Month: April 2013

I haven’t forgotten about our goal. I promise. I’m just not posting the cool little twists and turns this journey is taking.

I have started working on a kid’s book ‘Out Of The Moon Disease’ and will keep you posted on the forward progress.

Also have been talking to  some awesome guys who would like to be our corporate sponsors and move forward in the search for the common thread alongside us. This is fantastic and exciting and I’m thrilled.

We are about to have our first official meeting for our newly formed Society/Non Profit and we will move forward in leaps and bounds.

I’m glad I got this disease. I know, crazy, hey? But in a strange way it’s kinda true. It’s bringing my life in such interesting new neighbourhoods I would have never entered before, willingly. It’s very surreal sort of experience when you surrender yourself to the forces of the universe to take you where you need to be, and do what you need to do, and work towards goals and objectives you never knew existed let alone needed to be addressed. It’s cool too to see people see this gaping hole and reassure you that you’re not going crazy, that there is indeed something terribly wrong and they see that we can do something to change it for the better, together.

I live a blessed life and I am lucky and grateful for the opportunities I have to change the course ever so slightly towards better health for all. All of which would be impossible without the help and support of so many.

On a similar but slightly different note: We have signed up for a float in our Canada Day Parade in Jasper, The Walking Barely Alive, Pajama Walkers. So if you’re from Jasper and want to play along, get ready to participate in the parade.

Hello friends and followers.

I’m sorry we haven’t been in touch much lately, but those of you on the drugs we like to take to stay alive know the pain in weaning pred. I’m there right now. Trying to get enough strength to push through the day, but I continue to scheme and plan and work on getting the word out and increasing awareness to a point where there will be a will to change the status quo.

I still get riled up when I see news stories that could be talking about autoimmune disease and raise that ignorance out of the tar pools that it’s stuck in. Yesterday for instance I watched a story on the news about the chemo so many of us know so well – cyclophosphamide – and how it was watered down at some pharmacy and the people it affects. They mention the usual suspects that we all know about, the few cancers that use it, but nothing about the number of autoimmune patients that have to take that wretched drug, and take chemo for life. (side note: cyclophosphamide (CTX) is known to cause bladder cancer, so here we are taking a drug for a year to keep our immune system suppressed but there is a high probability of contracting bladder cancer if you don’t flush gallons of water through your body daily to avoid having the metabolized by-products of  CTX linger in your bladder and lead to a whole new set of problems)

Until I got sick with Wegener’s, I had no idea that chemo is used to treat autoimmune disease. Not a clue. It was like a slap in the face when they told me the treatment. It is time that everyone knows. It is time to make a difference. I’m putting this chart here again just in case you haven’t seen it before. I’m not trying to take anything away from any other research, I just want those researching various autoimmune diseases to start sharing and pooling their knowledge and already existing research. We have been so segregated from each other that I believe the answer is just below the surface and it wouldn’t need a whole lot of scratching to find it. Once found we can not only help us, but millions of others suffering a bunch of other diseases and our sad sad health care system. It really is a win win, and it blows me away that people aren’t all over this.

Together we can make an insanely huge positive change for our world. But we have to work together.