#LiveYes and Dream Big

By: Samantha Paul

Senior year did not turn out the way I had expected. In the blink of an eye, school was online, prom was canceled and the graduation I had been waiting years for became a drive-through. Just like living with juvenile arthritis (JA), the rise of COVID-19 has presented unique challenges.

Arthritis has tried to stop me from doing what I love, and now COVID has tried to throw a wrench in my plans as well. I Live Yes by not letting challenges stop me. They are unique challenges that not many people my age face, but they allow me a different perspective and force me to go in a different direction.

I was diagnosed with juvenile idiopathic arthritis at the age of 14, but I had been living with symptoms since I was 11. I had pain in my foot that over a handful of doctors passed off as plantar fasciitis. It wasn’t until the pain in my jaw started almost a year later that doctors began to listen.

When my treatment started at the beginning of my sophomore year of high school, I had to leave school because I was so sick, and my pain wasn’t managed. Once it started getting under control, I went back to school for half days. The effects of living with unmanageable chronic pain for years can be detrimental. I began having pain in parts of my body where I didn’t have arthritis and ended up being diagnosed with a chronic pain condition: amplified musculoskeletal pain syndrome (AMPS).

I was lucky enough to go to an in-hospital program designed to treat AMPS, and after three weeks I came out a whole new person. I was pushed past my breaking point daily and learned that I am stronger than I could have ever imagined, not only physically but mentally. I had never felt better and went home with a whole new perspective on life.

I believe I was 15 or 16 years old once I finally had the perfect treatment regimen for me — and have been almost pain-free ever since. I graduated high school in May and committed to a college in New York City to pursue an acting major and BFA, something I never thought I would be able to do after my diagnosis.

Every single day, I am doing things that, only a few years ago, I never thought I’d be able to do on my own again, starting with getting out of bed in the morning. Although I have never felt better, years of untreated arthritis has its consequences. Last summer, my doctor noticed that my jaw joints had deteriorated to a point where I would need reconstructive surgery. I had that surgery this past June.

If there’s anything I’ve learned from arthritis, it’s that we can do hard things — not just me but all of us. We are truly all JA warriors. Every time you inject your medication, sit still for a long MRI or even get through a scary doctor’s appointment, you’re getting stronger. I can guarantee that I wouldn’t be the person I am today without arthritis. I wouldn’t have the compassion, empathy and drive I do now.

My dream was to move to New York City and be an actor. In the fall, I’ll be doing just that. The reason I can do it is because I refuse to let my disease stop me. I’d love to hear your story and experiences. You can share them on social media with #WeLiveYes. To the class of 2020, congratulations! I can’t wait to see the wonderful places you’ll go.

For all the JA teens who have started their first year of college, please check out the Connect on Campus Care Pack, filled with helpful tools and materials to empower you to live your best life while in college.

 

 

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