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Wow! What a fantastic day we had on PJ Day. What a community! What amazing friends!

Below you will find some links to the show from Breakfast Television and all the fun we had during PJ Day, but I want to stress that this is not something for just having fun and getting together in or PJ’s. We’re in our PJ’s for a reason.

Why are we in our PJ’s on PJ Day? We’re in our PJ’s because autoimmunity is a nasty disease. We’re not lazy. We’re not just tired and have decided to stay in bed. Many of us are fighting to stay alive. Many have no energy because our bodies are waging war on us from the inside, and sometimes there is such a limited supply of energy, a shower seems like an insurmountable effort. Symptoms wax and wane – if you’re lucky, but there are so many that are not that lucky and can be stuck in ‘acute’ state for weeks, months or years. Autoimmunity is not a pretty picture. It sucks frankly. It also sucks because the medical profession can do very little to help us get out of the hole. For many, if not most of the diseases on the list (https://findthecommonthread.com/list-of-ai-diseases-and-disorders/) there is no cure. The only thing we can do is treat symptoms, and suppress the immune system by giving the patient nasty drugs like chemotherapy – sometimes (as is the case with me) for life. Chemo is not fun. It renders the user very vulnerable to the everyday bugs that are floating in every enclosed environment we experience. I have lost three fantastic – FANTASTIC – people from my life in the last short while to infections that most people would have been able to fight off but they couldn’t because of the treatment they’re on for Wegener’s Granulomatosis (my flavour of autoimmunity.)  This is wrong. This is so very very wrong, and we need to do something about it. We need to change things, and I know that the person who comes up with a cure for autoimmunity will be up for a Nobel Prize. This will change things like nothing else in the last 100 years of medicine.

What is autoimmunity?
Well, you’ve seen above the list of autoimmune diseases, and what they all have in common is that our immune system has gone haywire. Its job in a normal situation is to distinguish between the self and the non-self and attack the latter. That would be bacteria, virus, parasites… anything in the body that you didn’t originally come with. In autoimmunity it attacks the ‘self’. What is different between the different autoimmune diseases is where within the body this erroneous attack is occurring. MS (Multiple Sclerosis) is when the immune system attacks the myelin sheath, RA (Rheumatoid Arthritis) is when the immune system attacks joints, Vasculitis is an attack on blood vessels, Eczema is an attack on skin cells, and on and on and on it goes. What a lot of people don’t understand is that a large percentage of these diseases also work in a systemic way, attacking the whole system – which is why it is so hard to get a diagnosis in the early stages. Symptoms tend to be transient and variable, so by the time you get to the doctor for the thing that’s been bugging you, it is no longer bugging you and now you have a different issue, which will be different tomorrow, or the next day. This is why I find it absolutely mind boggling that in this day and age when we are seeing an increase in autoimmune disease, and it is hitting people in younger age groups than ever before (and too often killing them because medical profession isn’t expecting to see it in such young patients) we have doctor’s offices that have signs that read “One symptom per visit.” I don’t know of anything that gets my blood boiling more than that. These are doctors who are not interested in helping people. These are the guys who got in the game for the wrong reason, and if you see that sign, get out of that office as fast as your feet will carry you.

Autoimmunity is serious, serious business. Those who are trapped in its web suffer greatly. Their families suffer even more. Our society suffers because of autoimmunity, yet we never hear it mentioned as a group anywhere. When we see the common thread and thus the cure for autoimmunity, we will not only help those directly affected by it, but also our health care system. We will free up so much money for other diseases. When we figure out how to modulate the immune system we can help cancer patients (who are on the other side of an immune system gone haywire, in their case the immune system is not attacking the non-self as it is supposed to,) we will help transplant patients, we will help AIDS patients, and infectious disease patients. Together we can change things so fundamentally that we will be living in a much better world from a healthcare perspective.

Now back to some PJ FUN. Getting the word out.

Thanks again BT for coming to Jasper and helping us spread the word.

http://video.citytv.com/video/detail/2197740806001.000000/live-at-jasper-1/

http://video.citytv.com/video/detail/2197900728001.000000/live-at-jasper-2/

http://video.citytv.com/video/detail/2197900722001.000000/live-at-jasper-3/

http://video.citytv.com/video/detail/2196840385001.000000/marmot-basin-1/

http://video.citytv.com/video/detail/2196840379001.000000/marmot-basin-2/

http://video.citytv.com/video/detail/2196840390001.000000/cold-fire-creek-dogsledding-tours/

http://video.citytv.com/video/detail/2196840387001.000000/the-maligne-canyon-icewalk/

Evening Show at Jasper Activity Centre

https://www.youtube.com/watch?v=8yhAkA7TVk8 (Grade Ones singing “What I Am” by will.i.am)

https://www.youtube.com/watch?v=TptJv-8RWaQ (John and son Will breakdancing for PJ Day)

https://www.youtube.com/watch?v=KCoPSQ8HGdA (Grade 8-9 Girls Dance Program and Grade Ones mosh pit in front of stage)

https://www.youtube.com/watch?v=r9zonGEMAtQ (some dancing, some fashion show action, and some more dancing – all in PJ’s to raise awareness for autoimmune disease)

http://youtu.be/pvAO4ALBi0A (why we are doing this and the thank yous for our town for supporting)

and here is the crazy blog radio interview I did before the PJ Day event to get the word out in the United States.
http://www.blogtalkradio.com/dr-diane-dike/2013/02/21/eliminating-autoimmunity-together–one-pajama-at-a-time

Well, here we are Second Annual PJ Day to Raise Awareness for Autoimmune Disease. And it started off with a BANG!

City TV’s Breakfast Television Edmonton started us off bright and early (5:30am to be precise) and our awesome town turned up with bells and PJ’s on. I’m so overwhelmed and it’s only 10:21am right now. As soon as this is online we will share the link . Now to go out and enjoy some of the PJ events around town – or take some pictures at least.

If you have pictures you want to upload you can do it either on Facebook into the FindTheCommonThread group, or you can go to Photobucket and go to findthecommonthread2013 page (http://s1309.beta.photobucket.com/user/findthecommonthread2013/library/)and use the code ‘oneinfive’ to get access and drop some photos.

We will keep you posted as the day progresses, keep an eye on Facebook, and here to see the goings on:

http://www.youtube.com/watch?v=pgZxUMNu7b8&feature=youtu.be Thanks to 2J and  his crew for this video!!!

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/

We 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.

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.

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.

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.

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.

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.

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.

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.