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You know, I have posted here off & on for the last year probably, ever since my skin started to get tight anyway, and I've been in & out, asking questions and every time people have responded and been so kind & so supportive. I know some of you post regularly & I've been a member in forums before where I was a regular along with several others & often times most of the regulars have this us four & no more mentality and are not so welcoming, especially to those who are busy & pop in once in a while.


Anyways, I just wanted to acknowledge & thank all of you for how great you have always been to me & to the numerous others that I've seen you respond to who's posts begin with "I'm new here" or "I haven't been here in a while" or "Is this sclero"...lol.


Y'all are beautiful! :rolleyes:

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Hello luvbnmom3,


It's delightful for all of us to hear how much you appreciate everyone in Sclero Forums!


In defense of other online groups, it's actually hard for a group to remain open to newcomers and absorb them well. I've always wondered a bit about that phenomenon, which is a bit odd since most people also crave having more friends...especially to assuage the loneliness and break in social connections that often occurs with major life changes like marriage, divorce, moving, job changes, disability, severe illness, etc.


Then I read somewhere that historically, humans had very small societies (aka "tribes") of about 60 people or less. Thus, it seems we are genetically comfortable with a maximum of about 60 social contacts. Now, maybe that was a lot of hooey I read (any anthropologists among us?) but it may explain the tendency of nearly every group of people to hunker down into cozy little groups, or to be less welcoming to new members when they feel they have somehow maxed out.


It's also easier to communicate with people we already know. With new friends, we tend to be more on edge, worried how they are going to take what we say, not certain we can josh around with them, or that we might accidentally hurt their feelings. But I remain in awe of all our support specialists and members who continually stretch themselves "anyway" to welcome new friends into our wonderful forum. Mucho kudos to EVERYONE!

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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That makes complete sense, the tribes... history, etc. I just took a psychology course & history seems to play a big role in a lot we humans do!


Now that you mention it, I recall the comfort of the coziness with familiar friends & the uneasiness with newcomers... not knowing if they'll disrupt the beautifulness you've got going in the group of friends already formed & stuff.


So yeah... your point makes it even more amazing how supportive & kind everyone here is. When I first got sick, I was in so much pain every where, I was experiencing Raynaud's for the first time, major brain fog, people were getting upset with me for "playing the sick card" and even though I'd been there for a couple years, pretty much daily, when I wasn't able to keep up with the forum anymore they weren't so nice. That was a very difficult year when all that happened, not knowing what was happening to me, I never heard of Raynaud's & doctors didn't know what it was (told me that blood was pooling in my hands for too long & being cold was my new normal & to move to a warmer climate if I couldn't deal with it.).

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Wow, luv - blood pooling in the hands for too long? I hope you have since found new doctors. I am sure those in warmer climates will attest that cold is not the only thing that triggers Raynaud's attacks - if anything, warmer climates are more likely to depend on air-conditioning, which for me is the worst. And everybody uses freezers and refrigerators. Anyway (or 'anyroad' as they say in my neck of the woods) you are right about this being an extraordinarily warm and open forum.

Warm wishes,



Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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