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

  1. #51
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    Originally Posted by Lightwarrior
    I have learned to be grateful, that help and compassion are all around me.
    I have learned to slow down (okay, that may be a bit of a lie) lets say I am learning to slow down.
    I have learned that most people will be kind and compassionate if you give them the opportunity to be that way.
    I have learned that some people just aren't kind and compassionate and it is what is and I don't need to "fix" them.
    I have learned that when I think my friends and kids don't "get it" it is usually my own pity party and when I let them back in they do "get it".
    I have learned that the universe gives me what I need and I should not worry about the future so much.
    I have learned that death is not scary, just part of the journey.
    I have learned that I value the people in this group way more than I could have imagined.



    Quote Originally Posted by drz View Post
    I miss her wisdom and compassion. It is nice and reassuring to read her second to last line. Her journey is now complete!
    What wisdom Lightwarrior showed in her post. Amazing and impressive!
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #52
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    Default On my journey I have learned:

    • I'm not afraid of dying
    • the true meaning of fear (for me, at least)
    • whatever happens, I need to know why (not "why me?" but "i want to understand, so explain it to me in all the gory detail - s'cuse me while I cough up a lung")
    • doctors LOVE explaining the "why" (er, at least the good ones do)
    • enough biology/physiology to astonish a medical professional
    • the real-world application of "that which doth not kill thee maketh thyself stronger" (in oh so many ways)
    • the flesh may be weak but the spirit is bloody-minded enough to do it anyway (often despite the doctor-or-nurses orders)
    • bad drugs can be good, good drugs can be bad, all drugs are bad (except when they're the drugs keeping you above the daisies, but even then they're bad)
    • listen to your body, it's trying to tell you something
    • sisyphus had it easy

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    What a great subject! WG has such a wide ranging impact on sufferers. Pain, suffering and a complete change to ones outlook on life. It's definitely not all bad.

    In the earlier days of my disease, it took about one and a half years before I accepted the idea that my life may be shortened. I actually felt good about death. My thoughts were that it meant I didn't have to worry so much about having to work into my 70s to ensure I have enough money to survive to the end of a natural life. What a great thought.

    I remember saying to friends that now I know how my life is going to end. It takes away so much uncertainty.

    The other single and pressingly urgent thought was that I only had one close friend in my life. I had many acquaintances but only one close friend. I decided to get in touch with all my friends and bring them together, introduce them all to each other and create a large group of friends for all to share for life. It took at least a year but it was a success. Now I would have trouble naming them all. What an incredible group of friends.

    Ive heard it said that at the time of death if you have one close friend you have done well. Now my friends and I have many close friends. It's such a great feeling.

  4. #54
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    Quote Originally Posted by PJ2010 View Post
    What a great subject! It's such a great feeling.
    Well then, when's your wake...sorry........neeeeeeed coffffffeeeeeeee!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Your invited mate but I'm sure they won't serve coffee!!

  6. #56
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    Five years later I think i have also learned to live with more uncertainty and to be more flexible in my plans since they often need to be modified to accommodate "the spoons available to me". It is easier to accept what is when you give up your preconceived ideas about how things should be. As Popeye said, "Things is what they is, and I am what I am". So then i can relax more and enjoy the roller coaster ride of ups and downs.
    Knowledge is power! Wisdom is using it to make good decisions!

  7. #57
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    all I can say is wow,,,,,, but I have learnt one thing,,, and that is how much I love my wife,,,,,, after everything I have put her through this last 12 months and she is still around and ready for more, even though we have no idea what the future holds or how long we could call the future.
    during all this we also had the privilege of being blessed with a beautiful grandson, which makes me more determined to hang on as long as is possible, if the devil is about I am ready to sign contracts

  8. #58
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    Quote Originally Posted by drz View Post
    I am really impressed with the wisdom expressed in many of these posts and want to thank those who shared them. I have learned a lot from reading them and find it helpful to go back and re-read them. There are some really great people here and learning about them qualifies as another positive for me from having Wegener's disease because if I didn't have the horrible disease I most likely wouldn't be here.

    I read elsewhere about what a person learned from Wegs or similar disease and it was humility. Another person said they learned not to be so cocky and self sufficient. The disease and loss of ability taught them how to accept help from others. If one prides himself on being self sufficient, this would be a big change. Learning to accept help gracefully can be a difficult thing, but it also helps one learn to appreciate the kindness of others
    Lots of wisdom in this thread by members who were active here years ago. Right now I am working on learning to enjoy the help others are offering me since my mobility is limited by my broken foot. I also learned that one can be happy and have fun times even when your life space is limited by your illness or health condition.
    Knowledge is power! Wisdom is using it to make good decisions!

  9. #59
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    I hope your foot will soon heal!
    Living with WG/GPA since june 2010...

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    Quote Originally Posted by drz View Post
    Lots of wisdom in this thread by members who were active here years ago. Right now I am working on learning to enjoy the help others are offering me since my mobility is limited by my broken foot. I also learned that one can be happy and have fun times even when your life space is limited by your illness or health condition.
    made me tears to read this thread.... my beautiful Dr. Phil is added to the list of those who are now in another journey, Like Deb wrote so beautiful above...
    I have learned from wg about death. I am no longer afraid to die. one day, some other friends will read this thread and I will be among those who are making their journey at the other side... I feel peace about dying. maybe because I know that my sweetie will come to pick me up at the moment and that the reunion will be so joyful... we will spread butterflies and rainbows all over earth to let everyone knows how happy we are to be together. we will be in the presence of God.

    (maybe I shouldn't write this. if someone find it not in place, please let me know and I will edit or delete. a moment of being sincere for me, but I don't want to hurt anyone by it. sorry if I did.)
    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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