She’s a comin’

Happy New Year to all…. may this be the year that FTCT hits the tipping point and all of the sudden everyone knows about autoimmune disease and has the will to do something to fix this endemic yet seemingly secret problem…

Pajama Day 2014 is coming, and it’s coming fast. Get your jammies shined up, grab a stick of Juicy Fruit and get ready to stir the pot. This year Pajama Day will take place on Friday, February 28, but I have a sneaky suspicion that it will flow over into the weekend as well.

If you want to talk about it, have any ideas or just want to share, send me an email at findthecommonthread at yahoo dot ca.

See you in our PJ’s.


Back in the swing of things

I haven’t posted for quite a while. Frankly, I’ve thought a lot about the BIG PICTURE with what we’re trying to achieve, and have done some things towards that end, however I haven’t been keeping it ‘logged’ on this Blog.

Summer is now over and my little girl is back at school. I have to say that I am so grateful to be with her on this journey of growing up, because there were a few moments back there – you know ‘back there’ the big one – where I thought this wouldn’t happen. Mind you the moments were few and very short lived because I’m a stubborn old cow, and once I set my mind to it, there was no way that my little girl wasn’t going to remember her momma. That was the key objective at that time.  She knows me know – maybe her perception of what/who I am is a bit overinflated, but she knows me. We still need some substantial amount of time together so that she can know me as an adult, not just a kid who gets lots of love, but also lots of rules from me.  I picked her up from school yesterday and she told me that they were watching a video about Terry Fox, and how she thinks I’m like him.  I told her that this is not even close to being the case – I can’t see myself taking on as much as that amazing dude. I do hope to affect change in a similar capacity, but it will not be by running across Canada. She came back with – “well he got really sick and almost died, then when he didn’t he wanted to change things for the better and let people know about cancer, and he did, but then he died, which I hope doesn’t happen to you for a long time.” It’s interesting to see how she sees this whole situation, because I see myself as a schmo who has a big mouth and a rather tenacious (read stubborn) personality, and I’ve taken these two ‘cons’ and tried to change them into ‘pros’. Only time will tell.

I keep sending emails and letters and rational, logical pleas (not the sappy, kneeling type) to many businesses, organizations and celebrities who might understand the problem first hand and be more open the idea that we can do something to change it.  I am not getting a lot in return, but I will keep trying because my continued attempts, emphasize my commitment to this idea. I am sure many of my hand written letters end up in the garbage either unread or read by some young assistant who hasn’t stopped to think about the fact that they in fact know numerous people who are affected by autoimmune, but with a lucky and healthy youth comes self centeredness (not the bad kind, but just the “I can’t see much suffering or existence past my own situation” kind) – and I only say that because I was there. My family was sick all around me and I didn’t really think of what they’re experiencing, how it relates to the big picture and the fact that it can affect me and my kids one day. I had to get sick to see it.  The universe gives us what we need, not only to be more empathetic but also to push ourselves and find the best within.

I just took a fantastic Art of Living Course last weekend which focused on THE BREATH amongst other important things. It was a wonderful experience which I shared with my mom and 7 other beautiful women. There was a lot of letting go of negative emotions, toxicity in the body (of which I happen to have lots due to my meds) and some antiquated belief systems. It was quite the timing too because prior to the course I kept getting calls from my GP who wanted to follow up on a Respiratory Function Test I took last month. I’ve known this myself, but the test got the docs on my case because my Oxygen saturation levels are severely low (high 80’s low 90’s) and there was a slight marked improvement when I puffed a dilator. So I went to the doc – as per his request where he wanted me to go on a steroid puffer – this was right after the course and all the ancient, sacred knowledge I downloaded from the course, so I asked him to hold off for 40 days until I practice the Sudarshan Kryia, as promised to my teacher and my friend Seema. I will get another respiratory test and see if there is any marked improvement post 40 days. I really am not interested in adding any more drugs to the cocktail. I need to be eliminating rather than adding.  I will post the outcome of this little single person experiment.

In the meantime I promise to do my very very best at what I do for this project. There are times when I can’t do much, but there are times when I can give’er, as we say in Canada, and I hope that one day we can breathe a sigh of relief when autoimmune is no longer in our vernacular. I am inspired by Shri Shri and his organization and the changes they are making globally. I am not even in the same category of existence as him, but I am sure inspired by him and the best I can do is give it my all.

We won $10K with Telus Give Where We Live Contest

Hey hey hey, let the money snowball start rolling. This money will go towards the dream of having something concrete ‘on the ground’ for those who already have autoimmune diseases. We will create an Autoimmune Disease Center of Excellence with a bunch of different partners and the ”Center” will essentially be the town of Jasper. It’s such a healing place already where all of the locals get it, now we’ll show the rest of the world. Also by bringing all the specialists and peripheral practitioners together we might start collaborating into looking for a commonality for autoimmune disease as a whole. We will find the cure. I know it with all my heart.

Telus gave out ten prizes of $10,000 each across Canada. It’s great to be validated that what we are doing is the right thing to do. We will make this money go so far!

Here’s the link to the ad that’s being broadcast nationally:

Thanks to everyone who made this possible, and we’re only just starting friends. We will rock the world on it’s axis by what we are about to accomplish.

Peace, love and eternal heatlh to all of you.

Canada Day Parade

Well, last year while watching the Canada Day Parade in my town, I thought “why aren’t we marching in PJ’s?” so I registered us in with my sister and off we went with some friends….

I had another idea for next year as I was getting things organized in my mind for this year… stay tuned (he he)

The night ended with awe and wonder – for the opportunities ahead!

I’ve gone into serious spoon deficit – living in overdraft. It’ll take a while to get back into the swing of things, but I’ll keep on keeping on…. doing my very best.


Peace y’all.

One little bit at a time

Just an update to let you know what I’m working on now.

I have spoken with the administrator of our local hospital and we’re going to work together on making our hospital an Autoimmune Disease Center of Excellence. What does that mean?

It means that we will create clinics for various autoimmune diseases where specialists in medicine and care can see patients, but we will also bring in psychologists to help patients and family in dealing with living with a potentially deadly chronic illness, and help with living a relatively normal life while dealing with severe treatments, and constant physical limitations. We will also bring in financial advisers to help with the aftermath of getting struck and dealing with the acute stage of autoimmune disease. Many people are pulled from the work force in the prime of their earning years and in severe cases find themselves personally bankrupt. Specialists can assist with getting a handle on the finances again and eliminating that element from the list of stressors that can cause a flare. We would also like to have Pediatric specialists and bring together young people who have to deal with severe medication treatments, being on steroids and chemotheraphy and living a normal childhood while dealing with a debilitating disease. We will work with  other partners to create opportunities for patients and families to meet and share experiences and gain strength from being part of a larger community.

As well as this we are going to work on getting an internet link-up with China where we can do daily Tai Chi sessions with people in China who are masters at being part of the solution in their wellbeing. We can learn so much from each other as patients, as advocates, as doctors and as human beings inhabiting the same planet.

Will keep you posted as developments occur.

I promise.

The future to come

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.

Pred Blues

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.


I tried meditating and it worked

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.


Getting a little serious

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 ( 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.

Evening Show at Jasper Activity Centre (Grade Ones singing “What I Am” by (John and son Will breakdancing for PJ Day) (Grade 8-9 Girls Dance Program and Grade Ones mosh pit in front of stage) (some dancing, some fashion show action, and some more dancing – all in PJ’s to raise awareness for autoimmune disease) (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.–one-pajama-at-a-time


The Day is Now Upon us

photoWell, 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 ( 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: Thanks to 2J and  his crew for this video!!!

There are so many thanks that need to go out and I will start them on here and add as more come or my chemo brain remembers those I’ve missed...
Here goes in no particular order…
My amazing family, my awesome husband (totally awesome husband) my over the top supportive sister and friends that are beyond words
Jasper Park Lodge and the gang that raised so much money for us from last year
Hugh Lecky at Tekarra Colour Lab
City TV and Breakfast Television
The Gang at Mountain Park Lodges
Marmot Basin
Jasper Tourism
Travel Alberta
Snow Dome Coffee Bar
Video Stop
Eleanor Bye
Jasper Haus – Jasper Park Lodge
Nicole Koebel and the Dance Crew
Ashley, Raichle and the gang
The Jasper Elementary School Grade One class and Mrs. Morgan and Mrs. Koss
The Randal Scott Band
Mayor Richard Ireland
Greg Van Tighem and the Jasper Fire Station
Municipality of Jasper
Elizabeth Prinz
Steph Sophocleus and River Stone Yoga
Tracy Garneau and Dave McDowell
Su Young-Lesley
Bearberry Photo
Lucia’s Gems and Gifts
Willow Tree Gifts
Tea Leaf Boutique
Totem Sports Shop
Our new society board including, Sue Cesco, Mayor Richard Ireland, Steph Sophocleus, Hana Dankov-Bye
Jasper Inn
Rocky Mountain Roasters
Global TV and Su-Ling Goh
CTV Morning News
Marriane Garrah
Dr. Diane Dick
Dr. Elaine Yacyshyn
… and the entire town of Jasper without whom none of this would be happening this year.
All of you are beyond description and an inspiration for me to keep trucking on.