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2011 Honorees - Faces of Arthritis

When I was fourteen, summer before my sophomore year in high school, I was diagnosed with JRA. I can remember the day so clearly. I had been synchronized swimmer since age 9. I loved doing synchronized swimming and went on to compete at Jr. Olympics, National Age Groups, US Opens, and Junior Nationals. We were completely dedicated to the sport swimming and loved swimming with each other. One Saturday during the summer I was at practice and had the most excruciating pain in my lower back. I was lifted out of the pool and went straight to the doctors. They tested me for leukemia due to the low back pain symptom. Luckily, it came back negative but the doctor did not know what was wrong. I ended up at Seattle Children’s where I was diagnosed with JRA. I stayed at Children’s until Dr. David Sherry moved and was referred to Seattle Rheumatology Associates.

I attended Holy Names Academy in Seattle for high school. My mom had this rule that if I was going to hurt at home, I might as well hurt at school. I was not treated differently because of my arthritis. Having my parents’ unconditional love and support taught me to follow my dreams despite my arthritis. Having RA does not define me; it is a part of me. Throughout most of high school, my pain was mainly present in my low back so I could still participate on swim team. Senior year I was elected Swim Team Captain and Most Inspirational Swimmer. I graduated with Highest Honors and was accepted to the University of Portland.

While at UP my RA started to really progress into every single joint making it hard to be a “normal” college student. Not all of my friends knew about my RA… I didn’t want to be judge but after a few trips to the emergency room people started asking and I explained. It was hard to make it to all my classes all the time. There were days where my morning stiffness or pain was just too much for me to handle. I was granted extended time for test taking because sitting down and writing for an hour and half was too much for my body. I learned to adapt and do what was necessary to graduate. My younger sister joined me at UP and having her there was amazing. Having family to love and support you makes life a bit easier. It was nice that we could lean on each other. It took me an extra semester to graduate but I DID graduate with a Bachelor of Arts in Psychology. By this time however, I did not remember what it was like to be pain free. I honestly, do not remember what it feels like to wake up in the morning and not hurt. It changes your life but you have to make the decision on what direction you are going to take.

I chose to follow my dream. I applied to the Notter School of Pastry Arts in Orlando, Florida, one of the best pastry schools in the country. I learned from some of the best chefs and World Champion Chocolatier, Ewald Notter. I left my family, friends, and doctors to become a pastry chef. The decision to go was easy but it was the most physically demanding 24 weeks of my life. I woke up reminding myself every morning that if I was going to hurt at home, I might as well hurt at school and learn. I pushed myself every day. I had never been in so much pain before in my life but this was my dream and I was determined to follow it. My chefs worked with me if I missed a class so I would stay on top of things I missed. I met some of the most supportive friends while I was at school. They helped me in any way they could; taking me to doctor appointments to making me smile at Disney World. While I was in school, I developed a sinus infection, which led to surgery because my suppressed immune system could not fight the infection. I had surgery on Friday and was back in school Monday. We were just starting our chocolate course and I did not want to miss anything. I fell in LOVE with making chocolate. I absolutely love it. After 24 weeks of the hardest but most fun work I graduated. I achieved my goal of going to pastry school.

Once I returned home, my body finally gave in and went into the worse flare of my life [I didn’t think it could be worse than when I was at school but I was wrong]. Since I was diagnosed, I have tried every medicine out there. I work with the BEST nurse practitioner who supports me 100%. I have tried NSAIDS, DMARDS, and Biologics and received no relief. I could not work because my body could not handle it. At that point I honestly did not think the word remission would ever be mentioned in my future. A year and a half later the word remission was brought up and I started crying. I just started a new drug and my shoulder stopped hurting completely. This was not normal for me at all. I started sleeping through the night and was able to start working. My early response means that there is a good chance I could go into full remission. I cannot even imagine what it would be like. At first I did not want to get my hopes up because I had tried so many drugs before but once the word remission is mentioned there is no way you can’t help but hope. There is a chance in my future to go into full remission. I keep fighting every single day. I push through pain to follow my dreams.

Having RA can make it very hard for someone in the pastry industry to work at a restaurant, hotel, bakery, etc. With the support of my parents, boyfriend, family and friends, I decided to start my own chocolate company, naKed chocolat. I am a chocolatier. I make beautiful chocolate with bursting flavor. I do what I LOVE and LOVE what I do. With having my own company, I can choose when to work, how long to work, when to take a break, etc. naKed chocolat was the perfect answer and I have never been so happy. naked chocolat . pure . simple . delicious.

I am a 26 year old young woman. I am entrepreneur. I am a chocolatier. I am in love. I am happy. I work hard to follow my dreams and my dreams are coming true. I have unconditional love and support from my family, boyfriend, and friends. And yes, I have RA.

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