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Thread: Why I am grateful to have Wegener's

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    Wink Why I am grateful to have Wegener's

    OK, I am not crazy, so I am not actually happy about Wegener's. On the other hand I have gained much by having it.

    -- my lack of energy has forced me to empty my day of all but the most important things in life.
    -- I married my beloved now rather than later.
    -- I realized that I will not be defined by a disease or a demographic factor.
    -- I have decided that I am not a victim
    -- I have had to overcome my aversion to solitude
    -- I have started taking much better care of myself
    -- I have faced the possibility of my own mortality. You can't really live until you are prepared to die IMHO
    -- I cherish the good in each day.
    -- I have, in my solitude, fatigue and pain faced and come to peace with many old emotional wounds and hurts
    -- I have found the courage to choose to live as fully as possible every day that I have
    -- I have decided to hope and not despair
    -- I have found that it is OK to have bad days, be afraid, get angry, be sad, despair, lose perspective

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    I feel the same way. I've also learned that I can be grateful for Wegs in general but still be upset about the day-to-day suffering it causes me. I've had people tell me that if I were truly grateful I'd be smiling about it all the time. They usually get an earful from me. LOL

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    I just think it is crap. I'm sure I would not be a better or worse person if I did not have the disease, but I would be able to do stuff and not be in pain all the time. I'm sure I could work out some positives, but I don't feel the need. I don't go around depressed, I just accept my lot and get on with what little I can.
    Jack

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    I am happy to be alive today and thankful that I can eat, breathe, talk, hear and walk. I do have a little envy and jealousy of others who can do more and live their life less limited.

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    Quote Originally Posted by Jack View Post
    I just think it is crap. I'm sure I would not be a better or worse person if I did not have the disease, but I would be able to do stuff and not be in pain all the time. I'm sure I could work out some positives, but I don't feel the need. I don't go around depressed, I just accept my lot and get on with what little I can.
    Thanks for the candid response Jack! I really do appreciate it. For me this has been a spiritual experience in many ways. In many other ways it has been pure crap too.

    I also think it is crap that I am fat and 52 years old, and have so far NOT found a spiritually redeeming value in either.

    But yes, the whole thing is generaly crappy crap crap crap. Still... I have learned much from the experience. I've never had anything slow me down before. Honestly I have always been able to knuckle under and motor through anything and everything... until now. I wouldn't wish it on myself, but for me it has been worthwhile.

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    Hmmm.... not proud of this, but another advantage is that I can get seating in most restaurants immediately. I just tell them I have an incurable autoimmune disease. I started doing this to lighten things up for my three boys, because I didn't want them to see me defeated. I am transparent with them, and everyone. But I refuse to live in fear or defeat. I will never surrender to being "poor little old me."

    Another benefit - I do less housework.
    Last edited by Minneapolismark; 12-17-2010 at 10:17 AM.

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    Default another positive

    On the plus side I have a legal right to take narcotics.

    On the negative side I need them.

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    Mark, Wegs isn't "probably terminal." I tell people it can be life-threatening, which is true. I sure don't want to interfere with you getting fast seating in restaurants (especially since you're on pred!)--I'm just pointing this out to newbies who might not know.

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    In fact, WG is not only not terminal, it's doesn't even necessarily shorten the length of your life. There simply hasn't been enough research in this area.

    It can be life threatening and life ending if not treated with the 'respect' it deserves by healthcare professionals, and we have seen that right on this thread.

    Wegs means business.

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    Right. good point. my doc had originally described it as such. The official phrase seems to be incurable with a high degree of morbidity.

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