Words from a friend of Al's

[Dirty Don]

"life is precious and uncertain and we need to enjoy it as much as possible" -drz

This IS what you learned and it is also the only thing you can be sure of...well spoken...

[delorisdoe]

Thanks for sharing this Anne and thankyou to Al's friend.
I hope putting this in writing has helped her with her grieving process.

To me though, it still doesn't make sense. I'm sorry if it is wrong of me to write this, but something still doesn't make sense to me.
Al was a fountain of knowledge and with this knowledge he imparted to us the need to be careful, to be vigilant and to always look after number one.
It just doesn't sound like the Al that I know of, to want to go with the flow.....and to, especially, relinquish his diet for such a long period of time. He always seemed so careful/cautious of himself.
I wonder if he knew.......if he knew that this was going to be his final hurrah.

We all still have much to learn with this sucky disease.

I hope you are resting, Al, and are forever.......pain free.

From the perspective of someone who was in remission for a long time-7-8 years-I can tell you that I always thought I "knew" wegs and what to expect. I found myself only looking for signs and symptoms I previously had and paying too much attention to those symptoms while ignoring or passing off other ones. I almost died form a blood infection last year because of this way of thinking. I am intelligent and have had wegs for many years but my knowledge of what it is and the symptoms are a curse at times. Al was not ever really in remission but he was doing better and he was very smart and knowledgable but this illness does not follow a path and denial is a strong deterent. I wont try to understand what he was thinking but for sure one thing wegeners has given me is a messed up version of "sick".

[BrianR]

Hi all.

I have not written in quite some time and, rather than create a new thread, I thought best to post here. First off I would like to say how much Leigh's post resonates with me. "Sick" means different things to different people. Perspective is in the eye of the beholder. Many (probably most) of you do not really realize how tough you really are. Life is too short for all of us. Rest in peace Al and Jack. Our time will come too, un-sick and sick alike. Those of us not afflicted with life-threatening diseases usually take life too much for granted. I have not personally met anyone of you except Phil and his family (hi Phil!) and nonetheless have a great deal of respect and love for you all. You are a challenged yet very tough lot. I do not post often at all but I read and keep up. Stay strong all and reach high.

Now I am going to have a Grappa (to Al and Jack) and toast all of you; my FRIENDS!

[pberggren1]

Hi Brian. Hope you guys are doing well. Sneak lots of Grappa while Marta is not around.....lol.

I know with every little symptom now I discuss it with my doc the each week, go for labs, talk with you guys about it, talk with many others about it. Since my second flare in 2007 I have been every more vigilant. Having a good Wegs doc helps tremendously. If he moved far away I would be tempted to go with him.

[drz]

From the perspective of someone who was in remission for a long time-7-8 years-I can tell you that I always thought I "knew" wegs and what to expect. I found myself only looking for signs and symptoms I previously had and paying too much attention to those symptoms while ignoring or passing off other ones. I almost died form a blood infection last year because of this way of thinking. I am intelligent and have had wegs for many years but my knowledge of what it is and the symptoms are a curse at times. Al was not ever really in remission but he was doing better and he was very smart and knowledgable but this illness does not follow a path and denial is a strong deterent. I wont try to understand what he was thinking but for sure one thing wegeners has given me is a messed up version of "sick".

In hindsight is there anything you could have done to minimize this risk from a bad blood infection? Any helpful advice you can share that might help some one avoid such an experience. What were the warning signs you failed to heed?

[annekat]

In hindsight is there anything you could have done to minimize this risk from a bad blood infection? Any helpful advice you can share that might help some one avoid such an experience. What were the warning signs you failed to heed?

I'm interested in this, too, since Al died of a blood infection, if I'm not mistaken. So I guess it could happen to any of us. Scary.