The low after the buzz

Posted: April 2, 2012 in Uncategorized

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.

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.

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

Posted: February 29, 2012 in Uncategorized

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.

 

Four more sleeps

Posted: February 25, 2012 in Uncategorized

Zoweee. I can’t speak for what’s happening outside of Jasper, but I am hearing a few things (we’ll find out after the 29th – send images and video links to findthecommonthread@yahoo.ca ) but I can certainly speak for what’s happening in Jasper. I must start off by saying that I live in the coolest, most supportive and generous community I can imagine, it’s not just neighbours, it’s friends …. and I’m surrounded by the most amazing, loving and supportive family in the world. I’m so grateful to be amongst such individuals. So here’s what’s happening in Jasper:

Events:

PJ Ski

11am –  Race at Marmot Basin. FREE.

This is a fun course set on Lower Drom that will be open to all abilities. You don’t have to be a racer to enjoy it. Brian will set the course and anyone interested in volunteering to help with set up can contact me at findthecommonthread@yahoo.ca or go to Facebook and post me a message in the FIND THE COMMON THREAD group. There will be a post race wrap up at The Whistle Stop Pub where the staff will also be in PJ’s and there will be special drinks where the proceeds will go towards setting up a Non Profit Organization. Take pictures and send them after the event. We’ll have a photographer around, but the more the merrier. Show us how your day in PJ’s was. Send them to: findthecommonthread@yahoo.ca (kinda like navigating your way through the medical system and feeling a little exposed in your PJ’s all the time)

PJ Run

Noon  Meet at Totem Pole. FREE.

If you don’t feel like racing on your skis, you can go for a lunchtime run with Tracy Garneau. Don’t let the name scare you though because this will be an easy run around town and on the town trail. Wear your PJ’s and pose for a shot or two for our photo gallery. (kinda like after you get diagnosed and having to go through some stuff that feels uncomfortable and you push yourself further than you thought you could go…)

PJ Yoga

1:30pm –  with Stephanie Sophocleous. Yoga Studio – Second floor Old Firehall.      FREE.

After all of that running and racing and sliding and having fun, it’s time to stretch it out. You don’t have to change clothes, stay in your PJ’s and go for a session of inner peace and muscle strengthening. (kinda like when you’re on the mend and have spent so much energy on just trying to survive that suddenly you realize that it’s time to heal and strengthen that which has been assaulted)

PJ DF CX SKI – PJ Dog Friendly Cross Country Ski

1:30pm – Wabasso Campground Meet – Su Young Lesley – FREE

If you’re still looking for something outdoors to do in your PJ’s here’s an opportunity. The track will be set between now and then so it’ll be a fun PJ glidefest. Don’t forget to take some photos.

PJ Noodle Night

5:00 – 7:00       627 Patricia Street.      FREE.

Join us for a free dinner and wear your pajamas to support the one in five people affected by autoimmune disease. Brought to you by the Community Outreach Services. Fill your tummies and then head over to the Fashion/Dance show at the Activity Centre. (anyone on prednisone knows that this one is near and dear to the heart – as much of it as possible)

PJ Dance and Fashion Show

7:15 Doors 7:30 Start .      FREE

Come and check out the Jasper High School Dance 15 class, the grade 9 Jasper Dance Program, and some brave models put on a PJ show for you. There will be some T-shirts for sale for no more than $10 each – and they are all different. Come out and support your friends and neighbours and raise a hand for the one in five. The actual show won’t be longer than 40 minutes, but it should be great. (our coming out of the shadows party)

PJ Party – Whistle Stop Pub

From the end of the ski day onwards. The Whistle StopDrink specials and great footage.

Come hang out and have some drinks in your PJ’s. This is where the skiers from today’s event will come by to see themselves on the big screen as they navigate the gates in their Pajamas.

PJ Party – The D’ed Dog

Throughout the day. Wear your PJ’s and get Happy Hour Prices.

A good place to hang out and watch the goings on all around with everyone in their most comfy clothes – their PJ’s.

PJ Dance Party

Anytime after the Fashion Show – THC (The Horseshoe Club)  FREE

Come and dance the night away to finish off a great day and go to bed wasted from the day’s activities. If you did everything there was to do today, at this point of the evening (after THC) you should be feeling like many people with autoimmune disease feel when they wake up in the morning.

Businesses who will be wearing their PJ’s on February 29th (in no particular order, and if I’ve missed you please drop me a line or comment at the end of this post)
  • Seton General Hospital
  • Jasper Inn Best Western
  • Marmot Basin Ski Area
  • TD Bank
  • Whistler’s Hotel
  • Wild Mountain North Face Store
  • Freewheel Cycle
  • Parks Canada non front line staff
  • Friends of Jasper National Park
  • Summit Massage
  • Wild Orchid
  • La Fiesta
  • Super A Food Store
  • EK Bye Professional Group
  • Robinson’s Food Store
  • Jasper Senior’s Lodge (they will also have a PJ BBQ for lunch)

the biggest giant hug to you all for the unreal support. Here’s to a fantastic February 29th.

Some of the media so far:

Edmonton Journal - http://blogs.edmontonjournal.com/2012/02/24/ski-in-your-pajamas/ (the picture in this article was taken a couple of weeks before diagnosis, you can see that I’m in a ton of pain and not very happy about life at this point)

Edmonton Global - http://www.globaltvedmonton.com/video/index.html?v=skaO6DY99UOrbyo_urPZid_1QCe6H5MG#themorningnews/video

Jasper Fitzhugh Paper - http://www.fitzhugh.ca/news/5984-dress-for-bed-on-feb-29

The Eagle Radio – and I’ll go on air on February 29th to let a few more know – just in case they’re standing in front of their wardrobe wondering what to wear, I can help them with the decision and save the day.

One Week Notice

Posted: February 22, 2012 in Uncategorized

Yikes, time is travelling at warp speed these days. Being at a funky stage in my pred wean doesn’t help things much. Energy is a hot commodity, but our coming out day is drawing nearer and nearer.

I have to say that I’m so completely and totally stoked about how things are unfolding in our little town. I can’t speak for other places – as I’m not there – but man oh man is it ever a cool thing happening in our town of 4500 (but don’t let that fool you because it’s a tourist town and there’s always way more than 4,500 people around).

I just went on the boob tube to talk about this, and just to make sure that you all know, I’m not making up the stats for this, I’m getting them from AARDA - the American version of what I’d love to see in Canada, and will do all in my power for that to happen. AARDA stands for American Autoimmune Related Disease Association and it was upon stumbling on their site that I had this epiphany to get this going. I know they’re doing a ton to do the same thing, but I thought I’d approach it from a different angle. Anyways all of the stats and data that I quote on here if from their numerous studies, and there is a ton of reference material on the links page. I would be horrified at the thought that I might be putting false information out there and I assure you that it comes from reliable sources (although not Canadian due to our lack of anything of the sort). If you want to find out more, go to www.aarda.org.

Another thing that I noticed is how noticeably absent we are from this site for our biggest federal funding provider http://www.cihr-irsc.gc.ca/e/193.html . So think about this when Pajama Day is over and you’re wondering what you can do to keep the ball rolling. There are a couple of things… One, do a little research into your geneology and see if there is autoimmunity in your family (just because there isn’t doesn’t mean your free and clear either, so it’s good to play safe) and if there is, you can take some simple precautions to avoid being exposed to environmental triggers. I don’t thin I would have had the H1N1 shot had I been aware of the genetic connections and H1N1′s stated possibility of contracting Vasculitis, and AI disease which I now have. Another thing you can do is to remind your government representative that Autoimmunity is a debilitating disease and there is very little federal money going towards research. They need to hear from us more.

Our event is only one week away, and I have some PJ’s for those that don’t and would like something cheap to put on over their ski pants and running gear.

Thanks you all for being part of this and we will change things for the better. I know it with all my knowing.

One step closer to reality

Posted: February 15, 2012 in Uncategorized

I went and spoke with a most amazing group of teenagers this week at the Jasper Junior/Senior High School. It was a little nerve wracking but also inspiring to think that these are the people who will change the world… and hopefully I said something at some point that might have inspired even one student to use their powerful, world changing voice to stand up for this cause. I know there is a lot of social consciousness, imagination and tech saavy in that school, so I sit here and hope with all hope that something jaw dropping will come from that direction.

I have made some posters and the logos are now available on here if you would like to do something in your corner of the world and need some supporting material. You can click on the Media tab above and have at’er (www.findthecommonthread.com/media ).

I really hope that if you are doing something or a part of a PJ event, you’ll take pictures and /or video and send them this way so that we can show the world what we’ve been up to and what they missed – but can always get on board next year. You can send images and links to videos to findthecommonthread@yahoo.ca .

I look forward to our day in the sun. I will be going on air this Saturday in Edmonton to toot the horn, so we may hopefully get some joiners from that direction.

All the best my friends, and keep it going.