Monday, July 20, 2015

The Snarky Voice

The snarky voice wasn’t interested in keeping an open mind or giving anyone the benefit of the doubt...The snarky voice is a defense mechanism I’ve developed based on my past experiences.

Read more at RheumatoidArthritis.net.

Facing Forward: Jen

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, Sj√∂gren'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

New York Times: Specialty Pharmacies Proliferate, Along With Questions

Last week, I was quoted in a New York Times article about specialty pharmacies. I think the article is a very insightful investigation of a very important topic. Many patients with chronic illnesses are captive audiences, forced by our insurance companies to use whatever specialty pharmacy they may choose. If these pharmacies don't live up to our expectations, we have no choice but to keep dealing with them if we want the medications that make our lives possible. This can place a huge burden on patients who are already living with chronic illnesses, so I am very glad to see this issue getting some real coverage.

Monday, July 13, 2015

The Spoon Project

Most of you with RA - and other autoimmune conditions - are probably familiar with The Spoon Theory (and if you aren't already you should check it out!) Basically, the spoon theory is a model used by people with chronic illnesses to describe our every day living experiences - and how much energy it takes us to do little tasks that most people take for granted every day.  

Recently Kirsten (who writes the amazing blog Not Standing Still's Disease) had the brilliant idea to start visually documenting her personal experience with the spoon theory - and how many "spoons" it takes her to get through everyday activities. She has shared some very creative images that give at least a small slice of insight into what it is like to need to be aware of your energy resources all day, every day. So I really want to encourage you to check out The Spoon Project!

In fact, Kirsten's project inspired me to take some photos of my own to visually demonstrate where all my spoons go every day! I may not always have enough spoons, but I certainly give as many as I have - every single day.