Lupus is a mysterious, evil, and debilitating illness that has impacted my life, as well as many others. In the fifth grade, I began to develop symptoms of Lupus but thought nothing of it. The winter before I entered the sixth grade, I was diagnosed with Fascioscapularal Muscular Dystrophy. In the sixth grade, my joints began to swell and ache, the infamous butterfly rash graced my face, and my toes and fingers would turn into a rainbow of purple, blue, white, and red. At the time, my family was active military so we went to a military doctor for help. The doctor we saw told me that it was impossible for girls, especially young girls, to have Lupus. Obviously, this chick was wrong-o. My mom, who also has Lupus and muscular dystrophy, told this doctor that I needed to get tested for Lupus. Thanks to my mom and her advocacy, I got the tests and proved the ignorant doctor wrong. My inflammation markers were through the roof and I had all the antibodies. Once we got the results, I was referred to a rheumatologist where I met my favorite person, Doctor Austin Dalrymple. 

Seeing Doctor Dalrymple, or as I call him, Doctor D, was the first specialist I had seen, besides my neuromuscular doctor (when I went to see my neuromuscular doctor, I don't know why, but I didn't see it as a doctor appointment and didn't think anything of it. Back to the story!), and truth be told, I was terrified- I had no idea what was going on and I have quite the active imagination so naturally, I was conjuring up scary stories of what was going on. I remember sitting on the patient table with my mom next to me and my sister sitting on my dad's lap. I kept fidgeting and I remember being so anxious and scared. Doctor D helped me to feel more comfortable with my illness and started me on some medication that eased my symptoms a bit. A few months after I saw Doctor D, my symptoms became more prominent. I began missing school, was tired all the time, and realized there was something actually wrong with my body. I began several different courses of treatment throughout the years and have tried just about every anti-inflammatory there is. Throughout middle school, I stood out because my butterfly rash graced my face and I was rarely ever in class. In the seventh grade I was on homebound (I stayed home every day but once a week after school hours were over, I would meet with a teacher to try to stay up to date on work). When I was in the seventh grade, the Ebola virus was the world's dilemma. I remember walking to one of my classes and kids were laughing at me and spreading rumors that I had Ebola. Needless to say, going through health issues in middle school is not at all fun and kids are not compassionate. Although, despite the hardships I faced in middle school, the best thing that happened to me was the Benlysta trial for adolescents. Every month I had the honor to go to Cardinal Glennon to get an infusion. For the first few years of the trial, I had no idea if I was receiving the placebo or the real deal. After a few years, I advanced to the next phase of the trial where I got the real deal. For once, I began to feel better and I felt needed. Through this trial, I gained relationships that I hold close to my heart and gained so much respect for Doctor D. During the trial I missed school and needed accommodations to help me succeed. I had a PE teacher who wouldn't abide by my accommodations and yelled at me when I couldn't do one of the activities, as well as a few teachers who wouldn't follow my accommodations and gave me trouble. Doctor D, my hero, went to bat for me, advocated for me, and stood by my side. 

Things in high school were worse though. My family had just moved to a new town and I had to socialize and meet new people. Socializing and meeting new people when in the midst of a flare is quite difficult. I missed a lot of school and was on and off high doses of prednisone, looking like the marshmallow man from Ghostbusters. Through the duration of high school I continued to miss school, I went into continuous flares, and my muscular dystrophy was progressing. In my senior year of high school, I had my worst flare yet. I had mouth ulcers, which we later learned was a result of the disease pemphigus erythematosus, another autoimmune disease. I couldn't eat, drink, or really talk as much (although I didn't let that stop me from talking), and was continuously hospitalized. Trying to treat the mysterious ulcers, I was put on soooo many different medications and none of them helped. We first thought it was something else, and I was put on Thalidomide which made me drowsy and just... not me. During this flare, I couldn't focus and I barely passed my classes. I was miserable and alone. The Thalidomide did help and I FINALLY went into remission for a year... and then it came back. 

The summer I graduated, I had routine labs done for my primary doctor, and my liver enzymes were through the roof. My primary doctor's nurse called me and told me that I needed to call my Gastroenterologist and tell him my results and get to an emergency room. Luckily my gastroenterologist made some time and got me in that day. I remember my dad took me, and I was scared out of my mind. They wanted repeat labs and a livery biopsy. While we were there, they contemplated admitting me but decided against it. When I got the biopsy results back, I was told I had autoimmune hepatitis. I was put on more immunosuppressants and more prednisone. My rheumatologist told me that once you had one autoimmune disease, it's common to have more, and after hearing that, I was furious and mad at the world. I hated that I had another disease to deal with. 

Flash forward to today, I am in college (I have a 4.0 GPA which is amazing!), my autoimmune hepatitis is in remission, I've got the best support system, and go get coffee with my best friend all the time. I have a lot going for me, however, I still struggle. My Lupus impacts my day-to-day life. I'm always tired and in pain. I have flare-ups and take medications that wipe me out. As a kid, I didn't quite understand what Lupus was or how it would impact me. As I grow older and take the hits Lupus throws at me, the more I realize that this is my life. I worry about my future and relationships. I worry if I'll be able to hold a job or finish college. I wake up every day and wonder how it's going to go: am I going to be in pain? am I going to feel good? will I lay on the couch all day or will I be productive? When I have a new symptom the question "is this going to be the new normal, is this temporary, or is this just some wonky thing?" Some days feel impossible and I'm so frustrated and scared for my future, and I get tired of trying. 

Despite Lupus being a terrifying anomaly, there have been some blessings that have come from it. The greatest blessing for me has been the Lupus Foundation- Heartland Chapter. Through this amazing organization, I met girls my age, older than me, and younger than me who have Lupus. Every summer I attend the Summer Jam youth retreat where I get to hang out with these girls. Through this retreat, I met my best friends Courtney and Elexis and gained so much support. This retreat, as well as the Foundation, has done so much for me, and I cannot even begin to emphasize how amazing this foundation is. Truth be told, I wouldn't be where I'm at without them. This holiday season, I ask you to donate to the Lupus Foundation- Heartland Chapter. By donating, you help the Foundation to assist people with Lupus and help fund the youth retreat, sending a girl to camp to get the support she needs. Our youth retreat is the only Lupus retreat in the United States. We have girls from all areas of the country attend this retreat that lasts three days, where they gain relationships, learn about their illness, learn coping mechanisms, and so much more. This retreat provides so many opportunities for adolescents with Lupus- especially newly diagnosed gals. By donating, you are helping someone with a debilitating, scary disease, get the support and help they need. Please feel free to share my story with friends and family, and support Lupus Foundation. Happy Holidays <3