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'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 too, noticed many buddies are MIA.
I sure hope they are out living life instead of suffering.
I'm living life and being happy. I pop in from time to time to read posts, sometimes I answer. But I stay pretty busy outside the group. Wishing everyone a great New Year!
Yes, that is exactly what happens. First is the dx, then the quest for knowledge, find our forum, ask lots of questions for about a year, then disappear. I think they get comfortable with their new situation and carry on with life. We have seen it many times.
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
.........and then you get us that still drop in every day
I can't reply to posts from work sometimes but I'm always here.
This forum saved my sanity and probably my life, not from WG itself but from giving advice on things to do or things to avoid with different meds etc.
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
Some, unfortunately, have passed away and others (believe it or not) have found other groups to chat on or discuss WG
Others, I hope, are living it up as best they can and come and go as they choose.
...........and best of all - many have found remission and life is fantastic.
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
I wondered if it was the "panic is over " and learned to deal with wg without all this support. Maybe i will find that spot too,someday Right now tho, this site is just too good to be true
I think that could be it for some; everyone's situation is different. I think of the forum in glowing terms, as you do. But keeping up with it takes a lot of time, as does Facebook and other things we do online. I'm feeling a need to pull back a bit, as the time involved is more than I can really afford when there are other things I need to do. But I keep saying that....
Anne, dx'ed April 2011
That would be my guess too... I.e. when we get dx'd we have so much to learn, but if the symptoms are gone and one feels fine there isn't really that much need for a support group, but of course there is the great company here
I know that's what happened to me... I.e. I probably checked in every couple of months tops, when I was feeling fine but when I relapsed I started to come here a lot more frequently. I guess many of the most active posters also have some chronic symptoms related to wegs.
Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)
my sweet Phil, who was one of the most active members with 6076 posts, went to heaven at Oct 2 after long fight.
I am too aching to write here like before. it was kind of home to us. here. and now it is too empty without him around. too much tears to come here, like now, I can hardly see what I am typing ..
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Bookmarks