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Thread: Article on invisible illnesses

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    Default Article on invisible illnesses

    Thought this was well written and interesting.

    Do You Really Want to Know How I am Feeling? - Invisible Illness Awareness Week : Invisible Illness Awareness Week

    And while I appreciate the well-intentioned remarks I ask for one thing in return.Don’t ask how I’m doing (with the subtext of bringing up my health) if you’re not willing to hear the truth.
    “I’m better, but it takes a lot of work and it hasn’t been easy.” And trust me, I’ll know you aren’t willing to hear the truth because you will get awkward and you will change the topic.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    most people don't really want to hear about an illness that never ends, like ours
    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.

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    Quote Originally Posted by Wegetarian View Post
    This link doesn't work for me. I just get a gator and error message.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Didn't work for me either
    Life isn't about how you survive the storm, but how to dance in the rain !

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    I think they fubared something. The entire domain http://invisibleillnessweek.com/ seems to be pointing to that gator thingy.. Ironically the gator add says they have unmetered bandwith, which I guess is good since I was worried that I killed their site by sending so many wegs there by linking to them

    Hopefully it will work tomorrow again.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Quote Originally Posted by Debra C View Post
    Didn't work for me either
    Me either.
    Anne, dx'ed April 2011

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    I was a guest blogger last week or something on that website. Seems like it had good information. I think everyone should read this ...

    The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness

    The spoon theory really speaks about what we go through every day. I try to think of this with everything that I do!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    It works for me now. Maybe my internet is better than yours
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Quote Originally Posted by Wegetarian View Post
    It works for me now. Maybe my internet is better than yours
    Works for me now, too. But too tired to read it right now! maybe tomorrow. Thanks for sharing it.
    Anne, dx'ed April 2011

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    Quote Originally Posted by NikkiNicole View Post

    The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness

    The spoon theory really speaks about what we go through every day. I try to think of this with everything that I do!
    A really good analogy.

    I always cope with my level of health because of 1 reason.....I know it will only get worse.
    I am constantly thinking "if only I can stay at this level". Even though I can not work, can not walk far, can not play football with my youngest, I'm in constant pain, have no energy (the list goes on and on), I still know that, generally speaking, my health is in a better state today than it will be next year. I know realistically that I will die at a younger age than I should have, had I not got WG. I also know that my early death probably won't be a quick painless one, but a fairly long painful death. How can I possibly be miserable how I feel today, when what I know will happen in the future?

    I hope this doesn't come across as too depressive or upsetting. The point I'm trying to make is when you have a serious chronic illness don't constantly look back at how well you used to be and all the things you used to be able to do. Concentrate on what you can still do, as tomorrow you might lose that ability too.

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