I am on listservs & watch blogs of many families that struggle with JRA in their child's life. I see emails & reports of concern, bad things, sadness, etc & I said out loud, "I wish that there were posts of the celebrations!" and then I heard it spoken back to me:
BE THE CHANGE YOU WANT TO SEE IN THE WORLD!
OK! I heard that loud & clear! So allow me to post our celebrations with JRA! Juvenille Rheumatoid Arthritis is a "crazy monkey" as Dr. Foster told us. If you have that visual in your head, imagine the monkey sitting eating, he's under controll & then SPASTIC, WILD, RAGING, wreaking havoc. It can.
Right now, we are in the quiet & controlled stage beacause of medications. (Charlotte has a weekly shot at home of Methotrexate & monthly IV infusions of Remicade.) I love this stage & would like to stay in it forever (the conrol, not necessarily the meds)... and then SHOOT THE MONKEY & NEVER LET HIM COME BACK!! AH HA HAHA!!! Did you get that visual too? At summer camp I was a pretty good aim w/ the bow & arrow so watch out crazy monkey!
Tomorrow starts our "official" monthly visit to the hospital for Remicade (Infliximab). We have had two inductions so far, but now starts the "monthly" visits for the next two years. I think I will be making a countdown chart.....
I have my stickers & paper ready to go for art projects, we need to go knock on our neighbors door for the IPOD, we have our "playdate" with our sweet friend set up & she will drop by with lunch (she's amazing FG#1 - fairy godmother #1 - & yes there is a #2 as well!). So we are set!
After this remicade infusion, we will drop our eye drops (pred forte steroid) DOSAGE down to every 4 hours & then weekly drop it another hour - until we are DONE.
I keep this all written down in my calendar - its the only way to remember it all & when it changes. We have a fantastic huge timer & i will share the brand with you at a later date.
I am trying a new calendar system since the handheld isnt working for me. Since I am a writer, I tend to print out each day & keep it on my clipboard (I hear the trees crying now) - its such a waste & not efficient, i know. SO! I am looking forward to seeing my Whomi Clarity calendar coming SOON! It was only $9 to try because its a 2008. That's worth checking out - Especially if Kelly Ripa uses it & it made Oprah's favorite's list!
Today is our friday for our Memorial Day weekend - the girls are off F&M so WHOO HOO! I have to get back to work of making a cherry slab pie for our friends visit tonight!
But I make this promise to myself - I will post the GOOD! And the progress! And the learning! And the inspirations (CARRA WALK is June 8th)!