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Thread: Still accepting new members?

  1. #1
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    Default Still accepting new members?

    Hi all,
    Do I need a nomination from another member?..... How long is the probationary period?...... Ha Ha, just kidding.
    Have been lurking here for a few months, hope you don't hold that against me....... and am now getting my head around the diagnosis, treatment etc.
    Your site has already helped considerably with my understanding of all things Wegeners.
    Looking back, I went through about 2 years of fatigue and unbelievable joint pain. Couldn't even stand up after dinner in the evenings.
    Eventually sinus issues surfaced about the same time as a cough started. Guess you all know that story. About six months later I was going deaf and also scleritis showed up at a time when my GP was on holidays.
    Nothing like letter openers being driven into your eyes is there?
    I went to my optician who sent me to an Opthamologist, boy was that a lucky break. He was on to it almost immediately.
    The Rheumatologist he sent me to was also straight on to it. After lengthy discussion he asked me to begin treatment immediately. The next week or so I seemed to visit every machine imaginable for lungs, liver, kidneys, brain, skeleton etc.
    I guess you have all been there.
    Apart from the things mentioned above, lung involvement is the only extra so far. Once again I am lucky.
    Anyway Im on Methotrexate and Prednisolone and settling into "the new normal". I cant work now so getting used to that as well. Only putting in 3-4 hours maximum of almost "normal" work (at home now) for me is frustrating, but obviously a lot of you would swap me any day. At least the vegie garden is looking the best it ever has!
    Well that's about it for now. Will have a couple of questions for the "experts" down the track a bit.
    Thanks for listening.

    The eternal optimist.
    Lucky.

  2. #2
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    Lucky? Yeah, I once had a 3-legged dog I named Lucky.... :-) Welcome to the forum!
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  3. #3
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    Welcome Lucky, sounds like you are on top of most things, or at least close, my Opthamologist, was the one who found it first, only just in front of my Rheumy. My Rheumy is the bestest, as soon as I saw her, she looked into my deep red eyes and told me what I Didn't want to hear( I know what you have, wegs), she then rang her husband who was in surgery(he is the bestest ENT surgeon) and told him she had another job for the afternoon whilst he was in surgery, raced me down to the hospital and admitted me, later that day the inside of my nose was rebuilt, so I consider myself to be very lucky, I'm on daily azathioprine, probable will be on it for some time, unless a magic cure is found, but SUCH IS LIFE........

    Hope you get on top of yours Quickly, all the best

    Regards Woz....

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    Quote Originally Posted by Lucky View Post
    The eternal optimist.
    Lucky.
    If nothing else is going your way at least you have the right attitude. Hang on to that, it may come in very handy even if your Weg troubles are minimal.

  5. #5
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    Welcome to the forum, Lucky. I lurked for awhile too... feels good, doesn't it, to come out in the open. This is a warm and welcoming community with lots of info and interesting stories, since Wegs is a little, or even a lot, different for everyone, as you know from your previous reading here. I hope we hear lots more from you, that your "'new normal" gets even better and better, and that you are declared in remission before too long. Thanks for your optimistic attitude.
    Last edited by annekat; 12-16-2015 at 06:37 AM.
    Anne, dx'ed April 2011

  6. #6
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    Lucky,hi.... The letter opener in the eye! Yes.... Don't feel bad for lurking three months,I lurked for over three years.... Finally came out,although I wish I hadn't needed to... U have a great attitude..... Take care of u, and you're garden.... Deb.

  7. #7
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    Quote Originally Posted by vdub View Post
    Lucky? Yeah, I once had a 3-legged dog I named Lucky.... :-) Welcome to the forum!
    Was he blind and deaf too???
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  8. #8
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    Welcome to the club, Lucky!! Hope your health improves and that your "new normal" is close to your "old normal".
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  9. #9
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    Hi all, thanks for the welcomes. Have been getting up to speed with the knowledge from older posts. Some great experience here that's for sure. It has saved me a few questions. I wont be here daily as some, but will drop in regularly as time permits. Hope all have a great holiday break. Keep the stress levels to a minimum. Lucky.

  10. #10
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    Thanks for sharing and un-lurking Lucky. I also had the letter opener/ice pick in the eye syndrome and loss my vision in one eye on and off a few times and also the hearing went about 2 years ago as well as a few other symptoms. The eye doc was also the person that forged ahead trying to get a diagnosis and much to my dismay her thoughts on vasculitis were correct - but at least we started treatment.

    Keep on keeping on -

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