Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Amen !! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Tassie Post 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...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Amen !! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Tassie Post 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...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Amen !! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Tassie Post 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...
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...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Dear Huggy Joyce, You don't know just how GOOD it is to hear you say that...I've been Lurking 'cos I've not been my usual self of late..I'm in a FUNK......not sick so much as FUNKED.....it's already June...I'm back in my beloved Tassie but I'm disappointed with myself for not having achieved what I'd planned in the interim with my writing....I haven't got Writer's BLOCK so much as general lethargy & allow myself to become too easily distracted. I need DISCIPLINE to NOT do the daily newspaper & the Sudoko & the Crossword with the leisurely 2 cups of Earl Grey (in my yummy, cosy bed with the French Doors wide open in the wintery morning mist) All very nice BUT it doesn't get my book written. Then of course I log on to my Air Family & read every Post, do lots of Replies & before I know it..it's afternoon & I'd better do the washing up & race around the house before Hubby gets home & it's time to start cooking! Sooooo, I've been practising the art of SKIMMING... & restraining myself from jumping in on threads..... Somehow I need to find a Balance........ rest assured I'm here & caring deeply about you all.....my Funk will pass & I'll find my balance & be back ASAP! Lotsa Love & Hugs, in Oz > >> > 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...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 GIO Am I going to have to come to tassie to straighten you out? lol Don't be disappointed in yourself. Be proud. Oh, I've put pressure on myself to do things but I've learned not to. I'm going to do each day what brings me pleasure that day. No long term goals, no timeline commitments. I see you doing those things you enjoy. I see you spending time with family and friends. I see you living life to the fullest you can and not letting this disease run your life. I see you as an inspiration. Looking back would you honestly trade one of those days with family or friends for a few pages written? Oh my strange down under upside down Scilly friend. You're doing well and taking care to live life. Don't think of those things you haven't done. Enjoy Tassie, although heading there in the winter is somewhat a decision of question....lol Yes, you've been distracted...doing things you've enjoyed. I get distracted on New Years parties with you and love every moment and could care less what I didn't get done. I spent too many years killing myself over undue stress of getting things done. Now, I don't care what I get done, just that I enjoy today. So if you don't go do something to enjoy Saturday, when you get up, I'm going to be very upset....lol Your BWBB. > > > > > > 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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