Support

A minute ago I was facebooking Kaylee, and suddenly I realised, "We have 119 people supporting our cause." On facebook alone. Wow. When we began this project, I was hoping that we'd get a few people showing interest. But this, this is remarkable. Absolutely unbelievable. Thank you. Thank you so so much.I mean it, when I say, Kaylee and I are so grateful for each and everyone of you reading this blog, telling others about this event, and for genuinely being passionate alongside us.

That's all I was really here to say, because after University, I'm really worn down. I will say this before I go though: later this week, I'm going to talk with Kaylee, and we're going to begin doing some serious planning. Will update you all when we have gotten more things put in place. I hope you're all doing well.

xx love 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!

Excitement

It's getting late this evening, so I'm going to make this quick! I just wanted to take this time to say how excited I am about this event. Not just a little bit excited. I mean, very, very excited. So much so that I break out in a smile every time I think about it. And I'm not usually a very smily person. Pain and stress make sure of that, but this event is changing that. It's truly giving me something to live for, to work towards.

The highlight of my day was when I went onto facebook today and say that there are nine confirmed guests for CRPS Retreat. NINE!!! It's been two days, and the response has been mind-blowingly awesome! (By the way, the event page on Facebook can be found at http://www.facebook.com/event.php?eid=334668421250&ref=mf) Kaylee and I were talking last night, and I don't think either of us expected for the support to be this great. We are so grateful to everyone who has offered to help, and make this an enjoyable, and stress free time for everybody attending. And trust me, it is going to be amazing! We're at an early stage of planning, but it's panning out to be a great event.

I think the most exciting part of this all is that for every one person attending, that's one more person who won't feel as if they're alone in this world any longer. Seeing that there are so few of us, and that we're spread out all over the globe (proven by the fact Kaylee and I are organising this from both America and New Zealand!), this is going to give us all the opportunity to meet with people who truly understand what a life with CRPS is like. This event all began when Kaylee and I decided that there needed to be more support for CRPS patients internationally, and also the fact that neither of us had ever met someone in person with this condition. And here we are - now organising this!

Before I go, I just want to say how happy I am to working beside you, Kaylee. You amaze me every day with your strength and I don't know where I would be now, if I hadn't met you. Love you so much, and we are going to make this the best event EVER!

xx love to you all and thank you for supporting us! xx

Has it only been 24 hours?

I cannot believe how much has happened over the last 24 hours. Was it seriously only Sunday evening when we began organising this? That's an incredible thought, but is also truly comforting. For if we can do this much in one day, imagine how much we're going to be able to do by 2011!

The most exciting news is that we were approached by a fellow CRPS sufferer, who also has experience in working with marketing and finances. He is keen to help us with the fundraising aspect of this event, and also the organisation involved with creating bank accounts, bills, and everything like that. That has taken such a huge weight off our shoulders, and we are so grateful for his offer!

This evening we've been throwing ideas around in regards to the line up for the event. We are conscious of the fact that after flying long distances some people may be additionally sore and need some rest, so we're thinking the first day can be a really low key meet and greet sort of day. Kaylee had the awesome day of hiring one of the function rooms at a hotel, so that we're able to have a big space to hang out in, and play music. Those reading this, what do you think about that as a starting plan? From there, we're going to arrange to have a bus as transport, so we'll be able to move around easier, and go out and about for short trips. The goal is for us to have a stress-free, mobility friendly time together, where for once, nobody feels like they're holding everybody up by walking slowly, and noone has to be embarrassed if they have to stop because of pain. For the first time we'll all be surrounded by people who face the same challenges every day. That thought is absolutely amazing, and such a comfort.

The thing that we are pondering over the most at this stage is the problem with money. We understand that this is not going to be a cheap trip, and it would be horrible if someone misses out because of the price. Kaylee and I have been discussing ways to raise money, and we have a few options to pursue. Here in New Zealand, we'll be approaching the Lions Foundation, to see if they are able to pledge support for us, and also we are planning to apply for the Toyota Scholarship, which goes to a charity doing work in the community. It's all based upon which charity gets the most votes, so if we choose to apply for this, I will post the link here, so everyone is able to help vote for us!

Anyway, I have a doctor appointment in the morning, bright and early at 8am, so I best wrap up this entry here. Please keep reading as more details will be added soon!

xx Ailsa and Kaylee xx

Why we're here

Hey everyone!

Kaylee and Ailsa here. This is the official blog for CRPS Retreat 2011. The decision to try and organise a sort of camp for CRPS/RSD patients arose, after we were talking one night about the lack of support for people with this condition. We came to the conclusion that until someone took action themselves, this wasn't going to change, so we've taken the initiative.

CRPS Retreat is about being able to meet up with a group of people who truly understand what you're going through, and to provide us, the patients, with the chance to have a break from the "real" world. It will be about finding hope within yourself, and finding support within others. And it's going to be awesome.