Lupus was always a dirty secret I kept to myself wanting to be normal, and not wanting to go through trying to “prove” chronic illness to others. I was always called a hypochondriac. I remember in 4th grade telling my parents I was in pain, that it hurt to move my hands and knees, and they didn’t believe me. No one paid attention until my knees were the size of cantaloupes. They listened after that. 3 years of various unexplained symptoms (hair loss, weird rashes, fatigue, extreme weight loss, pain), and I finally received a diagnosis at the age of 12.
I cycled through numerous medication regimens. Medications with benefits that failed to outweigh the negative side effects: Imuran, cellcept, naproxen (for pain that was a joke), quinacrine, thalidomide. Prednisone and plaquenil the staples in the Lupus world, allowed me to survive through high school. When I went to university, my symptoms changed I was no longer being attacked on just the inside, my skin was literally falling off, huge bullae from the top of the head (including inside my mouth) to the bottom of my feet. If I rubbed against anything, minimal trauma a new bullous would pop up. It felt like my skin was on fire all the time. I dropped out of school and submitted to a 6month cycle of cytoxan chemotherapy treatments.
Three years later, I was able to return to school. The semester before completing my degree, I was struck with another serious flare. This time I opted to stay and finish. Walking the block from the parking garage to my class, I had to sit on the curb and rest about every ten steps or so just to make it to class. I graduated weighing 98.6 pounds gasping for air and praying I didn’t pass out in the middle of the ceremony. I was too exhausted to even go out and celebrate or have dinner afterwards. A week later I was undergoing another 6month cycle of cytoxan.
My symptoms changed again, I wasn’t making blood the way I should and was severely anemic. That year, I had over twelve blood transfusions 2-3 bags of blood each time. The blood typing process became harder and harder with each transfusion because my body was making antibodies to the antigens in the donor blood. It took a week to find and have suitable blood shipped in from other states.
In 2013, I had a flare that knocked me down literally. I lost the ability to use my legs, I couldn’t feel them or hold myself up. There was another 6month cytoxan cycle. No improvements this time so a new medication was introduced called rituximab. I had a few rounds of that, and the details are pretty blurry. I spent a full month in a rehab hospital trying to learn to walk again. I was on morphine for the pain, and I was feeling everywhere except my legs. I spent 2 years in a wheel chair.
With the help of PT and some lifestyle changes, I am doing better than I can even remember. I’ve cut GMOs almost completely out of my diet. I stay away from packaged food, and I supplement my plaquenil and dapsone with chiropractic interventions and essential oils. My quality of life has improved exponentially in the last 20months. I’m enjoying life again, I’m no longer in pain every day, and I have a future I’m excited about.
Xena Morgan Lupus Warrior
