Monday, May 19, 2014

Off again, on again

I've resurrected the book project we all started a few years back but it has morphed into something that I feel I need to do anyways, so it will be killing two birds with one stone.

I am writing my story and the other stories will be part of the the story I'm writing. They will get inserted into the spot of my story where this popped up on the timeline of my personal experience. If you'd like to contribute your story to the mix please feel free to do so. The instructions can be found under the "Book" tab above and you can find me on Facebook and contact me that way if you'd like.

I've gotten a few new ones and I'm thrilled that we can make this go further, reach more people and hopefully make a positive difference somewhere along the way.

Panic not! I do have an editor already working on my ramblings. They will be less disjointed than they are here :)

Wednesday, November 27, 2013

Noteworthy moment on the road to normality

It's been a while but I just had noteworthy moment and had to share with people on the scary end of this ride. The steps toward that normality, that seems so elusive on some days, are small and sparse,  but they do come. Once I get one little element of my old life back I get the zango to push forward... and each achievement is much more special now in something that was perhaps taken for granted in my pre-Weggie life.

I've managed to shed enough pred pounds and am one step closer to 'normal'.

Today I put my Wedding Ring back on my finger after a three year hiatus.

Sunday, March 3, 2013

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:

Thursday, February 21, 2013

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:

Saturday, February 9, 2013

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.

Sunday, February 3, 2013

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.

Saturday, January 19, 2013

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)