Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 MB ... last night I was watching Stand Up For Cancer and thought wouldn't it be nice if something similar could be done for us? Maybe start with local call-ins/production and expand out from there. At least we would get some notice! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Sher, It would be lovely to have such an effort made on our behalf. Remember though there are many times the number of people struggling with cancer than there are people diagnosed with PF like us. It's much easier to get people to pay attention to information about cancer and donate money to efforts to eradicate it when pretty much everyone knows someone who's died from it. Unfortunately most people have never even heard of pulmonary fibrosis. I've been working for months to try to get my local newspaper to write an article about pf to no avail. I'm not discouraged but I am frustrated. It takes awareness and then money to make progress against this disease. For now I'm going to continue to work on the awareness portion! I'm pretty relentless once I get started. I'll steamroller then into paying attention to us! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 MB ... yes, I am aware of all you write. Just wishful thinking on my part. I should write an article and submit to my local paper. I've done a lot of writing for and to them and they usually accept what I submit. I've felt so blahhh lately that even typing/thinking is tiresome... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
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