Anyway, my motivation took a dive when I started developing a cold on Monday. But this was no time to crawl back under my stone. I just had to suck it up and push on which I did. Not travelling to Sydney and rescheduling all the meetings I had planned was going to be way too hard all things considered.
Anyway, I had my first meeting on Tuesday morning. It was with representatives of the Steve Waugh Foundation and their goal is to help children with rare diseases. They do this by financially assisting sufferers with treatment, medication and equipment. I thought it might be a good fit for me as when I looked at setting up my own charity I was thinking about a treatment based charity that assisted patients finding effective treatments for their condition (starting with HSCT for auto immune diseases).
I have since found out that setting up a charity is ridiculously hard and the advice I received was to find another charity with a similar agenda and assist them from within their structure. Personally, this meant that I could start doing what I wanted sooner and I would not have to waste any time with the administrative duties plus it would decrease my personal liability. From where I stood the Steve Waugh Foundation was a good fit.
My meeting was very constructive however, it was not quite the right fit. I'm sure if I keep on traveling down this path I will deal with them in the future but for now not so. The Steve Waugh Foundation is set up to assist people financially. I want to directly advocate for people and help find treatments for them so it is not a perfect match. On the plus side I got some great contacts and was able to figure out my next step.
In the long run this is the direction I want to go in. I believe that in the course of my education and career, coupled with my experience as a patient and trying to find solutions to my own problems I am ideally suited to advocate for others. So, watch this space. I have only just started.
On the other "professional" note I met with an old friend who has now become a neurologist. Aside from being a great catchup on a personal note it was also an awesome opportunity to show a neurologist first hand how I have improved after HSCT. Doctors can be your biggest advocate or your biggest spoiler and when it comes to a "patient" trying to tell them something they instantly become guarded. Interestingly enough I have been called by doctors both an inspiration (thank you) and a charlatan. I would take the latter personally if I didn't have a thick skin and the doctor wasn't a complete moron.
I also met with someone who could help me with my book. The lady in question has spent a lifetime in publishing and to get some quality feedback was invaluable. I honestly have to say that without her assistance I probably wouldn't finish the book. I was really quite nervous when I went to see her. I have never written a book before and I have to say that I was really worried that she was going to tell me it was rubbish. Luckily, she said she really liked it and keep going. Phew. I once again could breathe and keep going with renewed confidence that I was doing a good job.
But above all the interesting things that happened whilst I was in Sydney there was one that stood out more than the rest. When I first got sick with CIDP I was living in Sydney and I used to play indoor cricket with some friends. After I got sick I had to stop playing as I couldn't run the length of the wicket any more.
When I had my HSCT last year one of my goals was to play cricket again. So I hooked up with old side and went out for a game. As nervy as it was I could once again run the wicket and although my crafty left arm overs had lost their swing and sting I could still put the ball in the right place to cause a few headaches. And it did. According to the score card I was the best performing member of my team! Which doesn't say much, my team isn't very good but I'll take it anyway. Oh and yes, we got severely hammered. What counted for me though is that I played. And I not only played but I was competitive.
I have attached the score card. They have me down as playing as my nickname, Pommie. Which isn't so bad. At least I am not Gobble Gobble or Huggies.
Other than that the only thing to happen of not on my journey was that I caught up with another old university friend and we went and watched Star Trek. What an awesome movie! Until next time, stay well:)
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