We had a great weekend and Bella's pain was quite manageable. She hurt, but it didn't keep her from going to watch her sister cheer, sleeping over at a friends, going to her Grammy's I kicked cancer's butt cookout, going to a hayride & corn maze, cheering at her own game, and visiting her friend. Though she was the first one to sleep each night (one of the crappy side effects of JA is being extremely tired), she really had a great weekend. It's weekends like this that make it hard to believe that my daughter has Juvenile Arthritis. Like I said before we will take the good days when we can get them and deal with the bad days as them come. I keep singing in my head a song from my childhood, "We take the good, take the bad, you take them both, and there you have The facts of facts, the facts of life." I use to love the show, The Facts of Life!!!The crappy part of having an auto immune disease is the idea of not knowing what tomorrow may bring. The worst realization is knowing that this is a forever disease and we can't take a pill to fix the problem. We can only help manage the pain, slow down the progression of the disease, and try to reduce the joint/organ damage. I spend most of my free time educating myself and trying to understand the how and why of the disease. The first step in helping my daughter is to learn as much as possible and teach her. Soon Bella wants to do a presentation to her class about her disease so that her classmates can understand what she is going through. Education is powerful and we can't be upset by people not understanding when we haven't taken the time teach them.
Together Bella and I will begin the journey of educating others about Juvenile Arthritis and soon we hope to begin fundraising for the Arthritis Foundation in hopes that one day there will be a cure for JIA.
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