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Thread: Where do people go???

  1. #31
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    I was active for the first few months after diagnosis and whenever I felt like I was having an issue with my treatment. I tend to just lurk by reading the posts and keeping an eye on things. I feel like I shouldn't post unless I have something to contribute to the conversation. I know there are plenty of us here even if we don't post - just check the number of views a post gets!

  2. #32
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    Quote Originally Posted by lag713 View Post
    I was active for the first few months after diagnosis and whenever I felt like I was having an issue with my treatment. I tend to just lurk by reading the posts and keeping an eye on things. I feel like I shouldn't post unless I have something to contribute to the conversation. I know there are plenty of us here even if we don't post - just check the number of views a post gets!
    Only members can post too and usually there are ten times more readers than members on the site at any given time. Right now there are 15 members on and 117 guests so only a small portion of readers will actually post some thing here.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #33
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    Aug 2014
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    I'm also one of those that usually check in every so often since I found this site and read the posts. sometimes I have some input, but I usually don't have much past what has already been said as there are several very helpful members that post quickly.
    I had another blood clot in my leg back in early December, that and then traveling around the state for the holidays really ate up a lot of my time the past couple months. So I would guess a good portion of users check in even if they don't log in and post.
    Dx'd December 2000

  4. #34
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    I genuinely appreciate the long-time members who have the patience and kindness to regularly offer advice and support to those of us who rush in on diagnosis and then vanish. (That would be me, kind of. In my case, I posted a few times after I was diagnosed last month and now am just trying to sort out medication and orient my head to this new way of being.) With regard to the OP's comment re people who may have passed, I am slightly amazed by what people with this condition manage to live through. I am just surprised and thankful that people somehow often (although sadly, not always) are able to survive major medical crises.

  5. #35
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    Nov 2009
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    Mas:
    I can relate to the blood clot, I ended up with a pulmonary embolism and a venal filter.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  6. #36
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    Feb 2011
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    Never far away . . . even when not actively posting, I always try to check in and get an update on how folks are doing. This site is like an online comfort blanket . . . always there when we need it!

  7. #37
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    Quote Originally Posted by Tom View Post
    I come to the site and read or reply!
    I try to gleen as much info as I can and then make comparisons! I think there are times that I go into denial and have to re-enforce the fact that I have Wegeners!
    As I'm also on oxygen I visit a COPD site and a diabetic site.
    I relate a lot to the COPD site about as much as I relate to the Vasculitus site.
    Its hard to keep up on all the post but my reason for visiting the sites are that the COPD is a result of the Wegeners and the breathing is the most difficult part of my disease and is the most prominent in my day to day living!
    Also I am always looking for clues to new symptoms or signs of flares!
    I skip in and out because COPD and Wegeners are progressive diseases but I am guessing that the COPD aspect is going to be my fate and the progression is faster than the wegs but I need to have all the info available to me to help both problems. I still pop in to the site even if I don't post I pop in regularly!
    What it comes down to is I visit multiple sites and post equally on all that I visit!
    Just curious - are you alpha-1? I am learning about the overlap with WG and alpha-1...

  8. #38
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    Quote Originally Posted by im so blessed View Post
    I've been reading alot of old posts tonight and can't help but notice the posters who just vanish...whats up with that ? Maybe your guess is as good as mine. Hopefully out living

    I heard that William Posters has limited internet access from his prison cell....


  9. #39
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    Quote Originally Posted by Pierre42 View Post
    I heard that William Posters has limited internet access from his prison cell....

    hilarious!!!
    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

  10. #40
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    Aug 2013
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    Quote Originally Posted by vdub View Post
    We are veering a little off topic, but I think the current generally acceptance incidence rate is 1 in 30,000. However, I think that ratio is falling -- not because more people are getting wegs, but because the ability to diagnosis the disease is getting better.
    From a local study of Wegs patients from 1980-2000 they said the number of patients increased more than they could explain with better diagnostics. So even though its easier to diagnose someone now than a few decades ago (like due to ANCA-markers which were found quite recently) there still seems to be more new weggies than before and haven't really heard any explanation why that is.

    Quote Originally Posted by gilders View Post
    I do sometimes feel guilty when I've been away from the site for a while because Wegener's hasn't been at the front of my mind. The reason for the guilt is that whenever I return there's still people who are always here ready to help and then I think I should be here all the time to help people out.
    Please don't feel guilty! I'm sure you get reminded of Wegs way too often, no way should you need to check in to a weg-forum if you don't feel like it. On the contrary, forgetting about this disease for a while is quite relaxing (although its a bit difficult to forget it when taking pills 3x per day).
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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