A Bit of Explanation

Hey one and all,

I hope life is treating you well and that CRPS is being kind to you today. I pray that it is.

This post I simply want to try and explain how much this event means to both Kaylee and I, and how much we appreciate all the support you are giving us. When we began throwing ideas around, thinking that an international CRPS meet up would be awesome, we never thought that we would get the response we have had. Our cause has over 100 fans on facebook. There are 15 confirmed guests for the event, and many more who may be attending. This is amazing. Words can't explain how blown away we are. So, that's our first thanks!

Being both teenagers, Kaylee and I have had more than our share of doctors not treating us like responsible adults, preferring to talk over our heads at our parents. This has frustrated me from the very beginning and I have gone to great measures in an attempt for them to talk to me like the mature person I am. The fact that people are taking us seriously with CRPS Retreat means so much. Nobody is letting our age hinder them in believing in this event. Thank you, thank you, thank you.

University has begun for me now, and physically it is exhausting. More than I can handle. But as I struggle to get to my next class, which, of course, is on the other side of campus, I just think "CRPS Retreat. Just remember that." And do you know what? It works. I get to my class, worse for wear, but smiling.

So, people say actions speak louder than words, and while Kaylee and I struggle to find the words to properly explain how excited we are about this event, I have tried, and I hope that at least a fraction of our excitement comes through in this blog :)

Love you all so much. xx love Kaylee and Ailsa xx

Still Going Strong

So, although I haven't blogged here in ages (!) I am still totally amped for CRPS Retreat. The thought of meeting a group of people who know what it feels like to live this way, is so exciting that I literally cannot find the words to explain it. People all the time use the cliche of being "lost for words" or there's "no words that could describe this", but in this case, it's true. I CAN'T find any words to explain how excited I am, proven by the fact that every time I try, it doesn't come out half as passionate as I was hoping for!

I begin University tomorrow, and I'm so nervous. Not the normal kind of "butterflies in the tummy" sort of nervousness. This is full on panic attack, being eaten alive by carnivorous butterflies, while my lungs shrink to nothing. I have a point in this though. My point is that CRPS Retreat is keeping me breathing. The thought of finally meeting you, Kaylee, meeting all of you, is what is repeating in my head, making me pack my bag, make my lunch. Unfortunately, the New Zealand School of Music is NOT disability friendly. More like anti-disability. Ok, that's a little extreme, but the physical landscaping and design of the University is not making it very easy for me to move around Campus. I refuse to let CRPS take one more thing away from me, but my increase of pain simply from O Week is what is worrying me. How am I to cope with one week, let alone a trimester?

Anyway, I should probably stop rambling about unrelated nonsense here. I hope you are all doing well, and that the thought of our event is helping you through whatever you may be facing, CRPS related, or not. Know that I love you and am so appreciative of all the support you have shown Kaylee and me. Love to you!