Emily

Today Emily's RSD is galloping ahead but we don't let it beat us. I have developed just the right blend of compassion mixed with forceful positivity that gets Emily going in the morning. Structure and discpline have remained in place together with NO! drugs of any kind. It's been 18 months since I took her off vicodin and lyrica and the miriad of other medication that anyone and everyone threw at us. No more! It's all great giving RSD kids medication but have they really researched the long term effects?? Nope! The medication doesn't really work anyway it just sends your child into an unrelenting fog. That's not something I ever wanted for my child and I simply wont have it. Her pain level I hear you ask?? Emily is still in chronic pain. her RSD is now in her feet and legs, hands and arms and new "feelings" develop often. Recently a new patch on numbness arrived on Laura her "good" leg, I show no fear as I'm careful not to cause alarm.

Emily's pain level is around a 9 out of 10 which is obviously very high, Her stamina is low but she's high functioning. School has been disasterous but I've found her a way to graduate to high school this next year and i'm ever hopeful that each year will be better.

My daughter is an amazing young woman, an inspiration to everyone she meets. You would never know that she lives with this chronic disease because her face is rarely without a smile that lights up the world. I couldn't be prouder of her :)

We take the on 2 off 1 approach. 2 days filled with activity then 1 day to recover, it's been this way for quite sometime. I made a point of making her responsible for her own disease, I backed way off. I have to make her ready for adult life so wrapping her up in a fleece blanket for the rest of her life just isnt practical (although I often want to do it). We've come a long way.

I don't know or care what the future holds because only today counts, I can't control RSD so it will do as it pleases without our focus. We live purely for today.