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Thread: One good thing Wegener's has brought into my life...

  1. #11
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    I totally agree with all the above posts... Geoff, I love this, because I feel the same way and people might think I'm nuts, but, hey, I am, so... Yes this sickness was a huge blessing in a very strange way... I always thought of myself as a person who wears their heart on their sleeve, but now, even more so... I've learned much needed patience, and take absolutely nothing for granted... My compassion for others is magnified and my overall understanding... Ive also met some of the most amazing people, and although not meeting face to face, feel as though i have... Getting to know others through their writing style to me reveals more than a face to face meeting, on so many different levels... I guess there are a lot of gifts that came from this, but most important of all, was my being brought closer to God... Then He takes care of the rest, support and friendship, ect.... Would have preferred an easier way, but it is what it is... One of my favorite sayings! Thank you, to everyone here, its really awesome seeing people suppost each other and exceptance is an awesome thing... The world seems nuts to me, so coming here feels nice, different... Thank you, Andrew for making this group possible, and all that help... Debra...
    Live,love,and laugh...

  2. #12
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    This question does have to be addressed in sections or at different times. Having this forum to communicate with other Wegener's people and their families, has really been a life saver at times. I have learned thru you my friends, that not everything is a crisis. I have also gained some self confidence from sharing and trying to calm some storms for others, as you guys do the same for me. I love the fact that even if I don't feel like talking, I can always come here to read, learn and have compassion.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  3. #13
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    Good question. I would have said nothing good came of it. But I have made a couple of very good friends, and "met" lovely people on this forum.
    I wasn't diagnosed until I was almost 30. And have to say up till then, my life was very good. I seemed to sail through everything, and because of this I don't think I had much empathy or sympathy for people who may have had difficulties. Definitely become more patient and less controlling. Also I was very vain, but saddle nose and prednisone weight puts an end to that. So maybe I have become a nicer person...just maybe...

  4. #14
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    Well its been an exotic experience for sure.. I do think the posts about it building character and empathy are the big ones. I couldn't really understand sick people the same way I do now, and also realize that not all diseases are easily visible nor can I know how they feel.

    In a weird way its also made me less fear dying. Its not something I thought about much before, or know. But I did consider it a lot more scary before. I think I used to be a person who lived a lot in the moment before, but now even more so. In a way I've also became a bit more health obsessed - like I've always been fat, but now I've taken steps to eat healthier and exercise more as I try to make more healthful choices.

    Sometimes it can be a bit fun too, like say someone complains how they are going into some very minor surgery, and if I feel that they are just looking for attention I'll just say that I understand how they are feeling, and that I was also nervous when I was going for brain surgery
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Empathy.... I used to watch people park in the handicapped parking space, then get out of their car and walk into the store without any difficulty. I used to think they were just being lazy and using someone else's handicap sticker to get a good parking spot. I still think some are, but I now cut them some slack and don't have evil thoughts, because I have no idea what kinds of difficulties they are putting up with. The same with companion service dogs. Who am I to judge what they need?

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