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 now...my 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 www.creakyjoints.com, 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!  

Friday, January 20, 2012

A New Year


It’s 2012. Wow. Where did the time go? It’s been quite some time since I posted. The number one rule of successful blogging is, “Do it regularly”. Well, actually, it’s “Write Well.” Then make sure you do it regularly. Because I worry so much about the first rule of writing well, I fail to follow the second rule. That being said, it’s a new year and like most people, I have set some goals for myself, live more mindfully, lose weight and write more often. The question is, what to write?

I have been living by the Serenity Prayer a lot lately.  God grant me the serenity to accept the things I cannot change; 
courage to change the things I can, and wisdom to know the difference.

I have always been very self-conscious of my hands. I can’t even remember when they began to change, but when I was diagnosed with JRA at 8, they were straight. By the time I was 12, my wrists had drifted (ulnar deviation, they call it) and were fixed sideways at a 90-degree angle. I know this from pictures. I don’t remember it happening. But I remember the boys in eighth grade, sitting at the end of the lunch table, mocking my hands and me as I raised the fork to my mouth. I stopped eating lunch for a few weeks. I wasn’t allowed to change tables.

By high school, the fingers had joined in on the fun, with the tendons growing weaker, the joints began to slip, and my hands began to look gnarled and old. Again, I know this from pictures more than I remember it happening—which is not to say I didn’t know they looked different. I just didn’t notice how significant the progression was.

The problem is, unlike scars, unlike pain, you can’t hide your hands. Especially if you are an animated talker, as I am. I’ve tried, especially on first dates or in job interviews. In fact, in my 20s, I began to make plans to “have them fixed” one day. And, like so many other people, I lived with the “If/Then” fantasy. If my hands were fixed, I would be more attractive, people wouldn’t stare, I wouldn’t be so self-conscious. It’s funny how we tie our hopes to that far off “If/Then,” hanging in limbo; waiting for the “Then” to come.

Well, to quote John Lennon, “Life is what happens when you’re busy making other plans.” So while I planned on having the hands “fixed” one day, I went on with life. Until a month ago. Due to circulation issues, I was sent to my hand surgeon. As we discussed treatments for the latest addition to my laundry list of “secondary conditions,” I asked about my fingers.

“So, since you are already going to be in there,” I asked (“in there” being opening up my hand to work on some arteries), “could you just replace or reset my index finger since I haven’t been able to straighten it since the tendon disintegrated back in ’99.”

At that point he informed me that he would never electively work on my fingers. “We would be asking for a world of trouble,” he said. Apparently, my inability to heal (thank you, steroids) and my compromised circulation would make an attempt at replacement/realignment a VERY bad idea.

Suddenly, my “If/Then” fantasy was shattered. There would never be a day that I would have long, straight, piano player fingers, hands that would make me more attractive, hands that didn’t evoke curios stares and make me self-conscious. Yet, I go on with life, again often forgetting my hands and their unusual shape.

And that’s okay. Even when someone reminds me, as they sometimes do. This week I went to the clinic for a treatment and the infusion nurse was one whom I have known for at least a decade. We were talking about how long it’s been since I’ve been on a biologic (a story for another day), at least seven years now. And she casually remarked, “Well yes, I can see a lot more deformity in your hands.” “Really?” I thought. For just a moment I was taken back, wounded by the comment, unaware that my hands looked any different than they had a few years ago. It’s a little like gaining weight. You don’t realize it happens until one day you catch a view in a store window and wonder whose big ass is wearing your jeans.

It was almost a split-second decision, but it was a conscious one. There was my Ego, feeling wounded, wanting to jump in and dwell on how ugly and deformed my hands were becoming. Then, there was something deeper that just said, “Huh, Okay. They’ve gotten worse. They still work (for the most part) and there’s nothing you can do to change them. This is you.” It was a very surreal moment and I chuckled to myself, thinking about all the turmoil I had just avoided by choosing how I took her innocent comment.

I realized, at that moment, that I have accepted that I cannot change the physical appearance of my hands, but I can change the way I think about them…and have found the wisdom to know the difference.  

At least for today…

Saturday, August 20, 2011

Sometimes ya just wanna wallow...a poem

Nobody likes change.
The baby fights when momma tries to change the dirty diaper.
Granted, it’s not a lot of fun, sitting in your own shit.
But sometimes, it becomes warm and familiar
and to be stripped naked can be just as unpleasant and we wiggle and squirm and try to crawl away from the cleansing.

Sometimes it’s more comfortable to wallow in the mess.

Wednesday, August 10, 2011

Blogs | Arthritis Today Blog | Arthritis Blog | Arthritis Today Magazine

This is the blog of a friend who was diagnosed with Rheumatoid Arthritis at 19. When people ask who inspires me, I always say, Annette. This is what she's up against now. This is what Arthur is capable of. And this is what courage is.

Blogs Arthritis Today Blog Arthritis Blog Arthritis Today Magazine

Saturday, August 6, 2011

Anniversaries

Anniversaries
They are a strange thing. Generally they are a time of remembering firsts or commemorating major (happy) life events. However, I find that more often than not, Hallmark doesn’t carry cards for the anniversaries remembered the most.

Yesterday was a double anniversary for me. It marked one year since I fell and broke my right femur. Not just a little crack, this was the mother of breaks (I’m taking a careful bow), an eight-inch displacement that came very close to my femoral artery (anyone who watches hospital dramas knows what THAT means) and making me an official member of the Bad Ass Club. However, time moves faster than we think, I healed fairly well and one year later, I found myself on the track for another anniversary, our eighth annual American Cancer Society Relay For Life, cheering on my mother, tearful and proud, as she carried the Survivor banner for the Opening Lap of the event.


In 2003, my Mom was in her fourth month of chemotherapy to treat (and beat) breast cancer. Coincidentally (Divine intervention, perhaps), I had been hired at the American Cancer Society (ACS) a week after her diagnosis. I supported the event coordinators of the Relay For Life, the ACS' signature fundraising event. Having never been to a Relay before, I didn't know what to expect, but I knew that they had a Survivor celebration. Though our futures were uncertain and she was still technically “in treatment,” I wanted Mom to be part of that celebration.

While the months of her treatment are somewhat a blur to me now, I remember that night clearly. Having lost her hair, her head was wrapped in a bandana and she wore a maroon t-shirt emblazond with scrolling white letters that read, Surviving in Style. So very appropriate if you know my mother. Though it was a sticky, humid August evening and Mom was fatigued from the treatment, she stayed until the sun went down and the track was filled with Luminarias, candles burning bright with the names of those living with and lost to cancer. As silence fell and the names were read, I held my Mom’s hand while we slowly walked around the track, saying a silent prayer for each name on the bag and taking a moment to stop and stare at those with her own name on them. I remember holding onto her and thinking, “What if this is the last time we do this?” The moon was high and bright and the sky clear and I made a wish…Star Light, Star Bright…

Last night, another sticky, humid August evening, we returned to the track and were greeted by hugs from other Survivors and Caregivers who have been making the laps with us since that first Relay. Though she has received a purple Survivor shirt each year since 2003, Mom showed up in her maroon Surviving in Style t-shirt. I stood in the stands and watched as she took an end of the Survivor banner and again, lead the procession celebrating survival and celebrating Life.

As the sun went down and the stars appeared, the candles were lit once again. This time, joined by my sister, the three of us walked the track in silence, listening to the names from the speakers above. We found ourselves stopping more often than we did that first year, stopping to say a silent prayer for each loved one we had placed on that track and each candle that burns in their honor and memory.

As the ache in my femur reminded me that one year before, I was lying in a hospital bed, the stars above reminded me that I had been on this track before and as I held onto my Mom’s arm, I said a quiet “Thank You” and made another wish.

In Honor of:

Pennie Cialdini
Michael Schrot
Barbara Schrot
Rosemary Muccio
Donna Fox-Kliedel
Pami Keenan
Diana Rademacher
Galen Dockter
Bobo Constantineau
Char Jansen

In Loving Memory of:

Hector Cortes
Gladys Akins
Harry Clark
Linda Lawton
and so many others…