Re: OT, Venting & Facebook

[Guest guest]

Barb,I feel I need to apologize/respond since all three of your " vents " involve me.re: #1 vent. - I am working with Sandi to find a better way to bridge the gap. So we can make people aware that there are members on facebook without posting to often and/or posting personal information.

re: #2 vent - I want to encourage others, but 's story sounded very bleak and rah-rah stories on how others have done would be sound unrealistic and phony in that case. I'm not sure of the best way to handle such. Perhaps I should just shut-up!

re #3 vent - Compared to the all knowing God we ARE all ignorant and anyone who thinks they have all the answers is fooling himself. Einstein once asked a class of his what percent of the universe's man kind possessed. He thought the reply of 2% was high. I stand behind the statement " we are all ignorant " .  Although many in this support group are less ignorant than I.

I want to encourage others, but I often make mistakes (maybe too often) and step on peoples toes.  I am sorry!!! I am willing too submit to some limitations or having all my posts pre-screened. I hope I am doing some good?

Ian

[Guest guest]

Ian - nothing you have done or said has offended me so, as far as I'm concerned, carry on!As to vent#2 one of you or Barb may be thinking of someone else - since I have a daughter (and I expect she will ultimately need a transplant, but not in the immediate future.) Or maybe a second with a son just joined who I missed.As far as the general tone with newcomers, It's a tough line to walk. Personally - I want all the information and ideas I can get even if it is bleak. I thrive on information, because it gives me a way to fight back - and perhaps find something that works. I've never been an ostrich type. I assess suggestions made here for what they are worth - a sharing of information and empathy/commiseration/anger/etc. by fellow travelers on this path who come with a variety of

educational/work backgrounds, medical, spiritual, and life philosophies, and experience with this beastie.People here have wealth of information that is umatched by what any doctor not personally living with the disease brings to the table. For the most part, we are not limited by some of the trained biases of traditional medicine that far too many doctors have - so our thoughts about disease process, treatment, and coping mechanisms tend to be more creative. Sometimes that's good because we come up with ideas that work, and are eventually adopted by mainstream medicine. Other times that creativity can be pretty wacky. Any transplants here from alt.support.crohns-colitis who remember Gail (crohns-colitis is caused by the use of "stimulants" (including alcohol!) by someone you love, via some sort of telepathy)?I also know that groups like this tend to be populated with a few people doing well - but

mostly when you (or your parents and loved ones) are doing well there are much better things to do than hanging out here, so someone popping in here to get an idea of what their life will be like with PSC is is likely to get an overly pessimistic view. Not everyone coming to this group has had that experience/knowledge that I do with groups like this - so just dropping in out of the blue, newly diagnosed could be pretty discouraging. Even knowing what I do, I have been surprised by the number of autoimmune diseases may of you are dealing with.re: #2 vent - I want to encourage others, but 's

story sounded very bleak and rah-rah stories on how others have done

would be sound unrealistic and phony in that case. I'm not sure of the

best way to handle such. Perhaps I should just shut-up!