Busy little Weggie Beaver

I'm just checking in to say I'm doing all that I can to get us closer to our goal. I've sent out 6 letters and have dozens more to go. I hope that someone reading them has the same 'aha' moment I did when I read the Common Thread article by Dr. Noel R. Rose (Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD) who incidentally has agreed to help us out with our next PJ Day here in Jasper. I have invited him to be our keynote speaker in hopes that he can inspire that many more people. You have to read this to hear it from the Rose's mouth: http://www.aarda.org/common_thread.php.

Things are coming together slowly but I'm still in search for a computer wizard willing to share some of his time and aptitude for a good cause. Once I get the person, I know - KNOW, we can start making some good money that will go towards research to find the common thread, and other plans I have (none of them involving my pocket).

Physically, things are "aaaight" - I had (as well as Brian and Hana) that horrid stomach flu a week and a half ago and although not feeling violently ill since the initial bout, I have a feeling it messed things up and is hanging in on a low key sorta way. The only thing that's crappy about that (other than feeling like I have no spoons and just not very healthy) is that it can cause a flare by making the immune system be in defend mode for such a long time. I've been feeling other symptoms the last few days that are not flu related but deeper. They're nothing to write home about but give me the hibby jibbies because I so don't want to go there right now. I'm at 3mg of pred and really want to get off it for a while to let my adrenals have a little more life. So I'm keeping a watchful eye on how things progress but I'm not obsessing about it and I'm hoping that it just goes away. I'm deaf as a door knob too so maybe when it goes away it will unplug the eustachian tubes and I'll be able to hear again.

Off to write a few more letters. Wont know if I don't try.

My Inner Ninja - Classified

Just listen to the words. My filter is in full swing.

https://www.youtube.com/watch?feature=player_embedded&v=RwBb3byQhvE

My FTCT filter

Funny how when you get something in your head and know it will be what you're focused on for a while to come, everything you perceive after that point goes through a filter with that title on it.

Now everything I see, everything I hear automatically goes through my - how is this going to help us find a cure for autoimmune disease? - filter.

It reminds me a bit of when I went to Bulgaria for the first time after we ran away when I was a kid. I was 18 and fresh out of High School, feeling like the world is my oyster and went for a summer holiday back to the country I lived in until I was 10. I realized the moment I got off the plane that even though I was speaking fluent Bulgarian, there was this almost imperceptible nanosecond delay between my thoughts and my speech. My brain was translating everything from English thoughts to Bulgarian words. It was a cool experience to be witness to this brain functioning in living colour. Then, about two weeks into the trip, I went to sleep one night and dreamed in Bulgarian through the entire night. I woke up and was pleasantly surprised by the experience but when I went downstairs to talk to my family, I realized that I was now thinking in Bulgarian, and the nanosecond delay was gone. My filter magically vanished in the night and a new reality was upon me.

I hope that one day I will be able to have my dream come true and wake up to a world without autoimmune disease. I hope that this will happen and I can consciously relieve my new filter of duties. I hope that no other people have to wake up one day fighting for their lives and say "so tell me again, what is an autoimmune disease, and why is it killing me?" or " doctor just told me I have arthritis and they can't do anything about it and I just have to live with it," or "but I've been on chemo and steroids for almost three years now and it sucks", or "I want my life back".

My Parks Buddies last PJ Day. Love ya guys.

We will change it together. Only by teaming up can we make enough noise for people to hear and start doing something different. Like Mr. Einstein said "insanity is doing the same thing over and over and expecting different results". We need to pool our efforts and look for the commonality in all of the branches. We need to start talking together, getting together, learning together, finding together.

Next PJ Day and hopefully the other stuff that will go with it will be amazing. If you know of any super smart computer geniuses, ask them if they wanna jump on board and help us by sharing their brain power. I need to put together our revenue generator.
 

Upward and onward

Many things going on in my bubble of non-reality known as Jasper. It's November 9th and I went for a ski today. Crazy. I am not what I use to be but being up there just has this healing effect on my soul and everything around it. Kinda like what Maui does to me. I only went for a few runs because I just don't have the jam, but boy it was wonderful.

I've also decided to go with the better option of those presented to me and will be retiring on disability. What I told the wonderful lady from the insurance company is that I know that I will have times where I'll feel strong and closer to the old me, and I'll have a hard time being a person on disability at those times, but I also know that I will need down time in the future because a big phat flare lurks just around the corner waiting for the perfect opportunity to pounce. So I will do what many fight to get to do and go on disability,and I'll use my strong times to try and make things better for all of us. I'll feel justified then with the disability thing and it'll be good for all of us. I have gotten together the most amazing group of people for our Board of Directors for the new Non Profit Society we're starting up. We have my awesome sister Hana Rode, who runs the Carpet Studio, Sue Cesco, Manager of Friends of Jasper National Park, Steph Sophocleous, Manager of Tekarra Motel and co owner of The River Stone Yoga Studio, Richard Ireland, Mayor of Jasper and partner at Rodger and Ireland Barristers and Solicitors, and little old me, Marta Rode, Weggie instigator. You watch what happens when this group get their hands in the batter. For this coming March 1st we'd like to take last year's Pajama Day success and multiply it exponentially. I will keep you posted as events unfold, but we're taking the world by storm this coming March. Get your PJ's ready.