Why am I doing this exactly?

The question posed above is more for myself than for anyone else. I just told my husband that I want to start a blog and he asked me why. Good question I thought, and I had a hard time articulating the answer.  I've been thinking about it for a while for several reasons, and I guess this is as good a time as any to put them down in writing for myself and anyone who happens to stumble on my rantings.

I've never thought that I have anything to say that would be of interest to anyone, but I now find myself in the unenviable position of having recently been diagnosed with Wegener's Granulomatosis. If I were playing the odds on the other side of the spectrum, I'd be one of those rare lucky folks who won the 'BIG ONE' - the multi-million dollar sweepstakes that we all dream about, unfortunately my odds came in the wrong side of the tracks and I find myself with a lifelong auto-immune disease that is so rare that there is hardly anything out there for me to use as a reference to get my head around what's coming my way.

I was lucky to stumble onto a Wegener's Granulomatosis forum (http://www.wegeners-granulomatosis.com/forum/ )(http://www.wegeners-granulomatosis.com/forum/) with a bunch of strong, wonderful, supportive and knowledgeable Weggies who have been a pillar of strength for me in the last month and a half. Thanks you guys! But if you wanted to go to a bookstore and buy a book on the disease, good luck. Apparently there's no money in selling to us... the curse of being so darn unique. Wegener's is part of the Vasculitis family of diseases - which is an inflammation of the blood vessels. If you want to know more about Wegener's you can check out the Vasculitis Foundation of Canada(http://http//www.vasculitis.ca/vasculitis-resources/wergeners-granulomatosis.html) or the Vasculatis Foundation in the US at (http://www.vasculitisfoundation.org/wegenersgranulomatosis)


So the reason I started this... I want to make some dough (not the cookie variety, although being on prednasone don't think it hasn't crossed my mind) for the research for Wegener's and I have ideas, lots and lots of ideas. Ask any of my friends, I'm always concocting something goofy in my little brain, but now I have a purpose, so lets see where the universe takes us. I want to use this blog as HQ for my ideas to make money for Wegener's research and awareness campaigns and shenanigans. Also I'll use it for some random musings and entertainment when I can't sleep at night (another great prednasone trick.)

 A few decades ago, 95% of people diagnosed with this disease died within 5 to 8 months from diagnosis. Once the drug "cocktail" as I like to call it, was discovered, a diagnosis was no longer a death sentence. I dare to harbour a fully realistic hope of a drug free remission in the future. Granted, this disease is anything but ordinary, and because it's systemic, it tends to affect everyone slightly (or not so slightly) differently, the drugs we're on (which are highly toxic and have some nasty, nasty side effects) also react differently with each patient and doses and combinations need to be 'noodled' with to get the closest to perfect effect - if there is such a thing. So YES, research is good, as I am given extra time to spend with my beautiful daughter and my wonderful husband and amazing family and friends, but more research is needed as people are still dying and suffering from this disease, and my sneaky suspicion is that we'll be hearing more about it rather than less.

Tomorrow I'll start putting some ideas out there.