Re: Venting & Facebook OT?

[Guest guest]

Barb,

Sorry you're having a rough time - hope you can get a breather soon! As a mom

just starting the PSC portion of my journey (the UC portion is old hat), I am

well aware that having a child struggling (even those adult ones) is

overwhelming.

As to the Facebook discussion (and newbies) - I'm one of the newbies. Ian

" friended " me on facebook just shortly after I joined, using the e-mail address

I use in this group to find me(Ian's only contact with me), and sent me facebook

pictures and profile information of other members of this group who are also on

facebook. Although I'm perfectly fine with Ian's " friend " request, I understand

how people might be concerned about cross sharing of information from one

internet forum to another.

It may have been OT as to PSC, but in the context it came up (relations between

people in the group and how information shared here may or may not be used

outside of this forum) I didn't find it OT (as opposed to something like

discussions of picks for March Madness - for which I can't imagine any context

that would not be OT)

Just my $.02 - and sorry to contribute to your load (I think I posted in that

thread a couple of times. In the context of the very similar discussions we had

in another listserve in which I participate it didn't occur to me that the

entire discussion would be perceived as OT).

Take care!

>

> Subject: Venting & Facebook

> To:

> Date: Friday, March 27, 2009, 1:43 PM

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> 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.

>

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>  

>

> 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.

>  

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> Vent #2

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> “it sounds like your son is

> well on his way to needing a liver

> transplantâ€Â 

>

>

> 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!

>

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>  

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> 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. 

>

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>  

>

> 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 

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