In memory of our lost friends

[marta]

Let's change the future!

Since getting diagnosed in 2010, I've seen too many good people go. TOO MANY.

From my understanding none of them had Autoimmune Disease as their cause of death. Their final vote, in the form of a mortality statistic, went to other diseases and disease groups. What does that mean? Continued lack of awareness, continued lack of research, continued lack of support. All of those going to the disease group that ended up on our dear friends' final Cause of Death certificate. So the years upon years of fighting this crappy autoimmune disease went completely unacknowledged and their vote for research went to Heart Disease, Infectious Disease, Kidney Disease, Cancer, etc. etc.

The reason for this is because all morbidity and mortality stats are based on the World Health Organization's International Classification of Diseases list, which does NOT have Autoimmune Disease as an option.

I have started a petition in hopes of getting the WHO to add Autoimmune Disease on this classification list. So far it's mostly Weggies on there, funnily enough since we're such a small lot, but I hope that it goes out there because 1 in 5 people are dealing with some Autoimmune Disease crap, and we all know that from diagnosis on, whatever kills us, is probably a direct effect from either disease activity or treatment protocols. We need to stand up for ourselves, and get any other autoimmune patients or their families to sign the petition. Every signature sends an email to WHO as well as CDC and Health Canada. Let's leave a legacy of positive change for our future generations (and it might very well affect our direct future generations, since one of the things they know for sure is that Autoimmune Disease has a genetic component.)

Here's a link to the petition. Sign it, and pass it on to your circle of friends. Let's get more signatures than a petition for beer....
https://www.change.org/p/missing-aut...edium=copyLink

Peace and good health to you all.

Marta (not so smarta)

[me2]

I dunno. Beer petitions get filled pretty quick Thanks for working on this Marta (plenty dang Smarta). I'm not surprised that the initial signers and people participating are weggies.

At a VF conference in Cleveland a few years ago one of the big-giant-head guest doctors remarked that weggies were the "500 lb gorilla" of autoimmune disease people. He said he didn't know why but weggies were by far the most organized and active of the rare disease groups. My thoughts went back in gratitude to Marilyn Sampson who founded the organization with two other weggies at her kitchen table. (She was the very first weggie I ever talked to)

Thanks
Kirk (The Jerk)

[Debbie C]

Hi Marta ! I signed the petition and I went a step further. This may sound morbid but you had me thinking about this the last time you posted about this sooooo I went and wrote my own obituary and wrote that I had this disease.So if anyone reads it they will know even if its not on my death cert. Keep up your hard work...you will make a difference

[marta]

You guys are awesome. Have I told you that lately? No, I haven't, because I've been buried in my own life.

I love the 500lb elephant Kirk (not even close to being a jerk.) I'll never look at us as a group the same way again, and I can totally see how strong and united we are, I absolutely love that analogy.

Debra, what a neat idea. I might have to do the same. I hope that we can get enough signatures to make some sort of difference and we don't have to write our own obits to make sure that people get it.

I have to tell you that despite being absent from here, I think about this group a lot. I've been reading David Hawkins of late and even though I knew this instinctively, I can now articulate why this group is so good for everyone involved. He talks about this in the book Healing and Recovery.

By transferring our thought patterns from the 'ah crap, look at what I'm dealing with' (the self pity, hopelessness, despair, anger phases of life) to openly sharing, helping others, and being compassionate, loving, and understanding, we are actually taking the healing process head on. We've moved from the lower emotions, which contribute to, and propagate illness, to courage and above, which heal. You are all healers on here. When we come on for the first time, we are scared, open and vulnerable, and with our collective energy we change to nonjudgmental, compassionate, healers. This is a safe place to heal. It's so cool. This forum will be a big chapter in my book.... if I can make it past Halloween (my daughter's favorite 'holiday' of the year, therefore my busiest time of year... ha ha.)

Thank you elephants for your support and healing powers. You are all incredible spirits that I am honoured to have met - even though only on line. This disease has been a true blessing in so many ways, and now I know I can get past the physical side of it, and rise above it. It has been a springboard for transcendence and I think my old life as a robot, going through the motions, sucked in comparison to the wealth of spirit I've gotten from Wegener's and the wonderful people I've met along the journey.

Big hugs to you all.... (I've become a hugger since getting sick, ha ha.)

[Dirty Don]

'It has been a springboard for transcendence and I think my old life as a robot, going through the motions, sucked in comparison to the wealth of spirit'

Whatever it takes m'dear, whatever it takes...and it's about time!!! Ducks, runs away into a snow bank...with my coffee of course! Luvya!! Keep on keepin on...it's what we do!

[marta]

'It has been a springboard for transcendence and I think my old life as a robot, going through the motions, sucked in comparison to the wealth of spirit'

Whatever it takes m'dear, whatever it takes...and it's about time!!! Ducks, runs away into a snow bank...with my coffee of course! Luvya!! Keep on keepin on...it's what we do!

In line with your awesome signature.
Luvya back!!!

[Alysia]

Thank you, marta, for your inspiring thoughts and wisdom, for your kind words, for your fighting positive spirit, for your caring. Love u2 ♡♡♡

[mishb]

I have shared the petition with a few Aussie groups on facebook, other than WG ones.
Hopefully lots of Aussies have signed and hopefully you reach and exceed the numbers you need.

[Erin2014]

Hello Marta,
What a wonderful post!! I wholeheartily agree that this forum is a HUGE part of the healing process. The members provide me with so much positive energy and hope. It is disheartening to hear when fellow Weggies are having a difficult time, but there is so much support and encouragement here - it's fantastic.

I also signed the petition and have sent it to friends and family in Canada. Between Canada, the US, the UK, Australia, Isreal and ... the WHO will get a sense of the worldwide impact this disease has on the citizens of the world.

Stay well!
Erin
A member of the 500lb gorillas troupe!

[marta]

Thanks gang, we are almost at 200. I know this is nothing compared to some of the other petitions, but hopefully it gains momentum and becomes something to be reckoned with.

500lb gorillas unite!