CRPS/RSD Awareness

Hey guys!

Both Kaylee and I made videos this last week to raise awareness for CRPS, and to help explain to others what it's like to feel this pain. I just thought I'd post the links here, so that if you want to check them out, you can. Hopefully they might help explain to your friends and family what it's like to have CRPS. One of the things I find hardest is people not understanding what it feels like to wake up in agony, and for that pain to never leave. I'm sending good pain vibes your way!

My video: http://www.youtube.com/watch?v=coR3JtCeBqk

Kaylee's video: http://www.youtube.com/watch?v=y5KHelxalF0

xx Ailsa xx

It's Been Way Too Long!

Hey Guys,
Sorry that we haven't updated this in ages. I've been overwhelmed with University work, and keeping up with my health, so I've had to put a lot of things on the back burner for awhile. But I'm back! And hopefully there won't be such a long gap before the next entry >_<

In regards to CRPS Retreat, it is still on! Sorry if anyone has doubted that it's going to happen due to the lack of activity these past few weeks, but everything is still going strong! While I was in Auckland meeting some new doctors, they were amazed to hear about what we're doing here and want to help. They have suggested that if Kaylee and I (and anyone else who would be keen!) wrote down some notes while away about what we did, how it went, what activities worked well etc, then they can back us up next time. This would be awesome - having some medical professionals who are supporting us will definately give us advantages with fundraising, and such forth. If any of you talk with your doctors or friends about this, who would like to help us out, just leave us a comment. There's small things to organise, like looking at which hotels have cheap conference rooms around Yorba Linda, in California (the current location of our event) that would be awesome!

I must go and finish my assignment before having a rest. It's been a really bad pain day, so if you could pray or send some nice thoughts my way that would be much appreciated. I'm thinking of you all and I truly cannot wait to be able to spend some time in person with you!
Love, prayers, and hugs. xx Ailsa xx

Health Update, Among Other Things

Hey guys!

Consider this a news bulletin on both mine and Kaylee's behalf :)

First off, as some of you may know, Kaylee is currently at an inpatient's facility, in order to try and figure out what's going on with her health, other than the CRPS. If you could, please pray for her and hope that the doctors there will be able to help her. She is an amazing young woman, and no matter how hard this road has been since being diagnosed with CRPS, she continues to shine and inspire everyone around her. She has been such a fantastic friend to me, and I'm so lucky to be working beside her for CRPS Retreat.

As for myself, at the end of this week, I'm being sent up North to another hospital, to meet a series of new doctors. We're hoping that someone there may know a bit more about what's going on for me. My vision has yet to improve at all, so they're trying to find out what's happening neurologically, and try and get me stable again. They'll be taking a holistic approach to create a coherent treatment plan, and we are unsure yet if that will result in me being admitted as a longterm inpatient, or if it will be able to conducted as an outpatient, with me in Wellington, and the doctors in Auckland. Who knows as of yet! I'm guessing that this will be my last blog post until I come back at the end of next week (fingers crossed!), so I apologize in advance for not being around.

Now, onto CRPS Retreat itself. I've been doing a lot of thinking lately, due to my increase of pain, and therefore an increase of time spent doing nothing but lying in bed. My first thought was what do you want to do while away? Kaylee and I have some ideas, which are definitely viable options for us, but it would be great to hear your ideas. One thing we will be organising is transport, so nobody has to worry about being unable to keep up with one another. We are both well aware of the limitations CRPS has on your mobility, so we're going to make it as pain-friendly as we can. There will always be the option of doing something low-key if people are overly sore on one day. Secondly, we have thought about this, and if you have family who wish to come, that is fine, but there will be some activities which will be CRPS patients only. Perhaps family members could arrange something among themselves to do while we meet, or else they could go sightseeing etc. But that's a minor detail that can be dealt with closer to the time >_<

Let's see, what else have we been discussing. Right, the conference part. Now, we are unsure if people attending will want to have CRPS doctors/researchers talking to us. What do you think? If you think that will be a good addition to the conference, Kaylee and I can start looking around for people who may be interested in sharing this event with us. If not, we will have plenty of activities and other event-like things to do. It would just be great to get your opinions on this one. I have been talking with my Dad about creating a loose structure for the event as a whole, as he coordinates conferences on a regular basis, and he knows what are the essentials to get down in the plan. This has been really helpful, and next time I get to talk to Kaylee for a good period of time, I'm going to go through what we have so far. It's really taking shape!

Ok, well I think that's enough for one entry. I hope that everyone has had a good day, and that you each can identify at least one good thing that has happened today :) Sending you my love and prayers, and my cat Dolores meows hello to you also.

xx love Ailsa and Kaylee xx

Author Appreciation Week Part II

Ok, this will be a really quick follow up to the last post! Firstly, can I please say, comment back with your favourite authors! That would be great to see. One of the things I love best about books, is that they allow people with conditions such as ours experience things that we otherwise would be unable to do. I know that things such as flying, or Fading through graveyards aren't activities that every day people are able to do. But simple things, like traveling, or participating in community events, are also tasks that, certainly for me, are difficult. Reading allows me to do those things, though. It liberates me! Anyway, moving on to my next top 4 authors: *clears throat*

5. Will Peterson - Wrote a series called 'Triskellion'. Perhaps are aimed at teenage boys, but are nonetheless gripping! They're quick reads, so if you have the chance, check them out! We're still awaiting the third in the trilogy.

6. Maureen Johnson - What can I say? She makes me laugh. And in the same sentence, she can make me cry. I certainly do a lot of both while reading her books. No matter what mood I'm in, one of her books will help me through the day. I'm not exaggerating when I say that the acknowledgments in 'Suite Scarlet' made me laugh more than I have when reading entire books! Not to mention her Tweets!

7. John Green - It seems only fitting that John's name would sit beside Maureen's. Two Nerdfighter authors. Two extremely talented people. Two collections of books that keep me alive!

8. Saradha Koirala - One of the English teachers at my high school. She writes some of the most heartfelt poetry I've ever read, and on top of that, she's such a humble and gentle woman. So lovely!

See you tomorrow with my last installment of authors. I hope everyone is ok with me rambling about books for the last few entries :) Love to you all, and I hope that pain is treating you kindly today.

xx love Ailsa xx

Author Appreciation Week

Ok, so I know this title sounds random, but actually, it relates to CRPS. Well, I think it does. I read for escapism. I read to distract me from the pain. So it makes sense to thank those authors who help me get away from the "real" word, per se, during this week! Anyway, this will be short >.<

1. Suzanne Collins - absolute genius. I adore The Hunger Games Trilogy, and it's been a long time since I found a book which kept me this captivated!

2. Neil Gaiman - I met him three times over the weekend, and not only is he an amazing author, he is an incredibly lovely person. Which makes me even happier reading his books, knowing that the man behind the words is so nice!!

3. Sylvia Plath - I think it's because I can relate to so much of what she as a person was going through, so her writing, especially poems such as Tulips, really connect with me.

4. Scott Westerfeld - The Uglies series kept me so engrossed, that even when we were on a beautiful island, in the heat of summer, I sat in my room, reading!

On another note, CRPS retreat is going well! Kaylee and I are meeting up today to write down our action plan :)

xx love Ailsa xx

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

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.