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!
Diagnoses: juvenile idiopathic arthritis, uveitis, Ankylosking spondylitis, Sjögren's syndrome and raynauds syndrome
Age at Diagnoses: 11 months old
How are you currently treating your condition/conditions?
As for medications, I take methotrexate and plaquenil. Other ways I try to manage my disease is through getting enough sleep (I know I need at least 8 hours per night), through diet (I am greatly gluten reduced, I don't say gluten free as I will still eat things that have been prepared in kitchens with gluten, touch things with gluten, and have been known to eat the occasional brownie) and largely through being physically active. I recently completed my PhD, of which the topic was regarding physical activity in JIA, so I try to walk the talk. I was a professional dancer, I am a certified Pilates instructor and continue to teach as well as practice myself and probably what I do most of these days is ride my bicycle. Living in NYC, my bike is my primary mode of transportation and on average I probably bike around 20 miles a day just navigating through the city. It's a great way to ensure I get the activity that I need with my busy schedule. I can fully empathize that when you're in pain you may not be terribly excited to be physically active, but once I get going, I almost always feel better.
What are the biggest challenges you have faced since your diagnosis?
I think one of the biggest issues I face has to do not so much with joint pain as the side effects of being so immunosuppressed. I have real challenges staying healthy and commonly have infections, ones that require me to see infectious disease doctors because no one else can seem to manage them. So at times those infections can greatly impact my life more than the joint pain itself. I also had a very difficult time transitioning from pediatric to adult care, which is part of why it is one of my main focuses professionally, to help develop stronger transition programs and services for that specific age group.
What are your favorite tips and tricks for managing everyday tasks?
I am very independent and stubborn, which can be a dangerous combination when you run into a challenge with daily tasks. But over my 30 years with the disease, I have tried to let go of those traits. I ask for help when I need it, or I gloat a little to myself when I'm able to open a jar without help. As a professional ergonomist, I work with clients all day to help make their days a little easier with assistive devices or coaching on proper use of the tools they already have, so I try to carry those concepts into my everyday life as well.
How do you manage to keep facing forward every day?
My friends and family. Specifically my arthritis buddies. I didn't have any "arthritis support" before I was 18, and by not knowing anyone else with the disease I really didn't own it as part of who I was. By engaging with others that experience many of the same daily challenges that I do helps to reassure me I am not alone and empower me to keep blazing my own path. My life may look different than others around me, but I am passionate about what I do and thankful for the experiences that have shaped me.
Do you have a blog you would like to share?
Yes! I am currently on a tandem bicycle trip with my partner, Keegan, riding from NYC to Orlando, FL to raise awareness for juvenile arthritis. The ride ends at the Arthritis Foundation's Juvenile Arthritis Conference which begins July 23rd. We are both blogging our experiences as well as fundraising, so please checking out both sites if that interests you. Blog: jointbikeride.blogspot.com. Donate: ya.kintera.org/jointbikeride.
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