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