Saving the drama for my momma

Blah blah smoke blah. Still can't see the mountains but it's been OK hanging in the house. This morning I looked at the weather forecast and it's supposed to rain tonight and Hana said to me " does that mean you won't be a prisoner in your own house?" - it's amazing the hearing they have and then DON'T HAVE when you want them to do something. I love that little creature.

Bri went for a bike ride today up to Cavell "just to get the blood moving". I use to be one of those people that paid no attention to air advisories. I love THAT creature too.

I feel alright when I'm inside, so I'm sure it's the smoke that made me so whiny on my last post. I'm still at 25mg but I think I'll go down next week while we're on VACATION - wooot double woooot!!

Mom and dad bought a couple of hepafilters in case the smoke is crazy at our destination, so if I have to stay inside, so be it. I can start the book template - incidentally, spoke with a publisher's representative about that yesterday, so it's seeming more and more like reality. I'm stoked.

Hopefully this post wasn't as whiny as my last. I hate being a whiner.

Oh yeah, it's Rodeo Week in Jasper, and I'd like to thank, hug, kiss, etc. Hana the First for taking Hana the second to the Rodeo twice now. Love ya Hanas.

smoke smoke go away....

The uncertainty continues.

The one thing that really messes with my mind since I got into the world of Wegener's is the uncertainty. Coming from a place of knowing, being more self aware of my body than the average Joe, to this constant uncertainty is quite un-nerving. So here's the quagmire I'm working on right now.

Factor number 1. The air in Jasper is smoky, very very smoke-eee. It has been this way for two or three days now from the fires in British Columbia.  When I left the hospital one of the things that was very stressed to me by the docs (my wonderful Dream Team) was to avoid smoke of any kind - campfire, cigarettes, any and all smoke (I would think that would include forest fire smoke in the air.) I had quite substantial lung involvement and can really feel it when it's even a bit smoky.

Factor number 2. I'm weaning off prednisone. Notice I said 'off' - dare to dream. I started at 60mg, am now at 25mg and supposed to go down to 20mg tomorrow. My rheumy has basically told me that I need to make the decision as to the rate of the weaning based on how I feel. Whoa!!! That's a lot of responsibility placed in the hands of a Weggie neophyte. The problem is that if the weaning happens too fast there is a risk of a flare. What's a flare you ask. A return of the gross Weggie symptoms that made feel like I'm at Death's Doorstep in the first place. How do you know if you have a flare? Not quite sure, but from chatting with my other Weggie friends, it's listening to your body and paying attention to what you're feeling, and if it goes on for 'too long' then you gotta go see your doctor to make sure you're not flaring. That in combination with regular lab work should alert us if I am flaring. What happens if I do flare? Not sure on that one either, but I think that we have to jump up again with the prednisone. That would suck because I'm not really digging the side effects of the drug and despite the fact that it's keeping me going right now, I would love to get off it ASAP.

Factor number 3. For the last few days I've been feeling some old feelings in my head. The intensity level is nothing compared to the last couple of weeks before diagnosis (which was out of this world painful) but they're there nevertheless. Popping ears, headache, sore throat, pain in chest area (same side that was bugging me just before diagnosis), leg in a vice grip feeling, generally quite tired (sleep is an issue too, but I got a relatively good sleep last night - had the bed to myself). I also had a crazy pain in my chest after being outside for about 20 minutes. I couldn't believe how much it hurt, and it felt like I couldn't take a breath... quite cool.

Factor number 4. Hana's all snotty and sneezy, there has been all sorts of bugs oscillating around me lately and not quite making their mark - the immunosurpressed large girl now living in my mirror. Have the germs finally succeeded?

So that's my dilemma. Why am I feeling the way I am, and should I be concerned? I think what I'm going to do is hold off on taking the 5mg predi off for this week and let it go another week. Hopefully the smoke goes away, and between the two I'll feel more 'new normal' again (old normal is a long ways away.)

I'm on a roll

Here are some more T-shirt ideas. Andrew, I've taken one of your ideas and added a picture to it. Hope you like. I'm having fun now. Caution, one of the shirts will get an ear worm (a silly song that gets stuck in your head and refuses to leave for days on end) going, but it's an ear worm with a twist....

Wegener's t-shirt idea (for the sleep deprived pred junkies)

Andrew's caption of 'Zero to Pred Rage in 2.3 seconds'

Wegener's T-shirt with ear worm potential. For those weggies who look in the mirror and see someone else looking back - while sweating profusely.

Here goes.

I've started playing with some ideas for T-shirts to get some awareness out there on Wegener's, have some fun with what we're dealing with (drug side effects, and more) and hopefully start the ball rolling with raising some money for research. Here's my first t-shirt design and any money that I make as profit (i.e. above what it costs me to produce and send out) goes to research for Wegener's. That goes for any money I might get from Google from people bouncing to various ads from my blog - I'm not holding my breath on that one though.
So, here they are... the first try. Looking for feedback. If I get some, there might be some tweaking of the design, otherwise, I can look into how much it will cost to print them and send them to you all throughout the world. Slightly anxiously looking forward to hearing what you think.

Here's the girl's / lady's / woman's / babe's (whatever you like to be called) shirt

Ladies Wegener's Granulomatosis T-Shirt design number UNO.

... and here's the boy's / guy's / dude's/ gentleman's/ man's version

Men's Wegener's Granulomatosis T-Shirt design numero UNO.

So, let me have it. I think I'm ready. Comments, suggestions, pred-rage, I'm ready for it all. I also have a few others brewing on my computer screen which I'll post in a bit.

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.