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