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

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

    I thought it would be interesting to hear from others their experiences with things that WG has brought into their life that they might not otherwise have had.

    It could be anything. Friends , empathy , knowledge. I don't want to try and define or limit this but open it up to anything that has been a net positive. It could be things you've had to learn to survive or cope. Things that were a break through on a personal level for dealing with the disease. Maybe a good medical trick that helped at just the right time.

    I'm thinking you don't have to try and start with the MOST important but simply share things- maybe little, maybe big. Share more than once. I know I have a fair list after having this thing for over 30 years.

    So, I'll prime the discussion and pick something. hmmmm

    I know one thing that was a real blessing to me was to be able to help my family members with their medical problems. If I had not spent so much time and effort in the medical system I would not have known anything about how to help them in their time of need.
    I got to spend time with my dad helping him in his last days and I had a lot of insight into the things that could bring him comfort and ease. If I had never been sick I would have been clueless and would have felt bad that I didn't know what to do to help him.

    I knew a fair amount about medications and I think more importantly I was able to know how to comfort him when he was no longer able to talk and tell us what he needed. He lay in the bed for long periods of time and from personal experience I knew the absolute heaven it was to sit up and simply be upright for periods of time. I would help him up on the side of the bed and just sit with him.
    When he lay back down I could see relief and deep relaxation come over him. I would never have thought of this without WG as my teacher.

    So how about you guys?

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    Wg brought me the love of my life, my beautiful Phil, through this forum (Thanks God and thank you andrew). I am grateful for the time we shared, and for Phil's sweet eternal love ♡♡♡

    2015-07-10 22.02.43.jpg
    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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    Kirk, I was so sure that you were going to say US
    The one good thing that Wegeners has brought to my life is - you guys and gals

    Seriously, as an adult I have always been a loner. My husband and I have friends but not ones that we get together with, only old school mates that we never actually see.
    We are both very quiet (yes, believe it or not) and even after 30 years of marriage, we enjoy each others company the most. We were never ones to go to parties or out to pubs etc, because I don't drink. so it wasn't our scene.
    Unfortunately, this made our two daughters very anti social as well, and is probably the reason they both work with me.

    Having you guys and this group, and also creating a support group for members in Australia and New Zealand, has brought me out a little bit.
    I enjoy meeting all of the new weggies that I can have a cuppa with. I still don't like meeting people in general, but weggies are different.
    I'm still not much into the talking scene, but I try and am getting better.

    I also agree with you in regards to the medical issues. Empathy is also a big one for me. I now have a lot more patience for people.

    I think (I hope) I have more friends than I have ever had before - love you all
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Well of COURSE its you guys Michelle - that's why I had to say the list can't be in order. There are too many things at the top. I'm surprised to learn these things about you .
    I just always assumed you were a major politician or something- maybe the mayor of Alice Springs?

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    Nice Thread!

    People think I am mad when I say getting WG was the best thing in my life. Of course, literaly thats rubbish but I have learnt to count my blessings in the past 8 years and achieved a very different outlook on life.

    1) I have made internet friends around the world and been very fortunate to have met some of them. You may have seen the pictures (Close encounters...)
    2) I realise the true worth of most things in my life and am grateful for every little thing.
    3) I am in awe of the fantastic medical staff working here in the NHS and love meeting them at my hospital visits.

    I will leave it there for the moment and come back to this thread later!!

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    The first thing that comes to mind for me, too, is this group of people and the friendships I have made here. I'm just sorry that we all have to have WG in order to be friends! But really, there wouldn't have been any other way.

    I suppose WG has been character building for me, too, improved me as a person in some ways, but I'll have to think a little harder in order to elucidate that a little better.....
    Anne, dx'ed April 2011

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    Yeah, the character building part is not so easy to put words to. I do know for an absolute fact that I would have been a very , very different person without wg.
    It brings to mind a favorite saying from James Allan - circumstances do not make the man, they reveal him to himself. I remember pondering deeply what kind of man I wanted to see emerge from rather severe circumstance. I realized that not only did this illness strip away the veneer and reveal what I was but also allowed me some choice to then improve.

    If I had lived a comfortable life I would not have had to stretch my character to rise to my circumstance. Of course I can not say I was entirely successful.

    I am grateful that , for whatever cosmic reason, wg has selected such great people to navigate the path and share the journey.

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    I agree, for the most part, as creepy and wicked as WG is, it has excellent taste in people, and this forum is the evidence!
    Anne, dx'ed April 2011

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    Quote Originally Posted by me2 View Post
    I just always assumed you were a major politician or something- maybe the mayor of Alice Springs?
    I must work on that - one of the only places in Oz that I have never been too

    Question: why is it that WG chose to habitat the bodies of awesome people?

    I'm not just saying this, it is actually true.
    I am in other groups for RA and Lupus and Mixed Connective Tissue Disease, and for some reason, people in these groups lack something. hey are not as friendly, not as caring and they certainly don't have a funny bone.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Question: why is it that WG chose to habitat the bodies of awesome people?

    I'm not just saying this, it is actually true.
    I am in other groups for RA and Lupus and Mixed Connective Tissue Disease, and for some reason, people in these groups lack something. hey are not as friendly, not as caring and they certainly don't have a funny bone.[/QUOTE]

    I don't know. I first became aware of this many years ago at a Wegener's Symposium in Kansas City. One of the docs that was presenting there said that of all the rare diseases WG people were by far the most organized and pro-active. I could tell he wasn't just saying it but that it was true. Very curious.

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