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Thread: Would it be proper to...

  1. #1
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    Default Would it be proper to...

    Contact the family of a Wegeners patient who has died and the funeral is tommorow May 10. I saw the obit the other day but missed the part where it stated he passed away after a long and courageous battle with "Wegeners disease". I am an aquaintence of a couple of his grand kids, one is my age and we attended the same school although were weren't friends, just schoolmates, he was one year ahead of me. I barely recall the family of the man that died but do know of them. I am upbeat at all times and have been thru alot besides Wegeners. To be honest, I feel like Wegeners is a lonely disease with the exception of these forums, I have never met another,much less heard of another weggie personally. I have heard of weggies after they're passing. I am at a point where I am in the hospital at least 3 or more times a year with my lungs which were destroyed from the wegeners and have been getting worse it seems by the month. I just feel like I would like to reach out to the family to not only give my condolences but to learn more about the disease that is reacking havoc with my life. Would it be too forward to approach the family? I have thought that I would wait a month before making contact with the grandson. Other than that, I can say that the grandson has been handleing my aunts investments left to her by her daughter, So Jeff if you happen to be on here and you live in Iowa, and by chance your family found this site at some point, I would like to visit with you.

  2. #2
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    Hi Tom.
    yes. it is a lonely illness. me too never met "live" any weggie. I think it is proper to visit the family, and also a kind thing to do. although it is yours need to hear what happened, it can be good for them. I believe they need to share things with someone who knows what WG is. I dont think you should wait month. here we come to visit the family in the week after the funeral. but each place with its habits.
    I hope you will feel better. Im sending you big hug, maybe it helps to feel less lonely
    take care of yourself, and please tell us how was it.
    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.

  3. #3
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    I would approach them for sure.
    Phil Berggren, dx 2003

  4. #4
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    Thanks forthe encouragment. I mentioned in my original post that if Jeff was in Iowa to contact me with the chancetht he, or a family member may have this site throughout their journey with the Wegeners family member. I worded it that way so as not to expose the families identity on the internet. Jeff, the grandson actually lives only a little more than 20 miles from me. I am going to call his office on Monday to see if I can meet with him. Funny how things happen. When my cousin passed last Oct, my aunt was getting stock reports from various investment firms that my cousin and her late husband had invested in over the years. My aunt had no clue whatthey were but asked me how much more money does she have to pay to settle the estate. Long story short, I informed her that they wanted to give her money and the main one was Jeffs investment company. I directed her to the attourney and Jeff. He told her to bring me along to help her understand it better and to help her with the decision as to re-invest and into what ect. She is 84 years old and still cuts hair for a living. So I do know that he would be receptive to seeing me and knows who I am. I am curious as to the struggled they had and how long he dealt with the wegs But first I will express my condolences and tell them about this site and maybe they could add something to the conversation at times. I try to get on here often but get tired easily and when I go to visit my aunt it is usually an eary start so I can get back home and rest and recharge my o2 tanks. To Alysia's point, I have never met a living wegs patient and I think the more I talk to live local people about it Im bound to find a wegs person sometime. I guess one of my goals would be not to leave this world and have someone in my town that also has wegs to say I never knew he had it too!

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