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.

Funny thing, moving along

I haven't shared this with anyone except for you. It's kinda like a diary here and I write as if nobody is reading, but I have to articulate this and what better place than this venue.

So in a situation where any other Weggie would be counting their lucky stars, I find myself pushing back and I think I might have just had the awakening moment I needed to move past that imaginary line I have drawn for myself.

I have been approved for permanent disability from my insurance company (I have also applied, on their insistance, for disability through Canada Pension Plan, which I wont find out the results until the end of November at the earliest.) So what's the problem? The problem is that I wanted to go back to work. I wanted to go back part time but because there is so much uncertainty with my particular situation they want me to leave my job, a job I've been working for a long time to get to full of security and benefits and all that jazz. I am being forced to make a decision to either go back to work, resign, or retire on medical grounds. So you can understand why I've been pushing back and not wanting to leave my job. I really feel like I'm being treated very unfairly right now, and was going to take this on as a fight but I am having second thoughts about fighting as it's not so much worth loosing my health over. As long as I know I can still financially contribute to my family, I'll be good.

I met with the Superintendent of the park (the uber boss, who happens to be a very nice man) the other day and he had this look in his eyes when he was talking to me. I couldn't make it out, but it felt like he was feeling sorry for me. He gave me a hug when I first arrived for our meeting and at the end. I know he's a sincere man with the best intentions. But it was the way he was looking at me while we spoke. I went home and tried to make sense of it, and it hit me. Maybe he feels bad for me because I haven't come to grips with the fact that things have changed monumentally and I am not who I was before January 2010. I will not be that person again. I can try my hardest, but from a physical perspective, I might not get there no matter how hard I try. Maybe he felt bad for me because I am still moving forward under the assumption that I will be me again, able to take on the world and do whatever I want to do. Maybe he sees the sickly person I am as he looks at me and speaks with me, while I, don't see the physical manifestation of Wegener's (unless I look at a mirror or a picture of myself, which I avoid doing whenever possible) am operating under the old memes.

So I came to this crazy place where I figured that maybe this is the Universe kicking my ass again to make me let go of the old mental constructs I believed to be 'my' reality. It might be time to move on and release the stuff I've been holding on to so tight. I have huge plans for the next PJ Day and bigger yet for the one following... and so on and so on... Maybe I need to retire and then start making a real change in the world rather than keep trying to make a change under someone else's misguided bureaucratic shackles. I can make a difference and see it within my short little lifetime if I'm the driver of my own car, and maybe this is the nudge I needed. I'm still having a very hard time emotionally with this.

I am really hating this moment of time right now... probably more than actually being sick in the hospital. At least when I was sick in the hospital I knew that the people I am dealing with truly had my best interest in mind, whereas now I feel this is quite a different situation. All I can say is thank God for my previous boss (who just retired last month) who knew my work ethic and knew that I would do anything for Parks Canada, who stood in my corner for the last two years. Thank you Carolyn D.You are a true living angel, and we are all at a loss due to your absence. I know how happy and free you are though when I see you walking down the street, so it all happens the way it's supposed to happen.

Time to move along

I haven't posted anything for a long long while. I've been trying to get myself closer to normal and this in turn takes away from my time at the computer. It's time to move this forward though and I am starting right here, right now.

My sis, booked the Activity Centre for March 01, 2013 for our next PJ Day and I have a few things that I'm massaging in my head as far as raising awareness and also raising funds. I have been hearing of way too many young people getting diagnosed with this crappy disease that is normally a fifth decade of life disease. This has to stop and in my heart of hearts I think we can stop it by stopping and focusing on all Autoimmune Diseases, not just this one. I will continue to make this site a place where Weggies can come and get some references and feel more empowered when they are meeting with the myriad of doctors that becomes the norm in our lives after diagnosis, but I am focusing my efforts on pushing the right buttons to get more research into finding the common thread of all autoimmune disease. I feel that we can find this in my lifetime. I  want to go to my grave knowing that my beautiful little girl is safe from the genetic time bomb I have passed onto her.

This is my mission, and I will work to that end until my dying breath.

(Al, I know you're up there nodding your head because we had a very similar long term goal, so start pushing some buttons from your end buddy, let's make this happen)

Love ya Al!

I just found out yesterday that another dear friend who I feel very close with yet have never met in person has passed to the other side due to complications from Wegener's.

I'm shocked to the core.  I felt like someone kicked me in the gut when I found out.

My dear friend Al Swanson has brought wisdom and a sense of calm and control to so many people in the throws of a new scary disease threatening to obliterate any sense of normalcy out of ones life, and perhaps even ones life itself. He was a very wise, kind, generous man, and I feel blessed to have had his energy touch my energy on this planet... even if from thousands of miles away. I feel so bad because I've been ignoring my computer for the last several months in an attempt to regain my life, and I feel like I didn't have a chance to say everything I wanted to say to Al. We still had shit to do. We still had conversations to have. I still needed to learn more from him and have an opportunity to make him shake his head in disbelief with something crazy I haven't come up with yet. We still needed to compare and boast of the beauty of our respective stomping grounds.

My heart and thoughts are with Al's family, of whom he spoke with such love and respect and admiration. We have all been lucky to have been touched by Al's wonderful sense of humour, and enthusiasm to share himself with anyone who was open to it. Eileen, thank you for sharing him with the rest of us Weggies, and Al, we'll hook up on the other side and finally get together for those cocktails we kept talking about getting together for overlooking the mountains.

Love you buddy. Thanks for ... well, everything!

m