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

[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) 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

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 . 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.