Here we go...

Be gentle, it's a work in progress, but start spreadin' the word. I'll keep adding if you pass it on. I'll have some posters on there soon.

Thanks friends. Every journey starts with a single step and here's ours. We've taken on a few in the last little while, not it's time to take one where we're calling the shots, not a stupid disease.

Find The Common Thread

Only moments away from the best year ever....

First of all a very Merry Christmas, Happy Hanukkah, Happy Kwanzaa, a great holiday in whatever you celebrate to this season, and the best ever New Year to you all. As some of you know I'm a strong believer of following your gut feelings, and my gut is telling me that this coming year will be the best ever.

Now for some news.

1. RTX has been approved by Health Canada for the treatment of Wegener's. Well we're a little behind (the US approved it last year for WG) but better late than never. Now it is not 'off label' use for Wegener's so if you have insurance it's a viable option... especially since the only two real heavy hitters to stop WG in its tracks during a flare - cytoxin (a.k.a. cyclophosphamide or CTX) and Rituxin (a.k.a. Rituximab or RTX) so yeah, we're legal on both sides now.


2. I'm almost finished putting together my supporting material for our 'change the world' moment. I will be directing you to a new site in the not too distant future to pick up your stuff for "Find the Common Thread Pajama Day" for Autoimmune Awareness. If you're not sure what I'm talking about here's the short version (I know, who am I kidding, I am incapable of writing anything in 'short version')...


... I think that the only way we as a society will make any significant - quantum leaps - forward with finding a cure or anything of the sort, is to widen the focus from our 'little' (not so if you're in it), rare diseases to looking at autoimmune disease in general and working towards raising awareness and finding a common thread for all AI disease. Here are some interesting quotes from AARDA (aarda.org)


"Autoimmune disease.......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."

also....

"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.

Autoimmune disease.....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."

February 29, 2012 - Pajama Day for Autoimmune Disease Awareness - Let's find the common thread! The wave will start with us and in a couple of years you can tell your friends you were part of the wave that started in 2012 and changed the world for the better.


I will continue to muse about Wegener's here... can't ostracise the already ostracised child. Us rare Weggie birds need to flock together and use each other's chemotherapy thinned plume to support and comfort each other. It's the best way to pull through to the right side of the fence. Feel free to contact me if you have questions (I don't know the answers, but I'm a great finder of the helpers needed - and I have plenty of opinions as you can see) or if you want to get involved in any way of raising awareness and getting the ball rolling on the bigger picture - Pajama Day. Find the Common Thread....

hiya friends

I'm sitting at a café, sipping a decaf latte and having a wonderful cranberry apple muffin. I have a doc's appointment and wanted to get a few things done beforehand, but all the stores are closed so here I am.

I've been so busy lately, but my mind is constantly mulling over the 'Find the Common Thread Pajama Day' concept. I will be putting something out on Facebook. I have an idea how we can all make ourselves known. How we can stir the pot. How we can make people stand up and notice. I have a logo that's been dancing around in my head and it's almost done, but it's gonna get us all united. Yup. I'm thinking it will.

I have other stuff I wanna talk about, but my time on this computer is running out so I will throw the other thoughts out in the ether after my docs visit today. It's nothing important but it's in there.

Peace

Pinker shade of life

Yup, 24 hour jobbie. Hopefully this wont trigger any flare type activities, but the worst of the the fluy part of it is over. I just have to keep an eye on what happens next.  I am getting another RTX infusion in January, so hopefully nothing significant that will force me to up the pred before then. I just want to get to feeling like old Marta again - wrinkles and all. On that note, it's funny how precious my previously dreaded wrinkles are to me now after the prednisone affair. I can't wait to see them again. They're startting to show a little, and some of them are a strange new variety, but anythng is better than the full moon pred face.

Back to the plans for changing the world. Baby!

It's not easy being green

Although I don't have Kermit's chops, I did share his lovely complexion in the last night and day. I don't think I like anything I've experienced less than emptying the contents of my bowels involuntarily with all the involuntary muscular contractions and body contortions that go with it. It has brought a couple of things to light.

One is how lucky I was to have been in good shape before getting WG. Now I'm in anything but good shape, and less than 24 hours of stomach flu has managed to knock me on my ass. So stay in shape, you never know when you'll need it.

Two is how lucky I am. How, you may ask. I've been in a couple of situations that are vomitously flamable, and I've been spared on both counts. I didn't have any nausea when I was pregers, and I've been super lucky in the last year and a half of daily chemotherapy ingestion. So yes - lucky. Now I'm in bed trying to regain my composure so that I can keep going on with our plan to change the world for the better.

Till soon.

Find the Common Thread - Jammies for AI Day

It's so obvious. So why didn't I think of it before.... chemo brain perhaps, pred head perhaps, just silly old brain perhaps (although the MRI I had last week shows I have a brain, and it's not affected by the WG fire - pheuf on both counts.) So give me a few days, and I'll think it through and put together some promo material we can all use. I'm on it. If you have ideas pass'em on.

Enter into my vision

So I've been racking my brain trying to figure out how to raise awareness for AI diseases.
I think I have it. Picture this... most AI disease sufferers look relatively OK on the outside but have really gross days of suffering on the inside forcing these seemingly healthy people to spend days upon days in their house in their pijamas trying to get their life back on track. Well, here's the plan.... a nation-wide pijama day. PJ's for AI's. Get people to go to work, school, play, dates, etc. in their pijamas. If you suffer or know someone who suffers from an AI disease, wear your PJ's in support. Then list all the AI diseases and guaranteed everyone will know someone. Guaranteed. Get businesses to challenge each other have PJ fashion shows. Can you see it? I don't know how to raise money for it with this but I think the awareness is most important now.

Just to give an idea of how our day might look like.

Part two. Have PJ day on Rare Disease day - end of February. Why? Because society hasn't put it together yet. When we look at the various diseases separately many of them fall under Rare Diseases - like Wegener's, however when you put them under the same umbrella (like has been done with cancer) Auto Immune diseases affect millions and millions of people. The find of a cure - or common thread - could have world wide implications. It would save billions of dollars world wide on chronic illness care as this is the number one drain on medical systems throughout the world and AI diseases are the number one cause for chronic illness.

How's that for a goal?

Wanna play? Wanna change the world? It hasn't been taken on yet, and well who better to take it on than a bunch of sick people?

This is gonna be SICK! ;)