A wee update on the fun to come

Hello friends and supporters of the fun and frolic that is autoimmune disease awareness raising. Here are a few updates on the goings on. Click here for Schedule of Events: https://findthecommonthread.com/pj-day-2013-march-1st/

photoWe are getting some great media interest and it makes me so happy that the people with the power to transport our message of hope and determination are giving us the time to make that message heard. On Thursday Feb 21, I’m doing a live interview with Dr. Diane Dike PhD from Colorado, and maybe we can get some of our friends in the US to join us in their pajamas (you can listen here: http://www.blogtalkradio.com/dr-diane-dike/2013/02/21/eliminating-autoimmunity-together–one-pajama-at-a-time.) There are so many of us out there, remember one in five, and if we all decide to be brave (not like it hasn’t happened before) and just wear our PJ’s out in public, people will notice. If we alone wear them, people will notice. But if we wear them along with our families and friends, imagine the ripple we’ll cause. That ripple will be nothing compared to the game changing wave once we learn that a common thread to autoimmunity has been discovered and we’re moments away from a cure. Complete and total game changer.

On Feb 27th I’m going to do a little interview with CTV Morning News to get that group of people excited about the possibility of being involved in something fun that could also be the spark that leads to salvation for millions.

Then it’s The Day – March 1st. We have City TV’s Breakfast Television coming up for the morning fun times, and then the day will be filled with various PJ events and topped off with our evening show at the Activity Center.

We need as many people as our little town can muster out in their PJ’s for the filming of BT. It’s early folks. I know this is a tough one for Jasper, but it’s only because this town is so absolutely amazing at jumping in when it counts that we have the success we have in only one year. It is now confirmed that BT will be shooting from the driveway from the Firehall (the new one.) We will have a Pancake Breakfast going on site to raise money for the MS Society and make getting out of bed and stumbling to the fire hall that much easier. The show will be filled with locals doing all sorts of PJ things. It will revolve around a discussion about autoimmune disease… not this one or that one, but autoimmune disease as a whole. This is what makes this day special. We can drop our special disease titles and be one for a day since all of us are dealing with the same essential problem, an immune system gone haywire.

Breakfast TV will start at 5:30 am – yup AM – but the early birds can get there even a few minutes earlier, and it will go until 9:00 amThere will be Yoga, Dance, Singing, the Randal Scott Band, Chef Elizabeth Prinz, and other surprises.

Our evening show will take place at the Activity Center and start at 7:30pm. Admission is free but you can donate some money to help us pay for the incidentals. We are also starting some other projects that will raise money but we need money to start making money, so every bit helps. If you want to raise money and don’t want to give it to us, give it to your favourite charity that already supports autoimmune disease. We just want this whole insane ride to stop, so whoever can stop it first, give’er.

We will post again with more details on the day’s events, so stay tuned. Let the games begin, and giant thanks for all the people, groups, businesses and organizations who are supporting us. The list is long and I will be writing a separate page with the thank yous but you are making me personally feel very proud to be part of this community and this race, and showing me that all the ugly stuff we see on the news can be easily overshadowed with kindness and love.

IF YOU’RE NEW HERE AND WANT TO JOIN THE PJ REVOLUTION, PLEASE TAKE PICTURES OF YOUR PJ FROLIC AND SEND THEM TO US AFTER THE FACT. LET US KNOW WHO YOU ARE AND WHERE THE PHOTO IS TAKEN.  THE MORE WE HAVE THE STRONGER OUR VOICE IS NEXT TIME AROUND. LET’S SEE THAT TIPPING POINT TOGETHER, ALL DRESSED IN OUR PAJAMAS.

Let the Games Begin

Bags of PJ’s – check.T-shirt’s ordered – check.
City TV – Breakfast Television  – check.
Accommodation for crew – check. (Thanks Mountain Park Lodges)
Fiber Line cost for BT – check. (Thanks City TV, Marmot, Jasper Tourism and Travel Alberta)
Fitzhugh Interview – check.
Global Interview with Su-Ling Goh – check. (http://www.globaltvedmonton.com/video/pajama+day/video.html?v=2334980511)
Variety Show rough outline – check.
PJ suppliers for fashion show on board – check.
Location for BT Remote shoot – still in progress (but will be a check soon)
Donation Boxes around town – working on them (look for them soon – heart shaped boxes – and help out so we can pull this all of without going into our own pockets)
Getting more people on board – check and constant work in progress (thanks to all who are spreading the word)

The more of us that wear PJ’s the more likely the world will stop and pay attention to a disease group that has been generally ignored as a whole up until now.

Stay tuned to this page and we will start posting event start times and when and where we will need to see all your PJ clad bodies for the cameras. Thanks to you all for your continued support and making this dream a reality. Big props go out to you all.

OK, listen up…

This is where it all comes together in your mind – it did in mine.

I was saying to a friend that the more people that “played along” the better it is, and she asked me what ‘playing along’ entails. I thought this is a valid question because it’s not been articulated. I’m articulating it, and once it’s articulated, it makes a tonne of sense.

We are all in this together. Whether you have MS, RA, Lupus, Vasculitis, Liver Disease, Endometriosis, Eczema, Raynaud’s Syndrome, Restless legs syndrome, Wegener’s Granulomatosis, narcolepsy or over a hundred others, we all have autoimmune disease. So what this PJ Day mission entails is that whoever you’re cheering for, for whatever personal reason you have, put on your PJ’s this March 1st and go about your business. If you’re a group that puts on fundraisers, go ahead and do one in your PJ’s and send the money to your favourite autoimmune disease charity organization. If you like to party, get a PJ Party going. If you like to run, go out for a run in your PJ’s. In Jasper we have a pretty sweet ski area, so there will definitely be some PJ skiing ( a PJ Ski Race in fact.)

Right here, right now, the mission is to raise awareness of how many of us are truly out there. There are lots. Lots that are affected directly but then there are our families and friends, our bosses, and our neighbours… autoimmunity affects our society more than we can imagine. Why? Because up to now we’ve all been busy trying to solve the problems of our own diseases and missing the forest for the trees. We are part of something much bigger, much much bigger. And if we all rock our PJ’s on March 1st regardless of who we are rooting for ( in fact we’re glad you’re rooting for someone,) we can show them how very many of us are out there.

The more knowledge there is out there about autoimmunity and the insane numbers, the more likely people will get diagnosed sooner in their search for answers and eliminate life threatening situations. This will only happen as autoimmunity becomes regarded as a disease that affects 20% of the population and rising instead of a rarity.

So you don’t have to be in Jasper to make a difference. This is just where it got birthed and has a lot of relatives in town. Our big statements will be made when everyone affected, directly and indirectly, will wear their PJ’s in solidarity to show government and research and the medical profession that our invisible diseases are not invisible any more. Invisible no more.

They’re clad in their softest, comfiest jammies.

pjwebbanner

PJ Day number 2…

If you missed out on the fun last year, here’s your chance to play and change the world for the better this year.

Here is a link to the day’s events https://findthecommonthread.com/pj-day-2013-march-1st/ and if you’re coming here from Jasper Junior Olympics page, here’s what you can do: On your way to the hill you can swing by and show your team spirit – IN YOUR PJ’S (you can wear them over your warm up’s) at the New Fire Hall between 5:30am and 9:00am for the cameras and tell your friends to watch for you on TV. This is all live and they’d like to see as many PJ’s there as possible, and what a way to get on TV with your team mates and your families and show your support for this fun but important event while getting your mugs on TV. We also have a flash-mob which we will do about 8:12am-ish and you can find links to choreography on the schedule of events page link above.

City TV from Edmonton is coming up and filming Breakfast Television Live, in their PJ’s from Jasper. How awesome and fortuitous for spreading the word.

You’ll  have bragging rights for being part of this event which will soon take over North America and you can tell your friends you were part of it the first couple of years when it was still a baby, and the reason it’s as awesome as it is, is because you were there pushing it along when it was getting started. Thanks to all for your amazing support.

PJ Day 2013 poster

It’s happening again – 2nd PJ Day is coming fast

Hello friends, family, supporters and those who are just curious,

I’m fully in the throws of organizing our second annual Pajama Day to Find the Common Thread of Autoimmunity. Mark your calendars – March 1st 2013.

It’s exciting. Very very exciting. I’m getting support from directions that I didn’t expect, and I’m trying to get support from people and organizations that I think would benefit in one way or another from getting in on the ground floor. Even if they don’t see it now.

I know that not only will this become an event that people around the globe will be aware of and participate in, but also that we will see a cure for autoimmune disease in our lifetimes. I know that we’re standing on the frontier and this ‘game changer’ will affect all of us in positive ways. I hope with all my hope that my daughter will not have to deal with the ravages of an autoimmune disease, and will do everything in my power to make this hope a reality – not just for my daughter but for all daughters and sons.

We have the foundation of our PJ Day last year, which was so successful that it surprised not only me but my fellow Jasperites. This year I hope to make it bigger. Next year I’d love to have a conference to bring together patients, researchers, doctors and complimentary health care practitioners for a dialogue that will move us closer to finding a common thread and thus a cure.

According to AARDA (www.aarda.org) “research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed”. Along with raising awareness this is one of our goals here. I have been reading quite a bit and have run into some pioneering work that is looking at all autoimmune disease as a whole which is beyond promising as it is looking at avenues not yet in the mainstream of scientific research. I am very excited to potentially have a destination for the funds we raise, but all in good time.

Right now it’s time to start pulling your old PJ’s from those closets (men I’m talking to you, all of you who have told me that “I don’t own any PJ’s” ) and start thinking about how you can help move this along, because whether you yourself have an autoimmune disease or not doesn’t matter. If we’re successful (when we’re successful) this will reach much farther than just curing AI disease “Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients” (aarda.org) as well as their families, their work places, our health care system and our economy. The quality of life across the board will benefit from this single find.

Stay tuned for information on various events here in Jasper and abroad.

goodnewsbadnews

Peekaboo – here I am…

Hello friends.

I have to apologize for my long absence. I have been dealing with some health issues and they in turn have created some mental and behavioral issues. I have caught myself behaving badly and completely out of character and snapping at people who are trying to help me. I’m currently weaning off the pred and had no idea, none whatsoever, how tricky and tough that would be. I wrongly assumed that as you get closer to normal levels things should get better, but they don’t, not when it comes to prednisone. Below 7mg, this has been one of the tougher things I’ve done in recent history. I’m about to go from 5.5 to 5 this week and apparently this is the magic spot where your adrenals start to kick in. Most of you reading this probably already know what I’m talking about but for those that don’t I’m laying it out on the line. It sucks.

OK, enough wa wa wa… Here’s where I’m heading with this gig.

I’m in the early planning phase in my brain (and just a disclaimer, this is exactly how it worked out with PJ Day) and just letting it gel and take on a life of it’s own. My idea is to create something that is not available in Canada. A mechanism by which young people with autoimmune disease can get together, get information, have some fun and feel empowered. There is events like this in the US, however in Canada no such thing. I was talking to a friend whose daughter has JRA (Juvenile Rheumatoid Arthritis) and she and another parent talked to the Arthritis Association in Canada and were told there is nothing for teens, and there is no plan to do anything in the near future (even though these parents are raising a bunch of money for the Association, there isn’t much in the form of direct tangible help for their kids.) So I’ll try and make something happen here in Jasper. I can’t think of a better place to allow a bunch of kids to just get away from the reality of chemotherapy and steroids, and rules that are different from all of their friends.

I would like to have this be the first tangible goal with our group. We can work on getting up some doctors, some physiotherapists, some social workers, some sports therapists and perhaps even some great entertainment for them. They can meet each other and create life-long connections with people going through the same ordeal. There is so many options for things to do in this amazing National Park, so I feel this would be a great coup if it comes together.

I will work on this and keep you posted.

And again, my sincere apologies to anyone I might have wronged in the past few months. I promise to do better in the future.

Peace.

The low after the buzz

I’ve been conspicuously absent well, pretty much since PJ Day, but there are a couple of valid reasons for this absence.

1. The picture on the last post is so crazy powerful that I didn’t want to mess that up with another post. What a day February 29th was. It will never leave my memory and I am so thrilled to have been a part of it.

2. I’m weaning off my prednisone and am at that point right now where I am feeling like I’ve been hit by a truck – from first thing in the morning to the last thing before bed. It’s thrown a bit of a kink into my plans and has thrown me for a loop both physically and psychologically. But I wont whine about that here, that’s for another blog (www.weggiesunite.blogspot.com) as here is where we gather to change the world, not to whine about the meds, or the diseases. 😉

I’ve been thinking about the next steps. We have a whole year (well, 11 months) until the next PJ Day, but in the meantime stuff has to happen to move this forward and make positive changes. I have a few ideas in mind that are still gelling and working themselves out on their own (similar to what happened before the PJ Day) and I will put a few out right now. How they will materialize will come to me later but it seems that once it’s out in the ether it becomes reality.

1. Create a Non Profit Organization for Canada that will propel this cause forward. Working on it.

2. See if there is a possibility for implementing a screen to help doctors and patients get to the root of an autoimmune problem / diagnosis faster and avoid making the patient feel like a hypochondriac and following a protocol that is available to all doctors, not just rheumatologist. In other words create a series of blood screen protocols that would work gradually from the most common to the least common autoimmune diseases that any doctor could go through to eliminate and pinpoint the nature of a problem – rather than guessing their way through finding a disease that could be so rare that it’s completely off the radar screen.

3. One thing that is happening with the medical system due to its overburdened nature and lack of doctors is that a trend is creeping in where doctor’s offices are going as far as having signs in their offices that say ‘One symptom per visit’ – this is true and for someone trying to get a diagnosis for a systemic disease it’s an impossible situation. My thought was that we all have to wait at the doctor’s office. What if there’s a questionnaire that you fill in before you go in that alerts the doctor to what’s really going on in your body thus empowering them to make a quicker and more effective diagnosis. Most people get flustered and end up forgetting to let the doctor know some important information at their visits, so this would kill several birds with one stone.

I have a very wonderful friend who’s been on the team that implemented a leading edge advancement in our provincial medical system, that has been a godsend for me personally and after reading the hair-raising experiences of other Weggies and trying to get their info from doctor to doctor, I feel very lucky to be living in Alberta because of this particular advancement – Netcare. She doesn’t know I want to pick her brain yet, but I’ll do it and see what she thinks about my ideas and how to go about getting the ball rolling.

So there, the wonderful picture from PJ Day is getting buried down the page now, but that’s the price of moving forward. Thank you to all my wonderful friends for the continued support and I keep repeating myself, but I truly think we can make huge changes for the better, not only around our homes but around the world.

The video, pics and write-up of PJ Day and the Evening Fashion/Dance Show

PJ's in the Tonquin.

Thanks to everyone who played, supported, strutted and sponsored PJ Day. This would never have happened to the scale it did had it not been started in Jasper. Did you hear that world? It all started here in Jasper and when you see it all over the world in a couple of years you can say, “hey, I know where this started, I saw the pictures” or you can say ” I was there in my PJ’s”. Next year will be our second year and the people that come on board can also brag about being on the leading edge of a movement that will give voices to the silent sufferers and will be the first little step towards helping millions of people get their lives back, thus allowing millions more with other ailments get the medical attention they need because we’ve freed up the resources we need from the medical world to survive.

Below are the video links of the evening and links to the photos and the articles in Jasper after the event. I will be making a photo book of the entire day’s events soon, but here’s a sampling of the wonderful energy that was the first ever ever ever PJ Day and Evening for Autoimmune Disease Awareness.

1. Introduction by moi followed by the Dance 15 Class from Jasper High:
http://www.youtube.com/watch?v=aeY9yvIykNI&list=UUH3ybfOcg2OL-04beERLlSg&index=4&feature=plcp

2. A dance by Nicole and Alexandra:
http://www.youtube.com/watch?v=gWmNjAf9bkc&list=UUH3ybfOcg2OL-04beERLlSg&index=3&feature=plcp

3. The Fashion Show. Thanks to Bearberry, Bombshell, Freewheel, Lucias, Ransom, and Tea Leaf for supplying the wonderful PJ’s.
http://www.youtube.com/watch?v=E86o79_g4Y4&list=UUH3ybfOcg2OL-04beERLlSg&index=6&feature=plcp

4. The Dance 9 Jasper Dance Program Girls.
http://www.youtube.com/watch?v=Jx5yaDBLsy4&list=UUH3ybfOcg2OL-04beERLlSg&index=7&feature=plcp

5. Last Dance by the Dance 15 Jasper Dance Class.
http://www.youtube.com/watch?v=KMo8ZMtRoD8&list=UUH3ybfOcg2OL-04beERLlSg&index=5&feature=plcp

6. Final Bow and Thank You
http://www.youtube.com/watch?v=LQvjrN0htqU&list=UUH3ybfOcg2OL-04beERLlSg&index=2&feature=plcp

Thanks to you all for everything and showing me that what I believe, the fact that there is more good than bad on this planet and we can all do something to make things better, is true.

Here are a couple of things from our local newspaper after the event:

http://www.fitzhugh.ca/editorial/6052-an-overwhelming-if-not-surprising-success

and

PJ Day success an overwhelming experience

Also some pictures from the day in our amazing town, where if you weren’t wearing PJ’s  you were odd man/woman out. Here’s to next year when this can become a global phenomenon.

http://s1250.photobucket.com/albums/hh533/findthecommonthread/?track=share_email_album_view_click

I will try and put them all together in a nice book that anyone can buy (not from me – i.e. I won’t be profiteering from this at all) but that’ll take a bit as I’m like the millions I’m trying to be a voice for – a sick person on chemo with limited energy reserves. You should have seen me before though, I was a machine – ha ha ha, those were the good ole days.

Well wasn’t that a wonderful time…

What an amazing day with amazing people. Our first ever PJ Day for Autoimmune Disease was a screaming success. I spent all day in perpetual goosebumps and on the verge of tears because of the support and enthusiasm that I witnessed from my town, my neighbours,  my friends, my family.

There are pictures strewn about in several place and there are more to come. I also have video that I will need to edit and will post soon. I just need to lay low for a couple of days as I’m certain I used up my energy quota for the entire month in one day. It was well worth it though because already some of the objectives are materializing. People are talking about autoimmune disease. We’re sharing stories and seeing commonalities that wouldn’t be coming out if we weren’t talking. People that are dealing with issues are suddenly realizing that thier issues are AI related. People who have been dealing with stuff in their own homes are now talking about it with others in the same boat.  These discussions are so overdue. I was just talking about this with someone that I feel so strong in my gut that this will lead us to great places. I haven’t felt so certain about anything else – other than when I said ‘I DO’ on that magic day twelve years ago.

Next year this will be huge and we will start raising money. We will have a Canadian Non Profit for this cause and can really do something tangible towards our ultimate goal to find the common thread.

Here are some links to pictures that are up already. Thanks to all of the photographers, all of the volunteers. all of the models, all of the dancers, all of the organizers of the various events, and all those who came out and supported by putting on their jammies and either playing or watching or just sending us the good vibes that everyone felt all day. As Tony M put it early on in the day – Downtown Jasper is like Dr. Seuss right now.

http://www.flickr.com/photos/77507641@N03/ – Thanks Nicole.

http://s1250.photobucket.com/albums/hh533/findthecommonthread/?start=0 – Thanks everyone

There are also photos on the Facebook group – go to Facebook and look for the group FIND THE COMMON THREAD.

As more becomes available I will add links and updates.

It’s heeee-re

No more sleeps.

Congratulations!
Today is our day.
We’re  off to great places!
We’re off and away!

Have fun in your PJ’s today and when you’ve had all your funnin’ and you haven’t forgotten to do all your picture snappin’ and videoin’,
put them all in www.photobucket.com
Username: findthecommonthread
Password: findthecommonthread

Please only drop stuff into there, I’ll remove things so that we don’t accidentally erase someone else’s pictures. The funny thing is that it will probably be me that messes things up due to chemo brain, lack of sleep, or some other awesome excuse I can come up with.

Have a blast today friends, and let this be our day where WE can do something significant to change things for the better.