A very special moment

Here's a link to a video that meant so much to me this last weekend, on our second Annual PJ Day. The Grade One classes of Hana's school (Thanks Mrs. Morgan and Mrs. Koss, and JES) sang a very special song from the time I've been dealing with WG. Hana and I used to cuddle together and sway to this song in the early days and as time went by we could dance to it together and the words, although simple to some, really pushed me forward. I indeed felt stronger, bit by bit, and the more strength I gathered the more I knew what needs to be done. How we can change things with our voices, standing together as one. Together we are something else, something bigger, we are strong, and we can overcome this sly beast of a disease that until now has had it's strength in being segmented. By bringing all those pieces together we can now look at the beast as a whole and see where his weakness is and hopefully eliminate the problem so many have to deal with daily, just by getting together in on the fight against autoimmunity.

So when I saw these kids performing it I knew how much strength it had given me, and I could see things turning for the better already. Together we can fix things, by all of us finding the best part of us we can find and use that part to guide you. We all slip and fall sometimes, but if we keep trying, we can change things and this moment inspired me this weekend: http://youtu.be/8yhAkA7TVk8

Hitting the US autoimmunies

Here's a little show we did today with Dr. Diane Dike. All I need apparently is someone who is willing to listen and then you can't stop me:
http://www.blogtalkradio.com/dr-diane-dike/2013/02/21/eliminating-autoimmunity-together--one-pajama-at-a-time

Going Global In Edmonton

Watch Global on Monday evening if you want to see me make a foo-ool out of myself. The amazing Su-Ling Goh is interviewing me about PJ Day. Hopefully we can get lots of people on board.

What does 'on bord' mean?

It means that regardless of what flavour of autoimmunity you have and support, you can put on your PJ's on March 1st and show the world that you're part of a bigger thing. Much much bigger than any of our individual diseases are alone. Together we can bring attention and we can push for research into the lowest common denominator of autoimmunity (which we still don't know about) and if we find that, we will surely find a cure not just for our specific disease (whatever it might be) but for all of us. Isn't that a wonderful thought?

If you want to do a fundraiser of any kind, put on your PJ's and do one and send the money to your favourite autoimmune disease charity that already exists. We don't want to take anyting away from anyone, we just want to show the world how very many of us are out there. Way too many but we still get treated like this is a 'rare disease' and get dismal medical attention most of the time, unless you're lucky and  have found a super amazing doctor like I have.

Let's change things and have some fun while doing it.

MONDAY NIGHT: It's now Monday night and the story didn't air tonight. Probably good too because I was a bit of a babbler in the not so good way. Didn't say half the stuff I wanted to but who knows how it will come out - Su-Ling is a pro and will do her best to make it OK. Will keep you posted.

BT up for PJ's

The awesome gang from City TV's Breakfast Television are coming up for PJ Day on March 1st to help us spread the word and get that much closer to finding a common thread and curing all of us autoimmunies - not just Weggies.

I'm so stoked that while doing the happy dance after I found out, I tweaked my back and have been hobbling along ever since. You know, I use to be tougher than that. I could do so much and not feel a thing, but now I jump once from joy and pay for ever after. It's OK though, this kind of pain I'll take.

PJ Day will become a global hit. It's crappy but more and more people are getting sick, and it seems like you really want to do something about it when you or someone you love and watch suffering gets whacked by the autoimmune stick. Apparently there's a whole lot of hitting, so we will all join together one day and change this shitty situation, and our kids wont worry about having to deal with the crap and take toxic drugs that ravage your body in order to stop our immune system from doing the same.

Watch out AI Disease, here we come.

Get your PJ's shined up

Back from an inspiring trip through China and now rearing to go for PJ Day.

Along with PJ Day I heard something today on Quirks and Quarks and now know where I would like to channel any money we raise for Autoimmune Disease. My body usually tells me which path is the right one and which is the wrong... the one of very few times I didn't listen to my gut, I ended up becoming a Weggie, ever since then I follow my gut, and this comment has taken on a whole new meaning.

Quirks and Quarks interview with Dr. Jayne Danska

and here's the poster for the upcoming PJ Day... plans are moving along. (click on the image to see a larger version)

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.