Buckle Me Up

I remember sitting in a counselor’s office telling the counselor I felt like a freak. When he asked why I said it was because I didn’t know anyone else with arthritis. All my friends and workmates were very active and sporty whereas I had trouble just standing up. Because I was so tired and in so much pain I often didn’t feel up to socializing and I didn’t have the energy that most 20 somethings did. I felt like an old woman. When I would explain to my colleagues that I couldn’t do certain things, sometimes things that were a part of my job, I would get looks that said “oh really?” or “whatever - you’re just being lazy.”
The counselor explained to me that he didn’t think I was a freak but that I seemed very isolated. He suggested that I looked at getting in touch with other young people who had arthritis but I had no idea how to do it. It wasn’t until recently, when I got in touch with “Buckle Me Up,” that some of those ‘freak’ feelings began to go away.

What if autoimmune arthritis conditions were universally understood, so you never again would hear, “well you’re too young to have that” or “why don’t you take some aspirin to make the pain go away” or “but you don’t look sick”? Wouldn’t it be nice if people understood that “I’m too tired to go” meant you were experiencing obnoxious, debilitating fatigue that is not necessarily remedied from rest or a good night sleep? What if there were in-depth, age-appropriate exercise programs in place that catered to different levels of disability and fitness preferences? How much better could your health be if there were partnerships with retailers who would offer discounts on healthy foods or fitness facilities that would minimize monthly payments for autoimmune arthritis patients? What if there were a global database of sufferers, family members and caregivers who had the ability to form friendships in order to deal with the daily struggles of disability? Hopefully beginning in 2010 these wishes will start to become a reality.
The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*. Their mission: committed to eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life through education, partnerships and support. It is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers.
They are not in competition with any existing charity. Matter-in-fact, part of the mission is to partner with current organizations to assist with existing autoimmune arthritis awareness efforts. Recently they have joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally. Founder, Tiffany Westrich, is personally working with the Arthritis Foundations “Let’s Talk RA” program to restructure the 2010 strategic planning, in which IAAM will maintain an intricate role. In addition to partnerships, a primary focus is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis”. Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease, developing the first official autoimmune arthritis charity bracelets, and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009). They hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.
If all the autoimmune arthritis sufferers around the world come together, we can make this a reality. But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit. So, today, many autoimmune arthritis blogs are joining forces to reach out to our community of sufferers for help. Just like you may see while checking out at grocery stores and other retail establishments, the IAAM is asking for $1 donations to assist with these start up costs. Every dollar earned will bring us all one step closer to being understood.

To view a complete list of start up costs and to send your $1 donation, please visit www.BuckleMeUpMovement.com/donate.
“Be the change you wish to see in the world.” -Ghandi

*Currently, we have found the following conditions officially classified as Autoimmune Arthritis.
o Rheumatoid Arthritis
o Juvenile Arthritis
o Psoriatic Arthritis
o Reactive Arthritis
o Ankylosing Spondylitis
o Scleroderma
o Systemic Lupus Erythematosis

Molly Stick

A couple of months ago I had a really bad flare up of my arthritis. Since then I’ve been walking with a stick. I decided that instead of resenting my stick I would give it a name and treat it as a friend rather than an enemy. Also, if you’ve read the book ‘Howl’s Moving Castle’ you’ll know that in it the main character Sophie talks her walking stick to life. Now I’m not saying that will happen to mine but if I don’t at least give it a name it definitely won’t.

I started off with my Grandmother’s old walking stick which I named Glinda after the good witch from ‘The Wizard of Oz.’ Unfortunately, Glinda wasn’t quite right for me. I had a couple of falls when walking with her and the physio from the hospital suggested I’d be better with a crutch. The hospital lent me a temporary crutch until I could get a permanent one. I named him Kody after the Matchbox 20 song. You see, just before my flare up I’d been doing a facebook quiz where you had to answer questions with the titles of songs from one artist. I think I kind of jinxed myself, as one of the questions asked my favourite form of transportation. Matchbox 20 have no song titles with any form of transportation in them so I chose the title that seemed closest – ‘Crutch’ – not knowing that in a few weeks I would be unable to walk without one.

When my permanent crutch arrived I was a little out of inspiration. There’s only so many times you can name inanimate objects without running out of names. I left it to my parents. My Mum chose the name “Molly” and my Dad added the sir name “Stick” later. From then on she has been known as Molly Stick (see picture).

I know I’m supposed to be writing about exercising and eating healthy but I thought I’d tell you about Molly Stick first to put things into context. I often forget to explain to people that I have autoimmune disorders and confuse them by making references to my hands not working or giving myself injections. I think now people can see Molly Stick they understand a little more but I have got some strange looks in the past.

I hope the holiday season has been treating you well and I’ll be writing more soon.

Little Miss Autoimmune