“My leg hurts.” This is the sentence I dread the most. Sometimes it is the first thing my daughter says when she is still mostly asleep. Or the sentence she says at 2am when she wakes me up searching for comfort. JA sucks.
This evening it is what she mutters as she is getting into the shower.
She sits on the bed. A pillow beneath her little legs with a heating pad under her knees. I don’t know how much it helps. But it must…because this sweaty little girl that has always evicted the covers off her bed no matter the temperature wants the hot pad beneath her knees.
This is what I hate most about Florida; The abrupt shifts in temperature and the frequent rain storms. The weather forecast says that the temperature is dropping over 20 degrees overnight. I expected her to complain but I didn’t mention it– hoping it wouldn’t affect her legs. But it does.
I played the flute and oboe for 15 years and followed that with jobs that consist if loud pounding on a keyboard all day. The middle joint of my right ring finger is plagued by arthritis. Tonight it’s bothering me. A nagging throb.
I can’t imagine how such a small preschooler deals with both of her knees and her elbows throbbing and persistently hurting.
I can’t imagine the pain that my mother is feeling and I pray that the temperature shift is not as dramatic in South Florida where she is.
It is times like this that I feel guilty that my mother and my daughter suffer through the chronic pain and only my finger hurts. My mother’s shoulder was replaced due to her RA. I’ve seen the pain in her eyes and hear it in her voice.
I know that she harbors guilt over her grand-daughter’s pain. I tell her that Rheumatoid Arthritis and Juvenile Arthritis are not the same thing but I can tell she doesn’t believe me. She’s hurting.
It is not her fault. She didn’t sneeze on my baby and give her arthritis. This couldn’t have been prevented by washing her hands. It would be like getting angry at your mother because your hair is naturally dark instead of blonde. These things are not within our control.
I want to take it away from both of them. I can’t so instead I hope more people learn about this disease. This disease that affects almost 300,000 children in the US.
During these times, all we can do is offer her comfort. She sits with her big brother on the couch or lies in bed with the heating pad. When it is bad she sits quietly and watches television or stares. When it isn’t as bad she rages. Her frustration and pain are expressed by anger and impatience. All we can do is offer her comfort.
Her big brother asked her once what it feels like when her legs hurt.
“It feels like my legs are going to explode.”
I am thankful that, except for sometimes in the morning, her movement isn’t hindered. She runs, laughs, and plays. When she doesn’t hurt, arthritis doesn’t even cross her mind. This girl lives life and is filled with joy. She’s silly and happy. I have no problem driving an hour and a half to get her to a good pediatric rheumatologist. (By the way, with as many children affected by JA I would think there would be more pediatric rheumatologists.) My fear is that as she gets older, the pain and frustration with take that happiness away from her. I pray every day that she will go into remission and stay that way forever.
Please take some time to learn about Juvenile Arthritis and consider donating or participating in a walk or run, because kids get arthritis too.