A Chronic, progressive disease. If you look at the dry, scientific literature speaking about rheumatoid arthritis you will inevitably see this phrase. But what does this mean to you as you go about your day? For me, it means two things- loss over time and change, or adaptation. As my disease progresses it becomes more visible, not only via x-ray but also as I walk down the street. It isn’t invisible to the naked eye anymore, instead, it is one of the first things to walk in the door; a limp, crooked fingers and loss of motion are only the tip of an iceberg filled with challenges.
But as my disease progresses, so does my ability to handle the challenges it brings.
A few years ago I was watching the television show, Chopped, which is a contest in which people have 20 or 30 minutes to come up with a tasty dish out of four ingredients that they only find out about a few seconds before the clock starts. When the final dishes are presented to the judges, sometimes the contestants are asked questions such as why they are on the show, why they became chefs etc. On this particular show, there was a chef who said she was diagnosed with rheumatoid arthritis a few years prior and she wanted to cook as long as she could until the disease took that ability from her. When I heard this I cringed. My immediate thought was, “How negative, what a way to think!” Now, a few years later, as my RA has progressed into my neck, I look back with a different attitude. That chef wasn’t fatalistic at all, instead, she was acting in a smart, realistic way, one that took into consideration the cold, hard facts of her disease and changed her life plan.
I can’t go back…
But I can learn right now and move forward in a different way, and that is what disease progression means for me today. I have finally progressed physically enough that my perspective has progressed as well. In fact, as the New Year rings in 2017, I am taking an assessment of my health, and how I have handled my health challenges for the past year and I am realizing that it is time to change a few things if I want to maintain my quality of life. I can cry, I can scream, I can blame myself, others, God, I can refuse to accept my reality, but none of this will change the facts. So, instead, I choose to figure out how to handle this latest loss, the loss of pain-free movement in my neck, and the implications of this for my daily life.
It has become even more important to maintain motion in the rest of my back, so I am seeing a physical therapist who is advising me on specific exercises that will help my situation. I am researching neck pillows, in order to improve my neck pain during sleep. I am reaching out to other people who live with JRA neck pain to find out if they have any ideas for me. I am discussing my pain with my doctor. I have stopped wearing backpacks. I log roll out of bed. I use a heat pack every night. I massage my painful neck as much as my painful fingers allow.
As I enter 2017, my biggest wish, (since world peace seems to be out!), is to avoid any further physical disease progression but to progress in other ways. Improving my ability to see with clear eyes, and to adapt my life accordingly so that I can wake up every day with more meaning, more purpose, and more joy in my heart. This is the kind of progression I welcome with open arms.