D-Ray & the Glass House: A brief relection...

D-Ray & the Glass House: A brief relection...

The Latest Blog to go the CreakyJoints.org...

A few months ago, was packing my bags for the fifth annual national Arthritis Introspective Gathering in Sugarland, Texas. Today I, again, find myself packing my bags and getting ready for another adventure; this time, it’s a trip to Arizona, to find my new home. I have lived in Milwaukee, WI all my life. As you may have read in my previous post, I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at age 8. As so many of us who live with this disease, I have become a master at adapting. When I was no longer able to reach my feet, I bought a sock aid and slip on shoes. When I began to have problems getting in and out of the shower, I bought a bath chair. I have an arsenal of adaptive devices that help me stay independent. Yet, I still take comfort in knowing that help, that family, is only a phone call away. If I flare and need someone to pick up my medications or take out my garbage, I can call a loved one. If I have surgery, I have my Mom to help me recover. This has always made me feel safe. It has always been comfortable. After attending the 2012 AI Gathering, I decided that there are some things more important that being comfortable.

Since my first visit to Arizona in 1999, I have dreamed about moving out West. Most of my Arthritis Introspective friends are transplants, having escaped apocalyptic snowstorms, icy sidewalks and sticky summers for the “dry heat” of the desert. I have always said “someday.” Not really knowing when that would be. I had a job. I had family and friends. I had school. I had arthritis. The “what ifs” were always somewhere in the back of my mind. What if I flare? What if I need another operation? What if I can’t find a good doctor? What if…

Four years ago, the disease had progressed and my right hip needed to be replaced. After five years as a fundraising and event coordinator for the American Cancer Society, I could no longer keep up with the physical demands of the job. I went on long-term disability and it was one of the most difficult decisions I’ve ever made. We are a society that measures people by their occupation. Without that title, I began to wonder what I would do with the rest of my life.

Luckily, I had Arthritis Introspective. I worked with Kevin Purcell to get the organization off the ground, working by trial and error to develop a vision and mission for the organization and striving to connect with others living with the disease in the prime of life. I had a support system. I had others who understood what it was like to no longer have to set the alarm in the morning. And I dreamed of Arizona.

We all have times in our lives when something whispers in our ear and we know that it’s time to act. This happened to me at this year’s Gathering. The weekend was full of information and empowerment, with sessions both emotional and educational and always entertaining. From communication and intimacy to advocacy and medical advancements, the programs offered something for each of us. Yet as always, my biggest highlight was meeting so many new, amazing people. For the first time, half of those who attended were new to the event and several were newly diagnosed. Many of were frightened, frustrated and unsure how they would make it through. I couldn’t tell them when it would get better or divulge some great wisdom that would turn the sky to rainbows and butterflies. But what I could do is share my story and assure them that though life with arthritis is challenging, we all eventually find our own way to cope. And by finding a community of shared understanding we also, find hope.  

Throughout the years there have been people who have called me an “inspiration.” I always felt rather uncomfortable with that title, as I have simply lived my life as best as I can, sometimes I do a better job than others and I have had my share of dark times. Yet what I’ve come to realize is that perhaps part of my life’s purpose, part of the answer to the “why” all of us ask at some point or another, is that I am here to show others that they don’t just have to survive life with arthritis, but they can find new ways to thrive.

With that in mind, I realized that with the national AI headquarters located in Arizona, its time for me to follow my passion to find my purpose (in the words of TD Jakes). I feel that I can do the most good among people working for the same mission. So in two days Phase One of “Operation Relocation” begins as I spend a week getting used to the Arizona heat and shopping for an apartment that is accessible and has the accommodations I need to remain safe and independent.  Of course I have fears; what if I get sick, what if I’m lonely, what if I hate the desert, what if I miss my Mom? But the “What If” I fear most is the “What If I Never Try?”

Besides, Mom can always come to visit.  

A Letter to My Doctor

So May is national Arthritis Awareness month and arthritis has been all over my social media networks. I guess I am happy that with the advent of social media, it has become much easier to educate people on many different subjects, including arthritis. However, I have not personally written about awareness month simply because every day is arthritis awareness day! Life with a chronic illness simply means that some days are better than others and some days are much worse, but with arthritis, you are always somewhat aware.

While the disease is getting a great deal of publicity this month, I haven't seen much about the doctors, nurses and researchers that become part of their patients lives, dedicating more time and energy than we give them credit for; finding ways for us to manage our disease and live the most productive lives possible. I have heard many stories of doctors who didn't listen or didn't care or understand, it's always easier to give voice to the negative. However, throughout my life with Arthur, I have been blessed to have two rheumatologists who took care of me like I was their child; and in some ways I probably was.

This week, my rheumatologist of 20 years retired. I arrived in her office as a teenager, stubborn, filled with denial, worried more about the upcoming school dance than I was about medications, therapy or my future and the fact that I would spend the next 20 years with that tiny wisp of woman with brassy curls and thick glasses. Always matter-of-fact and determined, Dr. Hanna took care of me (often battling with my stubborn ways) and as the years went on, I never pictured a time without her. Though I said "Thank you" often, I don't think it was ever enough, so recently I put it into words.

My last visit with Dr. Hanna was odd. Rather anti-climatic, I don't think either of us knew what to say as it didn't feel like the last time. So to honor Dr. Miriam Hanna, I'd like to share my gratitude and though she's a private person, I hope she won't mind.

Remember to always be grateful for someone who helps to shape your life.

Dear Doctor,                                                                                                              

I have thought about this day for years, knowing that one day you would retire, closing one chapter and beginning a new one for us both. I only hoped it wouldn’t be so soon.

So how do you thank someone who has virtually had your life in her hands for 20 years? Thank you just doesn’t begin.

I cannot remember a time that you weren’t in my life or on my speed dial. Whether you realize it or not, you have become a part of my family, falling into our common conversation as easily and often as some relatives. “What’s Hanna say?” has been a phrase mentioned over our dinner table more times than I can count. My parents trusted you to take on my case when I was still a child and you have stayed with me as I have learned how to be an adult and make a life, mostly successfully, with this rotten disease. And I KNOW I haven’t been an easy patient. Much like a parent, I know you have been exasperated with me more often than I realized and it is only in hindsight that I can see how much work I was/am. But you stuck with me. 

I’m sure when Dr. Wortman referred me 20-years-ago, you had no idea what you were getting yourself into. Lord knows I had no idea. At 16, I still held the secret fantasy that because I had “juvenile” arthritis, it would just, “Poof,” disappear when I became an adult. We all need something to hope for. I guess we learned together.

Whether you know it or not, I have always considered myself very lucky to have you as my doctor. I have many friends who have not been so fortunate and I have to admit that it scares me to go out and face the fact that not all rheumatologists are willing to invest in their patients as you have in me.

Life with RA is painful—physically and psychologically—some days/weeks/months, it’s been hard not to give up.  But it has always gotten “better”—or you just learn a new normal. We ride the waves and just wait for the storm to pass. Because you worked with me, advocated for me and were honest, always, with me, I have been able to earn my degree, to build a career and to become a voice for others with the disease. I’m still waiting for Prince Charming, but that’s another story. The point is, I am living my life because of you.

  

Again, I feel at a loss as to how to express my gratitude. I hope that this letter gives you at least a little idea of the good you have done and the impact you have made on my life and those who love me. Your care has affected the lives of people you have never met because of what it has enabled me to do. So please know, all of those battles with insurance companies, hospital bureaucracies and (sometimes) obstinate patients were not for nothing.   

I wish you all the best in this next chapter of your life. I will continue to be a voice for the patient and for the doctors who care for us with all of their hearts. Be well, Doctor. I will miss you. 

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.

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 9-12^th, 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!  

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…