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Ian, I agree, I do the same. I only look at emails where the subject line is interesting. I think it is important to be specific in the subject line especially for people who save emails in order to reference them later.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Click here

To: Sent: Friday, March 27, 2009 3:40:41 PMSubject: Re: Venting & Facebook

I thought the OTs were more to start a new thread when talking about something that is different from what is in the subject line? Sometimes the subject mortifies so what is being talked about has nothing to do with origin topic (mentioned in subject line). I can add OT but I already include Facebook in the subject line. I normally only read posts if they have a subject that I can relate to.Ian

On Fri, Mar 27, 2009 at 12:39 PM, Lori <lorijohnsonusa@ yahoo.com> wrote:

Barb, I agree with you about putting Off Topic in the subject line. As far as people giving their opinion (diagonosis) etc., It can be frustrating if one does not agree with that opinion. We do have freedom of speech and have to let everyone share even when we disagree, have a problem with what they say etc. If we do disagree or feel an opinion is out of line or not correct we can use our freedom of speech to share why we disagree, just like you did.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@ Yahoo.com

www.Lori.FirstWeber .com

Click here

From: Barb Henshaw <barbhenshaw@ peoplescom. net>To: @ yahoogroups. comSent: Friday, March 27, 2009 12:43:22 PMSubject: Venting & Facebook

Vent #1

If you don’t want to read my vent, or if hearing people “disagree†upsets you – delete NOW!! If you don’t, you have no reason to complain.

I came home from the hospital with several questions. Sat down and before asking my questions, decided to go through over 350+ emails in my inbox. I was shocked and very disappointed to read over 30+ emails talking about Facebook! Only one person (thank you) added Off Topic to the subject line. We have guidelines about writing too many off topic posts and Facebook IMHO should be an Off Topic subject, we are a PSC group.

We had several new members join while Ken was in the hospital, and I sat here thinking; those poor people, do they think this is what we do and who we are??? I was really upset, I’m still upset, several days later. Why can’t we keep Facebook on Facebook and PSC on Yahoo, the two should remain separate. Let me also say, I totally get Facebook for PSCer’s! I totally approve and support 100% Sandi’s (and Partner’s) efforts to find fellow PSCer’s where ever we can! Talk to them, friend them or whatever and invite them to join this group, that’s great and Sandi should be applauded for all of her hard work! But let’s keep Facebook chatter there and PSC topics here on Yahoo. People need help, comfort and understanding, that’s what we’re all

about.

Vent #2

“it sounds like your son is well on his way to needing a liver transplantâ€

Whoa, when I read this I just shook my head! We’re not doctors, we have absolutely no idea what someone’s medical history is, we just can’t make this kind of statement – for any reason. We only hear bits and pieces and no one should make this kind of judgment call anyway, especially not to a new member, who comes to us scared to death already!

Vent #3

“We are all ignorant and searching for answersâ€

I’m not ignorant and I don’t think 99% of our group members are. We learn from and by our own experiences. That is what makes this group so invaluable. People can tell you exactly what it’s like to have your colon removed, a UC flare, Crohn’s disease, CMV, a transplant (or two), unbelievable itching and/or fatigue. Etc, Etc. Etc. That’s not ignorant, that’s experience and much more valuable than its weight in gold. , Ricky and Lee (plus the other board members) certainly aren’t ignorant, and neither are the many nurses and doctors we have in this group.

Blame my rants on anything you’d like to…. I’m overtired, stressed out, caught me at a bad time, whatever. No need to write back, please just think about it. In love…..

Barb in Texas - Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

-- Ian Cribb P.Eng.cell: Enefen - Reviewer/Designerwww.enefen.com

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My understanding is that OT means it is unrelated to the group, or the purpose the group was formed for - but obviously I considered most of the facebook discussion on topic because it related to the group and how comfortable people in this group were having information provided in this forum transferred to another forum, but others considered it off topic because it wasn't about PSC. Under that dichotomy - I would consider this thread on topic, but since it isn't related to PSC it might be considered off topic by others.If the subject of the conversation changes, my understanding is that we are to change the subject line to reflect the new subject. (I've done that in a few of my replies).

Barb, I agree with you about putting Off Topic in the subject line. As far as people giving their opinion (diagonosis) etc., It can be frustrating if one does not agree with that opinion. We do have freedom of speech and have to let everyone share even when we disagree, have a problem with what they say etc. If we do disagree or feel an opinion is out of line or not correct we can use our freedom of speech to share why we disagree, just like you did.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@ Yahoo.com

www.Lori.FirstWeber .com

Click here

From: Barb Henshaw <barbhenshaw@ peoplescom. net>To: @ yahoogroups. comSent: Friday, March 27, 2009 12:43:22 PMSubject: Venting & Facebook

Vent #1

If you don’t want to read my vent, or if hearing people “disagree†upsets you – delete NOW!! If you don’t, you have no reason to complain.

I came home from the hospital with several questions. Sat down and before asking my questions, decided to go through over 350+ emails in my inbox. I was shocked and very disappointed to read over 30+ emails talking about Facebook! Only one person (thank you) added Off Topic to the subject line. We have guidelines about writing too many off topic posts and Facebook IMHO should be an Off Topic subject, we are a PSC group.

We had several new members join while Ken was in the hospital, and I sat here thinking; those poor people, do they think this is what we do and who we are??? I was really upset, I’m still upset, several days later. Why can’t we keep Facebook on Facebook and PSC on Yahoo, the two should remain separate. Let me also say, I totally get Facebook for PSCer’s! I totally approve and support 100% Sandi’s (and Partner’s) efforts to find fellow PSCer’s where ever we can! Talk to them, friend them or whatever and invite them to join this group, that’s great and Sandi should be applauded for all of her hard work! But let’s keep Facebook chatter there and PSC topics here on Yahoo. People need help, comfort and understanding, that’s what

we’re all

about.

Vent #2

“it sounds like your son is well on his way to needing a liver transplantâ€

Whoa, when I read this I just shook my head! We’re not doctors, we have absolutely no idea what someone’s medical history is, we just can’t make this kind of statement – for any reason. We only hear bits and pieces and no one should make this kind of judgment call anyway, especially not to a new member, who comes to us scared to death already!

Vent #3

“We are all ignorant and searching for answersâ€

I’m not ignorant and I don’t think 99% of our group members are. We learn from and by our own experiences. That is what makes this group so invaluable. People can tell you exactly what it’s like to have your colon removed, a UC flare, Crohn’s disease, CMV, a transplant (or two), unbelievable itching and/or fatigue. Etc, Etc. Etc. That’s not ignorant, that’s experience and much more valuable than its weight in gold. , Ricky and Lee (plus the other board members) certainly aren’t ignorant, and neither are the many nurses and doctors we have in this group.

Blame my rants on anything you’d like to…. I’m overtired, stressed out, caught me at a bad time, whatever. No need to write back, please just think about it. In love…..

Barb in Texas - Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

-- Ian Cribb P.Eng.cell: Enefen - Reviewer/Designerwww.enefen.com

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My understanding is that OT means it is unrelated to the group, or the purpose the group was formed for - but obviously I considered most of the facebook discussion on topic because it related to the group and how comfortable people in this group were having information provided in this forum transferred to another forum, but others considered it off topic because it wasn't about PSC. Under that dichotomy - I would consider this thread on topic, but since it isn't related to PSC it might be considered off topic by others.If the subject of the conversation changes, my understanding is that we are to change the subject line to reflect the new subject. (I've done that in a few of my replies).

Barb, I agree with you about putting Off Topic in the subject line. As far as people giving their opinion (diagonosis) etc., It can be frustrating if one does not agree with that opinion. We do have freedom of speech and have to let everyone share even when we disagree, have a problem with what they say etc. If we do disagree or feel an opinion is out of line or not correct we can use our freedom of speech to share why we disagree, just like you did.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@ Yahoo.com

www.Lori.FirstWeber .com

Click here

From: Barb Henshaw <barbhenshaw@ peoplescom. net>To: @ yahoogroups. comSent: Friday, March 27, 2009 12:43:22 PMSubject: Venting & Facebook

Vent #1

If you don’t want to read my vent, or if hearing people “disagree†upsets you – delete NOW!! If you don’t, you have no reason to complain.

I came home from the hospital with several questions. Sat down and before asking my questions, decided to go through over 350+ emails in my inbox. I was shocked and very disappointed to read over 30+ emails talking about Facebook! Only one person (thank you) added Off Topic to the subject line. We have guidelines about writing too many off topic posts and Facebook IMHO should be an Off Topic subject, we are a PSC group.

We had several new members join while Ken was in the hospital, and I sat here thinking; those poor people, do they think this is what we do and who we are??? I was really upset, I’m still upset, several days later. Why can’t we keep Facebook on Facebook and PSC on Yahoo, the two should remain separate. Let me also say, I totally get Facebook for PSCer’s! I totally approve and support 100% Sandi’s (and Partner’s) efforts to find fellow PSCer’s where ever we can! Talk to them, friend them or whatever and invite them to join this group, that’s great and Sandi should be applauded for all of her hard work! But let’s keep Facebook chatter there and PSC topics here on Yahoo. People need help, comfort and understanding, that’s what

we’re all

about.

Vent #2

“it sounds like your son is well on his way to needing a liver transplantâ€

Whoa, when I read this I just shook my head! We’re not doctors, we have absolutely no idea what someone’s medical history is, we just can’t make this kind of statement – for any reason. We only hear bits and pieces and no one should make this kind of judgment call anyway, especially not to a new member, who comes to us scared to death already!

Vent #3

“We are all ignorant and searching for answersâ€

I’m not ignorant and I don’t think 99% of our group members are. We learn from and by our own experiences. That is what makes this group so invaluable. People can tell you exactly what it’s like to have your colon removed, a UC flare, Crohn’s disease, CMV, a transplant (or two), unbelievable itching and/or fatigue. Etc, Etc. Etc. That’s not ignorant, that’s experience and much more valuable than its weight in gold. , Ricky and Lee (plus the other board members) certainly aren’t ignorant, and neither are the many nurses and doctors we have in this group.

Blame my rants on anything you’d like to…. I’m overtired, stressed out, caught me at a bad time, whatever. No need to write back, please just think about it. In love…..

Barb in Texas - Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

-- Ian Cribb P.Eng.cell: Enefen - Reviewer/Designerwww.enefen.com

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