Thursday, March 15, 2012

A brief relection...

March 13, 2012

As I walk through the terminal heading for my flight home, Bob Marley’s “Three Little Birds” runs through my head and I realize that I’m smiling. It seems like it was just yesterday that I wrote about the mound of clothes piled on my bed waiting to make it into my suitcase. Time goes so fast. Another year, another Arthritis Introspective Gathering has come and gone and I am still flying high; having gotten my arthritis family fix for another 12 months. Some people get a monthly biologic infusion to manage their disease. I rely on an annual infusion of laughter, hugs (I got my seven touches and then some) and sharing…and that will sustain me through the next year; through countless hours of battling with insurance agencies, through pain-filled sleepless nights and frustratingly stiff days, through the times that the curious stares are a little too much to bear and the times when the reflection in the mirror is more critical than the curious stares. It will sustain because I can look back and smile, smile, so unconsciously that I don’t realize other people stop to look and wonder why.
I will eventually write more, but for gratitude is all I can bring myself to share.

Thursday, March 8, 2012

D-Ray & the Glass House: Gathering with people who "Get It." The 2012 Arthritis Introspective Gathering!!

D-Ray & the Glass House: Gathering with people who "Get It." The 2012 Arthritis Introspective Gathering!!

Gathering with people who "Get It." The 2012 Arthritis Introspective Gathering!!

This is the post that will be featured on, a great site for autoimmune disease information and support!!

It’s a cloudy, mild March day here in Milwaukee and a pile of clothes towers precariously on the edge of my bed—I am packing for the fifth annual National Arthritis Introspective Gathering, a weekend of education, empowerment and understanding for those 20-50 (ish) living with arthritis and its related autoimmune diseases. For me, it’s a family reunion.

I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) in 1983. I was seven and still remember being baffled. Arthritis is an old person’s disease. We quickly learned that Rheumatoid Arthritis wasn’t an old person’s disease as “Arthur” began to insert himself in every aspect of our lives. The same year, the American Juvenile Arthritis Organization (AJAO), was formed and in 1984, we attended the first AJAO conference, a weekend for families of JRA to gather and gain information and understanding. It was a time for my parents to find support and for me, with my swollen knees, sore wrists and fingers and swollen “moon face,” to feel like a “normal” kid.  We attended the conference for the next four years, as Arthur continued to attack my body and we struggled to learn to adapt to the changes. 

Then, came the teen years.  The last thing I wanted was to be reminded of Arthur. Not that he ever went away. (“Remission” was about as realistic as Sasquatch.) Though I was the only kid in my high school with a wheelchair, my hands were crooked and there were days I could barely walk to my desk, I wanted to be “normal.” Denial ain’t just a river. And for the next15 years, I lived life the best, as “normal,” as I could. I could tell loved ones when my body was hurting, but it was difficult to explain how my heart would hurt; how feeling “different” and “crooked” or “deformed” had left a hole and no matter how many times they tried to comfort or disagree, they just couldn’t “Get It.” I felt alone.  

In 1999, Arthur again, forever changed my life, this time, for the better.  That year, the Arthritis Foundation held its first (and only) conference for young adults with arthritis. Many of the attendees were adults with JA, yet there were also many diagnosed in their 20s, just as they were beginning life as “grown-ups.” That weekend, I was reunited with childhood AJAO friends and made many new ones. There were people who looked, walked and felt like me. I was no longer alone.

The man with the dream, Kevin Purcell and me!! 
That weekend, a family was born. It became clear that whether we were diagnosed at six or 26, we understood each other’s pain, fear and frustrations and through that understanding, were able to inspire and empower each other. Through the years that followed, many of us continued to meet annually, adding “newbies,” people who had been like me, without an arthritis community. We dreamed about an organization that was specifically for us—people living with arthritis in the prime of life; an organization that not only held an annual conference, but also provided guidance on how to form local support networks, so that its members could enjoy a feeling of community at home as well.

In 2007, the dream became a reality and through the tireless dedication of my dear friend, Kevin Purcell, Arthritis Introspective (AI) was founded and the first National Arthritis Introspective Gathering was held. The weekend included educational sessions on relationships, parenting, medications, self-esteem and coping, etc. Yet, the most valuable part of the conference was the support network that was created and the friendships that have flourished since.

This weekend, March 9-12th, the Gathering celebrates its fifth anniversary in Sugar Land, Texas and I am anxiously counting down the hours until I board the plane. Not only am I excited about the variety of sessions planned for the weekend, from new surgical techniques to meditation to parenting and adoption; I cannot wait to see my family—both old and new, as we have MANY first-time attendees registered for the event.

There will be plenty of “Sweet Memories” created this weekend and I look forward to sharing them with you all in the near future, but for now, I must get back to packing, with hopes I’ll be able to close (and lift) my suitcase once all is said and done!