The hunt is on

Looking for a vasculitis or wegener's doctor. I've searched the Alberta docs and have found a couple of potential doctors who seem very very nice and interested in this nutty disease. I will follow up on Monday to see if they are taking any new patients. Cross your fingers for me, better yet, if you know of someone pass their info on to me. Gracias Amigos.

A little whine with your cheese?

So I went woohooo when I went down to 12.5mg of pred, but now I'm crying the sorry blues. I've been feeling like a bag of poo since then ( a little before, but I think I had a cold then) and it's been nasty the last several days. I actually had to open up the old codein bottle a few days ago. Finally I decided to be brave and up the pred, so I did, two days ago I went up to 20mg. I thought I'd do that for a few days and then come back down to 12.5mg. I've since changed my mind and decided I'll go down to 15mg and stay steady there while trying to figure out if the new immunosurpressant jives with me.

So within two hours of popping 20mg, I felt a relief of the headache, the earache, the stuffed sinuses, the runny nose, the overall body blow feeling. I was really exited about that but nooooooo... nothing can be steady with this gig. Right now I feel like I've been hit by a truck. I'm stuffed, sore and sneazing every few minutes. So what up? I think rheumy is going to get a call tomorrow. Any other weggies out ther experience the same thing? I'm a little mad at Wegener's right now. Or am I mad at pred? Not sure, but I'm mad at something!

There another rant brought to you by your somewhat friendly neighbourhood Weggie.

Hang on tight. Roller coaster ahead.

I remember when my dad worked at Galaxyland at West Ed and kept calling me a chicken because I wouldn't go on the roller coaster. He finally made me go on by saying "You want to be a pilot with the air force but you wont go on the roller coaster". Fine!!!! I went for a ride and absolutely loved it. I went for 14 consecutive rides immediately after the first one. This was many many many years ago.

Well I'm on a different roller coaster now.

I went to Dr. Yan (rheumy) on the 20th and was told that we are going to stop the cyclophospamide - weeeeeeeeeeeeeeeeeeeeeee
I have to stop the pred wean though for at least a month and a half
aaaaaaaaaaaaaaaaaaaaaaaaaaaaa
I'm going to be put on a less toxic chemo drug
weeeeeeeeeeeeeeeeeeeeeeeee
I have to inject it once a week instead of just popping pills
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
He told me that my ANCA was quite high (didn't get an actual number) when I got diagnosed, and now it's in the negatives (again no number)
weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee
Have been feeling off for the last couple of weeks (crazy stabbing headaches, ear aches, phlegmy like the early days, stomach pain, eye pain, chest pain and sore teeth)
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
For sure it's not because of coming off cyclophosphamide as I was feeling this way before I stopped taking it
weeeeeeeeeeeeeeeeeeeeeeeeee
Could be the flu shot, could be a cold, could be the pred wean
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

A roller coaster of a much different kind. I like the one at West Ed better... you are more certain of the outcome than the one I'm currently riding on. But I guess like a roller coaster, it's always more scary when you are on it than it is when you get off and look back at the experience. I guess I just have to keep that in mind an know that I'll look back on this one day and hopefully giggle.

12.5 Today - Woot woot!!!

Pretty exciting!!! 12.5mg of pred starting today. I know the end is farther than it looks because the wean is going to slow down dramatically once I get to 10mg, but it still feels like it's coming closer and closer. I also know that when I say 'the end' it doesn't necessarily mean 'the end' but it'll be an end of one chapter and the beginning of another. The 'baby steps' program is a hard one for a brain like mine to follow, but I think it's like going for a long run or a long bike ride.... you set yourself little markers that you know are along the way and it gives you a sense of accomplishment and a boost to go forward every time you pass one of your self created markers which of course are much more attainable and imaginable than the whole run or bike ride or disease battle process.

Another marker down!

"Healing forces are working their mojo"

When I was working we'd get together every Thursday and read Rob Brezsny's awesome and insightful astrological predictions. It was not only entertaining but always seemed to hit the nail right on the head. I just looked at this week's musings for the first time in many many months and this is what it said.

VIRGO (Aug. 23-Sept. 22): "The art of medicine consists of amusing the
patient while nature cures the disease," said French philosopher Voltaire.
With this in mind, let's evaluate your current discomfort. From what I can
tell, healing forces beyond your control and outside of your awareness are
going to be working their mojo to chip away at your problem. But it will
still be wise for you to occupy yourself in activities that you think will
expedite the fix. Doing so will minimize your anxieties, allowing nature to
do what it does best.

Cool! Hey? Me likey!!!
If you want to see what Rob has to say for your upcoming week - check it out here: http://www.freewillastrology.com/horoscopes/


On a completely different note, the Zazzle store is doing great in the last two days since it's been open for business. I know the prices are higher than normal but the product isn't being mass produced, so I can see how it would cost them more to make. The 'royalties' that I get (which will go towards publishing the book) aren't very high but in our first two days we've done $300 USD in sales. Way to go Weggies and friends. You really rock! Another thing that makes me think that more good things are coming out of this sickness in my life than bad. I have many more ideas that I will continue to play with and put more products on there with more choice. I'll also contact some other portals that might direct people who I might not personally reach.


Again A BIG FAT THANK YOU to you all.

Shirts and other goodies are ready to be purchased

Lets start making money so that we can go to phase two and build a book. I've just put together a bunch of t-shirts, to-go mugs, and porcelain mugs on Zazzle where you can purchase what you like for Christmas or just for fun. If you have any ideas, please feel free to pass them on and I'll bring them to reality. Here are links to the my new store:

Canada:
http://www.zazzle.ca/weggiesunite*
United States:
http://www.zazzle.com/weggiesunite*
UK
http://www.zazzle.co.uk/weggiesunite*
Australia:
http://www.zazzle.com.au/weggiesunite*


There are some Wegener's specific designs and there are some Prednisone only designs and there are a couple of shirts for Weggie lovers, you know the people in our lives that have been there through thick and thin. So go shopping and have fun.

Thanks Anna

Thanks Anna for the inspiration.

I've gotten back to the task at hand.

I've written the intro - a very rough and dirty (as in still needing some serious editor love) version but the skeleton is there. Now I'm working on how to organize each person's story so that the book is easy to navigate for information gathering but it also flows and is interesting to read for the individual stories within the pages. Once this is done the gathering of stories will start and the forward momentum will continue. Woot woot!