Monday

A good friend told me recently that she would rather earn her RSD flare up than just get it with no effort. She knows that if she comes for a visit she'll suffer badly the next day but that she'd rather visit and enjoy her time out than miss it and be in pain anyway. As hard as this is to grasp that is life with RSD. Flare ups hit anytime, anywhere and knock you down for days. We share our friend philosophy and do our best to live life to its fullest even with RSD nipping at our heels.

Today Emily woke in terrible pain all over her body. She's in chronic pain everyday but it's somewhat isolated to her legs and never goes below a 7 out of 10. Today it reached 10 and stayed there. We knew it was coming. A Birthday weekend with big brother Zach with us was bound to bite us. Months of this have helped us prepare for these kind of days and we handle things very differently now. Out comes the flare up tray and out comes the inflatable bed. Grandmas fleece pajamas complete and the picture and we're good to go. I give her a day or maybe 2 depending how bad she feels then it's up and out before the pain sets in for the duration. Today however with the gentle coaxing of spending her Birthday money I loaded her up and we took a slow walk around Target. Sometimes she can walk from the car to the store then sits in a wheelchair and we zoom round and some days she manages a slow walk. Tonight she had her own cart, purse and spending money so I just followed her round until she couldn't walk anymore. I think she did beautifully!