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

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