Hello Everyone,

For those who don't know, in 2013 I was diagnosed with Lupus after a period of high fevers, joint/muscle pain, and overall fatigue. My first flare was controlled by taking medication and a short hospital stay. In 2015, my freshman year of high school, I began performing as a color guard member of the Southington High School Marching Band. The long hours and the level of exercise were too much for my body to handle week after week which caused me to get 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, my immune system created autoantibodies that caused inflammation all around my body. I wasn't responding to the steroids I had been given and this began a rollercoaster of medical interventions and hospitalizations for the next three months.

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. Lupus caused 2 seizures and a blood clot in my brain to develop, resulting in me being in the ICU, and then in the hospital for most of December. While the inflammation in my brain subsided, I regained my motor and cognitive functions.

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. After April break, with a very puffy face and severely thinning hair, I was well enough to return to school for three classes a day. I completed all my schoolwork for the year and finished the last day of school with the rest of the freshman class.

Moving forward … 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. A highlight of this year was 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 Youtuber Roman Atwood, along with 9 other kids battling life-threatening illnesses. It was during my time in Ohio that I started to notice some hip discomfort. 

As it did with my brain, Lupus can attack any organ system and 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 began PT and aqua-therapy to help correct my abnormal gait caused by my hip bone deteriorating and severe hip pain. By April my family concluded that a total hip replacement was the necessary course of action. In hindsight, the exploratory 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 on the last day of school.

I spent the first half of summer recovering, the second half in physical therapy and then I proudly drove myself to school and walked inside to my senior year. My right hip felt great, but I noticed while walking up and down the stairs all day that I was starting to have some left hip pain. I didn’t want to suffer as I did with my right hip, so when returning home on the first day of school I had already decided what I wanted to do. I would get my left hip replaced on election day to recover by Christmas (my favorite holiday). And this is exactly what I did!

The years of 2019 graduating high school, to now in 2024 post-grad and working full-time in a career I love, were somewhat smooth. No major lupus flares or long hospital stays. However, when entering college I noticed my jaw would hurt from time to time, after excessive taking, chewing, or laughing. Soon after in 2019, I got diagnosed with TMJ OA (Temporal Mandibular Joint Osteoarthritis) which is essentially the deterioration of my jaw bones. After countless doctors telling me they couldn’t treat my jaw pain and telling me it was just something I would have to learn to live with and manage. My mom persevered and found a TMJ specialist in Norwalk, the only doctor in CT willing to do TMJ injections. In 2023, I finally found relief from receiving steroid injections into various areas of my jaw/face. Currently, in 2024 I have received 6 rounds of steroid injections and am feeling so much better! I know I will continue to have ups and downs throughout my life living with Lupus. But with new research studies and advancements in medicine, I will hopefully be able to live my life as pain-free as possible.

Thank you for your support,

Lily