Where do people go???

[im so blessed]

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 :)

[mrtmeo]

I too, noticed many buddies are MIA.
I sure hope they are out living life instead of suffering.

[Jaypfei]

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! :)

[vdub]

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.

[mishb]

.........and then you get us that still drop in every day :tongue1:
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.

[mishb]

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 :)

Some, unfortunately, have passed away :crying: 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.

[im so blessed]

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 :)

[annekat]

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....

[Wegetarian]

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.

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.

[Alysia]

Some, unfortunately, have passed away :crying: 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.

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 ..

[MikeG-2012]

Speaking for me alone, when I start feeling better, I am more active and spending less down time here at home. That relates to less computer use, therefore less time on the forum. I do read almost every new post at least every couple days, just to stay in touch, but don't post much. Many of you say the same tings I would have said, so rather than typing the same thing or "ditto", I choose to move on to the next post.

[mishb]

Many of you say the same tings I would have said, so rather than typing the same thing or "ditto", I choose to move on to the next post.

Ditto :flapper:

Actually, I come on here everyday to clear all of the new posts.
When Phil passed away, like Alysia, it was just too painful to come on here.
I ended up with 4 pages of new threads and posts and was just so overwhelmed with getting through them, that it took me forever.
I always made sure that I read them all of the time to clear them, so this became too much.
It is now back under control and that's why I'm here - I hate trying to catch up with everyone.

Alysia, just remember - we are here for you and with you :hug1:

[Psyborg]

Guilty as charged here a bit :) I think that people are more active when they are scared or feeling bad. Once they start to feel better people tend to get on with life.

Another component for me is similar to what Alysia said. When we lose a member I find it hard to come for a while it feels emptier without that voice.

[annekat]

I, too, miss Phil's presence here very much, and the others who have passed on since I joined, Jack, Al, Lightwarrior, Barbara..... The new people coming in all the time are a welcome breath of fresh air and it is sad to think that those who have passed will never know them. Then there are those like Sangye, who was so active in the past, and is still around, but life changes and people become involved in other concerns. We can learn a lot by looking in the archives for her posts and those of the others mentioned.

[freakyschizogirl]

I'm still about too but I like lurking in the shadows.

When I've been away a while I get a bit shy because there are so many new members on here its hard to keep track!

It is also a bit hard to talk about being in remission as people that are still struggling don't always want to hear how well you are doing. Or you simply run out of things to talk about.

I have also found groups on facebook which help and especially the VUK page as its Vascies from the UK. I also have a good majority of Weggies as friends on facebook and over time this becomes my preferred method of staying in touch.

[Dirty Don]

YOU?? SHY??? Hmmm, looking around room, I don't remember her...LOL! Keep on keepin on m'lady!!!

[annekat]

I know it is hard to keep up with the new members and do the best I can, but am trying not to feel like I have to catch everything that comes along. I also am involved in Facebook groups, here in the US, and they are another great way to be in touch with the WG world or those with other kinds of vasculitis. I just go there when I'm notified that someone has posted, and can always just "like" and not reply, as on here. It is a little slower paced than the forum, though long discussions can still happen, and a good way to meet fellow Weggies in my area or elsewhere and hear about local or regional docs and treatment centers or vascie get-togethers.

[LisaT]

I haven't been on here much at all lately, although I miss it and everyone on here! I am still struggling with symptoms and appointments and managing kids and home, and find I'm wanting to 'check out' and watch mindless drivel or scroll through FB during my rest times. Phil's passing also made it hard for me to be here. �� I was in shock for a while and communicating with Alysia and a few of you I'm connected with on FB but going to the forum less frequently. Now I feel like I've missed so much it's become a 'project' to plow through it all, but I'll probably try to gradually catch up. I haven't forgotten you all! I guess I just haven't had the energy to be very involved. :crying:

[annekat]

It's OK, Lisa. I think a lot of us need breaks from here from time to time, or periods of less involvement. I think you will jump back in a little more actively when you are ready. Dealing with your health as well as raising a family and managing a home would not leave a lot of time and energy for other things! I hope that your symptoms and energy level will improve soon. I was just thinking, I don't remember whether you were ever actually diagnosed with WG and hope you are not still dealing with that uncertainty.

[renidrag]

I know I have not been as vocal as earliier in my Wegss journey but do read and "like" some reads.
Dale

[LisaT]

It's OK, Lisa. I think a lot of us need breaks from here from time to time, or periods of less involvement. I think you will jump back in a little more actively when you are ready. Dealing with your health as well as raising a family and managing a home would not leave a lot of time and energy for other things! I hope that your symptoms and energy level will improve soon. I was just thinking, I don't remember whether you were ever actually diagnosed with WG and hope you are not still dealing with that uncertainty.

Thanks, Anne, I don't want to be a fair-weather Weggie but I do think we all have to come and go as circumstances and energy levels allow. I'm in a rest and gather strength mode these days. Unfortunately I'm having severe hip and leg pain, which means I'm lying flat-out in bed rather than sitting up a lot of the time, so I can scroll and read but not answer as easily. I'm also up and around doing things until I need to rest, but during rest times I'm completely horizontal and that's when I would normally post. I think the loss of our beloved Phil/Batman left huge shoes to fill and I would like to get back to helping support others and new members when I can... I don't know 1/100th of what he did, but perhaps all of us combined will put a dent in the need for info and support. He and the others I didn't have the chance to get to know are hopefully guiding us from their better place. maybe they're all having a big symptom-free Weggie party with No pain. :hug3:

I have one what-are-the-chances development to share: I've recently learned that in our teensy little school of 200 kids, another mom was diagnosed with WG/Gpa this past year. I've given her the info and will let her tell her own story here should she choose to join. Even more incredible statistically, is the fact that our boys are in the same class! (It's a two-grade split, which is why we haven't met before, and neither of us is doing a lot of the dropping off and picking up these days so we haven't crossed paths). If I remember correctly the disease is about a one in 200,000 occurrence in general population... So the chances of this must be infinitesimal. I'm looking forward to getting to know her... Hopefully she will check out the forum and you'll get to know her too.

[vdub]

If I remember correctly the disease is about a one in 200,000 occurrence in general population...
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.

[Tom]

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!

[Alias]

I check in frequently to see what is new... but the greatest value of the group to me was the initial catharsis, the ability to tell the story of the mysterious symptoms and ultimate diagnosis to people who could truly relate and understand and offer advice as to how to cope. I think people who have adjusted to their new normal may be watching for opportunities to help others, but less likely to post about their day to day trials.

[gilders]

Speaking for me alone, when I start feeling better, I am more active and spending less down time here at home. That relates to less computer use, therefore less time on the forum. I do read almost every new post at least every couple days, just to stay in touch, but don't post much. Many of you say the same tings I would have said, so rather than typing the same thing or "ditto", I choose to move on to the next post.

Mike's reasons closely match mine.

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.

[Pete]

I don't think anyone should feel guilty because they haven't been posting/helping on this site. Our dumb disease is a big enough burden to bear. If you're feeling good enough to lead a nearly normal life, well, good for you. We'll celebrate with you...

[gilders]

I don't think anyone should feel guilty because they haven't been posting/helping on this site. Our dumb disease is a big enough burden to bear. If you're feeling good enough to lead a nearly normal life, well, good for you. We'll celebrate with you...

Thanks for that Pete.

One of the reasons I feel guilty when I'm not active on the site is connected to Barbara. She was one of the few people who I sent a personal message to.
During her last month or so she wasn't happy about starting dialysis and at one point looked like she was going to refuse it. Having been on dialysis myself, I tried to persuade her to start dialysis. She eventually did (not that I'm saying her decision was due to my advice). I can't remember what was going on in my life at that time, but I "disappeared" from the forum for quite a while.
One day I decided to try and catch up with how everyone was getting on, especially Barbara and her dialysis. I was very shocked and upset to find out the dialysis didn't save her and, as we know, she passed away. I do know that without dialysis the end result would have been the same, but hate to think my advice led her to starting dialysis and, perhaps, took away her dying on her own terms.

[mrtmeo]

Thanks for that Pete.

One of the reasons I feel guilty when I'm not active on the site is connected to Barbara. She was one of the few people who I sent a personal message to.
During her last month or so she wasn't happy about starting dialysis and at one point looked like she was going to refuse it. Having been on dialysis myself, I tried to persuade her to start dialysis. She eventually did (not that I'm saying her decision was due to my advice). I can't remember what was going on in my life at that time, but I "disappeared" from the forum for quite a while.
One day I decided to try and catch up with how everyone was getting on, especially Barbara and her dialysis. I was very shocked and upset to find out the dialysis didn't save her and, as we know, she passed away. I do know that without dialysis the end result would have been the same, but hate to think my advice led her to starting dialysis and, perhaps, took away her dying on her own terms.

Gilders,
dialysis kept her alive, but apparently, her drs didn't customize her dialsate to accomodate her nutrition.
It really broke my heart when I saw that she had passed on because she probably would have felt much better on at home nocturnal dialysis.
However, she is no longer suffering and in peace and she made her own choice to stop the dialysis.

This disease is so devastating and it is a comfort to see so many like you on this site doing well.
Hopefully, they will get that 3D printing of kidneys going so those who need one, can get one without immune suppressives.

[drz]

I know I have not been as vocal as earliier in my Wegss journey but do read and "like" some reads.
Dale

After awhile you figure every thing has been said already and that you don't really have much to add. Or you are not doing that well either and don't have the energy to post much either.

[drz]

My recollection from her messages and posts is that she was very resistant to even start dialysis and postponed it for a long time too. That might have also decreased her prognosis for surviving it.

The most frustrating cases I read about are the ones where people die from being diagnosed too late or being unfortunately in a situation where they are not able to get the appropriate treatment in a timely manner. And there are the unfortunate rare cases where the Wegs attack a vital organ that usually results in a quick death since treatment is of little use or unable to help in time.


Gilders,
dialysis kept her alive, but apparently, her drs didn't customize her dialsate to accomodate her nutrition.
It really broke my heart when I saw that she had passed on because she probably would have felt much better on at home nocturnal dialysis.
However, she is no longer suffering and in peace and she made her own choice to stop the dialysis.

This disease is so devastating and it is a comfort to see so many like you on this site doing well.
Hopefully, they will get that 3D printing of kidneys going so those who need one, can get one without immune suppressives.

[lag713]

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!

[drz]

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.

[Mas78]

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.

[duffybear]

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.

[renidrag]

Mas:
I can relate to the blood clot, I ended up with a pulmonary embolism and a venal filter.
Dale

[Jules]

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! :hug1:

[whatthewhat]

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...

[Pierre42]

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....

https://s-media-cache-ak0.pinimg.com/236x/56/3f/69/563f696449bed22b0d22977570539184.jpg

[Pete]

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

https://s-media-cache-ak0.pinimg.com/236x/56/3f/69/563f696449bed22b0d22977570539184.jpg

hilarious!!!

[Wegetarian]

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.



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).