Facing Forward: Stefanie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!  

Name: Stefanie

Location: Massachusetts

Diagnoses: Juvenile Rheumatoid Arthritis - Pauciarticular Onset as well as Uveitis and Glaucoma

Age at Diagnoses: 13 Months Old

How are you currently treating your conditions? 

I am currently on Enbrel (for the second time) and 3 different types of eye drops to control my Uveitis and Glaucoma. However when I was initially diagnosed the only medical option was aspirin. Growing up I tried many different medications (from gold injections to Humira) and everything in between. Fortunately there are so many better treatment options available now! I have have also been trying to eat healthier and I am exploring cutting my dairy intake, but I am not sure if that is helping thus far. I always try to stay as active as possible, whether it's skiing on the weekends, yoga, or just taking the dog out on a walk!

What are the biggest challenges you have faced since your diagnosis?

As a child there were not many treatment options and, as a result, I struggled with walking and was frequently achy and sore. I tried many different childhood activities such as hippotherapy, karate, and adaptive skiing as exercise. I have always struggled with controlling my Uveitis and the accompanying Glaucoma, and unfortunately I believe this will be a constant challenge as it is very difficult to treat. The stress and transition to college was also a huge challenge for me. Throughout this period I struggled with frequent flares, multiple medication changes, and three surgeries. I know there will be other challenging periods in my future, but I am ready for each obstacle!

What are your favorite tips and tricks for managing everyday tasks?

I love baths. Just soaking in any tub, it doesn't matter how big or small it is, helps me physically and mentally. If I had the time to do this every night I would! Also massaging icy hot into sore knees. And wine ;-)

How do you manage to keep facing forward every day?

There is so much in life to be fortunate for. My experiences as a pediatric occupational therapist and volunteer work with adaptive skiing has taught me about how truly fortunate I am. Although sometimes having Arthritis can suck (and it's ok to say that!) I feel lucky to have such an amazing husband, close family, loyal friends, and the cutest puppy ever!

If you could go back to diagnosis day and tell your past self one thing, what would it be?

As a result of being diagnosed so young, Arthritis and my life are one and the same. There is no "pre" versus "post" diagnosis life. I consider this a blessing. I am who I am and Arthritis has not changed that. In fact having Arthritis has led me to choose a career in healthcare, meet amazing people volunteering (including my husband), and live a fulfilling life. So what I would say to my 13 month old self is, "Buckle up, it's going to be one hell of a ride, but it's going to be worth it."

Do you have a blog you would like to share? 

Yes! I have just started a blog called All Grown Up with JRA. It will share advice, resources, and the challenges of being a young adult with JRA. I would love any feedback or comments!

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com