Thursday, May 31, 2012

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

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

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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.  

Friday, May 11, 2012

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.