I have to apologize for my long absence. I have been dealing with some health issues and they in turn have created some mental and behavioral issues. I have caught myself behaving badly and completely out of character and snapping at people who are trying to help me. I’m currently weaning off the pred and had no idea, none whatsoever, how tricky and tough that would be. I wrongly assumed that as you get closer to normal levels things should get better, but they don’t, not when it comes to prednisone. Below 7mg, this has been one of the tougher things I’ve done in recent history. I’m about to go from 5.5 to 5 this week and apparently this is the magic spot where your adrenals start to kick in. Most of you reading this probably already know what I’m talking about but for those that don’t I’m laying it out on the line. It sucks.
OK, enough wa wa wa… Here’s where I’m heading with this gig.
I’m in the early planning phase in my brain (and just a disclaimer, this is exactly how it worked out with PJ Day) and just letting it gel and take on a life of it’s own. My idea is to create something that is not available in Canada. A mechanism by which young people with autoimmune disease can get together, get information, have some fun and feel empowered. There is events like this in the US, however in Canada no such thing. I was talking to a friend whose daughter has JRA (Juvenile Rheumatoid Arthritis) and she and another parent talked to the Arthritis Association in Canada and were told there is nothing for teens, and there is no plan to do anything in the near future (even though these parents are raising a bunch of money for the Association, there isn’t much in the form of direct tangible help for their kids.) So I’ll try and make something happen here in Jasper. I can’t think of a better place to allow a bunch of kids to just get away from the reality of chemotherapy and steroids, and rules that are different from all of their friends.
I would like to have this be the first tangible goal with our group. We can work on getting up some doctors, some physiotherapists, some social workers, some sports therapists and perhaps even some great entertainment for them. They can meet each other and create life-long connections with people going through the same ordeal. There is so many options for things to do in this amazing National Park, so I feel this would be a great coup if it comes together.
I will work on this and keep you posted.
And again, my sincere apologies to anyone I might have wronged in the past few months. I promise to do better in the future.