Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Bruce, The decision to keep both boards----are caregivers still allowed to participate on our board, as in the past? G. UIP/IPF 5/07 AZ. Subject: Re: SherTo: Breathe-Support Date: Friday, June 6, 2008, 7:53 PM SherHer decision is to leave two forums-one for patients and one forcaregivers and for us to all move on and get off a subject that becamevery ugly for no reason.>> Leanne... will you please clear up one thing?> You say the consensus is to allow CG...yet you say you do not want tomerge the boards. Will you clarify what the decision is please? Oneboard or two and if it's two, will you clarify that as well?> Thanks!>> MamaSher, age 69. IPF 3-06, OR.> Don't fret about tomorrow, God is already there!> Patients vs Caregivers>>> There is currently a debate going on whether to allow caregivers onthe patient site or vice-versa. As the owner of the site and therepresentative of the Pulmonary Fibrosis Foundation which sponsors thissite, I would like to explain the reasoning behind our decision to keepthe members separated according to their situation.>> Each group has their own set of feelings, fears frustrations, etc.that they must face and work through. A caregiver, no matter how muchthey read, can never know what it is like to be a patient andvice-versa.>> Each patient is different, some dwell on their disease others livetheir lives as if there was nothing wrong with them and every shade ofgray in between. The only way to understand an individual, whether apatient or a caregiver, is to communicate. A patient may not want todiscuss his/her thoughts and feelings. He/she may be hiding his/herfears and frustrations for the sake of the family, or some other reason,or maybe he/she just doesn't have any fears or frustrations. This goesfor the Caregiver as well.>> Bottom line. The board is an On line Support group. Underline Support.We are here to support each other the best way that we can. It'ssupposed 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 for everyone.If you don't like someone or the way they respond or ??, you can deleteand not read them. If you have an issue with someone personally, you canemail them personally. Issues can be addressed discreetly off the board.>> In the patient poll, people have responded favorably that they wouldlike to include Caregivers. If this is truly how everyone feels, thiswould mean that we would open the group to everyone. The two groupswould be merged. Right now patients are referred to the patient groupand caregivers are referred to the caregiver group. We would not justhave the few caregivers that are currently on our board. Honestly, Idon't want that. I would like to keep the groups as separate aspossible. I understand that there may be a caregiver or two who may wantto get a different patient perspective or just have a question, but thatis extremely hard to moderate. Honestly, I don't think the caregiverswould want the patients on their board, but I for one, am not pollingthem.>> I'm as Christian as the next person and I truly want to do what'sright for US. This is OUR board. Hence the poll. I'm sorry that itstirred up so many pots. We have so much other "stuff" to deal with andI didn't realize that I stirred up a hornet's nest. I've learnedthroughout my life that people take things personally. A friend of mineonce said, it's because were a person. We're human. We're dealing with aterminal illness on both sides doing the best we can each and every day.Some days are better than others.>> But, we will put this behind us and we will be a stronger boardbecause of it. I've been so blessed to have this Board in my life. Ithas helped me through so many rough times. I've personally met friends Iwill have for life. I am so blessed. Can we please put this situationbehind us and move forward from here?>> Leanne> Owner - Breathe Support Groups> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 What I gather from her post is that caregivers should post on the other forum. 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 and her moderators. If they feel someone shouldn't be here for whatever reason then they will take care of it and we really shouldn't be trying to do their jobs for them. My opinion that its their decision and I support whatever they decide far overshadows any opinion which I have on the subject and which I have not disclosed here or otherwise because I don'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 not want 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 caregivers on > the patient site or vice-versa. As the owner of the site and the > representative of the Pulmonary Fibrosis Foundation which sponsors this > site, I would like to explain the reasoning behind our decision to keep > 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 others live > 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 other reason, > 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. Underline Support. > 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 for everyone. > If you don't like someone or the way they respond or ??, you can delete > and not read them. If you have an issue with someone personally, you can > email them personally. Issues can be addressed discreetly off the board. > & gt; > & gt; In the patient poll, people have responded favorably that they would > 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 may want > to get a different patient perspective or just have a question, but that > 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 with and > 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 of mine > once said, it's because were a person. We're human. We're dealing with a > terminal illness on both sides doing the best we can each and every day. > 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 friends I > 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...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 , No one is being asked to leave, things will go on as they have been. We will have some caregivers on the board, it's the nature of this format. One thing that I think only the moderators realize is that if we opened the board up to all caregivers this board would change dramatically. The requests that we get to join the board are about 75% of the time from caregivers. Remember that there are many many people with this disease much sicker than most of us are. The caregivers are looking for support and information in caring for their loved ones. When I get requests to join from a caregiver, I write them an email and suggest that their needs would be best met by the Caregiver board. I supply them with the link to that board and give them my name and email in the event that they have concerns and want to contact me. So far no one has. Most of the time people want support and information from folks that are in the best position to understand their needs. Patients for patients and caregivers for caregivers. Will there be some mixing? Of course, from time to time and in certain situations. What I can say for sure is that no one has been asked to leave and no one will be asked to leave. All Leanne was attempting to do what gather information, that's all. The fact that it blew up to what it did astonishes me and disappoints me. As several people have said, let's see if we can move past this and get on with what we have been doing all along. Helping each other! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Patients vs Caregivers>>> There is currently a debate going on whether to allow caregivers onthe patient site or vice-versa. As the owner of the site and therepresentative of the Pulmonary Fibrosis Foundation which sponsors thissite, I would like to explain the reasoning behind our decision to keepthe members separated according to their situation.>> Each group has their own set of feelings, fears frustrations, etc.that they must face and work through. A caregiver, no matter how muchthey read, can never know what it is like to be a patient andvice-versa.>> Each patient is different, some dwell on their disease others livetheir lives as if there was nothing wrong with them and every shade ofgray in between. The only way to understand an individual, whether apatient or a caregiver, is to communicate. A patient may not want todiscuss his/her thoughts and feelings. He/she may be hiding his/herfears and frustrations for the sake of the family, or some other reason,or maybe he/she just doesn't have any fears or frustrations. This goesfor the Caregiver as well.>> Bottom line. The board is an On line Support group. Underline Support.We are here to support each other the best way that we can. It'ssupposed 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 for everyone.If you don't like someone or the way they respond or ??, you can deleteand not read them. If you have an issue with someone personally, you canemail them personally. Issues can be addressed discreetly off the board.>> In the patient poll, people have responded favorably that they wouldlike to include Caregivers. If this is truly how everyone feels, thiswould mean that we would open the group to everyone. The two groupswould be merged. Right now patients are referred to the patient groupand caregivers are referred to the caregiver group. We would not justhave the few caregivers that are currently on our board. Honestly, Idon't want that. I would like to keep the groups as separate aspossible. I understand that there may be a caregiver or two who may wantto get a different patient perspective or just have a question, but thatis extremely hard to moderate. Honestly, I don't think the caregiverswould want the patients on their board, but I for one, am not pollingthem.>> I'm as Christian as the next person and I truly want to do what'sright for US. This is OUR board. Hence the poll. I'm sorry that itstirred up so many pots. We have so much other "stuff" to deal with andI didn't realize that I stirred up a hornet's nest. I've learnedthroughout my life that people take things personally. A friend of mineonce said, it's because were a person. We're human. We're dealing with aterminal illness on both sides doing the best we can each and every day.Some days are better than others.>> But, we will put this behind us and we will be a stronger boardbecause of it. I've been so blessed to have this Board in my life. Ithas helped me through so many rough times. I've personally met friends Iwill have for life. I am so blessed. Can we please put this situationbehind us and move forward from here?>> Leanne> Owner - Breathe Support Groups> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Leanne, Thanks for posting about alternative medicine since it is my only route. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Re: interesting website Thanks, Leanne, I put it in my favorites, will read it tomorrow. You are so GOOD.I LOVE YOU THIS DAY.MARY LOU ----IPF '02-- In Breathe-Support@ yahoogroups. com, Leanne Storch wrote:>> When I was in Washington DC, one of the talks we heard was on complementary and alternative medicine. Here's their website to check out: www.nccam.nih. gov.> > > Leanne Storch> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2008 Report Share Posted July 27, 2008 Hey Leanne, I know it has been awhile since I stuck my head into the group, but wanted to let you know that I am doing well. I go for my PFT's tomorrow, and as always am a little nervous. While my PF is very mild, I feel that sword of Damocles hanging over my head every time I go for this test. My question is this....is this your personal email, and if not could you email it to me? There is something of a personal nature that I would like to ask you about. Email me at iill3604@... Thanks Tillman _______________________________________________________________ Tillman, Regional Coordinator, Mid Atlantic-USAHermansky-Pudlak Syndrome Network IncMy NC phone:1 NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2008 Report Share Posted July 27, 2008 Hi , I'm glad you're doing Well!. All the Best with the PFT's tommorrow! IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 Leanne Hey Leanne, I know it has been awhile since I stuck my head into the group, but wanted to let you know that I am doing well. I go for my PFT's tomorrow, and as always am a little nervous. While my PF is very mild, I feel that sword of Damocles hanging over my head every time I go for this test. My question is this....is this your personal email, and if not could you email it to me? There is something of a personal nature that I would like to ask you about. Email me at iill3604bellsouth (DOT) net Thanks Tillman ____________ _________ _________ _________ _________ _________ ______ Tillman, Regional Coordinator, Mid Atlantic-USAHermansky-Pudlak Syndrome Network IncMy NC phone:1 NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwo rk.org One South Road Oyster Bay, NY 11771 Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 Leanne I know it was great hugging and meeting Vicky. How was the rest of your trip? Did it refresh and relax both you and Mike? I hope it was everything you hoped for. > > It was so great hugging Ms. Vicky in person! I'm so thankful that we > got to spend some time together. Thanks Vicky for posting the pics. I > can still feel that huggggggggggggggggggggggggggggggggg. Love you > girlfriend! > > Leanne uip 1/03 Illinois > Quote Link to comment Share on other sites More sharing options...
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