Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Hi Lisa, I have found a great way of getting over this challenge, I was exactly in the same situation as you, with friends and aquaintences, most people that ask this question don't expect an honest answer, they use it as a kind of greeting, not as an equirey. As a few others have already said, I have spent many hours trying to explain what our illness is all about, to others who don't understand, and it's very tiring. But I have found a great tool now for this, it's a wonderful leaflet produced by John & Susan Mills of Vasculitis UK, called "Understanding Vasculitis" I now just give it anyone who asks me "how are you" it's then up to them to find out, if they are really interested. So far I have had very positive feedback from them, things like "oh wow I didn't think you were as ill, as that illness leaflet tells me, do you need any help with anything. It's the best thing I have found so far. And I use it when I go for blood tests etc at my local hospital, as most of the staff don't have any idea about this illness. I hope this has been of some use to you ?
Take care Acker
When I worked at the package store on base I used to reply to the "how are you?" With the old Michelob commercial slogan..... Some days are better than others. Otherwise I've gotten pretty good at telling people I'm okay. As stated by others, people that ask me that question don't really want to know the answer. They ask out of curtesy and polite conversation. The only ones that ask in genuine concern are family and other Wegs.
Thank you for the helpful responses! It's a catch 22 because people ask it as a greeting or pleasantly not really wanting a complete answer, but perhaps if they knew what we're really dealing with, they would care more. I will definitely follow Acker's example and provide more information (probably a link or email a PDF) to close friends or family who are genuinely interested. From now on, when someone asks in the, "I don't really care, just saying hello" tone, I'll stick with "okay", or "fine, and you?". It will spare me the puzzled, guilty or disbelieving (you're-kind-of-a-crazy-hypochondriac-I-now-want-to-escape-before-you-can-suck-me-into-a-conversation-about-your-symptoms) look, and spare them the discomfort of knowing they're avoiding caring or finding out. For the real jerks, I'll respond "do you really want to know?!?".
The is so true. I am a really good listener and when I say how are you to people had have issues I want to know/listen. This made me sad for a bit after getting so sick was those people really didn't want to take time to let me vent a little.
The ones that don't want to hear it get just fine.
Well said I wish I could say that to some!
Yesterday i had a lady i didn't know or recognize anyway come up to me at a celebration and say "Its really nice to see you up and around." My response was "It is great to be seen." I am guessing she knew I almost died four years from Wegs and knew my name but because of memory issues I don't always remember people or their names.
When others ask How are you? I usually respond with some thing like "I am still on green side of grass and walking around so I am doing good." I think they find that reassuring and I find it life affirming that I am still here and enjoying my life as it is now.
Last edited by drz; 05-21-2014 at 02:29 AM.
Knowledge is power! Wisdom is using it to make good decisions!
I have experienced the same thing drz. Sometimes I just can't remember someone.
My response sometimes is: I am still alive, therefore God is giving me a chance still.
Phil Berggren, dx 2003
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