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Thread: What I have learned from having Wegener's granulomatosis?

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    Default What I have learned from having Wegener's granulomatosis?

    Not a dam thing except it sucks!

    OK, that's my first reaction. Well, maybe there are some lessons to be learned if I dig deeper.

    One cannot be diagnosed with a chronic and rare disorder without it having some effect upon you.

    Certainly the near death experience taught me again or reminded me of what is important in life, and it isn't how many toys you have, or what's in the garage, or how you dress or any of those things like that.

    When I thought I was going to die, it seemed like an easy thing to do and not something very scary or frightening at all so death is not something to fear.

    It brought people back into my life that I have not seen or heard from in years. People and the relationships are what matters in life.

    I don't sweat the small things as much and most things are small things once you can breath. Being able to walk is also a big plus in life as is the ability to dress oneself and toilet oneself.

    Modesty is overrated when you are a patient. You are just an object to medical staff with medical and personal needs and anything they are doing to your body they have done hundreds of times so relax and let them do their job.

    Some thank you's and appreciation go a long way in making your care go easier.

    It helps to share your feelings and worries with staff but whining and bitching seldom improve things. A request for help goes a long, long way.

    Most staff care and want to help you and that is why they went into their line of work.

    Deal with today cause "Most of the stuff people worry about, ain't never gonna happen anyway.”

    OK, your turn! What have you learned?
    Last edited by drz; 04-06-2016 at 05:53 AM.

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    I've learned so much I might have to come back a number of times to answer.

    I've learned to be more compassionate towards others, whether they're sick or not. As "invisible" as Wegs is, I see that everyone suffers, in ways that are not always visible to me.

    I'm learning how to surrender in all the places I would not bend. Losing my excellent health, my practice and having to take drugs I thought I'd never put in my body, etc.... This has deeply changed me and I'm working to let go more and more of anything I cling to.

    I've learned a lot about impermanence.

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    I've learned to be grateful for all the things I used to take for granted. The simplest thing is the world to take advantage of is your health, and unfortunately you don't realize that until it's gone or compromised.

    I agree with the above statement, I've learned to be more compassionate to others. You never know what kind of battle someone else is waging.

    I also have learned that family and friends are really all that matters in life, nothing else is nearly as important. And since diagnosis, I have made a point to make time for the people who matter in my life. It is one of the few blessings in disguise that Wegs brings
    Nicole

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    I have learned that when I can't control things like WG, I can control my mind and through that I can find peace and happiness.

    I have learned that when I was so sick that I was bedridden, there were so many around me that were just waiting to pick me up!

    I have learned on this forum that I really am not the only person with WG.

    I have learned that when I have to spend a day in bed because I'm just too sick to face the day, I tell myself "it's OK" - it's just a TV catchup day.

    I have learned that bad things do happen to good people.

    Be back for more . . . . .

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    I have learned that when you are down and out you find out how important your family and friends really are!

    I have learned not to take the things for granted and to enjoy the little things in life.

    I have learned that life really to short! Make every day count and tell those people who are special in life how much they mean to you!

    Great post drz it was like you where reading my mind! Especially on the Modesty thing it kind of does go out the window! Can't wait to see other post!

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    I'm learning to be more patient with others. Most people don't realize how difficult my days are, and I have to assume that many people are having an equally difficult time even if it's not about their health.

    I've learned that I used to think I was entitled to good health because I ate right, exercised lots and took good care of myself.

    I'm learning to get more comfortable with uncertainty.

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    I have become very aware of death and learned that it is something everyone should build into their picture of what life is all about. Most people seem to think that they will live for ever, but I now realise that none of us do.

    I'm not morbid about this and neither do I dwell on the thought, but it is now there in the background and has become part of my life.
    Jack

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    Me too. It's very useful to be aware of death. Thinking of my own motivates me to use my life better, and thinking of others' helps me to have compassion.

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    I am flat out terrified of dying.

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    Try to look on it as an adventure. With all the medical care we are under it is unlikely that the actual event will be painful and there is nothing else to be frightened of.

    Of course, there is no guarantee that we will die of a Wegener's related problem. Most "normal" people don't, but something gets them in the end!
    Jack

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