Gazing at photographs of my daughter, Leslie, I see her story of juvenile arthritis played out in silent pictures. During those years, a sweetly rounded preschooler at age 3 became a painfully thin kindergartener by age 5. Six more years would go by before she was diagnosed with polyarticular arthritis.
Every time I look at a snapshot and see Leslie’s swollen knuckles and wrists, I think, “How could I have missed that?”
I have a permanent video in my memory of Leslie walking like a stiff-legged little soldier when she’d get out of bed in the morning. She only gained two pounds in two years and had very little appetite.
“How could I have missed that?” Eventually we realized her wrists no longer bent backward. “That’s odd,” I thought. For all those years, arthritis was flying under the radar.
Actually, I didn’t miss any of those symptoms. I simply didn’t know what they meant. When I questioned the pediatrician about the size of Leslie’s joints the doctor reassured me they would look normal once Leslie gained a little weight. Since Leslie’s older sister and brother were also slight in stature it seemed “normal” for Leslie to be tiny. My mother’s instinct didn’t agree. It was not until Leslie complained of jaw pain at age 11 that the red flag went up in the doctor’s mind.
Let Go of Guilt
Fortunately we live in the Cleveland area with a pediatric rheumatologist only 30 minutes away. It took Leslie’s doctor all of five minutes to diagnose what had taken years of disease to produce. And I asked him, “How could I have missed this?”
In his no-nonsense way, he assured me I would have known if the arthritis had been in different joints such as hips and knees – she would have been limping. “Don’t bother feeling guilty,” he said. “It’s an unproductive emotion.”
Leslie is now 29 years old and has been married for almost three years. She and her husband are currently looking for their first house and are excited to start a family.
Leslie's arthritis has been in remission for a year and a half, and she is off all medications except naproxen sodium as needed. After 20-plus years with polyarticular arthritis Leslie has developed the skill to be able to distinguish "old" arthritis pain, "new" arthritis pain, and ordinary aches and pains. Her finely tuned awareness is a helpful tool for managing her disease and working with her rheumatologist.
Even though Leslie's arthritis is in remission, it still makes its presence known in daily living. Winter weather and working full time take a toll on her stamina, and the occasional low pressure system has her joints forecasting the weather.
On the whole, arthritis may be a part of her life, but it doesn't control her life. And Leslie plans on keeping it that way!