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Thread: To everyone **PLEASE READ**

  1. #1
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    Default To everyone **PLEASE READ**

    To new people,

    First, welcome to the Wegeners-Granulomatosis.com support forums!

    We’re happy to have you here!

    Please introduce yourself! Let us know where you're from, how long since you've been diagnosed, how you're doing right now and anything else you'd like to say by way of introduction.

    If you have any questions, Moderators (mods) and Administrators (admins) will be glad to help. All the mods and admins suffer from WG too so we can relate :-) Mods and admins can be identified by their usernames being a different colour from everyone else. Also, if you're wondering how to interact with this forum, you can find an FAQ here.

    There is one central rule we have here that we all must abide by. It's simple. Treat each other the same way you would like to be treated. In other words, be nice to each other!

    If you're confused about which category to post in, don't worry! No one ever bled to death from posting in the wrong area :-) If it needs moving to a more relevant area then one of the moderators or admins will do it. Above all...don't stress. Again, if you have any questions, just ask one of the mods/admins.

    We really love our members, really! However what we don’t love, is spam.

    Spammers will not be tolerated. Period. Spammers will be banned.

    That's it! Please enjoy your stay and I hope this message finds you well!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  2. Likes Kathy Harrod liked this post
  3. #2
    Doug Guest

    Default Sticky Lives!

    Andrew- I just discovered that Stickey isn't a member, but that bulletin board I suggested the site needs! I'm not certain, but I think I tried to befriend "Sticky" earlier!

  4. #3
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    Default

    Sticky says thanks, despite not having the ability to post
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  5. #4
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    Default

    Also everyone please note that you can now click on the demon rabbit at the top of the page and get all the new posts rather than scouring through each section. I'll make it tidier soon but thought it would be a good feature, particularly seeing as I miss posts all the time!

    Edit: There we are, demon bunny now cleaned up and looking pretty. Luce, you have created a monster. Well done!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  6. #5
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    Default

    It's nice to know I've made my mark!

  7. #6
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    Default

    This is the first post I read this morning, and I'm just splitting my sides laughing. What a great way to start the day! Luce! You're famous! Like Pasteur and Marie Curie, your discovery will be recorded in the annals of medical history. Andrew-- I think you should relocate to Maryland. This state needs a sense of humor.

  8. #7
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    Default Prednisone

    I was wondering if anyone knows if there is a guideline for how long you can expect to take prednisone. I believe that taking it makes keeping my emotions under control rather difficult. That is not great in my line of work (lawyer). Not a great idea to be so angry. Seems like either I'm angry, sad or pretty depressed.

    This could be because I got diagnosed on 4/2/09.

    I want to know if I will hear OK again and not walk like a drunken sailor. I want to know if I will ever get to be me again. I want to be able to walk my dog and walk into a room and hear what is happening in all of it. I just want to be regular again.

    Please excuse the whinning. It was a rough day for me.

    Also I don't understand about threads and who receives what I write. Could someone explain.


    Shannon

  9. #8
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    oh shannon i really feel for you.WG is a life changing disease.as for pred there is no way of knowing how long you will need to take it.everyone is different, i have been on it for over two years some have been on it for longer some less.i know what you mean about it emotionally i've swung from being a pitbull to crying like a baby at the end of marley and me.i take it from your comment about walking your dog again that you you are suffering from fatigue.if so i know exactly what you mean,we have two dogs and it really hurts that i am unable to walk them due to the fact that after fifty yards i'm ready to collapse.two years ago we were camping in scotland and walking the hills now i can barely make it to the nearest shop.i'm sorry but you're going to have to find a new regular.with WG the regular you knew is no more.you will need to try an adapt and know your limits.don't try to be like you were before because it will not work and you will just get more frustated.there are many people on here who are a lot wiser than me so please come back with any questions or if you just want to have a rant at the world that's ok.we've all done it so feel free.you're not alone.
    john.

  10. #9
    Doug Guest

    Exclamation To our new weggie, STW of Houston

    Quote Originally Posted by STW View Post
    I was wondering if anyone knows if there is a guideline for how long you can expect to take prednisone. I believe that taking it makes keeping my emotions under control rather difficult. That is not great in my line of work (lawyer). Not a great idea to be so angry. Seems like either I'm angry, sad or pretty depressed.

    This could be because I got diagnosed on 4/2/09.

    I want to know if I will hear OK again and not walk like a drunken sailor. I want to know if I will ever get to be me again. I want to be able to walk my dog and walk into a room and hear what is happening in all of it. I just want to be regular again.

    Please excuse the whinning. It was a rough day for me.

    Also I don't understand about threads and who receives what I write. Could someone explain.


    STW
    All members can read and comment in this forum. Some have created alias for purposes of the forum, others have used their names. Also, anyone who finds this forum can read it, but, unless they register, they can't add comments.

    ALSO, and this may have a great deal of meaning to you professionally, anyone who Googles your name can pull up your comments, read the forum. Even if you use an alias, people clever enough to snoop may be able to figure out who you are, etc.

    I don't know that you don't want to backtrack, re-register under an alias, and see if Andrew, the Webmaster, can't delete your name.

    As for your initial entry, you can edit it. Specifically, you can remove anything you feel might be detrimental to you professionally, by selecting it and hitting the delete key.

    "Threads" and a series of comments linked by a common thought (thread!), simple enough. I'm still working through that myself. I'd suggest going to the Home Page, selecting each topic, and reading through them.

    I don't want to be self-promoting, but I just learned how to YouTube, and three of the videos have to do with the impact of Prednisone on you (certainly me). Two are based on a little notebook I call my "krazy book". If you watch the videos (links are in the section identified as "I got a new webcam today", I think it is, third topic from the bottom- just double-left-click on them) I posted on You Tube, some of your answers can be found.

    Also, I recommend you Google Vasculitis Foundation. It's another place you can find lots of information, from the patient's point of interest, that many of us touched on when we were at your stage. In the meantime, this this the place for you to unwind, if that is what you need. We've all been through what you are experiencing. Some of us are still in the Prednisone stage (not me, thank God!), so you will have plenty of sympathetic readers whotruly, know what you are going through.
    Last edited by Doug; 04-29-2009 at 12:37 PM.

  11. #10
    Doug Guest

    Default

    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!!
    Last edited by Doug; 04-29-2009 at 12:33 PM.

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