An Athlete Forever

The pain you feel today, is the strength you feel tomorrow.

Anonymous

I’ve been an athlete my whole life. I was a competitive gymnast for 8 years, and a competitive diver for 5 years. A back injury ended both of my careers way too soon. It’s taken me a long time to heal mentally and emotionally from my early retirements, which happened before I was ready. Gymnastics is a sport that you can never really go back to, so I chose to coach, and now I’m back in the gym. I have always wanted to go back to diving. I dove for 5 years, I was the high school Rookie of the Year, a Town of Hempstead champion, I had an undefeated season, and I was All-Conference. I had to stop right before my junior year of high school, because I fractured my back. I was upset, but I always had the thought of eventually going back in my head. When I was finally ready to start diving again, my crazy medical journey started. Everything was pushed aside, and it wasn’t thought about again for a long time. I went through a grieving process in the months after my diagnosis, I grieved the person that I was before all of this, and I grieved the thought of the person that I was supposed to become, the person that I was supposed to be in a life where I was healthy. I was so angry, so frustrated, so sad. I thought that I would never be myself again, and I felt that way for a really long time, then everything changed. When I was put on Methotrexate in September, I never expected the way that it would make me feel, the way that it would change my life for the better. It’s the reason that my symptoms are under control right now, and for that I will be forever grateful. One week ago, I went back to diving. I became a diver again, and more than that I became myself again. I never thought I would step onto a board again, and it was surreal standing up there. My dives weren’t the prettiest, but they were perfect to me. I was diving with Lupus, CREST Syndrome, and MCTD. I was so proud of myself, and so thankful for the support of my family, friends, coach, and fellow divers. I’m going to dive once a week, and hopefully the dives will get better, and the bruises on my legs from getting out of the pool will grow lighter. I’m often asked if I knew what I know now about how my life would turn out, would I go back and change it. In the months following my initial diagnosis, I would have 100% said yes, but today, I say no. I wouldn’t go back and change it, because it’s made me the person that I am today, and in an odd way, I’m thankful for that. I don’t think that I would have gotten back up on that diving board, if it wasn’t for the Lupus, CREST, and MCTD that made me strong, that made me want to prove to myself that I could do it. I don’t want to be the person that I thought I was supposed to be, because it wouldn’t be me. I’m strong because of the pain, sadness, and heartbreak I’ve felt over the last 2 years. And I will be an athlete forever, no matter what.

Being Chronically “Elle”

“Come what come may, time and the hour runs through the roughest day.”

William Shakespeare

My name is Eleanor Ciampi, and I’m 20 years old. In March of 2017, I was in a car accident. I was okay, a few bumps and bruises, a mark from my seatbelt, and a separated shoulder. It was nothing that I couldn’t heal from, or so I thought. Two months later in May, fully healed from the accident, my arm no longer in a sling, a whole new set of symptoms started. My joints hurt so bad I had trouble going up and down stairs, and I was so tired that I felt the intense urge to sleep all day, the kind of tired that you could feel in your bones. My mom made an appointment with my pediatrician for the end of the month. I remember sitting on the exam table, waiting for my doctor, I was hoping, praying that I would be okay, that I would be believed, that my joint pain was nothing more than the wear and tear from all my years as a competitive gymnast that has bothered me for half of my life. My doctor thought that I was just tired, or maybe I could be depressed. Because apparently depression is the only reason that someone could be in physical pain, according to the medical community. She sent me for blood work, just “a precaution” she said. My mom got a call a week later saying I had titers for Lupus, and that I needed to see a rheumatologist as soon as possible. I had to wait for 2 months for my appointment, the longest, scariest, most stressful 2 months of my life. I cried in the office of the rheumatologist, that first appointment. I was so scared, so vulnerable. I don’t know what I would have done without my mom and sister. A lot of blood work, tests, and a colonoscopy later, I was diagnosed with Lupus in October of 2017. I’m one of the lucky ones, as crazy as that sounds. Most people suffer for years before being diagnosed, the average time is 3-5 years. I was diagnosed in less than 6 months. I was so relieved, I was started on a simple immunosuppressant, and I felt so hopeful. In January of 2018, I was diagnosed with CREST Syndrome, a very rare autoimmune disease. I tried to stay positive, but the medicine wasn’t working, and I was losing hope quickly. In May of 2018, I was diagnosed with Mixed Connective Tissue Disease, another very rare autoimmune/connective tissue disease. The doctors kept telling me to give the medicine time, “you have to be patient” they said. It’s hard to be patient when your pain is affecting every single aspect of your life. In July 2018, I ended up in the hospital with the worst flare I have ever had. I’ve never felt more defeated than I did that day sitting in the hospital bed. I spent the entire month of July in a flare, with no answers from any doctor. In September I started a new immunosuppressant, Methotrexate, which is a chemo drug. The first month I felt horrible, the side effects were so bad I couldn’t pick my head up off of the couch. As my body became used to it, so did I. In the worst flares of my life, I wasn’t able to use my hands, the joints were so swollen. I couldn’t write, brush my hair, or get dressed without help. After 6 months of Methotrexate, my hands have never felt or looked better, and I’m truly lucky. It’s not easy to be chronically ill. It’s frustrating, scary, sad, and hard. But I will never let my illnesses win, I will never let them stop me. This is my journey, my messy, imperfect, different-from-everyone-else journey. This is my beautiful life, and I’m living it everyday chronically “elle”.

Purple is the color for Lupus awareness.