Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Bruce, In your travels into the cyber world, have you ever ran across a PF site that deals with men only? G UIP/IPF 5/07 AZ. Subject: Re: LeanneTo: Breathe-Support Date: Friday, June 6, 2008, 8:08 PM What I gather from her post is that caregivers should post on the otherforum. As to how strictly that will be enforced I neither know nor care.Let's get beyond the subject and leave running the forum to Leanne andher moderators. If they feel someone shouldn't be here for whateverreason then they will take care of it and we really shouldn't be tryingto do their jobs for them. My opinion that its their decision and Isupport whatever they decide far overshadows any opinion which I have onthe subject and which I have not disclosed here or otherwise because Idon't feel its my place.> & gt;> & gt; Leanne... will you please clear up one thing?> & gt; You say the consensus is to allow CG...yet you say you do notwant to> merge the boards. Will you clarify what the decision is please? One> board or two and if it's two, will you clarify that as well?> & gt; Thanks!> & gt;> & gt; MamaSher, age 69. IPF 3-06, OR.> & gt; Don't fret about tomorrow, God is already there!> & gt; Patients vs Caregivers> & gt;> & gt;> & gt; There is currently a debate going on whether to allow caregiverson> the patient site or vice-versa. As the owner of the site and the> representative of the Pulmonary Fibrosis Foundation which sponsorsthis> site, I would like to explain the reasoning behind our decision tokeep> the members separated according to their situation.> & gt;> & gt; Each group has their own set of feelings, fears frustrations,etc.> that they must face and work through. A caregiver, no matter how much> they read, can never know what it is like to be a patient and> vice-versa.> & gt;> & gt; Each patient is different, some dwell on their disease otherslive> their lives as if there was nothing wrong with them and every shade of> gray in between. The only way to understand an individual, whether a> patient or a caregiver, is to communicate. A patient may not want to> discuss his/her thoughts and feelings. He/she may be hiding his/her> fears and frustrations for the sake of the family, or some otherreason,> or maybe he/she just doesn't have any fears or frustrations. This goes> for the Caregiver as well.> & gt;> & gt; Bottom line. The board is an On line Support group. UnderlineSupport.> We are here to support each other the best way that we can. It's> supposed to be a safe place to vent and share stories, concerns,> whatever is on your mind. It is not the end all and be all foreveryone.> If you don't like someone or the way they respond or ??, you candelete> and not read them. If you have an issue with someone personally, youcan> email them personally. Issues can be addressed discreetly off theboard.> & gt;> & gt; In the patient poll, people have responded favorably that theywould> like to include Caregivers. If this is truly how everyone feels, this> would mean that we would open the group to everyone. The two groups> would be merged. Right now patients are referred to the patient group> and caregivers are referred to the caregiver group. We would not just> have the few caregivers that are currently on our board. Honestly, I> don't want that. I would like to keep the groups as separate as> possible. I understand that there may be a caregiver or two who maywant> to get a different patient perspective or just have a question, butthat> is extremely hard to moderate. Honestly, I don't think the caregivers> would want the patients on their board, but I for one, am not polling> them.> & gt;> & gt; I'm as Christian as the next person and I truly want to do what's> right for US. This is OUR board. Hence the poll. I'm sorry that it> stirred up so many pots. We have so much other "stuff" to deal withand> I didn't realize that I stirred up a hornet's nest. I've learned> throughout my life that people take things personally. A friend ofmine> once said, it's because were a person. We're human. We're dealing witha> terminal illness on both sides doing the best we can each and everyday.> Some days are better than others.> & gt;> & gt; But, we will put this behind us and we will be a stronger board> because of it. I've been so blessed to have this Board in my life. It> has helped me through so many rough times. I've personally met friendsI> will have for life. I am so blessed. Can we please put this situation> behind us and move forward from here?> & gt;> & gt; Leanne> & gt; Owner - Breathe Support Groups> & gt;> Quote Link to comment Share on other sites More sharing options...
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