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Thread: Does it bother anyone else

  1. #11
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    I don't really tell many people much about wegener's either. Once soon after my diagnosis at my lung doctor the nurse said a least I don't have an autoimmune disorder. She gave me a weird look when I told her it was.
    This past year my neighbor sent out an email that her labs came back and she doesn't have wegener's. I talked to her a few days later and asked her about if it was granulomatosis that she thought she had, I've lived near them for 10 years and never mentioned I had it. Found out her mom had it and passed away in the 70's after battling it for some years. And that's why she was worried she had it with some of her symptoms at the time.
    So I see a lot of us are fairly private with our disease but it can be Benifital to open up a little with people in our lives.
    Dx'd December 2000

  2. #12
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    Quote Originally Posted by annekat View Post
    Leigh! I've not been too bad. In many ways good. Always nice to see you on here and hope you've been doing well yourself! I forget what part of Canada you are in, whether it's the western or eastern part, or in the middle.
    Ontario. I am well. I am having a minor weg flare being treated by a little prednisone-al is turning over in his grave at my statement and phil is defending me to him. It is just a skin flare I supose but it has been the most painful thing besides childbirth I have ever endured. The pain is consuming my every day. The prednisone is working its magic. So it's all good.
    lightning crashes
    leigh

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    Quote Originally Posted by delorisdoe View Post
    Ontario. I am well. I am having a minor weg flare being treated by a little prednisone-al is turning over in his grave at my statement and phil is defending me to him. It is just a skin flare I supose but it has been the most painful thing besides childbirth I have ever endured. The pain is consuming my every day. The prednisone is working its magic. So it's all good.
    Prednisone always works for me to get over minor flares. I'm so sorry to hear about the pain, though. I have gotten by without any real pain anywhere so far. Maybe my nerve endings are shot or something. And I've never had a real skin flare, just a few red dots here and there. Interesting idea, Phil and Al encountering each other in heaven, arguing about stuff, discussing, whatever... I hope the pain recedes very soon.
    Anne, dx'ed April 2011

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    I have a huge extended family that is over 1000 miles away that is always asking about me so I keep a caring bridge blog. Only people I invite see it. I use it to keep my loved ones updated and it keeps things off social media. I do it because I want my face to face conversations to be about other things. I also want my teenagers to control how much their community knows about my condition. I'm missing my left eye so I can't hide my situation. I did get so mad when I was receiving treatment because if you had cancer you could get discounted parking. I was loosing my hair and was told I could get a free wig through the cancer society. I responded but I don't have cancer. The volunteer asked why I was taking chemo. I so wanted to say something sarcastic but I didn't.

    My son doesn't tell anyone but his closest friends that I'm sick. My daughter has given speeches and written reports about the disease. Everyone is so different when it comes to disclosure.

  5. #15
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    How does one raise awareness or even get more recognition for AI conditions than cancer - if you don't tell anyone about it.

    Can't have it both ways
    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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    Believe me I know it isn't a blip on the screen. Some people are not understanding, unless they have the disease. I personally don't care to tell people what I have and how it effects me. Maybe we need to enlighten more people to what the disease does or doesn't do so that their can be more research on Wegeners.
    Keep asking questions of your dr's and let people know how you are doing. Remember people are scared of what they don't understand.

  7. #17
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    This is a really interesting thread. I feel like there are two sides to deciding how and whether to explain Wegener's: the desire for privacy and normalcy on one hand, and the desire for connection with and caring from others on the other.

    It's also hard to explain the side effects of the various treatments: I feel like sometimes when I tell people that I'm on chemo drugs, they are skeptical because I've gained weight from pred and still have (most of) my hair. It's hard to break through preconceived notions about what chemo is and how horrid the side effects of pred can be.

    On the upside: Wegener's has taught me compassion. I used to be much less empathetic when people would tell me about their health issues and now I really try to listen and comfort those around me.

  8. #18
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    [QUOTE=morningsunshine;92194

    On the upside: Wegener's has taught me compassion. I used to be much less empathetic when people would tell me about their health issues and now I really try to listen and comfort those around me.[/QUOTE]


    It it did the opposite for me. I think to myself while people speak of what is wrong with them "we all have our problems...I don't need to hear about your sore back etc.".
    lightning crashes
    leigh

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    Quote Originally Posted by mishb View Post
    How does one raise awareness or even get more recognition for AI conditions than cancer - if you don't tell anyone about it.

    Can't have it both ways

    I have aves never felt the need to raise awareness. This sounds selfish I am sure but I don't think i would be any kind of embassador for wegeners as I think to be "raise awareness " type person you have to be passionate about it and I am mostly just annoyed, embarrassed, tired. Not passionate. I would not even know what to say. I hate making myself sound so horrible but it just feels so personal to me.
    lightning crashes
    leigh

  10. #20
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    Good post.

    I have to have a health interview (UK) on friday, to see if I really am 'sick'. I look okay, so goodness knows how this is going to turn out.

    I feel so unwell all the time now (i'm 33), and i'm not sure if i'm winning the battle with depression anymore.

    It's a very isolating disease.

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