initially, I developed a very bad cold, which seemed to never go away. I cut back on my training and spent every weekend resting in bed. I managed to continue working, however, the stress of my daily commute and work obligations began to catch up with me. My body started to swell and my face blew up like a chipmunk. I went to urgent care to get a diagnosis as my primary physicians practiced in Princeton, New Jersey where my parents live, and making that journey seemed like a huge imposition. They diagnosed me with the flu and told me that my chipmunk face was likely due to having the mumps. At the time, that seemed strange to me as I was vaccinated as a child for measles, mumps and rubella. They told me to take a few days off from work and continue to rest.

I managed to motivate myself to head into the office towards the end of the work week, but as soon as I did, my inflammation got worse and my face got fuller. I was starting to bloat everywhere. I spent that weekend at home resting and took the entire next week off from work. Upon my return that Monday morning, I noticed that the inflammation started to reduce all over my body. I felt like things were moving in the right direction and I started to train for the national competition once again. I got back to what felt like myself, however, I started to notice some white spots in the back of my throat. I thought perhaps I was eating something that I was allergic to, although I knew that I was allergic to nothing. I created any story in my head to justify my need to train. I went back to urgent care and again they sent me home and told me to rest. Overtime, the white spots in my mouth got worse, to the point where I could not eat, and my entire mouth felt like it was on fire. In addition, I started to notice that my motor skills were declining and my hair was falling out in clumps. For the first time in my life I had bald spots, wasn’t walking well, and my reflexes were quite slow. 

I continued to ignore all of these signs and tried to forge ahead. As my hair continued to fall out, my motor skills further declined, the white spots in my mouth got worse, which I now know to be mouth ulcers, I then started to develop blisters on my fingers. At first the blood blisters were just unsightly, but overtime they became painful, and appeared as if my fingertips were disintegrating and holes were actually forming on my fingers. 

Unknowingly, for the last time, I forced myself to go back to the office and did not remember how I got there. Subconsciously, I think muscle memory got me from Pennsylvania Train Station to my office in Midtown Manhattan, and as I walked into the lobby, I vaguely remember having to ask the doorman what floor I worked on. He escorted me to the elevator and as I rode up, the haze over my brain temporarily lifted. I walked to my desk, sat down, and began to do my daily work. As soon as I stared at the computer, I got a pounding migraine. I held my head down, closed my eyes and hoped that it would disappear, but it didn’t. I looked back at my colleague and told him that I had to go home immediately. He assured me that he would handle my tasks for the day and would let the rest of the team know that I was feeling unwell. Before I left, my phone rang, it was my father. He called me every morning to checkin and then he would call again sometime in the afternoon. I answered the phone and did not recognize his voice. He kept saying, Toria, it’s Dad.” I remember saying, Hi!” but honestly, I had no clue who I was speaking to, I was confused and in a fog. He told me to go home as he realized that something was seriously wrong.

As I attempted to go home everything was a blur. In particular, as I exited the building, it was extremely hot, and the sun was brightly shining. I looked up into the sky, and I blacked out. I somehow managed to get to the train station and when I looked at the board to see what track my train was on, the words were not making any sense. Despite that, the colors were popping out at me. I knew that my train was on the blue line and thankfully I made that connection and got on the correct train. However, I couldn’t find my ticket to show the conductor and I’m fairly certain that halfway through our conversation, I blacked out. When the train got to the last stop, he escorted me off and as I entered the parking garage I couldn’t find my car. I circled the parking garage countless times and eventually something clicked. I got into the car and drove home, but at that point, I should not have been behind the wheel. It was a miracle that I returned in one piece. After that day, I didn’t step foot in the office or the yoga studio again. 

In the meantime, I somehow convinced myself that going to the competition, despite not having practiced in weeks and along with my bizarre symptoms, was a good idea. My symptoms only got worse, I contracted a fever, and when I stepped on stage to compete, I literally collapsed. At that moment, I didn’t know if I would ever practice again. 

I never quite alluded to my parents how sick I really was, but my dad and I spoke often enough that he knew something was definitely wrong. He encouraged me to come home to Princeton to see my doctors, but the thought of making that trip from Long Island seemed unfathomable. After returning from the competition In Jackson Hole, Wyoming, my parents forced me to come home, and when I got there, I had no idea where I was nor did I recognize either of them. The next day, I saw my primary care doctor who had me do bloodwork and based on the results highlighted that something was off with my immune system. He then recommended that I see a rheumatologist who inevitably diagnosed me with lupus. I immediately began to cry as I had never heard of lupus or knew what it was, but I knew that I didn’t want to have it. I was sent home with some prescriptions, which I filled, and once home crawled into bed. My fever returned that day and was at a high of 106 degrees. Nothing could bring it down and my family rushed me kicking and screaming to the ER where I spent an entire week undergoing a battery of tests, all of which confirmed my diagnosis of lupus nephritis. 

My symptoms started in February 2016 and I had a diagnosis by June that same year. I spent the entire summer at home with my family resting and recuperating, all of which was mentally and physically taxing. It was the same routine everyday and my medication was so aggressive that it often left me feeling ill. I had never slept so much in my life but I was grateful to know what I had and that it could be managed. While being completely frustrated, angry, lonely, sad, and exhausted, everyday got a little better and I was slowly getting stronger. I spent a lot of time researching lupus and writing. I needed to educate myself and journaling became my outlet. I learned to make peace with my situation but I often wondered why me?! It was most challenging not knowing what brought lupus on; was it my diet, my lifestyle, my past traumas, etc. The wheels spun constantly and while I still don’t know the answer to that question today, I made it a priority to focus on what I could control surrounding my diagnosis. 

I eventually got back to work and the yoga studio. I learned so much about myself and lupus that summer and I have not stopped learning. I made a lot of changes after my diagnosis but inevitably, they were healthy changes. I’ve really leaned into health and wellness and I am truly grateful for both the good and the bad days. While the bad days are challenging, I stay positive, take it one day at a time, remembering that everything is temporary, and that this too shall pass. I am stronger and more positive than I ever thought possible and I do my best to share that strength and positivity with others. 

By Victoria Gibbs

Victoria Gibbs is an incredible lupus warrior, a yoga and meditation professional, wellness retreat host, yoga model, and health and wellness influencer based out of New York City. She grew up in Princeton, NJ and is a former ballet dancer and competitive yoga athlete. To watch Victoria’s most recent Guided Yoga Session for Lupus Warriors, you can view the session here, on Lupus LA’s YouTube Channel! To learn more about Victoria, visit victoriagibbsyoga.com.