I am many things. Firstly, I am Katie Emmerson. Nice to meet you!
I am a writer, a reader, a thinker, devoted daughter, someone special to someone special, proud sister, good friend to a selected few, a listener, outspoken, opinionated, a fabulous cook, and an eternal optimist. I also have Polyarticular Rheumatoid Arthritis (diagnosed at age 7); notice that I didn’t mention this right off. Yes my RA is a huge part of who I am and occasionally for whom I’m not, but there is so much more to me than my disease. I like to say, “I have arthritis but my arthritis doesn’t have me.”
People often ask me if it’s hard to just get through my day to day life. How do I deal with the pain, the doctors, the constant struggle? And at times I have had no answers, or I couldn’t put them into perspective for people who don’t know me or my arthritis well enough. A lot of times I tell people the easy answer. I fight because I know it could be so much worse. I live with arthritis, I could be dying of something much more serious. Key word for everyone is that I can LIVE with this. I think though that answer downplays my disease a little. It’s still very hard to live with and at some points you don’t do much living at all. It’s more like existing.
When I was diagnosed with Juvenile Rheumatoid Arthritis I was told I had a cancerous tumor on my left wrist and would lose my left hand. After a few second opinions from more qualified doctors, I found a surgeon who literally saved my hand. He removed my tumor but found out through the surgery that I had signs of Arthritis. I was diagnosed soon after. When I was young I went through a lot trying to find the right doctor and the right treatment. I have very determined parents. My mother in particular was always searching for answers. I owe her my life. Everything I have is due to her love and persistence. She fought my insurance for me to see the best doctors. Because of my mother’s unfailing support and hard work, I spent my childhood in the halls of Children’s Hospital in Los Angeles California. In the beginning my disease was only in my wrists and ankles. I was blissfully unaware of its future hold on my life. Slowly but surely my arthritis spread throughout my entire body. My doctors exhausted every type of drug combination possible, including steroids. By the time I was 12 years old my arthritis had become uncontrollable. I was in a very active flare that took over my life. I was pulled out of school my eighth grade year and spent most of it in bed or in a wheelchair. It was the first time I remember feeling different. For so long I had been able to hide my disease. For me, even at such a young age being different was worse than being in pain. I was very aware of my physical limitations, I felt every ache and pain, but it was nothing compared to the emotional side of my arthritis. I desperately wanted to be just like everyone else.
When traditional medications all failed on me I chose to turn to experimental drugs.
I risked what little health I had left in hopes finding a drug that would bring normalcy back to my life. Enbrel was that drug. I remember being very put off with having to take an injection twice a week, but I was more bothered with the unknown. Enbrel was very new and they couldn’t tell exactly what affect it might have on patients, good or bad. For me Enbrel was a miracle drug. I responded right away. After just 24 hours I rolled my hand into a fist, a gesture that had not been possible in over three years. I improved so much that I was asked to be a spokesperson for the medication. I traveled around doing photo shoots for brochures and spoke at pharmacy conventions to put a face to my disease. I even got the opportunity to meet my real life angels the two men who created Enbrel and gave me the ability to inject myself with strength and mobility. For eight years I enjoyed my new found strength. However, I could not escape the harsh truth and reality of my disease. Arthritis is highly adaptive and even though it had been a sleeping giant, when it came back it did so with great force. Just shy of my 21st birthday I injured my shoulder at work and it sent me into a flare. I failed most treatments available at the time. I had to say goodbye to Enbrel, and moved on to harsher, more invasive drugs. Nothing worked. I watched the life I had built over the years slip through my swollen fingers. The independence I had gained during those years was the hardest part to give up.
While I watched my friends go off to college I spent my time recovering from 2 complete hip replacements. I’ve always been in a hurry to live my life. To set goals to make memories, to count myself as a winner before time or arthritis or a doctor took an experience away from me. The only remnants of a regular life came in the form of a shaky marriage, one that I would eventually lose to the stress and complications that come with my disease. Continuous denials from insurance companies, the ever changing rules that come with health plans, doctor/hospital networks and the wonderful world of fluctuating co-pays took their toll on my partner and like it does for so many, the emotional side of arthritis (which goes virtually untreated) proved to be too overwhelming. The lack of resources, the low pay from disability and the inflated cobra payments took over my life completely. I became, in the simplest of terms a name and number to an insurance company. My life, or lack there of at times, was decided by people who never knew my face or my case.
Over the years I have sought refuge in the pages of my journals, random sheets of paper and corners of napkins writing down my own feelings. I never realized what my sickness, my life and just me in general has done to the people I love most. I failed to see that my own unanswered wishes, dreams and prayers had been echoed tenfold by everyone I know and even people I will never meet.
My story does not have to repeat itself. We can and should change things for future generations. Physically, emotionally and financially this disease is draining away the very spirit that lives inside all of these amazingly strong and determined people. You should know that love, good wishes, determination and others pure will to see me as something different have been more successful than any drug I’ve ever been prescribed. But it is a combination, a team effort if you will, that starts with research, doctors, patients and their loved ones that will be the key to unlocking the prison their bodies have become. Please let this story, and the experience of others teach us that there can be a different way, that change is possible. Arthritis touches the body of its inhabitant, but its reach is immeasurable. It affects everyone. In many ways it is too late for myself. I am all to aware at times that my permanent damage stretches much further than my joint deformities. Yet, if my limited existence has the potential to show others how to truly live, everything I have been through, everything that has been sacrificed by me and for me has been worth it.
Katie M. is a young adult who was diagnosed with JA at age 7. She was one of the first children on clinical trials of Enbrel, and is currently a passionate advocate and mentor for children with rheumatic diseases. Katie blogs here. http://delightfully-decorative.blogspot.com/2011/01/lil-ole-me.html