I was first introduced to the term “lupus” by my best friend Kaitlyn. In middle school, Kaitlyn and I had mud fights at carnivals, and we would dance to Beyonce’s “Halo” at the school dances. In high school, she jokingly proposed to me with a ring pop in front of a large crowd and we rode a kiddie rollercoaster and fake screamed like it was the scariest ride of our lives. If I was upset, she would be standing outside my classroom door ready to pull me into a hug. In early 2011 she showed me the spots on her stomach that she went to the doctor for and in that same day told me “What if I die? Kayla, if you ever died, I would sit in a corner with a baseball bat, rocking back and forth like a crazy person, talking to the sky as if you could still hear me.”
My lupus journey began when Kaitlyn’s unexpectedly ended on September 15th, 2011, when she passed in her sleep from a blood clot due to lupus complications. We were 15. I never imagined that I would be the one talking to the sky.
A popular saying that the lupus community is familiar with is “But you don’t look sick…” which is why it is so important to bring awareness to the fact that lupus is often an ongoing internal war and unfortunately some may not win their battle. We did not know just how sick Kaitlyn was. She was active, energetic, and a great friend to many.
Kaitlyn had written in my yearbook that I always stick up for her. I plan on continuing to do so by fighting lupus and I ask you all to “stick up” for those with lupus as well.
I have participated in the lupus Walks since 2012 but really joined the LFA, Indiana Chapter when I was trained to be a lupus support group facilitator for Bloomington and then took over the online group. I worked with Eli Lilly and Company on multiple occasions to develop lupus clinical trial design. I traveled to Washington, D.C. for three years in a row to speak to Congress to elevate lupus on the nation’s healthcare agenda. I spoke to public relations classes on campaign development and gave a speech at our Chapter’s gala. I was awarded 2017 Volunteer of the Year and was the office manager of LFA-IN in 2019 before going to work at a local hospital. I am now pursuing a master’s in healthcare management, which will be my 3rd college degree. I know I want to help people. I know I am making my best friend proud, even if I cannot hear her responses back from the sky.