Teen Talk: Summer 2007 Lupus Now magazine
The Voice of Reason by Brittany Black
I remember just a few years ago how I could not wait to start college with my best friends from high school. After graduation, I was practically out the door! Starting at 17 years old at the University of Florida during the summer and living in an apartment straight from a scene in the movie Spring Break was more than I had hoped for. Being independent and a co-ed at one of the biggest and best schools in Florida fulfilled my dream. It didn’t get much better than this!
But by fall I was tired and having difficulty with the pace of school and partying. My parents became concerned and insisted that I see my physician. In January I was diagnosed with lupus nephritis, and my entire world changed. Frightened and unsure of what was to happen to my life, my parents and I developed a plan. I prioritized what was most important and de-cided that it was not an option for me to leave school. I started an aggressive treatment plan, taking more medications than I could have ever imagined and undergoing monthly chemotherapy. I was determined to manage my medications, appointments, and school.
I needed lots of rest and a controlled environment that could support my treatment. I immediately left my three roommates at the "party" apartment and moved into my own place away from campus. My new apartment was quiet and peaceful, and it became my sanctuary.
Zach, my family's Jack Russell terrier, moved in with me and became my constant companion. Every month my mom would stay with me for three or four days, during my chemotherapy treatments. She eliminated fast foods from my diet and loaded my freezer with home-cooked foods. I tried to avoid junk foods, incorporated lots of fresh green vegetables in my diet, and drank bottled water religiously. When I did have a junk food "cheat," I drank more water and ate more green vegetables.
The eight months of chemotherapy were challenging. Although I knew there would be physical changes, the hair loss and the weight gain from the steroids tested my self-confidence. I decided to cut my long curls that were thinning anyway. My mom went with me and surprised me by having her hair cut shorter too. Knowing I had someone who was willing to do this with me made it easier.
I learned quickly that it was important to pamper myself. The night be-fore a biopsy or treatment, I would paint my toenails and try new shower gels. (I still do!) Family and friends would also give me gift certificates for massages and pedicures. I created a relaxing physical environment with music, aromatherapy, and a plant, which, in spite of me barely watering it, lived for three years. (To this day I don’t know how.)
My circle of support included my parents and friends, who were constant during the good days and the bad days. I had no energy to reassure friends about my lupus and what was happening to me; I needed friends who cared enough to learn about lupus and who were there without asking questions. Although my parents supported my plan and everything I was doing, they also strongly encouraged me to see a counselor to have someone to discuss my feelings with.
Though family and friends provided a strong support system, I felt it important to identify with other people with lupus. We contacted the Lupus Foundation of America's Greater Florida Chapter and became members. There was no active support group in the area, so I joined forces with another student with lupus and started a group in the Gainesville area.
Through the LFA, Greater Florida Chapter, the University of Florida and the Shands Hospital physicians, we were able to bring educational seminars to the area. Our first educational event was a huge success! There was overwhelming interest among young people to learn about lupus, and our support group grew. I was surprised to discover that in helping others, I was helping myself.
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