Weggies outside this forum

[katarzena]

What do you think about people that have wegeners and aren't active on forums?
I feel like things with wegeners are much more optimistic then it seems on the forum. I don't know is it just me, but I feel like a lot of people actually are in remission and have been for a very long time, but on the other hand, most of the people that sign to support forums, like this one, are people with ongoing problems who need help or people who, unfortunately, havent had much luck since their diagnoses. What do you think?
I was wondering esspecially now with these new medications and therapies (such as rituximab that is known/used for only about 5 years) who knows what will happen with us? Can we rely on the informations about people that have been diagnosed 20 years ago and didn't get a chance to use rituximab or other improved healing techniques? Maybe I'm being too optimistic, but how can we say remission forever or at least a very long time isn't possible if it's been just a few years that rituximab has been in use?
Maybe it's just me being too optimistc but I've always been like that. And on top of that all, I do believe that positive attitude can help with your healing procces. Having a belief that you will get into remission, and accepting the situtation the way it is( instead of asking ''why me'', ask ''why not me?'') and forgiving your body for making the mistake it made while just trying to protect you - you can do a lot of your own well being.

Okay I'm done.

Kisses =*

[delorisdoe]

Oh no, lol, here we go again.

I belonged to a mailing wg group 10 years ago when 1st diagnosed and pretty much left it when I achieved remission. I was young and I guess selfish.

I found this group when wg creeped back into my life a few months ago and I was unable to sleep at night as it was all I could think about.

I think a group like this makes me feel not alone and It makes it so I can function in my life without only thinking of how sick I am getting, or what the drugs will do to me.

When I read of others who are doing worse than me it helps me realise that I am not so bad-I dont like feeling sorry for myself so this is great.
when I read of others who are doing better than me it gives me hope
When I read of a young girl going through what i went through years ago-yet she is way younger-I am reminded that life is what you make of it and that laughter is great.

I have never asked why me. I have never thought why not me.

I guess in short i dont really agree with you but i do apreciate your view. It falls into the "gives me hope, life is what you make of it category."

[katarzena]

In which part of my post you don't agree with me? Sorry for my bad understanding of english. )

[delorisdoe]

I think your english is great. I find forums like this to be optomistic. It is true that the healthy dont reply as often but this site seems to have a large number of people who are doing well. Other than that i dont dissagree. oh, and congrats on your remission. I enjoyed remission myself for the better part of 8 years.

[maria garcia]

What do you think about people that have wegeners and aren't active on forums?
I feel like things with wegeners are much more optimistic then it seems on the forum. I don't know is it just me, but I feel like a lot of people actually are in remission and have been for a very long time, but on the other hand, most of the people that sign to support forums, like this one, are people with ongoing problems who need help or people who, unfortunately,

havent had much luck since their diagnoses. What do you think?
I was wondering esspecially now with these new medications and therapies (such as rituximab that is known/used for only about 5 years) who knows what will happen with us? Can we rely on the informations about people that have been diagnosed 20 years ago and didn't get a chance to use rituximab or other improved healing techniques? Maybe I'm being too optimistic, but how can we say remission forever or at least a very long time isn't possible if it's been just a few years that rituximab has been in use?
Maybe it's just me being too optimistc but I've always been like that. And on top of that all, I do believe that positive attitude can help with your healing procces. Having a belief that you will get into remission, and accepting the situtation the way it is( instead of asking ''why me'', ask ''why not me?'') and forgiving your body for making the mistake it made while just trying to protect you - you can do a lot of your own well being.

Okay I'm done.

Kisses =*

Bless you gives me hope! I have recieved alot of information on this forum but i always tear up bcse everyone is going through so much pain.

[Jack]

You are probably right in thinking that the forum gives an unbalanced view, but I don't remember ever seeing any statistics of the number of patients currently in remission to support this. I think the group does tend to consist mainly of those with active disease and I expect that I would not have joined 20 years ago when I was living a fairly normal life.

[katarzena]

Bless you gives me hope! I have recieved alot of information on this forum but i always tear up bcse everyone is going through so much pain.

I have to agree with you. When I was active on the forums when I got diagnosed I was so scared and depressed. Reading everything that can happen with this disease that I didn't even know about made me feel much worse. In one hand it's always good to be informed and prepared for what might happen, maybe it's just me, but I feel that way when I'm on the forum. I feel like people aren't optimistic enough and there are reasons to be. Whenever I read even one comment about how things will and can get better I was so happy and fullfilled. Whenever I read about people having realpses every few months, I turned off computer, locked myself in bathroom and cried of fear of going through the same.
I like doing things that I always used to do and act like everything is okay even tho i'ts not, I've told myself I'm not accepting any ''new'' normal, I like doing things the way I used to do it makes me feel better. I'm a rebel I guess but that's just how I personally want my life to be.

[delorisdoe]

I came here because I needed something and I am getting what I needed. also, It seems I have made a friend or two and that is nothing to cry about.

[katarzena]

I came here because I needed something and I am getting what I needed. also, It seems I have made a friend or two and that is nothing to cry about.

I'm glad for you. I guess it just didn't work for me that way! Of course I appreciate every advice that I was given on this forum, but maybe it's just me. People deal with stress in different ways. ones confront their stressor and fears, others ignore them and act like everything is okay. I guess I belong to the second group and that's it.
Kisses =*

[delorisdoe]

I'm glad for you. I guess it just didn't work for me that way! Of course I appreciate every advice that I was given on this forum, but maybe it's just me. People deal with stress in different ways. ones confront their stressor and fears, others ignore them and act like everything is okay. I guess I belong to the second group and that's it.
Kisses =*

well then, you and I are alot more alike than you think. ignoring it and acting like everything is okay is how i deal with wegners but this is why I need this site.