Here's a project for you...

[andrew]

Ok so I knew this great guy called Bruce. He ran wegenersgranulomatosis.net (later vasculitis-patient.com) which was essentially an encyclopedia of information for WG and other Vasculitis patients. Some of you may remember it.

I haven't heard from Bruce for a long time. Emails go unanswered and his website has been down for a fair while. I assume the worst. Anyhoo, I've resurrected his website under a different address. Whether this is temporary or permanent is yet to be determined.

This is where you lot come in. I need you to browse the website and tell me what you think. Is the information still relevant? Is it worthwhile keeping it active? Really no trouble at all to do that - just wondering what your opinion is. He worked for years on it collecting and collating and I'd hate to see it go to waste. I've re-purposed a web address for the purposes of this exercise.

If you have a few hours to spare go here and have a look: Vasculitis Patient Information (http://wegeners-gpa.com/)

Let me know what you think...

[Dirty Don]

A bit overwhelming at first. Lots of good detailed info. Mostly up to date. But, I'd think most of us wouldn't read it from end to end. If you can maintain a link to it, it may be just enuff for those who want that kind of info. Very interesting.

[andrew]

Yes there's certainly a lot of stuff there and yes it is overwhelming :) It's re-designed from the old setup too. That was waaaaay less user-friendly.

[drz]

I agree with Don. I think it looks too cluttered and not enough spacing between lines for easy reading and that makes it looks rather overwhelming and harder to read than it actually is. But lot of good info. If people start using using it a lot then the old info would be detected by many readers i think.

[Alysia]

Thanks for being thoughtful, andrew.

Lots of info in this site. Not enough about rtx. Nothing about bactrim. And we are not there in the support section. It can be a good link to make it sticky.

Who is Bruce ?

[andrew]

Thanks for being thoughtful, andrew.

Lots of info in this site. Not enough about rtx. Nothing about bactrim. And we are not there in the support section. It can be a good link to make it sticky.

Who is Bruce ?

I'll see if I can edit the site. I'm not sure how it's set up yet. I might be able to space the lines better at least.

Bruce is another Weggie I met through the old forum before it became this one. We kept in touch via email. He was very busy with his site and other forums so didn't have time to participate in this one. If he's still around he'll be in his mid-80s but I suspect not.

[mishb]

The Vasculitis Foundation have what is called the Bruce MacDonald Spirit Award, which is awarded to outstanding volunteers of the foundation.

I have sent them a message to see if they know what happened to Bruce.
Hopefully they reply so that you will know, one way or another.

[andrew]

The Vasculitis Foundation have what is called the Bruce MacDonald Spirit Award, which is awarded to outstanding volunteers of the foundation.

I have sent them a message to see if they know what happened to Bruce.
Hopefully they reply so that you will know, one way or another.

Thanks Michelle!

[vdub]

That's really strange that it should just up and disappear. Even the domain is history and can be re-registered if you wanted.

If anyone did want to play with it, I know of a program that will download an entire site to their local system.

[andrew]

That's really strange that it should just up and disappear. Even the domain is history and can be re-registered if you wanted.

If anyone did want to play with it, I know of a program that will download an entire site to their local system.

I didn't even think to check the domain. Might pick it up again. The site is actually on my server so I can hack away at it there :)

[Geoff]

Good info and you can tell its written by a Weggie and not a doctor!

Too good to lose Andrew and I also liked how quickly the various pages loaded.

Some kind of link via a reference library would or could be invaluable to newly diagnosed or those looking for answers.

[andrew]

Good info and you can tell its written by a Weggie and not a doctor!

Too good to lose Andrew and I also liked how quickly the various pages loaded.

Some kind of link via a reference library would or could be invaluable to newly diagnosed or those looking for answers.

Thanks Geoff! I'm going to get the domain back and link it properly from various sites. It's on my list for some time in the next couple of weeks :)

[andrew]

Okey do the website is now available at Vasculitis-Patient.com (http://Vasculitis-Patient.com) which is the name it used to be. I'll get a banner/link to it set up for the top of the forum pages too.

[MikeG-2012]

Smoking loading from across the pond here. Very very very fast between pages.

Thanks for archiving all this stuff Andrew.

How's business down under?

[andrew]

Smoking loading from across the pond here. Very very very fast between pages.

Thanks for archiving all this stuff Andrew.

How's business down under?

The server is actually located just up the road from you in central Chicago so if it wasn't loading like a cut cat for you I'd be having some serious words with my friends at the data centre :)

Business is good. Paying the rent and keeping me in cereal and sandwiches :)

[MikeG-2012]

The server is actually located just up the road from you in central Chicago so if it wasn't loading like a cut cat for you I'd be having some serious words with my friends at the data centre :)

Business is good. Paying the rent and keeping me in cereal and sandwiches :)


Makes sense. We're on a 100 GB fiber here at the college, and I wouldn't be surprised if that our iFiber ring of .edu institutions wasn't connected to another one that is connected to another one...

Glad you're not starving, but you didn't say you had enough for a couple pints a week! (-8

[andrew]

Makes sense. We're on a 100 GB fiber here at the college, and I wouldn't be surprised if that our iFiber ring of .edu institutions wasn't connected to another one that is connected to another one...

Glad you're not starving, but you didn't say you had enough for a couple pints a week! (-8

100GB fibre huh? Now you're just bragging. I have 3GB copper. The latest in 19th century technology :)

No definitely not starving. Actually all but gave up the booze last year. I've sampled it once or twice but that's about it. I drink straight water now :)

[vdub]

Actually all but gave up the booze last year. I've sampled it once or twice but that's about it. I drink straight water now.
Sadly, that is my situation, too. Gave up all booze about 3 or 4 years ago. The meds just kept getting in the way. I drink Arnold Palmers now.

[Pete]

Pretty much gave up booze while I was on mtx. Still enjoy a cold beer (especially during our trip to Europe) and an occasional glass of wine now and then. I did develop a fondness for Arnold Palmers, but now avoid sweet tea in the mix...

[drz]

Some of the meds stress the liver like AZA so it is best to avoid over loading the liver with lot of alcohol as then the enzymes get out of wack. I too avoided any alcohol for many months when my treatment began and my current consumption is very minimal, maybe an ounce or two a month or every other month. Like Pete I still enjoy a beer now and then and a glass of wine at times.

[andrew]

I'm not sure whether it was a function of me getting older or whether it was the WG or a combination of both but I got sick of feeling so very sub-par after drinking booze. One marked change that I've noticed over the time since is my reaction times have hugely improved and my brain is (mostly) a bit clearer. Small victories but still ones to be celebrated. The effects from WG still reach most parts of my life when I stop to think about it but I'm not as sluggish as I once was. As for Arnold Palmers...for me I'll stick to water and coffee. Mocktails for me are like decaffeinated coffee - why bother? :lol::lol::lol::lol::lol::lol::lol:

Edit: might be time for me to change my pic hahahahaha

[mishb]

Andrew, there's always the tutu options :flapper::lol::lol:

[MikeG-2012]

Edit: might be time for me to change my pic hahahahaha

Let me know. I'm having fun with ths MG Racing guy on another thread... (-8

Yea, gave it up too. Makes the one a year I have that much sweeter though. <sigh>

Bragging about work connection , yes. BUT, my connection at home is less than 1mb. Wireless 900 MHz connection to a water tower 3 miles away. No Netflix at our house.

[andrew]

Let me know. I'm having fun with ths MG Racing guy on another thread... (-8

Yea, gave it up too. Makes the one a year I have that much sweeter though. <sigh>

Bragging about work connection , yes. BUT, my connection at home is less than 1mb. Wireless 900 MHz connection to a water tower 3 miles away. No Netflix at our house.

Haha yeah MG-guy looks great sitting in his buggy :) Got some ideas for my pic?

Ok then your home connection makes me feel better :) Similar issues with most people outside built-up areas here in Oz too. Were apparently getting a new National Broadband Network which seems to deliver slightly faster speeds at double the price. Why not! It's only costing the country $45 Billion.....and having Fibre to the node and running over copper for the last hop. I'll stop there because I get too emotional when I discuss it :)