Find The Common Thread

I haven’t forgotten about our goal. I promise. I’m just not posting the cool little twists and turns this journey is taking.

I have started working on a kid’s book ‘Out Of The Moon Disease’ and will keep you posted on the forward progress.

Also have been talking to  some awesome guys who would like to be our corporate sponsors and move forward in the search for the common thread alongside us. This is fantastic and exciting and I’m thrilled.

We are about to have our first official meeting for our newly formed Society/Non Profit and we will move forward in leaps and bounds.

I’m glad I got this disease. I know, crazy, hey? But in a strange way it’s kinda true. It’s bringing my life in such interesting new neighbourhoods I would have never entered before, willingly. It’s very surreal sort of experience when you surrender yourself to the forces of the universe to take you where you need to be, and do what you need to do, and work towards goals and objectives you never knew existed let alone needed to be addressed. It’s cool too to see people see this gaping hole and reassure you that you’re not going crazy, that there is indeed something terribly wrong and they see that we can do something to change it for the better, together.

I live a blessed life and I am lucky and grateful for the opportunities I have to change the course ever so slightly towards better health for all. All of which would be impossible without the help and support of so many.

On a similar but slightly different note: We have signed up for a float in our Canada Day Parade in Jasper, The Walking Barely Alive, Pajama Walkers. So if you’re from Jasper and want to play along, get ready to participate in the parade.

Hello friends and followers.

I’m sorry we haven’t been in touch much lately, but those of you on the drugs we like to take to stay alive know the pain in weaning pred. I’m there right now. Trying to get enough strength to push through the day, but I continue to scheme and plan and work on getting the word out and increasing awareness to a point where there will be a will to change the status quo.

I still get riled up when I see news stories that could be talking about autoimmune disease and raise that ignorance out of the tar pools that it’s stuck in. Yesterday for instance I watched a story on the news about the chemo so many of us know so well – cyclophosphamide – and how it was watered down at some pharmacy and the people it affects. They mention the usual suspects that we all know about, the few cancers that use it, but nothing about the number of autoimmune patients that have to take that wretched drug, and take chemo for life. (side note: cyclophosphamide (CTX) is known to cause bladder cancer, so here we are taking a drug for a year to keep our immune system suppressed but there is a high probability of contracting bladder cancer if you don’t flush gallons of water through your body daily to avoid having the metabolized by-products of  CTX linger in your bladder and lead to a whole new set of problems)

Until I got sick with Wegener’s, I had no idea that chemo is used to treat autoimmune disease. Not a clue. It was like a slap in the face when they told me the treatment. It is time that everyone knows. It is time to make a difference. I’m putting this chart here again just in case you haven’t seen it before. I’m not trying to take anything away from any other research, I just want those researching various autoimmune diseases to start sharing and pooling their knowledge and already existing research. We have been so segregated from each other that I believe the answer is just below the surface and it wouldn’t need a whole lot of scratching to find it. Once found we can not only help us, but millions of others suffering a bunch of other diseases and our sad sad health care system. It really is a win win, and it blows me away that people aren’t all over this.

Together we can make an insanely huge positive change for our world. But we have to work together.

So for the first time in my life I think I actually got into the magical world behind the chatter. I tried meditating the other day and man did it pay off in heaps.

The whole plan of how to make the next PJ Day be as big as I imagine it came to me. With it comes greater awareness, greater power to influence research decisions, greater ability to fund-raise and the true possibility of changing things for the better by addressing this big gaping hole known as autoimmune disease. I will need a few divine intervention moments in the early stages, but I have faith. When these plans come to fruition, you will hear about it. People all over will know about autoimmune disease, and will be crawling over each other to create a better event to support the cause.

#weonePJday2014 will be a hashtag that will rock the world. We will be trending. Mark my words.

Now off to finish off the plan design.
Plan now finished (March 21th, 2013) If you’re curious see the link below.

Package

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 (http://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: http://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.