Where do people go???

[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.

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.