Happy New Year

Here's to 2013 being the year someone finds a cure for autoimmune disease. I know it's a very high hope, but without hope there isn't much chance of anything happening (even though 'hope' was one of the things found in Pandora's Box).

I promise to do everything in my measly little power to make that hope turn into reality.

All the very best to all of you and your families and may the grips of Wegener's be a distant memory in the not too distant future. I hope 2013 is full of constantly increasing health, love, laughter, joy and prosperity (however you define it.)

From my family to yours. Lots of love.

Marta

I need to give you an update

Hello friends. In my usual overly verbose way I need to give you an update on what's going on.

I just had a new member of our very elite club contact me regarding the book. Welcome Harry. This contact made me realize that there needs to be an update on how the various forces have changed my tangent somewhat but the overall objective is the same. That being that one day we are rid of Wegener's but now the focus has gotten wider in that one day I want to be witness to the elimination of all autoimmune disease.

Back to the book. I have collected some very forthcoming stories from some great people who were willing to share in order to help others.  The purpose of the book was to have somewhere where newly diagnosed people can go to for advice, hope and to see that there is indeed a light at the end of the tunnel, and it's not a train. I couldn't afford to self publish and the vision I had was not what the 'self publishing' companies offered, so it involved some solid work on laying it out (I'm not afraid of that and it's in my realm of skills, but the energy bit is what throws a wrench in the works.) I decided that if the objective was to give access to more information to people, it made no sense for me to be holding on to these stories while more people are getting diagnosed each day and looking for information. When I got sick, there was very little out there and compared to some of my dear friends that have been dealing with this for decades, I was lucky. I decided to put the stories on here so anyone can access them and use them to help with their own situation. I am missing a couple on the site because I didn't get a reply allowing me to post them from their owners, but it gives a good perspective. I haven't completely written off the book, but it's on the back-burner as I have chosen to channel my energy in a direction that I think is more likely to help us with our goal of eliminating this sucky disease.

Find the Common Thread. That's what I feel with all my being is the answer and will lead us to a cure for ours and the 140 other autoimmune diseases out there. We can not only work towards saving the rare lucky bunch of Weggies but millions of people (one in five), save billions of dollars from our overburdened health care system and open all of that infrastructure for other diseases once we get out of the picture. We (autoimmunies, not just Weggies) are a big burden on the health care system being chronic and many of us incurable.  I also think the answer is very close to the surface. We don't have to dig deep, just scratch the surface because so many people are working on their own disease and if we manage to get them to pool their efforts and data, the answer is not far. It's such a win win situation. AARDA (www.aarda.org) is doing this work in the US but not much happening in Canada.


I have found my dharma and it took living with a crazy disease for a while to get to it, but now that I know what it is, I will do everything I can to see it materialize.

I ramble on and on and I hope what I've rambled on about here makes sense. I admire people who can relay their thoughts in a few words. It's an art I have always admired but never achieved. Please forgive me.

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.