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Thread: To everyone **PLEASE READ**

  1. #11
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    Quote Originally Posted by Doug View Post
    Odd things are happening on this site tonight: the quote was in the reply box, and the reply box was open when I came to this site. Somehow, my response was duplicated- ignore this reply!!
    It's the Dougflicker virus
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    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  2. #12
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    Hi Shannon...
    Have a read through some of the topics here. They should make things clearer.
    Wegener's Granulomatosis Disease Support Forum - FAQ: Board FAQ

    As well as what Doug said, each time someone replies to a thread, you'll probably get an email. This is a notification email only to let you know there has been a reply or a new thread. Come back here and view/reply by clicking the link in the email or coming straight to the site via your browser.

    You can also email me if you have questions or are having issues with the site
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  3. #13
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    welcome Shannon,

    The best advice I got from someone on this site was to be accepting of my "new normal". Once I realized that was the way it was going to be, I have felt much more on the positive side. Being positive helps in how you feel overall. Please use us as a sounding board and then hopefully you will feel better. We have all been where you are ( me not that long ago) so we all know exactly what you are feeling.
    The other thing I noticed is I seem to get stuff done, but at a much slower pace. This isn't all that bad I decided, but at first it was devastating to me as I prided myself in how efficient I was. Now I move through my life at a slower, more relaxed pace and really that is just fine. (I try to find the positive in what I can)
    Just remember we are with you all the way
    Lisa

  4. #14
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    I can't say it any better than Jack, Doug and Lisa. Welcome Shannon. If you don't want your clients or others knowing you are you here(ie. your full name)since it may appear googled and disclosy your ilness, then just remove your last name.
    I am too am more easyly upset then before but I have a happy outlook on life and accept the things I can't change. For me it works and the disease doesn't wear me down. I just adjust and keep rolling. If I can accept the change in my looks (see my album for before and after) I can do anything.
    Jolanta

  5. #15
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    Admire your attitude. I believe my anger will get better now that I have acknowledged it and have no excuse not to deal with it. Deep breathing!

    So far, so good for today

    The new "regular" is a difficult adjustment! I can't walk my dog because I can't keep my balance. I am getting instruction in some balance exercies but I have to use a cane and that is embarrassing to me.

    Regarding my name, I would remove my last name if I knew how. Mind giving me a little tutoring?

    Thanks for the reply.

    Shannon
    Shannon

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    Quote Originally Posted by Shannon T View Post
    Regarding my name, I would remove my last name if I knew how. Mind giving me a little tutoring?
    Hi hi...
    All done! You're now Shannon T

    You may need to log in again but not sure. Let me know if that's not ok and I can change it to something else.

    Only admin can change usernames
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  7. #17
    Doug Guest

    Default Better than falling flat on your face!

    Shannon-

    Glad you are having a shift in your thinking! Here's another one: Using a cane when you need one is just fine. People treat you differently. Mostly, it is positive: doors held open, little courtesies given. As a lawyer, maybe it'd help you win some cases! I joke, but not entirely.

    That little extra stability beats falling on your caboose. I still need one from time to time, five-plus years after diagnosis.

    If the standard aluminum medical supply store cane is too industrial for your tastes, see if you can find a hand-carved one that has a little character to it! Antique stores often have such things. Or- I know a lady whose friend hand-carved a beautiful cane based on a theme of the lady's name. I marvel each time I see it!

    Another way of thinking about it is "I will use this cane for stability until I am well enough to stop using it." It took me six months to reach that point. Do you have the peripheral neurapathy that many of us do? My feet were so numb they felt like blood-soaked sponges. The feeling was unpleasant. If I stood on them for any length of time, I would start sweating and get light headed to the point I had to sit down or pass out! I hope that isn't your case.

    Personal safety is more important than vanity. Tell yourself that until you believe it. Dealing with healing from the initial flare of WG is a big enough burden for your body without adding scrapes (potential infection sites), bruises, or broken bones from a fall. For some time, you will heal more slowly because of your compromised immune system.
    Last edited by Doug; 05-01-2009 at 08:40 AM.

  8. #18
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    Glad to hear that I'm not the only one to struggle with self image problems and mobility aids.
    I started using a stick to help walking about a year ago, but it should have been much sooner because I find that it helps a lot. Mine is a black, spring shaft, hiking type. I would not like to use one of the more medical looking ones. (can't believe how vain I'm sounding!)
    After much encouragement from my wife and children, I have also hired an electric mobility scooter a couple of times when on holiday. I hated the idea! But I have to admit that it was nice to be able to get about with the rest of the family instead of sitting in the car with a book. I still find that I'm a bit resistant to this one and need to give myself another talking to.

  9. #19
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    I can't walk my dog because I don't have balance. My dog is a Rodesian Ridgeback so he is big and any little pull will knock me down.

    Right now my hearing has improved but the balance and using a cane is getting to me. New regular. Just seems like so very many changes in such a short time. I feel as though I were in the game of life and still a player and now I feel very old. Guess the cane is a very difficult adjustment. Had to ask a client to carry my breifcase to my car today. I am tall and have been healthy and in the past would never ask for or need help.

    Guess everyday is pretty rough when you are first getting adjuster. Time cures all.

    Thank you for your comments.
    Shannon

  10. #20
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    Andrew, Thank you for the change.
    Shannon

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