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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.

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.

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.

I was thinking about this yesterday as seems to be the norm these days, and figured we’re so far behind in research that maybe it will take a very minimal change in status quo to get things going in the right direction… here’s a few circle graphs to illustrate my point (I grasp concepts better from a visual perspective than when reading a bunch of numbers stuffed inside a paragraph)

So if you look at the circle graphs on the left, you will see how many of us are affected (we’re blue, Cancer is red, and Heart Disease is green) on the first graph relative to the other two. The second graph shows the cost from each disease group n the medical system. Again, we’re up there (half of Heart Disease but far more than Cancer) and in the last graph you’ll see how much money goes towards research. I’m thinking that we’re not getting the proportional piece of pie.  If you want to do something, send a note to your Health Minister and ask him what they’re doing about Autoimmune Diseases and Disorders. I’ve learned that I need to push and be my own best advocate these last two years and it seems like we have to do the same thing here.  These stats are from http://www.aarda.org and are from 2003, but they’re the best info I have found so far. That in itself is a tell tale sign.

So back to the start of the post. What I was thinking as I was out there using up all of my spoons in one go, was what if the answer is a very simple one that would just require the right minds/specialists to get together and pool their research and wouldn’t cost much at all. What if that’s all it takes. The right push at the right time with the right people. If we added a little more to the blue piece of pie on the bottom pie and that magic moment happened, we could eliminate the entire blue pieces of pie in the upper two pies and open them up for red, green and all the other colours in the rainbow.

So there’s something else that you can advocate for. Cross specialty research. It’s kinda like cross training for academics. By raising awareness maybe we can push towards this as a group. Use your connections, your creative genius, your voice. It took me getting sick and fighting for my life to get my voice. Use yours now! You have the power to change the world, don’t wait for something horrible to happen before  you realize the power you have within.

I am not one of those proprietary types who wants to keep control of everything. I’m not in this for the glory. I’m in it to do all that I can to move us closer to finding a cure for autoimmunity. Oooops, I used the word ‘cure’ that is trademarked by the Susan G. Komen foundation  – millions of donated dollars for cancer research might come my way in lawyer costs to sue me. But I digress.  The reason I want to push as many people out there who are suffering from an autoimmune disease and either don’t see much happening in terms of research in their diseases or else they see the possibly and power we can have by joining forces and pushing for autoimmune disease awareness and research, that reason is that I want a cure / common thread found before my daughter grows up and potentially has to deal with an autoimmune disease herself. Genetic predisposition and environmental trigger. That’s the lowest common denominator we have so far, and it doesn’t bode well for our kids. Let’s dig deeper.

What I really want to say with this post is that I don’t care about branding or about using the term find the common thread. If you are interested in helping, have some great ideas, have some friends with just the right skill set – do it, get on board, do something creative and funky in your community. If you have access to media – go for it. If you wanna do a calendar – go for it. If you want to get on a soapbox and preach in Hyde Park, go for it. I am personally blown away at the positive response in my little community. We have a bunch of stuff on the go, and I’d love to be able to help all around the world, but I have a limited number of spoons, if you know what I mean. I have a family, a job, a home to take care of and a not so healthy body. I’m doing a lot of this from my computer and you can too. Have fun brainstorming, go for coffee with some friends and just throw a bunch of ideas up in the air – and see what sticks. This is our little revolution. This is a super cool opportunity where a bunch of sick people can propel something to make a positive global change. I am still sick. I keep hoping to get back to my old normal, but I think it’ll be a tougher road than I originally thought, but my new normal is way cooler on the inside. I like the new me that has emerged because of this disease. It has toughened me up inside and I think that we can all probably say the same thing. So a bunch of weak on the physical side, but tougher than nails on the inside people can push and push and push until the world hears us and starts paying attention to this group of diseases that has thus far gone pretty much unrecognized.

YOU be the instrument of change. The power within you is greater than you can imagine.

Just heard that term yesterday when I was doing a guest lecture at a Medical Anthropology class at the University of Alberta. So here’s the deal. When you are faced with a long term chronic disease, or have had your normal life taken away by a crippling event people have basically two directions to go. One is you can withdraw from society and close yourself up and go ‘within’ to deal with the new condition and change in life. The other direction is to turn it outward and do things that are beyond what you would have done or did in your previous healthy life. I was described as a super crip, and it was in my opinion an overstated description but I think that all of you are. We have a mission to do great things and I believe with all my heart that we can accomplish this mission and that our accomplishment is dependent on us working together. So gather together super crips and lets change the world.

The pharmaceutical companies that’s who. I am blown away as I watch some evening TV that almost every second ad is for drugs for some sort of autoimmune disorder or disease. We are a captive audience with an endless need for their expensive drugs. Not pred of course because it’s gone past the deadline and has become a generic drug. Not so for the others. I was just getting infused today with a drug that for the two treatments I get costs almost $10,000. I was talking to a wonderful lady who has a friend who HAS to take a medicine that has a half-life of 2 minutes and needs to be administered intravenously so she has a permanent pic line and the drug sits on a fanny pack – her drug that keeps her going costs $6,000 per month. I was also talking about a mutual friend who’s wife has an autoimmune disease and can’t get drugs because they can’t afford them and don’t have insurance. Her husband has to watch his wife in pain and sit there knowing he is hog tied by Big Pharma and can’t do anything about it. With other diseases the expensive drugs are administered in a relatively short period of time with the hopes of eliminating the disease. With autoimmunity, which is often if not always chronic, the drugs are administered to maintain a quality of life and possible remission, but the disease is with you for ever in most cases and you are a slave to the therapy.

Still don’t believe me? Check this out – http://www.marketsandmarkets.com/Market-Reports/autoimmune-treatment-market-research-27.html

Here’s a little bit on Humira: http://articles.latimes.com/2011/jun/02/business/la-fi-humira-20110602

Here’s a report from AARDA ( I really like that group ) http://www.aarda.org/pdf/cbad.pdf

I haven’t asked anyone for any money. That’s not our goal this year. Our goal is awareness. We just want you to help us spread the word and put on your jammies for one day (it’s an extra day this year, make it count and do something worthwhile – what have you got to lose).

Stand up and speak for those who are disfigured by awful drugs and awful diseases and can’t stand up and speak for themselves because they’re in hospitals or hiding out in their homes because their friends don’t recognize them or they’re so immune suppressed they are afraid of the most common germs, germs that can put them in ICU’s (that’s Intensive Care Units for those of you who’ve been lucky enough to never know that term.)

Autoimmune disease can be mild and treatable with as much as a change in diet or they can be devastating and life threatening and require toxic chemo and high doses of steroids (both have their own very horrible side effects that can also lead to complications ending in an untimely demise.) The bad thing is that once you have one you are more susceptible to others and they can come at you from nowhere and can be deadly. There is also a genetic predisposition so if you have one that’s mild, your child might be open to one that is not so mild. My mom has fibromyalgia, my dad has lupus, my sister has psoriatic arthritis and I have Wegener’s Granulomatosis. I was knocking on death’s doorstep not that long ago, but he wasn’t home that day and I’m here knocking on yours now. Will you answer the door or treat me like the Electrolux salesman of days gone by? Please look inside your heart and make the right decision.

If you want to go fast, go alone. If you want to go far, go together. (I saw this in a store today and it gave me goosebumps). Let’s go all the way and push for a cure/common thread for all autoimmune diseases and disorders.

We are here! We are here! We are here! We are here!

AUTOIMMUNE DISEASE FACT SHEET

Autoimmune Disease…is a major health problem.
• The National Institutes of Health (NIH estimates up to 23.5 million Americans suffer from autoimmune disease and that the prevalence is rising.
• Researchers have identified 80-100 different autoimmune diseases and suspect at least 40 additional diseases of having an autoimmune basis. These diseases are chronic and can be life-threatening.
• Autoimmune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years. of age.
• A close genetic relationship exists among autoimmune disease, explaining clustering in individuals and families as well as a common pathway of disease.
• Commonly used immunosuppressant treatments lead to devastating long-term side effects.
• The Institute of Medicine reports that the US is behind other countries in research into immune system self recognition, the process involved in autoimmune disease.
• Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients.

…faces critical obstacles in diagnosis and treatment.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed.

…offers surprising statistical comparisons with other disease groups.
• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).
• NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
• The NIH Autoimmune Diseases Research Plan states; “Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery.”
• According to the Department of Health and Human Services’ Office of Women’s Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women’s Health Information Center.

Source: www.aarda.org