Awoken by the soft mewing of a newborn's cry, I turned over and swung my legs over the side of the bed. Before my feet reached the floor, shards of glass pierced through my heels. I could barely walk. This was a nightmare I couldn't wake up from.
As the mother of 6 young children, I was clearly unprepared for the reality I was facing. In an instant, I was thrust into someone else's life. Someone I did not recognize.
At the top of the chart were the words I most feared, Rheumatoid Arthritis.
I wondered out loud, “Who am I now?”
My grandmother's hands were twisted and gnarled. Her knobby knuckles reminded me of tree branches, weathered and worn by the elements. Deformed by the ravages of this disease, self care was a distant memory. Looking down I traced my knuckles with the side of my fingernail. My hands still appeared slight and young.
What did the future hold for me?
After my diagnosis, I refused medication and interventions. A former doctor of mine always said, “You can't make Jennifer do anything she doesn't want to.” I am not sure what I was more afraid of, the side effects of the drugs or admitting I wasn't invincible.
This disease tried to stare me down, but I closed my eyes and pretended it didn't exist. Try as I might, I always knew it was there. Far beneath my skin, a war was waging. This battle consumed every part of my being. I didn't have the energy to get off the couch, much less be the mother I wanted to be.
I felt useless. Minutes turned into hours each morning as I maneuvered my stiff joints out of bed. A wave of exhaustion hit before noon each day. With each step, my legs dragged, reminiscent of the feeling you get walking through thick sand. The laundry pile mocked me as it grew larger each day. Even if the pain subsided a bit to allow me to make the flight of steps down to the laundry room, the fatigue tied me to the couch. On a bad day, I felt like a thritysomething year old woman trapped in a ninety year old body. If this was my life now, what would become of me down the road? My kids are going to grow up and leave the nest, and I will remain shackled to this disease.
Not long ago, I realized that I was existing as a spectator to my own life. It never occurred to me that this monster was affecting everyone around me. Was the disease stealing my joy or was I letting my own stubbornness win? Faced with a decision, I needed to take a good look at my priorities. More than anything, I wanted to sit on the floor and play with my children. I would give anything to be the active mom I wanted to be.
Unfortunately, autoimmune diseases like to travel in pairs, so I was not surprised to receive a second diagnosis. Instead of getting pulled down again, I chose to not let autoimmune disease define who I am.
Above all things, I will never be a burden.
Medication has changed my outlook. Flares come and go, but overall, these drugs are gifting me valuable time with my children and improving the quality of my life.
My biggest fear is a lack of understanding. Rheumatoid Artritis is so much more than joint pain. Please do not mistake my sluggishness for laziness. I may be overweight and out of shape, and those factors may exacerbate my symptoms, but they are not the cause. Through physical therapy I learned that excercise will help, but exercise is not a cure-all. Dietary changes may improve my symptoms, but ultimately, this disease is in charge. That doesn't mean I won't try to put it in its place. My goal is to become the healthiest me I can be.
The dishes in the sink may pile up, but it is not for any lack of effort on my part. Although, I may drag my feet, the desire is there. If you are my friend, please overlook my imperfections. The dust that may linger on my countertops is not a reflection of my worth.
Living with a chronic illness has not stolen my spirit, rather it has offered me the opportunity to know and accept myself for all that I am, as well as all that I am not.