Tonight the kids and I were watching Mystery Diagnosis. I record it just about every day and we watch when there is nothing on. The kids find it interesting and I often find myself thinking, I should have been on this show.
We were watching an episode about a teen age boy and Jordan would ask questions about what tests they were doing and if she had any of the same ones done. I'm sure she did but after all these years I don't remember. She goes back to watching then turns to me and basically yells, "WHY ARE THERE CURES FOR OTHER THINGS & NOT THIS?"
The look on her face said it all and she almost started crying. I had to hold my tears back. She's had enough. We've all had enough. Arthritis has made my baby grow up too fast. She's tired of taking these meds that make her sick, she's tired of being different. For the most part she has accepted that this is her life and she does really well dealing with it. But then there are times like this when it gets to be too much.
The episode we were watching ended with the boy being cured with an antibiotic. Some rare illness that only 1 in so many tens of million ever get and it's cured with an antibiotic. Here we are with close to 50 million people and 300,000 children living with a potentially deadly disease and we're no where close to finding a cure. I know the same can be said for diabetes or HIV and I'm not saying that arthritis is more important then those diseases. Why are there so many people working to find a cure and treatment for those diseases but not for arthritis?? Is it because it's "just arthritis?" Only old people get arthritis, right? Not the kind of arthritis that Jordan and I have. This can kill us. And I know people don't get how life altering arthritis is. They don't understand because it's not put out in the public eye like HIV or diabetes or cancer.
Everyone has something they fight for. Something that is close to their heart for whatever reason. This is my fight. I will do whatever I can to help find a cure for my daughter and the kids just like her. No one should feel the pain I felt tonight, it was like a thousand daggers in my heart.
"WHY ARE THERE CURES FOR OTHER THINGS & NOT THIS?"
"I don't know, baby." What else could I say?