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coffeelover
03-02-2009, 12:39 PM
:)I spent the weekend with relatives that had no idea of what I have gone through. I spent the weekend explaining to them the significance of this disease and although they try to understand, I do not believe they really do. But, it did help to share my story with people and as short lived as this help is.....I needed it.
I couldn't wait to get home to check out this forum as I know all of you understand and YOU are what really makes this disease managable.
I hope I can be of as much help for you all
Lisa Coffeelover

Sangye
03-02-2009, 02:14 PM
I hope I can be of as much help for you all
Lisa Coffeelover

I'm sure you will! Everyone's experience is so different, that we all have so much to contribute. Meanwhile, your photo is making me laugh-- that's some greatly appreciated laughter! :)

andrew
03-02-2009, 07:19 PM
Hi Lisa...
It's good that you could at least try and explain it to people that were willing to listen. Many of us don't LOOK sick and because we don't bleed all over the place and have plaster casts or limbs missing, many don't or won't listen.

I found this link a while ago that may help too: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

crackers
03-03-2009, 04:13 AM
i've found it's easier to write the name down and tell people to google it.those that are genuinely interested will do that and those that aren't......well.i've seen the lights go out in so many pairs of eyes as i try to explain the WG experience that now when i'm asked how i am i just say " ok ".it's easier.
john.

coffeelover
03-03-2009, 09:05 AM
good idea! You are right the lights go out and suddenly I am hearing about their ailment that is not even close to as serious.....Ah life! Interesting huh.

coffeelover
03-03-2009, 09:06 AM
Yes, my doggie can certainly take good pics! ha ha! Another thing I have done just this past weekend is Blinged up my trach tube. Noew it looks more like a necklace and less like a "medical" thing. Hows that for moving forward?

coffeelover
03-03-2009, 09:09 AM
exactly! We don't look sick. I tend to remind people that because I am getting along OK and do not look sick, that I really am suffering from a disease that is quite serious. Ultimately, I prefer not to be compared to their "elective" knee surgeries etc.......But that may be my bad attitude coming out.
On a positive note....I have decided to make the best of my trach and have boutght some jewelry to "bling" it up. Who knows I could start a new trend. Trach jewelry!

Sangye
03-03-2009, 09:16 AM
Blinged up your trach tube-- that is hilarious. And if no one understands, you can tell them, "Well, trach it or leave it!"

crackers
03-03-2009, 12:05 PM
omg another symptom of WG............bad jokes.lol
john.