Nature is a dominant theme in my life, from planting wildflowers to walking on woodland trails. I find myself always gravitating towards water. Many times a week I am in a pool. Retired from the business world, I have a wide range of interests: photography and travel, ongoing educational pursuits, volunteering, and the one that always keeps me busy, maintaining a hundred-year-old farmhouse and outbuildings with an assortment of pets. You’ll never find me without a book or my laptop nearby for a good read or to write.
At the age of thirteen I developed juvenile rheumatoid arthritis (now called juvenile pediatric arthritis). My family’s physician called my home with the lab results. I had never heard of children with arthritis, and thought I was turning into an old person. Many months later I was admitted long term to a major medical center on the cusp of a new approach to JRA treatments. I was at the right place at the right time and didn’t even know it. Rather than being put to bed and treated with strong steroids like many children of my generation, I began physical therapy and was given milder medications.
After so many decades I can become numb to pain, and have to watch myself to make sure I am caring for myself and not overdoing when my body tells me to ease back. Often it is easy to ignore the realities of an altered immune system. My drugs are a life saver, but they expose me to vulnerabilities a normal person doesn’t have to worry about. A simply cold can become more.
My timeline is so long with this disease, a half-century, I’ve learned for all the bad periods there are also years of remission. The pendulum does balance itself given time. What may only be the seed of an idea in a researcher’s mind today, may be the answer to my shifting needs in the future. My faith allows me to trust that I will always find that ray of sunshine when needed on a cloudy day.
Silence does not motivate answers. Advocacy allows me to not only inspire, but to push the edge for patients and medical professionals. Doctors may be the architects, but we are the builders of our life. Respectful communication, and feedback between both groups, can make the life of someone with rheumatoid arthritis so much more…livable.
