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Thread: Does it bother anyone else

  1. #41
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    umm thanks Anne

    There are actually lots of Aussie weggies on here that are also part of our fb Group........and they are all the best. I'm glad to say that Bek is also one.
    It is each and every one of them that make it fantastic.

    We had a big get together in September in Melbourne - 20 plus people turned up.
    Another big gathering then happened in Sydney in October (I think it was) and 10 or so turned up there.
    Then a couple of weeks later a few more in Newcastle.

    We are now in the early stages of planning a big meet up in Queensland for May next year.

    I'm sorry you missed the Sydney one Terry, but believe me, there will be more.

    If you are not on facebook Terry, then this forum is definitely the place to be, because everyone is awesome.........and we will try and let you all know when the next meeting is for each State.

    Thanks again Anne.
    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

  2. #42
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    You're welcome, Michelle!
    Anne, dx'ed April 2011

  3. #43
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    We have all gone through this conundrum in some way I'm sure. My wife used to get upset with me because I might skip church or something due to feeling bad and she would tell everyone how bad I looked and felt. The next week I'd be better and when asked how I was I'd say I was ok. She felt I was making her look like a fool. I finally told her I wasn't going to say I felt horrible when I didn't. I don't care to get sympathy so bad that I'll lie to get it.
    I have come to realize that I really don't want sympathy from anyone ever. I know this because when u get sympathy it is embarrassing for me or I reject it outright. I just want permission to feel bad when I do.
    I figure if you are relying on others understanding of your condition to feel better, you are going to be a very lonely, disappointed person. And with this disease it's hard not to be lonely and disappointed anyway.
    At least the folks here truly understand.... And even then there are differences of opinion on every subject.


    Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

  4. #44
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    By the way. I'm not saying that I gave perfected the technique, I struggle with wanting sympathy as much as anyone. I just keep telling myself that sympathy and understanding won't make it all go away.


    Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

  5. #45
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    I don't voluntarily offer up information about my condition anymore. I too have had a few people give me a frightened high brow when mentioning AI. Having a cochlear BAHA I get a lot of questions. If I must explain my condition; I simply tell people that I have a rare form of Vasculitis. Wegeners GPA. That usually satisfies their curiosity.

  6. #46
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    Default My specialist tells me I'm Not Dead Yet



    When trying to explain WEGs to people I find it helps to give them a landmark they recognise.

    "You know about MS? Well it's like that but instead of attacking your nerves it's attacking your blood vessels".

    It's an auto-immune condition, we have no cure, you can be great one day and in hospital fighting for your life the next, more often than not there are no external symptoms, the drug side-effects (for some people, at least) are only slightly better than dying, AND the drugs make you more susceptible to infection/disease, you can be perfectly fine for YEARS and then have a flare and rushing to hospital (remember I said there is no cure?), it's very likely to get worse over time, and every flare/as you get older the drugs work less.

    You spend every day looking for symptoms, wondering if "it's ONLY a little cough", wondering of those "spots" are actually purpurae haemorrhagica (yes I had a scare the other week, regularly scheduled blood work says it was "not the obvious") ....how much sun exposure is "excessive"? how can I tell BEFORE I suffer an extremely bad burn? (yes, there IS now a gadget-and-app for that)"... and basically doing a truly excellent imitation of a hypochondriac (except that you ARE actually suffering from a life-threatening disease).

    Them: "but you look FINE, are you SURE you're sick?"
    Me: (sigh) "I'm on high-dose immuno-suppressive drugs -> my immune-system is in a choke-hold and gasping for breath, if it ever responded to the point where I ACTUALLY had a fever I'd be off to hospital immediately."
    (been there, done that, spent 5 days on several flavours of high-dose IV antibiotics, surrounded by doctors with very worried looks) -> and it was "just a cold".

    Or, if you like scaring people:

    ... Do you know what it's like to drown in your own blood? I do. And it started with "just a cough". Now imagine what goes through my mind every time I start having "just a cough"....I spent two weeks in intensive-care in an induced coma, when I came out it for the first week getting my head wet in the shower induced a panic-attack because my body felt it was drowning. ... Tell me again how perfectly fine I am?

    Talk it up people! WEGs is a strain on your mental health almost as much as physical health.

    On the upside I've learnt so much about biology/physiology/medicine and various drugs that I pretty much qualify as "a medical specialist".
    Last edited by Pierre42; 11-22-2014 at 11:20 AM.

  7. #47
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    Quote Originally Posted by annekat View Post
    Important also to stress that it's in no way contagious. Especially if you are coughing uncontrollably, which luckily happens far less often for me now.
    I tell people that are sick that they are 1,000,000,000 (billion) times more contagious to ME than I am to them! (-8
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  8. #48
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    Quote Originally Posted by Pierre42 View Post



    Talk it up people! WEGs is a strain on your mental health almost as much as physical health.

    .
    Amen brother.



    Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

  9. #49
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    I agree, greenjeep, and well said, Pierre42. I'm really feeling it lately.
    Anne, dx'ed April 2011

  10. #50
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    You spend every day looking for symptoms
    I never really thought about it much, but you are soooooo right. I guess its an unconscious thing for the most part, but I do wake up every morning wondering what this ache or pain is. With a semi-big change in drugs last Jan, I am feeling better than I have in 5 years, but the last couple months have been troubling. A general fatigue and malaise seems to be setting in and no drug changes have taken place. A bit disturbing.

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