Churg Strauss Support Group: Do I belong here?

Posted by Lew on April 22, 2010

Hi and thanks so much for returning to my blog. RSS feed. Thanks for visiting!

Hi Everyone.

I think this post is going to cause a lot of discussion and maybe a little bit of a backlash toward me but I really need to get this out to you, my readers…

In September of last year I started a support group in my area of NY for CSS. It’s been a tough go for the group, and actually a real hassle for me to try to keep the group going as I try to contact everyone either by phone or through emails to see if anyone is interested or can make a proposed meeting date. Well last week I started to call a few members ( I actually only called one member at the time ) and when I was through talking to this person’s partner I was a bit discouraged and maybe even a bit put off…yes I will explain why.. This person is actually in remission…now this of course is just great!

But when talking about the date for the next proposed meeting, I was told that May would not be a good month for this person and their partner and that I should not try to schedule the meeting around them both. Now I understand that people have their own lives, agendas and such…but if you are the person trying to get a group of people from different areas of the county to meet on just one date ( with just one alternate date available ) you can start to get a bit discouraged, but then after I was done on the phone with this person a thought crept into the back of my  ( way over sized ) head..what if this person is just uncomfortable being in this support group, since their condition is in remission?

And I have to ponder if the real issue for anyone in remission becomes ” If I’m in remission, do I really need or want to continue to be a part of this type of group? “, and I ask this because I can see a very big issue or two for the person who belongs to a group like this and then finds themselves in remission… WAIT! There is more to read… read on »

The H1N1 Swine Flu Shot: The Debate Continues.

Posted by Lew on November 5, 2009

Hi everyone.

Well, this past Wednesday I took my Flu Shot…the ” Regular ” flu shot and I had several people at my job who know about my condition…yes that Churg Strauss condition, ask me if I was going to get the flu shot.

And I had told these folks that I was going to get it, and I also told them that I had indeed taken the shot last year, but only after talking with my doctors about the good and bad of taking the shot.

And one of these people also asked me about the H1N1 Swine Flu Shot, and I said that I was not sure about taking this shot due to what I have already reported on about it a few days ago.

So, I have been looking at some of the online discussion on one of the online support groups that I visit sometimes and some of what has been said which I am posting here, not in their entirety and also protecting the poster’s privacy… WAIT! There is more to read… read on »

Vasculitus Foundation: Middletown NY, First Group Support Meeting

Posted by Lew on August 15, 2009

Hi Everyone!

I just wanted to officially post this here on the blog….

The first meeting of the Middletown, NY VF Chapter Support Group will be happening on Sept.19th

I am very excited about this first meeting as I’m sure there will be a lot to be discussed.

I’m hoping that this will be the beginning of great things for all of us who get involved in this chapter and are able to reach out and help others and spread the word about Churg Strauss and other vascular diseases.

WAIT! There is more to read… read on »