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Friday, September 3, 2010


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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 »

A New Lew Newmark: My Domestic Life Podcast

Posted by Lew on January 24, 2010

Hi there everyone.

Well, it’s a Sunday afternoon, and I have finally got around to doing this post that I should have done yesterday.

Yes, I do indeed have another Lew Newmark: My Domestic Life podcast to share with everyone, and this podcast talks a bit more about the upcoming VF Awareness Week at the end of  April, and focuses on a post I did here on the blog a few days ago about CSS and Remission.

Here is the link for the newest podcast..

Lew Newmark: My Domestic Life The Podcast

WAIT! There is more to read… read on »

Churg Strauss Remission? I’m Not Sure Yet..

Posted by Lew on January 13, 2010

Hi there everyone!

Yesterday, I went for my first doctor’s appointment of the new year ( and yes, I have another on Friday! ) and I saw my Rheumatologist, and we started to talk about my last blood test results, and apparently they were very good.

So we started to talk about those results and what they might mean for me, and the word ” Remission ” was bandied about for just a few moments, and so I asked the doc just what would be considered remission for my condition, and after going over all the results of my blood work, here is what we talked about…

  • My Eosinophil count is near normal levels
  • My Kidney Function is perfect
  • My last chest scan showed absolutely no abnormalities

So with this thought in the back of my mind, I asked him about a few others matters… WAIT! There is more to read… read on »


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