Hello from a new Weggie in Canada

[JanW]

Welcome, Marta. You will find great support and information on this thread. A few of us, including me, will be going to the Vasculitis Foundation's patient conference at the end of this month in Long Beach, CA. and will bring back even more information from top specialists. You can find a wealth of information here Front Page | Vasculitis Foundation which may help you with what you are going through.

[marta]

Hey Cubby,

Thanks. When I came to Canada they wanted me to change my name to Martha, glad I didn't listen to them. I'm much happier with the name that was given to me by my momma.

You would love Jasper. It's a tiny little town - a real town - in the mountains. No big stores, no pretense, a lot of good people, and tons of cool stuff to do, we have all the creature comforts of home (there are more restaurants and high end chefs per capita than anywhere in North America, we only have 4,500 permanent residents) but it's so ridiculously laid back, it's super cool. Can you tell I really love where I live? ha ha...

You and your friend sound like me and my sister. She also was in the delivery room with me, lives next door to me (which is absolutely bizzare considering the housing situation in Jasper - it's in a National Park, so housing is not only very expensive, but also hard to come by due to the limited footprint enforcement), and I named my daughter after her. We've put a gate in our fence, so we spend a loooot of time together. She was there for me when the craziness went down, and is there for me every day when I need a hand. All I have to do is hollar from my bathroom window, and she's over. I try not to do that very much though.

Like I said, I'm still new to the Weggie game, so I too am uncertain about a lot of things, and just winging it. I try and keep a positive outlook and focus my energies and thoughts on the positive and the accomplishments and the successes, I find it makes the whole thing more bareable, and palatable. I know there are crazy things that can happen, but I've always been a person who likes to pull the fun and funny out of life, so I'm going with that strategy. It's worked for me for 43 years.

Best to you and your friend and her family.

[marta]

Hi Jan,

California, hey? Too bad I'm so early in the game, I still don't feel confident leaving my safe area, otherwise I'd be there with you all. I'd love to talk to people face to face about Wegener's. I keep hearing about friends of friends who have this but they're once removed and scatterred throughout the globe, so no sitting down for some decaf with them (I'm not allowed to drink coffee, but I've noticed that there are a few coffee addicts on this forum, what's up with that, coffee was my only real vice and I had to give it up). I've been on the Vasculitis Foundation page and gotten some good stuff out of there, but face to face is always the best. When I see the docs they speak so fast and give so much info that I leave with my brain over-full and not really capable of retaining the details, and I'm a detail person. It'll come though, I know I'm going to get very well versed in the language of Wegener's.

Thanks again, and have a safe trip to California. Dip a toe or ten in the Pacific for me.

[JanW]

Why did you have to give up coffee?

[marta]

When I was in the hospital and the 'Dream Team' was there with the pharmasist, they told me that I can't do caffeine. I have since talked to my doc who is a GP but is sorta my go to doctor since she is closer to home than the four hour drive to the rheumatologist, and she was also surprised that I was told not to drink coffee - she's given me the go-ahead on decaf, and said she'd look into the real stuff. I recall reading it in a cyclophosphamide info sheet - along with garlic and ginseng and anything else that might boost my immune system. So they said no coffee, no tea, no herbal teas just to be safe... I think the pharmasist might have gotten a little intimidated at a certain moment in the hospital by the internal med doc (who was the most peaceful, gentle soul ever) and just gave me a knee jerk reaction answer and told me to stay off everything.

[marta]

Oh, I checked out the 'All Star Conference' in California. That looks like a great thing for people. Do they happen often or once every couple of years? I'd love to attend something like that at some point when I'm feeling a little stronger and more with it.

[Jack]

No coffee?
It is the only thing that keeps me standing up! (although I still have to use crutches )

[JanW]

They do the conference every two years. This is the first time it's being done in the Western U.S.

I've not heard of anyone on her having to give up coffee -- I guess that some who try various anti-inflammatory diets here do give it up, but that's one instance where I prefer to let the drugs do the work!

[marta]

No coffee?
It is the only thing that keeps me standing up! (although I still have to use crutches )

Hi Jack,

Yeah, that used to keep me standing up me too before I got diagnosed, and when they told me I can't have it, I thought I'd drop.

How long have you been dealing with this thing? I saw that you were diagnosed while vacationing in on a beach in Italy in a different thread. What a total bummer and a gross way to end a vacation...

Hope you're having more good days than bad days.

[Sangye]

Welcome Marta and Cubby.

Marta, I just love your sense of humor. I'm glad you're doing well. It's early days and hopefully things will keep progressing nicely. I didn't catch if your docs are actually Wegs specialists. (Those are docs who see hundreds of Weggies.) No matter how amazing your docs may seem right now, they will not be skilled enough to manage Wegs, especially if any complications arise. It can deteriorate quickly. My case was straightforward once it was dx'ed but within a few days took turns that put all my docs in over their heads.

Cubby, what a great friend you are. So many friends will abandon those with a chronic serious illness. I was absolutely shocked at who remained and who did not after my own dx. Some took months to fall away. Please keep posting here. We love to help anyone with Wegs and those who care for them.