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!

House

When I was in the hospital getting diagnosed, a few people happened to see 'House' that week and told me when I came out that it was about Wegener's. Since I've gotten stronger and less sleepy - ha ha, I've been watching House every night hoping to catch the episode. Well a couple of nights ago, jackpot. Sorta. I saw the episode where a young man of Romani descent got into the hospital with strange symptoms (Season 3, Episode 13, 'Needle in a Haystack".) His organs kept shutting down or blowing up one by one, and his parents weren't into the treatment because they had a history of being persecuted and didn't trust the medical system. The docs would get a handle on one organ and then another would go - at one point the spleen completely blew up and they were convinced it was WG. They thought they saw granulomas on an MRI, but as we all know, you need a biopsy to have a true diagnosis. It turned out to not be WG but a swallowed toothpick travelling through the guys's body and poking organs as it went by them. The parents were right not to treat as we all know the treatment is just a little less nasty than the disease ;)

Watching the episode was both interesting and a little unnerving. It was hairy watching it from an outsider's perspective, but when you're in it knee deep, it's different. You just kinda go with the flow and be thankful that you have something that's not gonna off you today or tomorrow.

So now that we're here and hanging with our families and friends and loved ones, lets laugh as much as possible and enjoy every minute of bonus time given to us.

P.S. See, no pred rage rant today. Ha ha ha.

Getting schooled by a toddler

Well my bunny is off to her first day at school and I had to wake up early to get her there. A hard task for someone who can't fall asleep until 3am. This is all pred induced insomnia. I hate it. It's the thing about the drugs I hate the most. It's a cold and rainy day outside, just like I remember all of my first days at school, but Hana was indifferent as she had no idea what to expect. She went forward with a big smile. A good lesson for us all. Life is always unknown, tomorrow is always unknown, and if you move forward with a smile and no expectations, outcomes can't really disappoint. A lesson learned from a toddler.

Heading into the Elementary School.

On a different topic. I've just checked out the stats on this blog and am amazed at the visits I've had and some of the new friends who are reading it. Thanks to you all for coming to my pages of ramblings. This inspires me to pull up my socks and get working on the two projects I started out with. I'll keep you posted on the progress. I know it's moving slow, but life seems to trump the computer, so I'll try and focus better. So here are some of the countries that have peeked through the keyhole of my Jasper; Canada, Sweden, US, Norway, Australia, Russia, Germany, Denmark, Hungary, Bulgaria, New Zealand.

So welcome my friends, and lets work together to make a difference. I have to say that since I've gotten diagnosed, I've heard of so many people who have WG or Vasculitis and have gone through a painfully long time of misdiagnosis and various medical runaround that I don't think this family of auto-immune diseases is as rare as people think. I think there is more people walking around with it and not knowing they have it than we know. This is why awareness and research is so important. I think new doctors coming out of school are more tuned to it, and we need to do something to alert the long term practitioners to look at and diagnose all of people's symptoms together rather than treating one at a time and missing the correct diagnosis. My dad went to a doctor a few years ago and was trying to tell him what was wrong with him ( he had several symptoms presenting at the same time) and the doctor REFUSED to hear more than one symptom. Told him he has to go out and wait for a second appointment to get his second symptom heard, and so on for the third and fourth (this after dad had waited for over two hours to see him.) I was sooooo totally pissed when I heard that, I wanted to go and wring the doctor's neck. Needless to say dad never went back to him - even though he had been with him since the guy started his practice. Jerk. That is not medicine, nor a doctor. This is what we need to eliminate from our medical system. Doctors who forgot what doctoring is all about.

Ooops. I think I might have ranted there a bit. Oh well. Have an awesome day friends.

Life changes again tomorrow

I was talking with a buddy who's also got WG (shorthand for Wegener's Granulomatosis) and we were talking about change. I love change. I have always loved change. I find that any change is change for the better, even if it sucks at the time. Wegs has been like that for me. It has changed my life in so many ways but I think most if not all have been for the better. Granted physically I am in crappy shape compared to where I was before the events of May of this year, but it's giving me an opportunity to work towards a much cooler goal as far as physical shape goes then before. Before it was just for the fun of it... the skiing, the biking, the running, all of it was just for fun - now the goal is to get better and stronger and healthier and be there for my family, a much worthier goal, no?

Back to the topic at hand. Change. "Change is good donkey", and tomorrow life takes on another great change for my amazing little family. Hana goes to her first day of Nursery School. I know, little change in the big scheme - every family experiences it, everyone goes through it, but boy does it taste sweet to me considering that for a few moments in a hospital bed about five months ago I didn't think I would be alive to see this day. I'm so stoked, I have tears running down my cheeks as I write this. The happy kind of course.



Hana getting a bang cut for first day of nursery school.

 Today I also went down to 15mg of pred. I've been dealing with a cold the last few days, my first since I started the drug cocktail (I still owe you a list of immunosurpressant side effects - later) and being immune compromised. The physical effects were there but I think they were less of an issue than my mental angst about the whole thing. The viral stuff is OK, I think it might hit us a little harder and linger a little longer, but it also opens us up for bacterial and fungal infections. THAT is what I worry about. THAT I don't want to deal with. I see my rheumy on the 20th of this month and we will probably switch from crazy toxic chemo to just toxic chemo and see what happens. By the time I see him, I should also be on 12.5mg of pred, so hopefully by then I'll be able to report some improved sleeping habits. Any sleeping habit is good as long as it has actual sleeping in it, I'm all over it - ha ha.