One of the hardest things about Lupus is that your mind thinks you are the person you've been for the last __ amount of years, but your body becomes this unpredictable thing that contradicts who you feel you are. You've been a track star all your life; all of a sudden you get this disease that now makes you feel as if you're just "a person with Lupus." It changes the way you view yourself. You were once this strong, invincible being and now you're this fragile, achy weakling. Your optimism is challenged with every flare and bad test result. You feel as if you don't have control of your body so you can't possibly have control of your future. Every day is "Lord willing." It's so easy to slip into depression or get stressed out. Ironically, stress triggers Lupus flares so you end up worrying yourself even more sick. You go from seeing doctors once a year for a check up, to seeing one every few weeks, giving a gallon of blood each visit, and running tests anticipating further complications. How do you deal?
I went back to Utica College for my second semester in 2005. I already felt like I was on my own, so I acted as such. I didn't let people know about what I was going through on a daily basis, even when my pericarditis returned. I think one person saw me walk back to my dorm from class really, really slowly, clutching my chest, and asked what was wrong. I doubt I gave her a real answer. I'd still wake in the middle of the night to put a hot washcloth on my chest repeatedly so I could go back to sleep. I noticed this mainly happened on busier days, and I started to make a connection with how my body felt and how my day went. I went to the college medical office and the doctor gave me Arthrotec which cleared it up right away. I think around that time was when I began to see the value in taking my medications EVERY day and on time. (I used to miss doses pretty often.)
When I finally realized that being a part of so many organizations was draining me both physically and emotionally (the drama I was having with my sorority and with the radio station was just too much on top of everything else) I began to be able to predict the nights and mornings that would be difficult for me. That made me honestly say to myself that I needed to slow down a bit. I took a long hard thought about what made ME feel good and not what I wanted to prove to everyone. I defined myself by how 'necessary' I was to others and to my college. Being a part of all these things made me feel important and kept my mind off my ailment. However, what actually made me happy and gave me peace? I finally confessed to my dance team that I had Lupus and that that was why I avoided practicing 'full out.' I missed some campus parties to spend the night in relaxing, watching The Muppets Take Manhattan or the Matrix Trilogy in a robe while sipping on sparkling cider. (Calming, huh?) I learned to say no to organizations that needed my help but would really put me out of my way. I eventually stepped down as choir director. Instead of focusing on the sorority drama on my campus, I focused on the community service required and found healthy sisterly bonds with Sorors and other Greeks elsewhere that made me remember why I joined Alpha Kappa Alpha Sorority, Inc in the first place. I stopped fighting my body and overcompensating for the fear of losing these titles that defined me. I zeroed in on the organizations that best fit me and where my heart was. It became less about keeping busy and more about impact. (Thanks for opening my eyes to this, Paul Lehman.) I started to speak to a few people about what I was going through: Carolyn Carstensen, Alane Varga, Ken Kelly, and a local Lupus support group where I was the only person under 35 there. I realized that at the end of the day, I have to take care of myself and surround myself with people who want the best for me. Lupus doesn't define me. It's a part of me. When you let something define you, it controls you. I do not want Lupus to control me or my thinking. The fact that I am walking and speaking and living means I'm capable to be more than just a person with a chronic illness. Lupus is a part of my life. I had to stop fighting it and start working with it.