Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Hi Noreen, I've been meaning all day to respond to your message from earlier. I wanted to say I understand if you feel overwhelmed and perhaps as though everyone understands this and you're standing on the outside looking in trying to make sense of it all. That was me just about two years ago. I remember after I had been discharged from the hospital in June of 06. I was sent home on many meds, continuous O2 24/7, and a fatal diagnosis. I was petrified and in shock. But doing what I usually do, I put on a brave face for family and friends and set about trying to recover. I had been told to call NY's Columbia Presbyterian Hospital for an app't with a fibrosis specialist and to my local rehab hospital to get signed up for pulmonary rehab. Because of the way things work and 's law it was a couple of weeks before I had those things taken care of. I remember the day I had both things done and had appointments scheduled, my sister Amy called me that evening and innocently asked how I was and had I made any progress. With that I burst into tears and could not stop crying for about 15 minutes. She calmly listened to me crying, hiccuping, coughing etc and then told me that in her experience (she's a physician) the most frustrating time for a patient is the time between diagnosis and when treatment begins. That was exactly it....hit the nail on the head. I'm a take charge kind of person (some would say control freak) and it was so difficult when it felt like I was doing nothing and didn't understand what was going on. Just that realization helped me. What I'm getting at with all this long winded blather is that you should be patient with yourself. There's a learning curve here and you're at the beginning of it. We've all been there and it's a very uncomfortable place to be. We have a phone chat every other Thursday (there's one coming up this week) or if you feel more comfortable pick one of us that you feel comfortable with and email us privately. Or look in the database to see if someone you feel comfortable with has a phone number listed in there and call us. Or call the Foundation and talk to someone there. They will send you a helpful booklet if you call them. In the meantime just be kind to yourself. Eat well, sleep as much as you need to and take really good care of Noreen. If you would prefer to read the messages on the board and not receive them as emails you can change your preferences by going to the groups homepage http://health.groups.yahoo.com/group/Breathe-Support/ , near the top on the left click where it says Edit Membership, then you can change those preferences. Please let me know if there's anything I can do to help! Beth Moderator Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive hiDate: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some. noreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 MB, Did I tell you lately I Love You and can't wait for Sept..... Love and Prayers, Peggy IPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Hi Noreen,I've been meaning all day to respond to your message from earlier. I wanted to say I understand if you feel overwhelmed and perhaps as though everyone understands this and you're standing on the outside looking in trying to make sense of it all. That was me just about two years ago.I remember after I had been discharged from the hospital in June of 06. I was sent home on many meds, continuous O2 24/7, and a fatal diagnosis. I was petrified and in shock. But doing what I usually do, I put on a brave face for family and friends and set about trying to recover. I had been told to call NY's Columbia Presbyterian Hospital for an app't with a fibrosis specialist and to my local rehab hospital to get signed up for pulmonary rehab. Because of the way things work and 's law it was a couple of weeks before I had those things taken care of. I remember the day I had both things done and had appointments scheduled, my sister Amy called me that evening and innocently asked how I was and had I made any progress. With that I burst into tears and could not stop crying for about 15 minutes. She calmly listened to me crying, hiccuping, coughing etc and then told me that in her experience (she's a physician) the most frustrating time for a patient is the time between diagnosis and when treatment begins. That was exactly it....hit the nail on the head. I'm a take charge kind of person (some would say control freak) and it was so difficult when it felt like I was doing nothing and didn't understand what was going on. Just that realization helped me.What I'm getting at with all this long winded blather is that you should be patient with yourself. There's a learning curve here and you're at the beginning of it. We've all been there and it's a very uncomfortable place to be. We have a phone chat every other Thursday (there's one coming up this week) or if you feel more comfortable pick one of us that you feel comfortable with and email us privately. Or look in the database to see if someone you feel comfortable with has a phone number listed in there and call us. Or call the Foundation and talk to someone there. They will send you a helpful booklet if you call them. In the meantime just be kind to yourself. Eat well, sleep as much as you need to and take really good care of Noreen. If you would prefer to read the messages on the board and not receive them as emails you can change your preferences by going to the groups homepage http://health.groups.yahoo.com/group/Breathe-Support/ , near the top on the left click where it says Edit Membership, then you can change those preferences. Please let me know if there's anything I can do to help! Beth ModeratorAge 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive hiDate: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some.noreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Beth, Thanks for all the encouragement and info. I am feeling lost and confused but like you I'm a strong woman and once I start getting info I run with it and learn as much more as I can. I went to the home page as you suggested and changed to "web only" for talking with the group. Is this what you suggested.? I don't know much about the internet and how it works. My M.S. support groups were chat rooms. But getting 103 e-mails a day is a wee bitve overwelming! I'd love to meet you all but a few at a time seems best for me right now. Did I do the change right? Again, thanks for the support and care that came through so strongly. noreen hiDate: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some. noreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Noreen, Yes that's precisely what I was referring to. The group generates alot of messages and sometimes it's just easier to read them directly from the board instead of having them sent as emails. I have no doubt that you are a strong woman. You've already had to cope with so much, this is just another adjustment to make, something else to learn etc etc. You will do it and in no time at all you'll be the one reaching out and offering support and encouragement to someone else! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive hiDate: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some. noreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Noreen You'll also find that while chat rooms are nice, there are certain real advantages to a forum like this. In a chat room, your responses are limited to those there at the moment. Here you'll get responses to key questions you ask from those who aren't here until a day later. Also, here everything is maintained so you can go back and you can use a search feature thats near the top of the page. I remember the first time I was ever prescribed Levaquin. I knew it had been discussed but I hadn't paid much attention at the time. I couldn't wait to get home from ER to find out what other's experiences were. So, I got home, and entered Levaquin in the search box and knew quickly what side effects were common, which ones were serious, and which ones were just annoying (thrush mouth). > > > Hi Noreen, > I've been meaning all day to respond to your message from earlier. I wanted to say I understand if you feel overwhelmed and perhaps as though everyone understands this and you're standing on the outside looking in trying to make sense of it all. That was me just about two years ago. > I remember after I had been discharged from the hospital in June of 06. I was sent home on many meds, continuous O2 24/7, and a fatal diagnosis. I was petrified and in shock. But doing what I usually do, I put on a brave face for family and friends and set about trying to recover. I had been told to call NY's Columbia Presbyterian Hospital for an app't with a fibrosis specialist and to my local rehab hospital to get signed up for pulmonary rehab. Because of the way things work and 's law it was a couple of weeks before I had those things taken care of. I remember the day I had both things done and had appointments scheduled, my sister Amy called me that evening and innocently asked how I was and had I made any progress. With that I burst into tears and could not stop crying for about 15 minutes. She calmly listened to me crying, hiccuping, coughing etc and then told me that in her experience (she's a physician) the most frustrating time for > a patient is the time between diagnosis and when treatment begins. That was exactly it....hit the nail on the head. I'm a take charge kind of person (some would say control freak) and it was so difficult when it felt like I was doing nothing and didn't understand what was going on. Just that realization helped me. > What I'm getting at with all this long winded blather is that you should be patient with yourself. There's a learning curve here and you're at the beginning of it. We've all been there and it's a very uncomfortable place to be. We have a phone chat every other Thursday (there's one coming up this week) or if you feel more comfortable pick one of us that you feel comfortable with and email us privately. Or look in the database to see if someone you feel comfortable with has a phone number listed in there and call us. Or call the Foundation and talk to someone there. They will send you a helpful booklet if you call them. In the meantime just be kind to yourself. Eat well, sleep as much as you need to and take really good care of Noreen. > > If you would prefer to read the messages on the board and not receive them as emails you can change your preferences by going to the groups homepage http://health. groups.yahoo. com/group/ Breathe-Support/ , near the top on the left click where it says Edit Membership, then you can change those preferences. > > Please let me know if there's anything I can do to help! > Beth > Moderator > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > Change everything. Love and Forgive > > > > > > hi > Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) > > > > > I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some. > noreen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Thanks! this is so much easier..if I'm doing it right! I'm on the west coast, Oregon. Are most of the people here in the east or abroad? Seems everyone if off line when I come in. You have been so helpful I thought maybe you could be my tutor until I know what i'M doing. I don'[t understand most of what you all are talking about because right now I HAVE a dx but nothing is being done except I'm on an inhaler called Combivent and have Albuteral for emergencys. A biop is in the future but is being put off until I have at least one more PFT done. My Pulmon doc is hesitant about surgery because I have multiple scerosis, diabetes and a few other problems. And a tendency to get pneumonia. What I have been reading in here I have no idea what it all means. But I plan to learn! thanks again noreen > > > Hi Noreen, > I've been meaning all day to respond to your message from earlier. I wanted to say I understand if you feel overwhelmed and perhaps as though everyone understands this and you're standing on the outside looking in trying to make sense of it all. That was me just about two years ago. > I remember after I had been discharged from the hospital in June of 06. I was sent home on many meds, continuous O2 24/7, and a fatal diagnosis. I was petrified and in shock. But doing what I usually do, I put on a brave face for family and friends and set about trying to recover. I had been told to call NY's Columbia Presbyterian Hospital for an app't with a fibrosis specialist and to my local rehab hospital to get signed up for pulmonary rehab. Because of the way things work and 's law it was a couple of weeks before I had those things taken care of. I remember the day I had both things done and had appointments scheduled, my sister Amy called me that evening and innocently asked how I was and had I made any progress. With that I burst into tears and could not stop crying for about 15 minutes. She calmly listened to me crying, hiccuping, coughing etc and then told me that in her experience (she's a physician) the most frustrating time for > a patient is the time between diagnosis and when treatment begins. That was exactly it....hit the nail on the head. I'm a take charge kind of person (some would say control freak) and it was so difficult when it felt like I was doing nothing and didn't understand what was going on. Just that realization helped me. > What I'm getting at with all this long winded blather is that you should be patient with yourself. There's a learning curve here and you're at the beginning of it. We've all been there and it's a very uncomfortable place to be. We have a phone chat every other Thursday (there's one coming up this week) or if you feel more comfortable pick one of us that you feel comfortable with and email us privately. Or look in the database to see if someone you feel comfortable with has a phone number listed in there and call us. Or call the Foundation and talk to someone there. They will send you a helpful booklet if you call them. In the meantime just be kind to yourself. Eat well, sleep as much as you need to and take really good care of Noreen. > > If you would prefer to read the messages on the board and not receive them as emails you can change your preferences by going to the groups homepage http://health. groups.yahoo. com/group/ Breathe-Support/ , near the top on the left click where it says Edit Membership, then you can change those preferences. > > Please let me know if there's anything I can do to help! > Beth > Moderator > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > Change everything. Love and Forgive > > > > > > hi > Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) > > > > > I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some. > noreen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Beth, I too am having trouble keeping up with so many E Mails, yet I do not want to drop my membership. I tried what you told Noreen, but I just didn't find what you were talking about. Can you help me cut down on the E Mails but still keep up with my precious "Air Family"? Gale in TX Re: Noreen Noreen, Yes that's precisely what I was referring to. The group generates alot of messages and sometimes it's just easier to read them directly from the board instead of having them sent as emails. I have no doubt that you are a strong woman. You've already had to cope with so much, this is just another adjustment to make, something else to learn etc etc. You will do it and in no time at all you'll be the one reaching out and offering support and encouragement to someone else! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive hi Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some. noreen Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Noreen Have you had CT's? Actually we have several members from the Pacific Northwest and some from California. In fact, there was a gathering a couple of months ago in Oregon of some members and spouses. It was an incredible time. If you ever have a chance to actually meet others from the board, its so nice. I'm fortunate that I've met quite a few but I do want to add to the list. And we all continue to learn. I've learned so much here about the disease and just about living with it. Actually, much that would benefit anyone, with or without the disease. As to people being on and offline, I think most still work through emails or daily digests. I, like you, greatly prefer the web. > > > > > > Hi Noreen, > > I've been meaning all day to respond to your message from earlier. I > wanted to say I understand if you feel overwhelmed and perhaps as though > everyone understands this and you're standing on the outside looking in > trying to make sense of it all. That was me just about two years ago. > > I remember after I had been discharged from the hospital in June of > 06. I was sent home on many meds, continuous O2 24/7, and a fatal > diagnosis. I was petrified and in shock. But doing what I usually do, I > put on a brave face for family and friends and set about trying to > recover. I had been told to call NY's Columbia Presbyterian Hospital for > an app't with a fibrosis specialist and to my local rehab hospital to > get signed up for pulmonary rehab. Because of the way things work and > 's law it was a couple of weeks before I had those things taken > care of. I remember the day I had both things done and had appointments > scheduled, my sister Amy called me that evening and innocently asked how > I was and had I made any progress. With that I burst into tears and > could not stop crying for about 15 minutes. She calmly listened to me > crying, hiccuping, coughing etc and then told me that in her experience > (she's a physician) the most frustrating time for > > a patient is the time between diagnosis and when treatment begins. > That was exactly it....hit the nail on the head. I'm a take charge kind > of person (some would say control freak) and it was so difficult when it > felt like I was doing nothing and didn't understand what was going on. > Just that realization helped me. > > What I'm getting at with all this long winded blather is that you > should be patient with yourself. There's a learning curve here and > you're at the beginning of it. We've all been there and it's a very > uncomfortable place to be. We have a phone chat every other Thursday > (there's one coming up this week) or if you feel more comfortable pick > one of us that you feel comfortable with and email us privately. Or look > in the database to see if someone you feel comfortable with has a phone > number listed in there and call us. Or call the Foundation and talk to > someone there. They will send you a helpful booklet if you call them. In > the meantime just be kind to yourself. Eat well, sleep as much as you > need to and take really good care of Noreen. > > > > If you would prefer to read the messages on the board and not receive > them as emails you can change your preferences by going to the groups > homepage http://health. groups.yahoo. com/group/ Breathe-Support/ , near > the top on the left click where it says Edit Membership, then you can > change those preferences. > > > > Please let me know if there's anything I can do to help! > > Beth > > Moderator > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > Change everything. Love and Forgive > > > > > > > > > > > > hi > > Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) > > > > > > > > > > I've recently been dx'd with IPF and know almost nothing about it. > Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much > info from my doc as he is waiting to see how things improve with my > quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I > also have multiple sclerosis and diabetes. But in the meantime I feel > hung up with no info and lost in space. Would love to have friends who > will help me find myself again and who I can help in anyway. Looking > forward to meeting some. > > noreen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Gale Let me give you another way to do the same thing Beth suggested. Maybe this will work better for you. Go to this page: http://health.groups.yahoo.com/group/Breathe-Support/messages You may need to sign in with your yahoo id. You can read messages there. Now, in the upper right side once you're signed in you will see "My Groups" . Click on that and it will show you any groups you belong to. Then click on "Edit my Groups" and then on this group you can change from individual emails to either daily digests or web only. You can put the link above as a favorite and always get here easily and quickly when you want. > > > > > > > > > > > > > > > > > > > Hi Noreen,> > > I've been meaning all day to respond to your message from earlier.? I wanted to say I understand?if you feel overwhelmed and perhaps as though everyone understands this?and you're standing on the outside looking in trying to make sense of it all.? That was me just about two years ago.> > > I remember after I had been discharged from the hospital in June of 06. I was sent?home on many meds, continuous O2 24/7, and a fatal diagnosis. I was petrified and in shock. But doing what I usually do, I put on a brave face for family and friends and set about trying to recover. I had been told to call NY's Columbia?Presbyterian Hospital for an?app't with a fibrosis specialist and to my local rehab hospital?to get signed up for pulmonary rehab. Because of the way things work and 's law it was a couple of weeks before I had those things taken care of. ?I remember the day I had both things done and had appointments scheduled, my sister Amy called me that evening and innocently asked how I was and had I made any progress. With that I burst into tears and could not stop crying for about 15 minutes.? She calmly listened to me crying, hiccuping, coughing etc and then told me that in her experience (she's a physician)> the most frustrating time for a patient is the time between diagnosis and when treatment begins. That was exactly it....hit the nail on the head. I'm a take charge kind of person (some would say control freak) and it was so difficult when it felt like I was doing nothing and didn't understand what was going on.? Just?that realization helped me.> > > What?I'm getting at with all this long winded blather is that?you should be patient with yourself. There's a learning curve here and you're at the beginning of it. We've all been there and it's a very?uncomfortable?place to be.?We have a phone chat every other Thursday (there's one coming up this week) or if you feel more comfortable pick one of us that you feel comfortable?with and email us privately. Or look in the database to see if?someone you feel comfortable?with has a phone number listed in there and call us. Or call the Foundation and talk to someone there. They will send you a helpful booklet if you call them. In the meantime just be kind to yourself. Eat well, sleep as much as you need to and take really good care of Noreen.> > > ?> > > If?you would prefer to read the messages on the board and not receive them as emails you can change your preferences by going to the groups homepage?http://health. groups.yahoo. com/group/ Breathe-Support/?,?near the top on the left click where it says Edit Membership, then you can change those preferences.> > > ?> > > Please let me know if there's anything I can do to help!> ?> > > Beth?> > > Moderator> > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> > > ?> > > Change everything. Love and Forgive????> > > ?> > > ?> > > > > > > > > > ? hi> Date:?Fri, 22 Aug 2008 20:00:56 -0700 (PDT)> > > > > > > > > > > > > > > > ??? I've recently been dx'd with IPF and know almost nothing about it.? Have had 2 PFT's done and am waiting to do a 3rd.? Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08!? He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes.? But in the meantime I feel hung up with no info and lost in space.? Would love to have friends who will help me find myself again and who I can help in anyway.? Looking forward to meeting some.> > > noreen> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Gale, If you have any problems making the changes that you want, let me know and I'll do it for you. You have a couple of options...you can choose to get the messages as individual emails. You can choose to get them in a "digest format" emailed to you where the put several messages into one email or you can choose "web only" where you read the messages directly from the board and don't receive any emails at all. Let me know if I can help! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive ?[breathe- Support] hi> Date:?Fri, 22 Aug 2008 20:00:56 -0700 (PDT)> > > > > > > > > > > > > > > > ??? I've recently been dx'd with IPF and know almost nothing about it.? Have had 2 PFT's done and am waiting to do a 3rd.? Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08!? He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes.? But in the meantime I feel hung up with no info and lost in space.? Would love to have friends who will help me find myself again and who I can help in anyway.? Looking forward to meeting some.> > > noreen> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Whoooo Hoo Noreen! I'm in Oregon. About 25 miles South of Portland. Where are you? We have members all across the Nation. A whole lot of members in TX., mid west...it's nice to know someone is here in Oregon. There are very few of us in the PNW. Most in WA around Seattle and Olympia. We just had a gathering over Father's Day. It's wonderful to meet members! I've been reading your posts. Be sure and gather all the information before you decide on a bio. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! hi> Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT)>>>>> I've recently been dx'd with IPF and know almost nothing about it.Have had 2 PFT's done and am waiting to do a 3rd. Haven't received muchinfo from my doc as he is waiting to see how things improve with myquitting smoking...quit 1/1/08! He wants to put off doing a biopsy as Ialso have multiple sclerosis and diabetes. But in the meantime I feelhung up with no info and lost in space. Would love to have friends whowill help me find myself again and who I can help in anyway. Lookingforward to meeting some.> noreen> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Hey Bruce... the PNW met in Olympia WA. There was only me and Rich in Oregon so we did the driving. I'd do it again! What fun. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! hi> > Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT)> >> >> >> >> > I've recently been dx'd with IPF and know almost nothing about it.> Have had 2 PFT's done and am waiting to do a 3rd. Haven't receivedmuch> info from my doc as he is waiting to see how things improve with my> quitting smoking...quit 1/1/08! He wants to put off doing a biopsy asI> also have multiple sclerosis and diabetes. But in the meantime I feel> hung up with no info and lost in space. Would love to have friends who> will help me find myself again and who I can help in anyway. Looking> forward to meeting some.> > noreen> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 > > > > > > Hi Noreen, > > I've been meaning all day to respond to your message from earlier. I > wanted to say I understand if you feel overwhelmed and perhaps as though > everyone understands this and you're standing on the outside looking in > trying to make sense of it all. That was me just about two years ago. > > I remember after I had been discharged from the hospital in June of > 06. I was sent home on many meds, continuous O2 24/7, and a fatal > diagnosis. I was petrified and in shock. But doing what I usually do, I > put on a brave face for family and friends and set about trying to > recover. I had been told to call NY's Columbia Presbyterian Hospital for > an app't with a fibrosis specialist and to my local rehab hospital to > get signed up for pulmonary rehab. Because of the way things work and > 's law it was a couple of weeks before I had those things taken > care of. I remember the day I had both things done and had appointments > scheduled, my sister Amy called me that evening and innocently asked how > I was and had I made any progress. With that I burst into tears and > could not stop crying for about 15 minutes. She calmly listened to me > crying, hiccuping, coughing etc and then told me that in her experience > (she's a physician) the most frustrating time for > > a patient is the time between diagnosis and when treatment begins. > That was exactly it....hit the nail on the head. I'm a take charge kind > of person (some would say control freak) and it was so difficult when it > felt like I was doing nothing and didn't understand what was going on. > Just that realization helped me. > > What I'm getting at with all this long winded blather is that you > should be patient with yourself. There's a learning curve here and > you're at the beginning of it. We've all been there and it's a very > uncomfortable place to be. We have a phone chat every other Thursday > (there's one coming up this week) or if you feel more comfortable pick > one of us that you feel comfortable with and email us privately. Or look > in the database to see if someone you feel comfortable with has a phone > number listed in there and call us. Or call the Foundation and talk to > someone there. They will send you a helpful booklet if you call them. In > the meantime just be kind to yourself. Eat well, sleep as much as you > need to and take really good care of Noreen. > > > > If you would prefer to read the messages on the board and not receive > them as emails you can change your preferences by going to the groups > homepage http://health. groups.yahoo. com/group/ Breathe- Support/ , near > the top on the left click where it says Edit Membership, then you can > change those preferences. > > > > Please let me know if there's anything I can do to help! > > Beth > > Moderator > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > Change everything. Love and Forgive > > > > > > > > > > > > hi > > Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT) > > > > > > > > > > I've recently been dx'd with IPF and know almost nothing about it. > Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much > info from my doc as he is waiting to see how things improve with my > quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I > also have multiple sclerosis and diabetes. But in the meantime I feel > hung up with no info and lost in space. Would love to have friends who > will help me find myself again and who I can help in anyway. Looking > forward to meeting some. > > noreen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Noreen ... I'm about the only one here in this area. I think I'm the only one in the database in OR. Have you added your info. into the database? Good place for others to find your name, etc and location too. You can check there too for people close to you...maybe CA if you go there. I'm not clear on what you wrote....who are "others"? Others, not connected with PF, have been east and central US MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! hi> > Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT)> >> >> >> >> > I've recently been dx'd with IPF and know almost nothing about it.> Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much> info from my doc as he is waiting to see how things improve with my> quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I> also have multiple sclerosis and diabetes. But in the meantime I feel> hung up with no info and lost in space. Would love to have friends who> will help me find myself again and who I can help in anyway. Looking> forward to meeting some.> > noreen> >> Quote Link to comment Share on other sites More sharing options...
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