Victoria Gibbs: The long road to diagnosis
I remember like it was yesterday, "It looks like you have lupus."
After hearing my doctor utter these words, I cried. Following that, with a flood of tears streaming down my face, I asked, "Is my hair going to keep falling out?" Both the doctor and my father smiled, she responded, "most likely for now." My life changed immediately at that moment. I barely knew what lupus was, but I knew that I didn't want to have it.
The months leading up to my diagnosis were painstakingly difficult. At the time, I was training for the National Yoga Asana Championship and was pushing my body to new levels. I was in the yoga studio six or seven days a week, taking bikram yoga, and rehearsing my competition routine diligently both before and after class. In the beginning, I felt good, I thought I was invincible. During that time, I was working for a hedge fund, in the office Monday to Friday from 8:30AM to 6PM.
At the end of my work day, I'd rush to the yoga studio for class, and end my day with a 90-minute commute back home to Huntington, Long Island. I was having dinner at 10PM, in bed by midnight, and up at 6AM to do it all over again. I would spend four hours both Saturday and Sunday training for this competition and I thought I had it all under control.
It was finally in March, after coming back from a weeklong stay in Puerto Rico that I noticed something unusual. I had gotten a severe sunburn. I never had one before but the sun was so strong in Puerto Rico that I thought nothing of it. I continued my daily work and yoga routine and finally in April, I caught a cold that never went away. I took time off from work thinking that all I needed was rest.
I had never slept so much in my life. I went to an Urgent Care facility and they diagnosed me with the flu. I left with no medication and was told to keep resting. All the rest in the world wasn't helping. I reluctantly cut back on my yoga training because I simply didn't have the energy or the strength to take class or even worse, train for my competition.
In the following weeks my face exploded and I had what sounded like tuberculosis. I went back to a different Urgent Care facility and they told me I had the mumps. That didn't seem likely because I was vaccinated as a child but I didn't argue with them. My colleagues advised me to stay home and rest. At that time I was working about half of the week and sleeping the rest of the time. I was devastated, it was now early May and my competition was two weeks away. I could barely move but I pushed through. I had worked so hard for this competition and after placing second in the New York regional, nothing was going to prevent me from competing.
Despite my determination, I felt terrible. I took one last yoga class the week before the competition which was May 20th and figured that more rest would get me through. Two days prior to my departure I noticed that I had several white spots in my mouth and my throat was burning. I couldn't comfortably get any food down and was in extreme discomfort. I pushed it aside, purchased throat medication, and kept on going. Things came to a halt the weekend of my competition in Jackson Hole, Wyoming. I could barely drag myself out of bed; I had an insane fever, and started noticing these painful blood blisters on my fingers. When it came time to compete my body literally collapsed underneath me. I didn't perform up to expectation and was extremely disappointed. Overall, the experience was terrible. I came back to New York and didn't step foot again into the yoga studio. I went back to work and was barely surviving. I began getting these awful migraines every time I looked at the computer screen.
I realized things were getting bad when my ex-boyfriend would call me at work and I didn't recognize his voice or his number. He urgently encouraged me to leave work; I was now becoming a danger to myself. In a cloud of confusion he forced me to go back to an Urgent Care facility near his home and there they finally gave me steroids and encouraged me to see my regular physician.
My parents live in Montgomery, NJ and I didn't have the strength or the energy to commute from Long Island, where I resided with my aunt. At this point, it was June and my health was deteriorating rapidly. It came to the point where I realized that I was in serious danger. I was no longer recognizing familiar faces, voices, or places. I'd be at work and not know who my colleagues were, couldn't remember where I worked or what floor I worked on. I could barely figure out when I got to the train station, and once I got there, I'd spend almost 45 minutes walking in circles around the parking garage trying to find my car. It was at my parent’s insistence that I finally went home to Montgomery. It was a miracle that I even got home but once I arrived on my 31st birthday, little did I know I would be spending the entire summer there.
The doctors’ appointments began immediately. At that point, I barely knew where I was or what was going on. My motor skills had declined significantly, I could barely walk without holding onto someone or something, I couldn't feed myself, I was experiencing severe night sweats, my hair was falling out in chunks, my fingers were covered in blood blisters, also known as Raynaud’s disease. I had high fevers, my mouth ulcers had taken on a life of their own, my taste buds were no longer functioning, and all I wanted to do was sleep.
Finally, my rheumatologist diagnosed me with lupus. Two nights later, I got a fever of 105. My parents couldn’t lower the temperature and dragged me screaming to the emergency room. After being admitted, they ran a battery of tests on me. I was poked and prodded at for an entire week, it was confirmed that I had lupus. The real recovery process was about to begin.
I took off the entire summer from work, yoga, and everything. For the first time in my life I had to selfishly focus on myself. I did the best I could to handle my current situation with grace but when you are going through all of those changes physically, mentally, and emotionally, life becomes challenging. The amount of times that I would say, “I’m fine,” when really, I felt like I was dying inside. The reality of being on a significant amount of daily medication itself was overwhelming. Overall, I couldn’t have gotten through the initial stages of my recovery without the love and support of my family and close friends.
The good news is that being diagnosed with lupus wasn’t the end of the world, but rather a new beginning. It’s amazing when I look back and think about how I feel now versus before all of this began, when I thought I was feeling good. While I’m not 100% and still working to gain strength and stamina, I feel significantly better than I have in the last five years. I know that everything is going to be all right.
If you are struggling with mysterious symptoms and suspect that it might be lupus, there are several things that you can do – educate yourself about lupus, communicate with your doctor, and see a rheumatologist.
Our health educators are available to answer your questions and give you the help you need.Contact a Health Education Specialist