Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 , Thanks.....and stop lurking....we need to hear from you. You are soooooo important to our board. Some days, the only bright happy spot on forum. I know that you cannot possibly feel as good as you come accross. But, you share your sweet self with us and I for one appreciate the lightness and gaity of your posts. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hi Air Family,> I'm back down in wintery Tassie for my> grand-daughter's school holidays. Even though I've been in 'Lurking'> mode for a while lately I'd like to comment on the unfortunate turn that> the debate has taken over Caregiver's Presence on the Patient's Forum.> I'm so saddened to think that Teri/Jon or > K/Don could leave us due to this....I've found their presence & > experience as Caregivers to be really valuable for me. It seems to me> that they are being 'Patients by Proxy' for both Jon & Don. Couldn't> this be the exception to the rule & that it is totally appropriate.> Where the Patient is too ill or a computer-phobic for example!> Having said that I can see that a separate Forum> is also valuable in the usual context where 'venting' might be needed.> But HECK we only have a couple of Caregivers on our Patients Forum & > their presence is quite in order I reckon, given the circumstances of> their patients. If their Patients didn't want the connection then it> would be a different matter.> None of us are hardly likely to be venting about> either Teri OR Lind a K.....that would only be an issue if the 2 Forums> were joined as one big open Forum (THAT I don't think is a good idea!)> Can't we make a case by case decision...gently> lead those to the Caregivers Board if they seem to be on the Patients> one in isolation from their own PAtient.> Hope that was understandable!!!!> Sincerely,> from OZ> IPF: Fibrotic NSIP/ UIP?????> Reynauds'> May 2007> Quote Link to comment Share on other sites More sharing options...
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