My new plans - I'm sharing my crazy ideas so I can be held accountable

[marta]

Hi gang,

I was just reading an old PM from Sam and was about to reply to her but then decided to share it with you all and this way I will have to do as much as I can and not jam out.

As you know, I have decided that the only way we'll see a cure for Wegener's is not by researching WG as funding is not there, but looking for the common thread of all autoimmune disease, which affects one in five people, so this stat alone will help create more interest. Last year I organized the first ever Pajama Day to raise awareness for autoimmune disease. Here's a link to what went down The video, pics and write-up of PJ Day and the Evening Fashion/Dance Show « Find The Common Thread (http://findthecommonthread.com/2012/03/12/the-video-of-the-evening-fashiondance-show/) This year I have bigger plans. They're so big in fact that Brian doesn't think I'm giving myself enough time but I'm gonna truck on forward and see what happens.

So I'm sharing my plans with you in case you want to jump on board and do something in your corner of the world. Also once it's out there in the ether, it's out there, it can only move forward.

So this year I will have PJ Day on March 1 - the first day of Autoimmune Disease Awareness Month. I want however to have a couple days of a conference or symposium where one day we can have medical pros from various specialties talk to patients, to each other - start a conversation going in Canada. Plus Jasper is a wonderful place to have something like this as it's also good for the soul to be amongst this spectacular nature. The second day I would like to bring in complimentary/alternative practitioners to help people get a better perspective and who knows, it might help many. I've already contacted some. Then on the third day it's PJ Day, it's a Friday and you'll be able to do all sorts of stuff in your PJ's and I'd like to have it end in a big dinner where I will try and get some of the people presenting join us and I'll try and get some other celebs to come out, that way we can sell the seats and hopefully make a few bucks for the cause.

I also have a brilliant idea on how to make a ton of money. I just need someone who is a genius with creating web sites (this one would be very complicated, but totally worth it). Once I get someone working on it, I'll explain in further detail - I'm just searching for that person right now, the one who can make my dream become reality.

There! Now I've said it, so it has to happen.

On a completely different note, my doc is speaking to our provincial government today to push for them to approve RTX for treating vasculitis and that way people who can't pay will have it covered. My doc is awesome and I love her. She so stands up for us.

[Lightwarrior]

I love you so much Marta. I'll start thinking

[mishb]

Wow Marta, how do/will you find the time :thumbsup:

Thankyou for being an amazing person and for being passionate in the cause.

Keep us updated with your thoughts and I too will start the thinking process.......... as much as one can with a pred head

[drz]

Since RTX has been recognized as an approved treatment by many other agencies and insurance companies, it ought to be an easy sell to get it approved. I bet the company that makes it could give you a lot of supportive evidence for such a move. Glad to hear about new ideas you are brewing up.

[Natalie]

wow your surely on a mission Marta !! sounds grand ! good on you and hope it all comes together :)

[Debbie C]

This may said bad but I don't mean it in a bad way ...but it's a shame we haven't heard of any well known person...singer,moviestar or someone high in power with this desease,that would certainly help the cause.But I wouldn't wish this on my worst enemy...but theres got to be someone out there,we just haven't heard about them yet

[Lightwarrior]

This may said bad but I don't mean it in a bad way ...but it's a shame we haven't heard of any well known person...singer,moviestar or someone high in power with this desease,that would certainly help the cause.But I wouldn't wish this on my worst enemy...but theres got to be someone out there,we just haven't heard about them yet

You are not being bad, I get it.....it would be nice to have a well known spokesperson.

[annekat]

I agree, there's got to be someone well-known out there who has Wegener's.....

[annekat]

Marta, I'm so looking forward to hearing more about your great plans and ideas! There must be someone on here who knows a lot about website design or can point you in the direction of a suitable prospect.

[carriej22]

I believe Nick Cannon (Mariah Carey's husband) has wegeners. He has an autoimmune disease but he hasn't said which one. However he has been in the hospital due to kidney issues and long problems, and had to give up his radio show.

[annekat]

I believe Nick Cannon (Mariah Carey's husband) has wegeners. He has an autoimmune disease but he hasn't said which one. However he has been in the hospital due to kidney issues and long problems, and had to give up his radio show.Wow, wouldn't that be interesting if he does?

[annekat]

Nick Cannon appears on Good Morning America to discuss recent diagnosis - College News (http://www.collegenews.com/article/nick_cannon_appears_on_good_morning_america_to_dis cuss_recent_diagnosis)
According to the research I just did, Nick Cannon has lupus nephritis.... it would still be interesting to find a celeb with Wegener's, but his having a rare autoimmune disease is significant in itself...

[KathyB]

Hats off to you, Marta! While I don't know a celebrity with the disease, remember that Tim Tebow (former QB of the Florida Gators and now in the pros with the NY Jets) got national attention when he recognized a young fan (girl) who has WG.

Wegener's Disease: Tim Tebow makes a dream come true with a Bible and friendship - National autoimmune disease | Examiner.com (http://www.examiner.com/article/wegener-s-disease-tim-tebow-makes-a-dream-come-true-with-a-bible-and-friendship)

I mentioned it in a post, too. http://www.wegeners-granulomatosis.com/forum/general-wg-chat/2254-tim-tebow-mentions-wegeners-post-game-interview.html

Perhaps he would be interested??

KB

[marta]

Hey Guys,

You are all amazing. I thank you for your kind words and support.

I will do my best to do us proud. I have a few local celebs in mind and will try for some less local, but what turns turns. I'm putting the emphasis on autoimmune disease, and there are certainly lots of celebs with one of the 140 diseases that fall under that umbrella, so the fishing pond becomes bigger as we move further out of our itty bitty little puddle.

You guys all rock and are my inspiration. We were dealt one of the crappier hands of cards but it makes us tougher and more persistent - the world wont know what hit them when we come out of our Weggie closet.

[aewaustin]

Marta I just think you are one of the most amazing women I know. You are a total inspiration! You go girl!!!

[Lightwarrior]

Marta I just think you are one of the most amazing women I know. You are a total inspiration! You go girl!!!

Ditto.....

[marta]

Just a quick update...

I have backed out of the conference plans for this year because getting our society all legal and in the books is taking longer than I anticipated, however PJ Day is on. Here's a poster that I'm going to spread around town for next week, and I already have a TV interview booked and working on a few more.... well I can't seem to add pictures on this forum so just go to my blog and you'll see it there Weggies Unite (http://www.weggiesunite.blogspot.com)

But the real reason I wanted to post something on here is because of an interview I heard today that actually made me cry as I was listening to the radio... this is what Al and I were talking about before he passed, this is it. This is the road to finding a cure for us all that has never been explored and makes so much sense. I now know where any money raised is going because I think this is where we will see our lives come back to our old lives from and where our kids will be spared the rollercoaster ride we're on...

Audio (http://www.cbc.ca/video/news/audioplayer.html?clipid=2327082301)

Here goes. Our lives change every second, but some seconds are more significant than other seconds... this is one of the most significant seconds I have had since diagnosis.

[pberggren1]

This makes sense seeing that the gut is a major part of the immune system.

[ArlaMo]

The report you linked was fascinating, Marta. It will be very interesting to follow this research. Thanks very much for sharing!

[Debbie C]

Wow Marta that was very interesting. I went to my obgyn for the first time in a couple years about a month ago and had my hormones checked.And he said my testostrone level should be between 40-60 and mine was -4 !! He had a compound co. make up a special lotion that are in syringes and I am supposed to rub 1mg on my leg a day. I haven't done so yet because I have been having gut issues. When I had my upper endoscopy done ,I have a small hiata hernia and a small part of Barretts esphogitis. I wonder if my low level is causing my stomach issues ?? I have been a little under the weather lately so I didn't try any thing new until I got other issues sorted out,but maybe I'll start it now. I may also email that segment to my dr. at the Cleveland Clinic.

[marta]

Just sneaking in some forum time for a quickie update.

I am very happy to announce that I have a TV crew of 15 or so coming up to Jasper to film their Breakfast Television show (3.5 hours) in their PJ's and the whole show will be around autoimmune disease awareness.
Bang! I was so happy when they called me with the OK, that I did a crazy happy dance and tweaked my back - ha ha ha hah.

I have a few other pokers in the fire, but I'm over the moon about this one. Over the TOP!

I will keep you updated on what's going down.

Marta

[drz]

Great news! Congrats! :hug3:

[Debbie C]

That's awesome ,Marta:thumbsup:

[marta]

OK, here's the first of the media coverage I'm getting on this... you guys are my buds, my first buds in this world of Wegener's and autoimmunity, so you better all be wearing PJ's March 1st and take some pics and send them my way. The more I have from all over the globe the more power we have for the next events getting media coverage and various sponsorship.

Al (Rest in Peace) and I spoke at length about how looking for a cure for autoimmunity is the way to go if we want to see a cure for Wegener's. I actually had a reading (Angel reading) and she said that Al was there in the room and backing me up all the way. She described him in a gray sleeveless sweater talking about all the great music on the other side and he said he can go to any concert he wants to... it was Al for sure. I can tell I'm getting help because I got that crew to do a whole show on autoimmunity, I just managed to score them free hotel rooms (13 of them for three nights - a tough task in a small town that's full for a Junior Olympics event that weekend) and everything seems to be falling into place. I'm definitely getting some sort of help that's way beyond my capabilities.

Here's a link to the Health segment on a different TV station than the one that's coming up: Pajama day - News Hour - Videos | Global Edmonton (http://www.globaltvedmonton.com/video/pajama+day/video.html?v=2334980511)
...and I look forward to some PJ photos.

We can't complain about not being able to see a cure in our future if we don't do anything to make that happen, and in this case it involves nothing more than keeping your PJ's on that day, and maybe talking some of your friends into doing the same and getting some photos and sending them my way. It's a small effort for a very big goal, but it's when we combine all of our small efforts that it becomes something worthwhile.

Thanks y'all, and know that I am making it my life's mission to do what I can so that our kids never have to suffer with this stupidity known as Wegener's or autoimmunity.

Love you all.
marta

[annekat]

Marta, you are so amazing! I've made friends with a good friend of Al's, whose name is Judith. She had talked to him at length about his Wegener's, about the forum and the people on it, and about music and recording. She has been following the forum as a guest and I know she will be thrilled to read about your "Angel reading" with Al. It thrilled me, too, of course!

[pberggren1]

I miss Al. I looked forward to his messages every day. He helped me a lot with my hearing. We talked a lot about electronics and music in general. He was so nice to chat with.

[drz]

I miss Al. I looked forward to his messages every day. He helped me a lot with my hearing. We talked a lot about electronics and music in general. He was so nice to chat with.

He could articulate a lot of my concerns and issues in a much more cogent manner and also provide the scientific basis for such concerns. He also had a nice positive and very kind helpful attitude and seemed willing to try help others even when he wasn't feeling good. I wonder if he knew Jack since they had a lot in common in their temperament. But we need to help Marta get back to her PJ day on this thread.

[pberggren1]

It's time for me to get out of my PJs and go kick some butt at pool.

[marta]

Thanks Anne. You go Phil! Do a Pool night in PJ's. I know you're respected in that community so you should convince your friends to wear PJ's to the bar and play pool. I think you'd make quite a statement... and don't forget to take some pictures.

On a different note... I just heard about Light! Pardon my language but holy ****. Brian mentioned it yesterday while we were having dinner company and it rattled me. I'm still in a bit of shock. I'm so pissed off at this disease and now there are three amazing people that I know personally and have made great connections to that are gone... there are about 10 others that I knew but not as well that have passed since I got diagnosed.

A little bit of Light in all of us keeps getting snuffed by WG and I will do whatever it takes to eliminate this disease from our consciousness. I know I have support from the 'other side' and I know we can do it. This is total bull. We (not just Weggies) keep accepting the line we're fed by doctors and researchers, that this is our lot in life and we have to take toxic crap that exposes us to other deadly things and there's nothing else to do but live with it. I will NOT ACCEPT. No way!!!!! There is an answer and it's waiting for us, and unless we look, we won't find it. I will stir the pot until we get someone to seriously look, and from today on, I will stir harder, faster and with all the vigor I have.

Silent no more. Invisible no more. Sick no more. Vulnerable no more. Passive no more!!!!!!!!

Lightwarrior, Al, Jack, and the countless others, I feel your strength and it pushes me forward. I promise!

[drz]

Thanks Marta. I really do think Phil and his buddies playing pool would make for a great news story on PJ day!

[marta]

I just organized a live half an hour show on a Colorado radio station and am dedicating it to Jack, Al, and Christi (Lightwarrior).
All three of them have helped me so much and I feel are helping me still. We will prevail. Together.

[pberggren1]

Good idea Marta. I will run it by the guys down at the hall and see what they think. Maybe even something like if you knock a ball off the table then you have to donate a loonie or toonie to the VF.

I know many Weggies on facebook and many others from a previous group before facebook existed. I think I have seen around 30 pass away.

[Psyborg]

Good idea Marta. I will run it by the guys down at the hall and see what they think. Maybe even something like if you knock a ball off the table then you have to donate a loonie or toonie to the VF.

I know many Weggies on facebook and many others from a previous group before facebook existed. I think I have seen around 30 pass away.

Marta thanks for being tough. I feel guilty...I'm relatively lightly affected, but I've not been able to do much to help things along. Feels like life runs over what you might like to do some times. Get too busy with work and stuff and forget some important things...this included.

[annekat]

Now that I'm having a flare and don't have a Wegs specialist, I feel more vulnerable, especially since the news about Lightwarrior. I want to listen to Sangye and do something about the doctor thing. And, together, pushing the "powers that be" toward finding a common thread in AI diseases, plus doing some of the research ourselves as to diet, and how it might affect our illnesses, is certainly an exciting prospect and it would be nice if we could all do our part. Some are better able at any given time to do so than others. I'm just ruminating, really, at the moment.... but inspiring each other to be proactive seems to be the key here.

On March 1st, I don't know that I will be in any social situation. I may be in my PJs all day anyway! But I sure like the idea of Phil and his pool buddies in their PJs! The key there is having fun somewhere will others will notice, and maybe local news coverage will take place. I'm racking my brain to think of some venue for an event in my community. Perhaps there is already something going on in observance of AI Diseases Awareness Day (or whatever it's called.)

I make pottery and other ceramic objects and would like to create something to sell for Vasculitis, or AI diseases, awareness and research. It could be sold in Marta's Weggie Store, at my pottery booth, or whatever. This idea is just germinating right now..... and it would likely take some time to come to fruition, but any encouragement is welcome!

[marta]

OK, just to be clear. I'm not posting this to make anyone feel guilty (Bob:wink1:) Please please please don't feel guilty. I do stuff when I have energy. When I don't, I don't. I know life is busy. I gots me a six year old. But they forced me to take early retirement on medical grounds, and I need to keep my brain occupied. This does it for me. I'm more of a connector, and an instigator. I get others to do the work - the real heavy duty lifting work. I will be running my big pred ars around on March 1st but other than that it's just connecting people and blabbing - as you know I'm really good at the blabbing part.

Anne, I'm sorry that your flaring. That totally sucks. Don't even think about this. Get yourself healthy and then you can do something next year. It's not like we'll find the cure this year (although that would totally rock). Maybe you can do a pottery session with your pottery friends all in your PJ's. That's all that needs to happen. People doing what they normally do at work, or at play with their friends, but in PJ's. Take some pictures... that's our true ammunition to get more media attention next year and then they can promote it and help us spread the word. If we get pics from all over the globe of people getting together and doing 'their thing' in their PJ's then media will grab on to that and make it exponentially bigger for us. I see it happening already from last year's event. And my way of getting it done here is along with getting people on board to wear their PJ's at work, I also asked friends to do some PJ events that they already normally do... ski race (from Brian who works at the ski area and can pull one off with his eyes closed), yoga (from a friend who is an instructor and already has yoga classes daily, they just made that one a PJ version of the regular,) run (from a friend who is an ultra runner and goes out anyways, this time she did it in PJ's and invited people along)...the only thing that was out of the ordinary was the show we did last year. This year it will be the same, a slightly more elaborate show (because people now want to join in) and we have the TV crew coming up to do their live breakfast TV thing (that's getting a whole new set of people on board that were in the periphery last year.) So it's bigger but only because last year was such a success with very minimal work.

It doesn't matter where you live. We all have friends that have their interests and have seen what we've gone through. It is a very small ask to get them to do their normal thing in their PJ's and there's power in numbers... so if they can get friends of theirs to join in, it becomes a super fun event for all involved, and they learn something in the process. The AARDA site is very enlightening. It's shocking how many people go through the same crap we go through. The stats are insane too. www.aarda.org - check it out and go to the Quick Facts link - actually here it is - https://www.aarda.org/autoimmune_statistics.php.

My approach is fully the shotgun approach to try and get some coolness factor or celebrity endorsement. I'm throwing it all out there and hope that something sticks. I have a Parkour group who will do a PJ video for us.That will give it a bit of a 'rad' effect and can hopefully go viral. They're from Edmonton, but 2J (that's really the dude's name) is the only official Parkour instructor in Canada.

Whatever sticks. Don't overthink it, just have a blast. And if you're sick in your PJ's then take a picture and send it to me... it brings the message home even more.

My heart is with you guys, and together we will beat this demon down... but I think that it will only work if we work together.

Big love.
m

[drz]

Marta thanks for being tough. I feel guilty...I'm relatively lightly affected, but I've not been able to do much to help things along. Feels like life runs over what you might like to do some times. Get too busy with work and stuff and forget some important things...this included.

One thing that is fairly easy for some to do is to volunteer for any research projects on Wegs if you can make it to the closest research center. This is the one thing that is most likely to result in a break through in treatment. Helping raise awareness in general of autoimmune disorders might help increase funding for such research efforts.

[drz]

Marta:


"It takes courage to show your dreams to someone else". Erma Bombeck

You are gutsy girl. Keep sharing your dreams and plans to promote awareness of GPA and autoimmune disorders.

[annekat]

Thanks, Marta,

Now all I have to do is go to Goodwill and buy some PJ's! I don't think my sweats would look like PJs in a picture. I like the LLBean Black Watch plaid night shirts, but had to give mine to my niece because I outgrew it. Honestly, can't be sure I'll get you a PJ pic for this year, but the momentum is gathering to get involved here in some way at some time.....

My current flaring is probably no worse than anyone's and not nearly as bad as some, I'm sure. It's just an event for me because it's my "first flare" since my dx in 2011 and getting better over the last two years. I hadn't even caught a cold until late 2012 and it wasn't even a big one, though it may have helped stir up the flare. I currently can and will get things done, it's just a little harder.

Now to take a look at the AARDA link you sent.

[marta]

Anne, and anyone else who want to know why I've stopped pushing for finding a cure for WG or GPA and instead am focusing on finding a cure for all autoimmune disease... here's the article that changed my trajectory.
https://www.aarda.org/common_thread.php

I know it sounds counter-intuitive that the possibility of finding a cure are greater when you try and find a cure for more diseases rather than look for one, but just think of it this way. How many decades has science been trying to find cures for MS, RA, or any of the other 140 diseases, and all they have managed to do thus far is figure out how to keep us alive by suppressing the symptoms. This is very dangerous to us, sometimes even more so that the disease itself, as has been proven by our dear friends on the other side (who did not go because of WG but from complications due to our treatment). If we start looking holistically at autoimmunity and pool our voices and resources together governments, scientists, philanthropists who support research will pay attention and maybe money can go towards finding a solution to a problem that affects 20% of the population directly and huge percentage indirectly (family, friends, employers, medical system.... and on and on.) Huge percentage of our population is already supporting research for MS, Lupus, RA, and the biggies... there are a small percentage of people supporting Vasculitis, and the other Rare Diseases, but together we're a force to be reckoned with.

This is the reason I am pushing for this instead of looking at our problem alone. Our problem is a part of a much bigger problem, and if we can solve the bigger problem we can solve ours. The difference is that while trying to solve the bigger problem, we have the support of millions of people, not just those affected by Vasculitis.

I know I tend to ramble on and on and on... but I really feel that this is our way out. I feel it with every cell in my body.

There's great new research that is gaining ground that focuses on gut flora and autoimmunity. It's absolutely fascinating and it makes a ton of sense. This is what I'd like to support when we start raising money.
Here's an interview that when I heard it, tears just started pouring out of my face.... I really think this is the path that will take us to salvation: Audio (http://www.cbc.ca/video/news/audioplayer.html?clipid=2327082301)

Thanks for your support and encouragement and I promise to do us proud, or dye trying.

[marta]

Here's a link to the live radio interview I'm doing on February 21 for PJ Day with a Colorado radio station. It will air 10am MST and the link is below... Eliminating Autoimmunity Together - One Pajama at A Time 02/21 by Dr Diane Dike | Blog Talk Radio (http://www.blogtalkradio.com/dr-diane-dike/2013/02/21/eliminating-autoimmunity-together--one-pajama-at-a-time) . If you can't hear it live, I'll send you a link afterward. Yikes.... how to make a fool of yourself in ten easy steps. Good thing that along with my immune system, the chemo has killed my ego... ha ha ha.

[annekat]

Marta, I think it makes all the sense in the world to look at AI diseases as a whole rather than focus on just the one we have. We will get more people's attention that way and be helping more people, plus as you say, there have to be common links and threads.

The slant on things involving the gut and the flora in it is something I need to keep reading over and over in order to digest it (ha, ha). But I know there is a lot of talk about the diet/gut and various diseases already in other circles than our own. I have friends who are very interested in this stuff. I need to keep revisiting the links you send and the info I get from others in order for this all this stuff to sink in. But if society in general finally woke up and became aware of these thing, it could be a revolution!

It is fine that you ramble on (and on). There are always new people on the forum who need to see these things, and the older ones of us need to be reminded and given updates. So, just hold onto the ball and keep running!

[pberggren1]

I ran it by the pool room owner last night and he thought I was nuts.....lol. Oh well, at least I tried. He's old, like 60 or something, so very grumpy and old school.....lol.

[annekat]

Marta, I just listened to the audio from CBC about the gut flora stuff, after having looked at the text link you sent a few weeks ago. It is fascinating stuff. However, what really throws me off, and wouldn't you know it, is the involvement of testosterone! I'm not asking you to explain that to me at all, since the people doing the research don't even seem totally sure about how it all works. Just saying there is only so much my Weggie mind can try to understand at once, and I'll keep revisiting all that and keep trying! If all this could lead to a big breakthrough in understanding and treating AI diseases, wouldn't it be great!

[annekat]

I ran it by the pool room owner last night and he thought I was nuts.....lol. Oh well, at least I tried. He's old, like 60 or something, so very grumpy and old school.....lol. What, Phil? "old, like 60 or something?" 60 is the new 50, young man. Or maybe even the new 40. This guy just sounds like a curmudgeon to me. So is there actually a dress code in the pool hall? You'd be wearing shirts and pants, even if they were PJs, and you could wear shoes. Besides, have you noticed how many guys actually go around in PJ bottoms all the time? At least around here, and that's what they look like to me. They are often plaid. A couple of years ago, my beloved 1991 Chevy S-10 Blazer got totalled by a long haired guy in PJ bottoms. Which doesn't give PJs a good name, but we can change that, right?

[pberggren1]

Then I am in my teens then.....YAY.......not.....lol. He is just weird. He said he wants normality at his place....lol. PJs do look gross in public. Almost as bad as shorts and sweats. My unlcle would say: Shorts should be banned and sweats are for babies and sick people....I agree.

[annekat]

Then I am in my teens then.....YAY.......not.....lol. He is just weird. He said he wants normality at his place....lol. PJs do look gross in public. Almost as bad as shorts and sweats. My unlcle would say: Shorts should be banned and sweats are for babies and sick people....I agree. Well, it is all relative, I guess. When I was a kid, we girls could not wear jeans except as play or work clothes.... certainly not to school, not even if it snowed (other pants were OK only if it snowed). My mother grew up only wearing them for yardwork and thinking that they were mainly for farm workers or other kinds of laborers. For some reason, boys got to wear jeans to school, no problem. But men in those days did not wear jeans much, either, certainly not to work at professional white collar jobs, which now they can, many times. As long as they are clean and in good shape, with tucked in shirts and belts.

I have to agree, PJs can look gross. Especially on men, with thin fabric. I'm thinking it might be better for PJ day to be in the summer when it's warmer and people are already wearing lightweight clothes. But what's done is done. We can make it work!

[pberggren1]

Ya, the way people dress today is downright scandalous.

[annekat]

Ya, the way people dress today is downright scandalous. Oh, I don't know.... but I do see some pretty outrageous stuff at the local farmers market where I sell..... there, you see it all! Some of it really does get on my nerves a bit.

[Dirty Don]

Life changes, cultures change, people change, situations change, health changes...but I still ain't wearing no PJs to a pool hall or anywhere else!!! Go Marta! Send pics!! LOL!

[annekat]

Life changes, cultures change, people change, situations change, health changes...but I still ain't wearing no PJs to a pool hall or anywhere else!!! Go Marta! Send pics!! LOL! LOL, Don! For those of us who really don't want to wear PJs in public, there have got to be other ways we can contribute to this cause. I saw some pics on one of the links Marta posted, showing people having "walks" for AI disease research, in various cities in the US and Canada. That's another way to get the attention we need, and make some new friends along the way.... and I don't think any of them were wearing PJs!

[drz]

I ran it by the pool room owner last night and he thought I was nuts.....lol. Oh well, at least I tried. He's old, like 60 or something, so very grumpy and old school.....lol.

Did you try the approach that it might be good advertising for his pool room. Another tactic would be to just recruit a bunch of friends who come to play inappropriate dress for that day, PJs. He could throw you out but probably would accept the extra business. Other wise you pretend you're back in the 60's and have a sit in in your PJ's.

[drz]

Life changes, cultures change, people change, situations change, health changes...but I still ain't wearing no PJs to a pool hall or anywhere else!!! Go Marta! Send pics!! LOL!

How about golfing shorts to the pool hall and playing with your golf club instead of a pool cue. That would get some attention too.:biggrin1:

[marta]

Thanks for trying Phil. I think you can still go there in your PJ's regardless, and if you bring along other PJ clad people he might get some positive media attention, if he kicks you out because of it, he is surely going to get negative attention and would not be too wise if he did that, seeing how you have one of the nastier versions of the 140 diseases and spend all of your free money and time in his establishment. Besides, guaranteed he knows or has someone in his extended family with an autoimmune disease. It'll take a bit of time, but I think it will be all over sooner than I ever imagined.

Here's a link to the radio show I did this morning and dedicated it to Jack, Al and Christi. Bright angels who are with us always now instead of just on the forum.
Eliminating Autoimmunity Together - One Pajama at A Time 02/21 by Dr Diane Dike | Blog Talk Radio (http://www.blogtalkradio.com/dr-diane-dike/2013/02/21/eliminating-autoimmunity-together--one-pajama-at-a-time)

Next I have an interview on the 27th with CTV Morning News, and then the big day here on March 1st with 3.5 hours of autoimmune PJ fun.

Chat soon my buddies.

m

[carriej22]

I donno about all this.

I can rock sweatpants like NOBODIES business...lol.. I do leave the printed PJs at home.. however :)

PS... For the ladies

https://www.pajamajeans.com/

[pberggren1]

Seems like not too many are up to the PJ idea. I have to admit I am not a fan of wearing them in public.....lol.

[marta]

Sorry Phil, I must disagree, here is some proof that it was a very well received idea last year and I'll send you a link after this year's event to show you how wrong you are. I'm a little disappointed actually by your post, but not at all surprised.

findthecommonthread's Library | Photobucket (http://s1250.beta.photobucket.com/user/findthecommonthread/library/?track=share_email_album_view_click)

Probably the fact that not too many are up to it is why we have a TV station sending more than a dozen people to produce and film a 3.5 hour live show on PJ Day and autoimmunity and spending thousands and thousands of dollars to do it. But you're right, it probably is a bad idea to do something that might lead to getting us enough attention to get funding to find us a cure.


(http://s1250.beta.photobucket.com/user/findthecommonthread/library/?track=share_email_album_view_click)

[mishb]

We have done this many times to raise funds for tenpin bowling competitions.

The kids are always in to bowling in their PJ's and the adults - even though they don't wear the PJ's in public, do get changed in to them at the bowling centre and everyone has a ball.

It is impossible to do this in the environment that I work, and it is a working day, however, I think you are really onto something Marta and think that you are doing an awesome job to raise awareness.......actually, I would love to be there

[carriej22]

I don't think Phil meant any harm, Marta.

I think he's just uncomfortable wearing his PJs out of the house. Must have hello kitty on them or something.

The girls at my work thought PJ day was funny but no way would they do it. PJs have a rep of being "sloppy"; especially to my parents generation. My mother is outraged if she stops in and I'm not dressed and in PJs.

[pberggren1]

I never said your idea was not good Marta. Why are you disappointed by my post?

[marta]

Thanks Ladies.
I'm sorry for getting upset, but it made me sad because this was the forum I came to when I was in my darkest days and I got nothing but support.

I so miss Jack, and Al, and Christi and Sangye (who's not gone but not on here as much.) There was so much wisdom and kindness and compassion here when they were around. There are still fantastic people on here (please don't get me wrong) but those three/four really knew how to drive things and keep them within the realm of kindness and support and reel in any negative or ignorant tangents. They'd probably spank me right now for this post. It was a very supportive community. I'm so lucky to have stumbled on to it because the gang on here pulled me out of some dark places, and I can say, probably saved my life. The old gang that were around then have really slowed down on posting, and I'm sure that's because everyone is on the good side of living with Wegener's and going on about their business. I don't know many of you new Weggies as well because once I got enough strength I moved on to trying to do more with my newly changed life and had less time on the computer to seek and post.

Now I have energy and strength and want to do something that can benefit us all, in a much bigger way, and I find it a little sad that the place that use to give me the support is now the ONLY place that is telling me that this is a bad idea - and it's not everyone, it's mainly due to a self appointed patriarch of the forum, sorry but we have some previous issues that you're not all aware of, and I try and keep my opinions to myself, but sometimes buttons get pushed that might not seem obvious to anyone outside our special relationship. Things like making generalist statements that appear like he's talking for a big group of people to support a narrow minded opinion of how things are. I know I will regret posting this, and I hope you don't think I'm a total cow. I am usually very good, amazing actually, at getting past differences of opinion, but I have one person I just can't seem to get past, and it's coming through here.

My most sincere apologies to you all, and I promised myself and my husband that I will no longer respond to said provocateur and let myself get so upset. So now you know, and again, I'm very very sorry. I will keep on keeping on and do what I know is right and towards a good goal, and from this moment on comments from that direction will slide off me like teflon. I will hang low for a while and will let you know how things turn out after the event. I hope to be able to come on here one day and say, hey, they found it, and we can start lining up to get the pill with the gut bacteria we're all missing and we will no longer be sick... just making it up, but you know what I mean.

Peace and love to you all.

Marta

[annekat]

I donno about all this.

I can rock sweatpants like NOBODIES business...lol.. I do leave the printed PJs at home.. however :)

PS... For the ladies

https://www.pajamajeans.com/ Wow, if Pajamajeans can make my butt look like that, I'll buy them in a minute...

[marta]

Ha ha ha - you know what they say... "spandex is a privilege not a right"...

Hana (my wee one) is all about Pajamas these days and she sees the Pajama Jeans commercial on TV and runs around the house wanting PJ Jeans. It's funny.
I told her it defeats the purpose, cuz we don't want to blend in, we want to be noticed. Enough being invisible.... she's got it now.

[annekat]

Marta, for some reason, I've recently stopped getting email notifications of posts to my subscribed threads, so was unaware of your feelings on this. I just want to again offer my support and admiration of what you are doing and acknowledge that it is growing in power with each year. Hooray for you! :thumbup:

I enjoyed seeing all the photos you shared of past Pajama Days. I know some people are uncomfortable with PJs, but it is only one day a year, and I really don't see what the big deal is or why anyone would object to it, considering why it happens in the first place. There are some really cute print PJs out there and what can be the harm? It can only do good, IMO. Some of our bodies, and maybe our psyches, do not work well with PJs in public, but that is individual and not really important if enough people do participate and the numbers grow each year.

I have been following the forum for only about 2 years, but I started while Jack was still alive and Al hadn't even joined yet. When I actually started posting, Jack had passed, and Al had joined. And of course, Sangye's wonderful presence was here the whole time, and I'm glad she still joins in, even if less than before. I did get to know Lightwarrior enough to be profoundly saddened by our loss of her. So I can understand your feelings of regret that the forum has changed so much through the loss of certain members. I don't really feel that any one person is trying to take over, though.... some of us are just opinionated and outspoken and say what comes out..... and I think we already knew that, and they have the right to do that. We don't have to like everything that everyone says, and it is OK to voice objections. Yes, there are many new people here, and despite some of these tense moments from time to time, I get the feeling their impression is overall a positive one. I'm still very grateful for the presence of the forum, even as it evolves over time, which it will keep doing!

Love and peace to you.

[marta]

Thanks Anne,

I agree with every word in your post.

I speak with too much passion sometimes and my thoughts don't articulate well on the keyboard as the fire burns inside, but what you said is dead on.

Thanks.

[Jaha]

Marta,

I will be more than happy to wear my pj's that day because its my Birthday and I support your efforts. I think with your energy and talent you will be a force that will make a difference.

Jana

[pberggren1]

Thanks for answering my question Marta.....lol. Still don't know how I piss you off......a tad too sensitive perhaps?

[annekat]

Marta,

I will be more than happy to wear my pj's that day because its my Birthday and I support your efforts. I think with your energy and talent you will be a force that will make a difference.

Jana Happy Birthday in advance, Jana!

[annekat]

Phil, you are who you are, and have many excellent qualities. I think you are an integral part of the forum and don't need to change. We all rub people the wrong way once in awhile. I, for one, would hate to see you go and hope you are with us for a long time. (unless you stop being with us because your Wegs goes into permanent remission!)

[marta]

Marta,

I will be more than happy to wear my pj's that day because its my Birthday and I support your efforts. I think with your energy and talent you will be a force that will make a difference.

Jana

Hugs! Thanks.

I don't want to pressure anyone into anything they're not comfortable with.
Here is the link to the kinda cooky radio interview I did this week (Eliminating Autoimmunity Together - One Pajama at A Time 02/21 by Dr Diane Dike | Blog Talk Radio (http://www.blogtalkradio.com/dr-diane-dike/2013/02/21/eliminating-autoimmunity-together--one-pajama-at-a-time)), but if you listen to it, you'll understand the method to my madness. I don't want to make anyone uncomfortable or ask them to do anything beyond their means... it's a super simple concept, and I am grateful for people who are willing to do something because it is the power of our numbers standing together that will make the difference.

Thanks Jana and all of you for your support. As I said earlier, I will completely ignore any attempts to start any more negativity, so thanks to all you positive folks. That's what this forum is all about. Changing our lives for the better.

And a very very Happy Birthday Jana... they mean so much more after diagnosis. I'm almost three years old now... ha ha ha.

[marta]

Now I'm signing off and going to do some hand stamps with our logo to raise money so that we can help pay for the production and all the incidentals.

Big hugs to you all. I wont post again until after PJ Day, so if I don't answer please don't think I'm blowing you off. Gotta fly and organize our Jasper event (working with a bunch of producers for the TV show - eeehaaa)

Here's a link to the events going on in Jasper: PJ Day 2013 – March 1st | Find The Common Thread (http://findthecommonthread.com/pj-day-2013-march-1st/)

Love and Peace,

marta

[annekat]

Here is the link to the kinda cooky radio interview I did this week (Eliminating Autoimmunity Together - One Pajama at A Time 02/21 by Dr Diane Dike | Blog Talk Radio (http://www.blogtalkradio.com/dr-diane-dike/2013/02/21/eliminating-autoimmunity-together--one-pajama-at-a-time)), but if you listen to it, you'll understand the method to my madness. I don't want to make anyone uncomfortable or ask them to do anything beyond their means... it's a super simple concept, and I am grateful for people who are willing to do something because it is the power of our numbers standing together that will make the difference.

I listened to this and it moved me to tears. It's 39 minutes long, but I just minimized it so I could do other things on the computer while listening. Highly recommended.

[mishb]

I'm sure it will be a huge success Marta and a lot bigger than last year.

Good luck with it all and try not to get to stressed or tired.

Keep on being awesome and remember to always .........

[drz]

Hoping this year is even more successful than last year. I am looking forward to seeing more good news about your publicity promotions next week. Good job and wishing you good luck.

[Debbie C]

Marta, I listened to your interview and it was great. You came across like a pro !!!!

[marta]

Thanks Debra and gang.

Well, yesterday was a crazy busy day. Started at 5:00am with the Breakfast TV show, and finished off with our own Variety Show which was unbelievable. I don't have the video from the evening show yet, but here is some links from the TV show. They have a few things off, but hey, we talked about autoimmunity for 3 and a half hours. The TV crew loved it, our town loved it, and they have already committed to coming up again next year. I got a text from the Weather Woman from that station and she said it was the best Morning Show she has ever seen them do. Everyone was stoked. Here are some links. I will send pictures of more stuff, but first I'm going to nap for a couple of days:

Breakfast Television Edmonton - Watch TV online free - Full episodes & shows on the City Video Portal (http://video.citytv.com/video/detail/2197740806001.000000/live-at-jasper-1/)
Breakfast Television Edmonton - Watch TV online free - Full episodes & shows on the City Video Portal (http://video.citytv.com/video/detail/2197900722001.000000/live-at-jasper-3/)
Breakfast Television Edmonton - Watch TV online free - Full episodes & shows on the City Video Portal (http://video.citytv.com/video/detail/2196840379001.000000/marmot-basin-2/)
Breakfast Television Edmonton - Watch TV online free - Full episodes & shows on the City Video Portal (http://video.citytv.com/video/detail/2197900728001.000000/live-at-jasper-2/)
Breakfast Television Edmonton - Watch TV online free - Full episodes & shows on the City Video Portal (http://video.citytv.com/video/detail/2196840385001.000000/marmot-basin-1/)
Breakfast Television Edmonton - Watch TV online free - Full episodes & shows on the City Video Portal (http://video.citytv.com/video/detail/2196840387001.000000/the-maligne-canyon-icewalk/)

Funny thing, before we went on air I was telling them about the name change of Wegener's to GPA and we went on air and I forgot the name of my own disease - ha ha ha - felt like walking off saying, "I'm cured"... ha ha ha.

Have a good one gang. Off to bed with me.

marta

[pberggren1]

It is amazing how the community comes together for good causes like this. Bravo Marta. This will just continue to grow each year.

[drz]

Great job Marta! :thumbsup::thumbsup:

[annekat]

Great, Marta! I'm glad it went so well. Looks like lots of good stuff to watch when I can make the time.... I've already spent way too much time on the computer today! Enjoy your rest!

[marta]

Thanks guys. Thanks Phil, and I want to say I'm sorry. I have no excuse but I know I was frazzled, and a bit trigger happy... sorry for my outburst and I promise to do my best at being a better person in the future. I am learning stuff every day and this is no exception. I hope I continue to learn until the day I die but I hope that it's never at the expense of another person's feelings again. My most sincere apologies. From now on, if I feel like having a tantrum I will do my best to keep it inside instead of exploding publicly.

On a side note, I had some issues with the X-Box I got for Hana for Christmas and ended up speaking with their customer service guy in Seattle and told him about PJ Day after we had fixed the issues, well yesterday I got a picture from him with his entire team in Seattle wearing their PJ's at the office. How cool and how easily we can reach out and connect with people using this one simple tool to get awareness and hopefully more funding towards eliminating this disease.

[Dirty Don]

If you stop your outbursts...I quit!!! LOLOLOL!

[pberggren1]

No apologies necessary Marta. I have always liked you. I admire your spunk and enthusiasm for all of us. The moment you joined the Forum I thought to myself: Now this is a person I would like to get to know. I loved talking to you on the phone. That was a highlight of my day. I know pred has affected my mood. It is not easy to deal with. It takes a concentrated effort to try and beat it. Pred affects us all in differing and varying ways. I have had my moments as well. I will still cherish you inviting us to your home. You are an awesome host, and a very good cook to boot. I loved meeting your family. They are fantastic. You are truly blessed to have such a family.

That is amazing how the word has spread so fast and that the X-Box team in Seattle was doing it as well. Every movement starts out small. This will grow into something big that can influence future research into autoimmune diseases and treatment.

[marta]

Well here's something that might cheer everyone up. It's my daughter's class at PJ Day doing that will.i.am song I posted on here when I needed some cheering up. Here it is Jasper PJ Grade One style: Jasper Elementary School Grade One Singing "What I am" by will.i.am @ Sesame Street for PJ Day 2013 - YouTube (http://youtu.be/8yhAkA7TVk8)

[pberggren1]

Sweet, love it! Is Hana ever getting big!

[marta]

Couple more from PJ Night:
Father-son dance for PJ Day and autoimmune disease awareness - YouTube (http://youtu.be/TptJv-8RWaQ) - this is a father son combo and it's so sweet and cool at the same time.

and

PJ Day Jasper March 1st 2013 - YouTube (http://www.youtube.com/watch?v=KCoPSQ8HGdA&feature=youtu.be) - these are the grade 8-9 girls dance program but check out the grade one mosh pit in front of the stage... hilarious.

[pberggren1]

That is very cool indeed. Keep the vids coming.

[annekat]

Really great videos, Marta! I loved all of them! Great PJ's, too! What a great community you live in!

[marta]

Here's me bla blaing about why and also sending out thanks to people involved. The video cut out before I finished but the missing people are in the little write up on the You Tube video:

2013 PJ Day - WHY are we here, and THANKS to all our local supporters. - YouTube (http://youtu.be/pvAO4ALBi0A)

I hate the way I look and sound, but this is importante, so I'm sharing.

Peace y'all, and yes, I do live in a fantastic community! The best actually!

[pberggren1]

Very well done. It's not important what you look and sound like. It is your soul that matters. What you are doing is what matters.

[annekat]

Marta, I think you look great and sound fine! The audio quality was variable so I couldn't always hear what you were saying. But that's not because of you. (I don't think any of us likes how we sound on tape, but the badness of it is an illusion.) Congrats on a job well done and may it continue to grow each year.

[rebekah]

Hi Marta,

I just joined this group last week after having a major flare that landed me in the hospital... I am so glad to have found this site and to be talking to some amazing people! I can't believe I just saw this and missed pajama day. I was stuck in bed and wore my pajamas all day, so does that count? lol It's awesome that the customer service team with x-box got involved! Thanks for sharing the videos - I love them all! The kids seemed to be having fun. And you sound great in the video, thanks so much for helping to raise awareness - like you said, I know that if we all come together there will be a cure one day! :)

[marta]

Thanks Gang,

I sure find it a phenomenal coping strategy for the aches and pains and crappy life that Wegener's imparts upon us to be channeling my attention to this. It gives me hope that we can do something, it takes away any sense of wa-wa I might be having on any given day, and it brings me so much closer to every single person in my community... and I wouldn't have been able to get here without the support of the people on this forum. Rebekah, I have an idea with the grade one kids.... I want them to do that same song every year for PJ Day and we will have them as they grow up doing a song about growing up, and getting stronger, and better - I think by the time they're in Grade six, it will be an amazing collection of videos.

Here's a link to the photos page if you want to browse around and check out the action you wont see on video or on TV - findthecommonthread2013's Library | Photobucket (http://s1309.beta.photobucket.com/user/findthecommonthread2013/library/) thanks again for the support. Next year I already have some people who are interested in supporting us Province wide with their businesses (like Bank Branches, and Auto Parts Dealers that have stores in the hundreds... and this is only a week after the event) I think I will have next year's event on February 28th because I want to get the TV coverage and March 1st falls on a Saturday, so I'll do it on Rare Disease Day instead of the first day of Autoimmune Awareness Month. It still works, and the more media the better.

[rebekah]

I love that idea of having the kids do it every year - it would make for some great videos! Thanks for sharing the photos too - they're great! So glad to see so many people getting involved with this! I'll be sure not to miss pajama day next year!

[Barbara N]

Great poster.

[Barbara N]

Me too. PJ party sounds good. If I can help in any way for next year get together let me know. I'm pretty good at getting people involved.