I'm Walking to End Lupus because I have Lupus! Join Me in the 5K walk or donate to help me raise my $1,000 goal!
The summer after 6th grade I experienced my first lupus symptoms being sick with a fever resulting in a hospital stay. I was officially diagnosed in October of freshmen year when I got run down and sick with a fever. One early morning, I passed out and went by ambulance to CCMC. Due to the triggers of stress and fatigue, instead of my immune system producing antibodies to fight off this virus; my immune system created autoantibodies that caused inflammation that could not be controlled by the steroids I was given in the hospital. This began a rollercoaster of medical interventions and hospitalizations for the next three months. All the while, I did my best to honor my commitment and role in the Marching Band Performance and completing the first quarter with honors. My doctor’s presumption that another dose of steroids in the hospital would combat this flare proved to be wrong. Instead of getting better, I was getting sicker by the week. I never went back to school after November 1st, and by early December my Central Nervous System was affected. This caused seizures and a blood clot in my brain, resulting in me being in the ICU, and then in the hospital for most of December. While the inflammation in my brain subsided, I was able to regain my motor and cognitive functions back.
The new year was quite different for me than my peers. In January, I began receiving homebound instruction, and once a month I would spend a day at CCMC receiving a dose of the Chemotherapy drug called Cytoxan. Also every day for 6 months, I would have a blood thinner shot twice a day, called Lovenox, to treat the blood clot in my brain. That winter I found a new hobby in the form of baking, and each month I would bring baked goods for the hospital staff when I went in for treatment. I didn’t have much of a connection to SHS during this time, but two of my teachers came to tutor me at my house. After April break, with a very puffy face and severely thinning hair, I was well enough to return to school for three classes and complete all my coursework (with honors). I was able to complete all my schoolwork for Freshman year and finish with my class on the last day of school. Over the summer I volunteered most mornings at the Y for the Race4Chase Triathlon training program and had restful afternoon and evenings, as I adjusted to a new normal.
Sophomore year was a pretty good year! Through medications and lifestyle habits of making sure to get plenty of sleep and staying stress-free, I was able to manage full weeks of school and homework. I joined the Key Club, which gave me an outlet to participate in a balanced blend of social and service based interactions with my peers and the community. A highlight of this year was the process of becoming a recipient of a dream wish through the Make-a-Wish Foundation. In June, my family and I traveled to Ohio on an excursion to meet my Youtube sensation Roman Atwood, along with 9 other kids battling life-threatening illnesses. It was during my time in Ohio that my hip started to hurt. Besides playing golf, there wasn’t an activity that would attribute to hip discomfort.
As it did with my brain, Lupus can attack any organ system. In August I found out that I developed Avascular Necrosis. The blood stopped flowing to my hips and my hip bones were deteriorating. In September, I underwent a somewhat exploratory surgery on my right hip called core decompression to see if bone growth could be promoted. This resulted in me being wheelchair bound at school for almost the entire school year. I was able to keep up with the Key Club, but my main afterschool activity was physical and water therapy to try to help my abnormal gait caused by my severe hip pain. By April my family concluded that a total hip replacement was the necessary course of action. In hindsight, the initial surgery caused me to be worse off for my entire junior year. I took my last exam one day early and underwent a total right hip replacement the last day of school.
I spent the first half of summer recovering, the second half in physical therapy and I proudly drove myself and walked into school for senior year. My right hip felt great, but walking the expansive distance around school all day caused the same pain in my left hip. I didn’t want to suffer as I did with my right hip, so when my mom asked me how the first day of senior year was I said, “Good, but I want to get my left hip replaced on election day so that I can be recovered for the new year.” This is exactly what I did. My new hips are amazing! I go to weekly PT and started playing golf again. The last WALK TO END LUPUS NOW, my dad pushed me in a wheelchair. On June 2nd I will be walking a 5K!
Please help me reach my goal of raising $1,000!
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!
For those of you who do not know, I committed to Southern Connecticut State University! My Major is Recreation and Leisure Studies with a Concentration: Child Life Specialist!