Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Mine goes nuts to. But mine is due to me being out of shape and not walking enough. I started back on our dreadmill today.I have to get moving. Love and Prayers, PeggyHave a God Blessed Day Thanks Peggy, the sats seem to be ok...mid nineties...as I said, it's the heart beat that worries me. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! DON'T FORGET "GROUP CHAT" 7pm ESTKATHY, LOVED your album. How beautiful you are. A great smile.I am looking forward to our group chat tonight hoping to chat with you all. And for Peggy to be leading the group is a treat too. We will miss Leanne though.Love, Lou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Thanks for sharing that Peggy. I'm glad I'm not the only one. As soon as the results are in from the cardio workup then I will try the treadmill again myself. If only 10 min. It's better than sedentary! Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! DON'T FORGET "GROUP CHAT" 7pm EST KATHY, LOVED your album. How beautiful you are. A great smile.I am looking forward to our group chat tonight hoping to chat with you all. And for Peggy to be leading the group is a treat too. We will miss Leanne though.Love, Lou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Thanks for sharing that Peggy. I'm glad I'm not the only one. As soon as the results are in from the cardio workup then I will try the treadmill again myself. If only 10 min. It's better than sedentary! Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! DON'T FORGET "GROUP CHAT" 7pm EST KATHY, LOVED your album. How beautiful you are. A great smile.I am looking forward to our group chat tonight hoping to chat with you all. And for Peggy to be leading the group is a treat too. We will miss Leanne though.Love, Lou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Sher,There was a lady on the board a few years ago that has passed but her daughter-in law answered the questions no one wanted to ask. She and her husband were with Doris while she passed and said it was very peaceful. I know when these conversation come up some are worried if they'll suffer. It sometimes is so scary when we loose our breath and then to think of how it will be really does a number on our minds. I am going to see if I can find it. It gave me peace and I think it will help others to know... Love and Prayers, PeggyHave a God Blessed Day Bruce... well written and I certainly agree with much of what you say.I'm not focusing on the dying part at all and I'm not attempting to 'label stages'. I am only curious as to how one feels differently, at the so called 'end stage' as various ones refer to themselves. I think when we are in the process of dying we know it. And a Dx. cannot "tell us we are in end stage". I think that comes from within, as does what one does with that knowledge. Candidly talking about death and dying takes courage and bravery that a great many here have. Those who have that courage can share with those of us who want to know what's really ahead.... (even tho' it's different for all)... or what is end stage beyond the Dx??When I realized I have recently progressed in this disease, it took me a little while to make another adjustment. Now, I say the way it is is the way it is, and go on.I feel strongly that when we who are behind those who are farther ahead, when we arrive at their same place we too will then become the example of strength and courage for those coming from farther behind us. I have no doubt you will Bruce and I hope I will.For some reason I am reminded of "Onward Christian Soldiers"........Wanting information from those who are in the experience helps me and helps me help others. That is my primary motivation, not morbid concentration.I hope you feel stronger every day! Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: 02 saga; to Sher re. end stageGwynne and SherGwynneI haven't seen the same problems with Lincare I have with Apria. Infact, with all my traveling coming up and with the advantages of Cairein some areas, I had considered just calling to talk to them for futurereference. But, from what I've read generally and from the BBB, theycertainly appear above Apria in most areas.As to cleaning up well, oh my you really do, Gwynne. I'm sure no one whosees you knows how much effort it is to get ready. But, the very factthat you go to that trouble says so much and says how much alive youstill are. I can't imagine yet how the fears of things happening when noone is there or noticing are. I know that living alone they hit mesometimes and I'm sure its only a small percentage of how hard they hitwhen they come to you. I read several times your statements regardingnow feeling sick as opposed to healthy. Again, I know thats got to be sodifficult as I'm determined to feel healthy as long as possible and Iknow you did. If one says you were in denial or I am, then sowhat....denial, while knowing the reality but shutting it out a bit, isa wonderful state. I dread the day that denial is no longer possible andfeel for you losing it.Sher, as to end stageThe way I think of it is upon death and entering afterlife then I'llknow that I was just in end-stage. Until that time, I'm alive. I don'tcare to try to define it. I'm living, each day I'm one day closer todeath, and at some point I will die. But if I start labelling stagesthen I might start surrending to them. Then I'm dead even thoughtechnically alive. If I thought about my stage or how much time or whatlevel 3 months or 6 months from now too much, I'd destroy myselfemotionally and be unable to enjoy any part of life. Intellectually, Iknow the realities and planned for them, but emotionally I have to justlive today and make the most of it. Gwynne still finds a way to squeezequality from life. I see Joyce who so easily could have placed a labelon where she was before the Flolan treatment but who instead say, "no,I'm not there yet and I'm going to try this" and look at what she's donerecently and the improvement. She's the first person I've known to useFlolan and, honestly, I didn't know at the time if I would have triedit. But, I see what refusing to give up and her choice to do try it hasgiven her.There isn't a group of people anywhere in the world that does better atgrabbing every ounce of beauty life has to offer than this group.>> Hi All,> The rep for Caire products (Liberator, Stroller portables,> etc.) talked with the branch mgr. and CEO of the local> 02 supplier who hasn't called me back (which was just> bought out by another company called Rotech). They told> him they don't think they have the "manpower" to handle> me as a client. The rep is going to continue to help me -> he's a really nice guy - but he thinks I may end up having> to go with Lincare or Apria. After everything you all have> written about them, that horrifies me. But I'll do what I> have to do to get my oxygen needs met. It's just distressing,> because I need the equipment yesterday.>> Kathie,> Phooey on the coughing. I'm doing quite a bit of it> myself, and it hurts and is so exhausting. I hope you> get relief soon!>> Kerry,> I LOVE Super O! She's awesome, just like her inspiration> and her creator.>> Beth,> Great news about not having PAH. I'm thrilled that you> don't have that on top of everything else. Give me an "S"> (for stable)! Hopefully the other lurking issue won't cause> many problems, at least not for a very long time.>> Jane,> I hope Emory calls you soon with the go-ahead for the> STEP Trial. Hope you're having a good weekend.>> Bruce,> Rest up, please. You've been quite the busy bee. If we've> waited this long, we can wait a bit longer for your wordy> pearls. :-) I'm sorry you're having increased 02 needs.>> Z,> I hope you're feeling a bit steadier. How fast are these> exercises supposed to offer you potential relief? Wall> hugging is no fun.> I hope 's having better days.>> K,> I have a wonderful local pulmo here in Ft. Worth, in> addition to my transplant pulmo at UTSW in Dallas.> The local doc suggested to me once to view life in> terms of seasons rather than years. For me, living> through another season (any season) is a real gift.> Currently, I have definite plans to make through the> spring and its beauty.>> Mama-Sher,> There is a specific type of PF that is contracted by> people who raise and handle birds. yuk.> Sher, as a sort of answer to your "end stage"> questions, my best answer is not to trouble yourself> with such things. P (I think) posted the medical> definition of end stage IPF. It's a list, but that's all it> is. My docs want desperately to get a lung for me,> but when I asked them if I were in end stage they> said you've been there for a year and a half, but> you're pretty stable. At ANY stage stable is good. At> ANY stage you can plateau out and stay at that stage> for an indefinite time. It's just not good to live in> denial, especially to the point that you can't prepare> for the next steps, which has served me well... I'm> talking about things like higher flow portables, power> chairs, stair chairs, etc. I got them all just a little bit> before I was convinced I needed them, and then realized> I SO needed them.> As far as how you feel in end stage, you can definitely> just tell that you're worse, and you realize that you> could get much worse in a short time. It's an insidious> thing, but you realize how much you've had to give up> in the last year or even the last few months. For me, it's> the sob and drop in sats at the least little thing. It's> the fact that my 2 liquid reservoirs that total 12L are> not doing the trick with exertion. I need my 15L portables,> and they're getting less effective too. It's the coughing> that accompanies any drop in sats, the chest burning,> and the overall feeling of being a sick woman, even when> I'm out doing something I love to do and planned for.> Before, I felt healthy except for sob. I don't feel healthy> any more. I still clean up pretty well, but the unfancified> me can scare me when I look into my own eyes in a> mirror. Sometimes I worry about fainting, about dying> in my sleep, about choking when no one's here, about> my children, etc.> I don't feel like I'm dying today, which is a gift, but I> have no illusions about my health status. My chief> goal and prayer in life is to make it to transplant. And> yet I don't jump every time the phone rings - at all.> Hopefully we don't live any differently in terms of> attitude no matter what our stage of disease. Hopefully,> we try to get the most joy we can out of life, taking> care of ourselves in whatever ways we can. We> appreciate the good days. If we're lucky we feel the> peace of a loving God who comforts us. We can rest> knowing that, whatever the outcome, we'll be okay.> We're all dying, even those who don't have a disease.> We just happen to have a kick-in-the-butt daily> reminder to treasure the gift and to walk with God,> which is actually a blessing.>> Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3/07 and> 2/08 (2 centers) Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Sher,There was a lady on the board a few years ago that has passed but her daughter-in law answered the questions no one wanted to ask. She and her husband were with Doris while she passed and said it was very peaceful. I know when these conversation come up some are worried if they'll suffer. It sometimes is so scary when we loose our breath and then to think of how it will be really does a number on our minds. I am going to see if I can find it. It gave me peace and I think it will help others to know... Love and Prayers, PeggyHave a God Blessed Day Bruce... well written and I certainly agree with much of what you say.I'm not focusing on the dying part at all and I'm not attempting to 'label stages'. I am only curious as to how one feels differently, at the so called 'end stage' as various ones refer to themselves. I think when we are in the process of dying we know it. And a Dx. cannot "tell us we are in end stage". I think that comes from within, as does what one does with that knowledge. Candidly talking about death and dying takes courage and bravery that a great many here have. Those who have that courage can share with those of us who want to know what's really ahead.... (even tho' it's different for all)... or what is end stage beyond the Dx??When I realized I have recently progressed in this disease, it took me a little while to make another adjustment. Now, I say the way it is is the way it is, and go on.I feel strongly that when we who are behind those who are farther ahead, when we arrive at their same place we too will then become the example of strength and courage for those coming from farther behind us. I have no doubt you will Bruce and I hope I will.For some reason I am reminded of "Onward Christian Soldiers"........Wanting information from those who are in the experience helps me and helps me help others. That is my primary motivation, not morbid concentration.I hope you feel stronger every day! Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: 02 saga; to Sher re. end stageGwynne and SherGwynneI haven't seen the same problems with Lincare I have with Apria. Infact, with all my traveling coming up and with the advantages of Cairein some areas, I had considered just calling to talk to them for futurereference. But, from what I've read generally and from the BBB, theycertainly appear above Apria in most areas.As to cleaning up well, oh my you really do, Gwynne. I'm sure no one whosees you knows how much effort it is to get ready. But, the very factthat you go to that trouble says so much and says how much alive youstill are. I can't imagine yet how the fears of things happening when noone is there or noticing are. I know that living alone they hit mesometimes and I'm sure its only a small percentage of how hard they hitwhen they come to you. I read several times your statements regardingnow feeling sick as opposed to healthy. Again, I know thats got to be sodifficult as I'm determined to feel healthy as long as possible and Iknow you did. If one says you were in denial or I am, then sowhat....denial, while knowing the reality but shutting it out a bit, isa wonderful state. I dread the day that denial is no longer possible andfeel for you losing it.Sher, as to end stageThe way I think of it is upon death and entering afterlife then I'llknow that I was just in end-stage. Until that time, I'm alive. I don'tcare to try to define it. I'm living, each day I'm one day closer todeath, and at some point I will die. But if I start labelling stagesthen I might start surrending to them. Then I'm dead even thoughtechnically alive. If I thought about my stage or how much time or whatlevel 3 months or 6 months from now too much, I'd destroy myselfemotionally and be unable to enjoy any part of life. Intellectually, Iknow the realities and planned for them, but emotionally I have to justlive today and make the most of it. Gwynne still finds a way to squeezequality from life. I see Joyce who so easily could have placed a labelon where she was before the Flolan treatment but who instead say, "no,I'm not there yet and I'm going to try this" and look at what she's donerecently and the improvement. She's the first person I've known to useFlolan and, honestly, I didn't know at the time if I would have triedit. But, I see what refusing to give up and her choice to do try it hasgiven her.There isn't a group of people anywhere in the world that does better atgrabbing every ounce of beauty life has to offer than this group.>> Hi All,> The rep for Caire products (Liberator, Stroller portables,> etc.) talked with the branch mgr. and CEO of the local> 02 supplier who hasn't called me back (which was just> bought out by another company called Rotech). They told> him they don't think they have the "manpower" to handle> me as a client. The rep is going to continue to help me -> he's a really nice guy - but he thinks I may end up having> to go with Lincare or Apria. After everything you all have> written about them, that horrifies me. But I'll do what I> have to do to get my oxygen needs met. It's just distressing,> because I need the equipment yesterday.>> Kathie,> Phooey on the coughing. I'm doing quite a bit of it> myself, and it hurts and is so exhausting. I hope you> get relief soon!>> Kerry,> I LOVE Super O! She's awesome, just like her inspiration> and her creator.>> Beth,> Great news about not having PAH. I'm thrilled that you> don't have that on top of everything else. Give me an "S"> (for stable)! Hopefully the other lurking issue won't cause> many problems, at least not for a very long time.>> Jane,> I hope Emory calls you soon with the go-ahead for the> STEP Trial. Hope you're having a good weekend.>> Bruce,> Rest up, please. You've been quite the busy bee. If we've> waited this long, we can wait a bit longer for your wordy> pearls. :-) I'm sorry you're having increased 02 needs.>> Z,> I hope you're feeling a bit steadier. How fast are these> exercises supposed to offer you potential relief? Wall> hugging is no fun.> I hope 's having better days.>> K,> I have a wonderful local pulmo here in Ft. Worth, in> addition to my transplant pulmo at UTSW in Dallas.> The local doc suggested to me once to view life in> terms of seasons rather than years. For me, living> through another season (any season) is a real gift.> Currently, I have definite plans to make through the> spring and its beauty.>> Mama-Sher,> There is a specific type of PF that is contracted by> people who raise and handle birds. yuk.> Sher, as a sort of answer to your "end stage"> questions, my best answer is not to trouble yourself> with such things. P (I think) posted the medical> definition of end stage IPF. It's a list, but that's all it> is. My docs want desperately to get a lung for me,> but when I asked them if I were in end stage they> said you've been there for a year and a half, but> you're pretty stable. At ANY stage stable is good. At> ANY stage you can plateau out and stay at that stage> for an indefinite time. It's just not good to live in> denial, especially to the point that you can't prepare> for the next steps, which has served me well... I'm> talking about things like higher flow portables, power> chairs, stair chairs, etc. I got them all just a little bit> before I was convinced I needed them, and then realized> I SO needed them.> As far as how you feel in end stage, you can definitely> just tell that you're worse, and you realize that you> could get much worse in a short time. It's an insidious> thing, but you realize how much you've had to give up> in the last year or even the last few months. For me, it's> the sob and drop in sats at the least little thing. It's> the fact that my 2 liquid reservoirs that total 12L are> not doing the trick with exertion. I need my 15L portables,> and they're getting less effective too. It's the coughing> that accompanies any drop in sats, the chest burning,> and the overall feeling of being a sick woman, even when> I'm out doing something I love to do and planned for.> Before, I felt healthy except for sob. I don't feel healthy> any more. I still clean up pretty well, but the unfancified> me can scare me when I look into my own eyes in a> mirror. Sometimes I worry about fainting, about dying> in my sleep, about choking when no one's here, about> my children, etc.> I don't feel like I'm dying today, which is a gift, but I> have no illusions about my health status. My chief> goal and prayer in life is to make it to transplant. And> yet I don't jump every time the phone rings - at all.> Hopefully we don't live any differently in terms of> attitude no matter what our stage of disease. Hopefully,> we try to get the most joy we can out of life, taking> care of ourselves in whatever ways we can. We> appreciate the good days. If we're lucky we feel the> peace of a loving God who comforts us. We can rest> knowing that, whatever the outcome, we'll be okay.> We're all dying, even those who don't have a disease.> We just happen to have a kick-in-the-butt daily> reminder to treasure the gift and to walk with God,> which is actually a blessing.>> Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3/07 and> 2/08 (2 centers) Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Mornin' Peggy.... I'm beginning to work my way through yesterday's posts.... Although Doris was before my time, this subject of death and dying comes up occasionally. When I asked the question I really wasn't intending to go "there" but here we are. How can we avoid this subject? Every one of us on this board....how many now?....600? know we (or someone else) have a fatal illness. I think God blesses us with no one having a 'date-stamp". Each year brings someone into the end stage (by their own words) and the subject surfaces again. I do remember our Ginger and the talk came up. Perhaps I'm too outspoken. My way of tending to face things straight on is not comfortable for many others. I know that. I do want to know what I might expect....I want to talk to my family. They know me no other way then outspoken, direct and honest. This disease doesn't change who I am. My personal belief is that I can't help someone down a road I have not traveled myself... and I have a sincere desire to be helpful if I can. No matter what the subject. If what was said about Doris gave you peace Peggy then I know it will all of us who want to know more. BTW....would you make me a cover and I will happily pay you for it? I can't do handiwork anymore. Thanks for your reply here. Love ya Ladybug Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: 02 saga; to Sher re. end stage Gwynne and SherGwynneI haven't seen the same problems with Lincare I have with Apria. Infact, with all my traveling coming up and with the advantages of Cairein some areas, I had considered just calling to talk to them for futurereference. But, from what I've read generally and from the BBB, theycertainly appear above Apria in most areas.As to cleaning up well, oh my you really do, Gwynne. I'm sure no one whosees you knows how much effort it is to get ready. But, the very factthat you go to that trouble says so much and says how much alive youstill are. I can't imagine yet how the fears of things happening when noone is there or noticing are. I know that living alone they hit mesometimes and I'm sure its only a small percentage of how hard they hitwhen they come to you. I read several times your statements regardingnow feeling sick as opposed to healthy. Again, I know thats got to be sodifficult as I'm determined to feel healthy as long as possible and Iknow you did. If one says you were in denial or I am, then sowhat....denial, while knowing the reality but shutting it out a bit, isa wonderful state. I dread the day that denial is no longer possible andfeel for you losing it.Sher, as to end stageThe way I think of it is upon death and entering afterlife then I'llknow that I was just in end-stage. Until that time, I'm alive. I don'tcare to try to define it. I'm living, each day I'm one day closer todeath, and at some point I will die. But if I start labelling stagesthen I might start surrending to them. Then I'm dead even thoughtechnically alive. If I thought about my stage or how much time or whatlevel 3 months or 6 months from now too much, I'd destroy myselfemotionally and be unable to enjoy any part of life. Intellectually, Iknow the realities and planned for them, but emotionally I have to justlive today and make the most of it. Gwynne still finds a way to squeezequality from life. I see Joyce who so easily could have placed a labelon where she was before the Flolan treatment but who instead say, "no,I'm not there yet and I'm going to try this" and look at what she's donerecently and the improvement. She's the first person I've known to useFlolan and, honestly, I didn't know at the time if I would have triedit. But, I see what refusing to give up and her choice to do try it hasgiven her.There isn't a group of people anywhere in the world that does better atgrabbing every ounce of beauty life has to offer than this group.>> Hi All,> The rep for Caire products (Liberator, Stroller portables,> etc.) talked with the branch mgr. and CEO of the local> 02 supplier who hasn't called me back (which was just> bought out by another company called Rotech). They told> him they don't think they have the "manpower" to handle> me as a client. The rep is going to continue to help me -> he's a really nice guy - but he thinks I may end up having> to go with Lincare or Apria. After everything you all have> written about them, that horrifies me. But I'll do what I> have to do to get my oxygen needs met. It's just distressing,> because I need the equipment yesterday.>> Kathie,> Phooey on the coughing. I'm doing quite a bit of it> myself, and it hurts and is so exhausting. I hope you> get relief soon!>> Kerry,> I LOVE Super O! She's awesome, just like her inspiration> and her creator.>> Beth,> Great news about not having PAH. I'm thrilled that you> don't have that on top of everything else. Give me an "S"> (for stable)! Hopefully the other lurking issue won't cause> many problems, at least not for a very long time.>> Jane,> I hope Emory calls you soon with the go-ahead for the> STEP Trial. Hope you're having a good weekend.>> Bruce,> Rest up, please. You've been quite the busy bee. If we've> waited this long, we can wait a bit longer for your wordy> pearls. :-) I'm sorry you're having increased 02 needs.>> Z,> I hope you're feeling a bit steadier. How fast are these> exercises supposed to offer you potential relief? Wall> hugging is no fun.> I hope 's having better days.>> K,> I have a wonderful local pulmo here in Ft. Worth, in> addition to my transplant pulmo at UTSW in Dallas.> The local doc suggested to me once to view life in> terms of seasons rather than years. For me, living> through another season (any season) is a real gift.> Currently, I have definite plans to make through the> spring and its beauty.>> Mama-Sher,> There is a specific type of PF that is contracted by> people who raise and handle birds. yuk.> Sher, as a sort of answer to your "end stage"> questions, my best answer is not to trouble yourself> with such things. P (I think) posted the medical> definition of end stage IPF. It's a list, but that's all it> is. My docs want desperately to get a lung for me,> but when I asked them if I were in end stage they> said you've been there for a year and a half, but> you're pretty stable. At ANY stage stable is good. At> ANY stage you can plateau out and stay at that stage> for an indefinite time. It's just not good to live in> denial, especially to the point that you can't prepare> for the next steps, which has served me well... I'm> talking about things like higher flow portables, power> chairs, stair chairs, etc. I got them all just a little bit> before I was convinced I needed them, and then realized> I SO needed them.> As far as how you feel in end stage, you can definitely> just tell that you're worse, and you realize that you> could get much worse in a short time. It's an insidious> thing, but you realize how much you've had to give up> in the last year or even the last few months. For me, it's> the sob and drop in sats at the least little thing. It's> the fact that my 2 liquid reservoirs that total 12L are> not doing the trick with exertion. I need my 15L portables,> and they're getting less effective too. It's the coughing> that accompanies any drop in sats, the chest burning,> and the overall feeling of being a sick woman, even when> I'm out doing something I love to do and planned for.> Before, I felt healthy except for sob. I don't feel healthy> any more. I still clean up pretty well, but the unfancified> me can scare me when I look into my own eyes in a> mirror. Sometimes I worry about fainting, about dying> in my sleep, about choking when no one's here, about> my children, etc.> I don't feel like I'm dying today, which is a gift, but I> have no illusions about my health status. My chief> goal and prayer in life is to make it to transplant. And> yet I don't jump every time the phone rings - at all.> Hopefully we don't live any differently in terms of> attitude no matter what our stage of disease. Hopefully,> we try to get the most joy we can out of life, taking> care of ourselves in whatever ways we can. We> appreciate the good days. If we're lucky we feel the> peace of a loving God who comforts us. We can rest> knowing that, whatever the outcome, we'll be okay.> We're all dying, even those who don't have a disease.> We just happen to have a kick-in-the-butt daily> reminder to treasure the gift and to walk with God,> which is actually a blessing.>> Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3/07 and> 2/08 (2 centers) Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 OK This is one Bible divided to make smaller thiner books. I make a cover for each one. =4.. They are Giant print in todays language, easy to understand. Peggy...I'm so sorry to hear you are having problems w/ SOB. I understand...my SATS seem to be ok but I'm SOB too. AND...I have that pain around my (left) shoulder too. How strange. It's usually when I'm lying down, propped up w/pillow.I will be disappointed for you if you can't make it to AZ. I know, I know, expenses are sky-high. Especially gas! Motels are no small deal either. We are still debating about CA. for the same reasons.Peggy, I'm sorry there are some changes right now. I'm ticked off with you...."DAMNIT!"BTW...about the covers...Peggy, I just need one... you don't need to send 3...4, or whatever number there is in a set.I feel silly now. The picture you sent I thought was the material you used for different ones. lol Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: My visit with the doctor today....Joyce D.Joyce, I am praying by the time of your surgeries that they will not want to put the pic line in at all. I know you do realize how much you have improved since this all began with this Flolan. It is always so up liftingto read what you have been able to do each trip out. God is so GOOD. I hope Lucian get rested. I always feel bad for when he has to push me because ha is so tall. I know if hurts his back. But whatch gonna do. I have had some strange things happening. My sat. is staying up pretty well. Always above 92. BUT I am so short of breath I am just amazed. I am not really sure what is happening but I know I don't like it. I am getting little sharp pains I think in the mustle right over from my shoulder blade. I know it can not be my lung since they don't have nerves but it freaks me out. I keep pushing so we'll see if it gets better soon. I have increased my 02 to 7 & 8 while on my feet.. Oh how I HATE THIS DISEASE.. I am not ready for this. I am however ticked offabout this.. lolAnyway have a good night. God Bless and Keep You..Love and Prayers, PeggyHave a God Blessed DayI saw my pulmonologist today. All the usual blood work. Made tentative plans for the middle of April for my surgeries. It will be one hospital stay for both. Maybe I will get packed and ready by then.....and forget the smell of that gross food! They will test my pulmonary pressures to see how the Flolan is doing. I feel better...not great, but better. I had to go all over three buildings to get everything done. My poor husband went to work at 4:30 so he could get off early to go with me. I rode in my handy dandy wheelchair, but he had to walk 80 miles pushing me and all my baggage. Poor guy! They had me do the 6 minute walk. This new way I call "Walk till you drop" test. I lasted 1:54 minutes before all this hoopla. Today I lasted 1:57. Well, it is better! You really can't get far in 1:57 minutes! Thank God for the person who invented wheels....had to be a woman! Keep praying good people. God is listening. I'm still ticking.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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 OK This is one Bible divided to make smaller thiner books. I make a cover for each one. =4.. They are Giant print in todays language, easy to understand. Peggy...I'm so sorry to hear you are having problems w/ SOB. I understand...my SATS seem to be ok but I'm SOB too. AND...I have that pain around my (left) shoulder too. How strange. It's usually when I'm lying down, propped up w/pillow.I will be disappointed for you if you can't make it to AZ. I know, I know, expenses are sky-high. Especially gas! Motels are no small deal either. We are still debating about CA. for the same reasons.Peggy, I'm sorry there are some changes right now. I'm ticked off with you...."DAMNIT!"BTW...about the covers...Peggy, I just need one... you don't need to send 3...4, or whatever number there is in a set.I feel silly now. The picture you sent I thought was the material you used for different ones. lol Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: My visit with the doctor today....Joyce D.Joyce, I am praying by the time of your surgeries that they will not want to put the pic line in at all. I know you do realize how much you have improved since this all began with this Flolan. It is always so up liftingto read what you have been able to do each trip out. God is so GOOD. I hope Lucian get rested. I always feel bad for when he has to push me because ha is so tall. I know if hurts his back. But whatch gonna do. I have had some strange things happening. My sat. is staying up pretty well. Always above 92. BUT I am so short of breath I am just amazed. I am not really sure what is happening but I know I don't like it. I am getting little sharp pains I think in the mustle right over from my shoulder blade. I know it can not be my lung since they don't have nerves but it freaks me out. I keep pushing so we'll see if it gets better soon. I have increased my 02 to 7 & 8 while on my feet.. Oh how I HATE THIS DISEASE.. I am not ready for this. I am however ticked offabout this.. lolAnyway have a good night. God Bless and Keep You..Love and Prayers, PeggyHave a God Blessed DayI saw my pulmonologist today. All the usual blood work. Made tentative plans for the middle of April for my surgeries. It will be one hospital stay for both. Maybe I will get packed and ready by then.....and forget the smell of that gross food! They will test my pulmonary pressures to see how the Flolan is doing. I feel better...not great, but better. I had to go all over three buildings to get everything done. My poor husband went to work at 4:30 so he could get off early to go with me. I rode in my handy dandy wheelchair, but he had to walk 80 miles pushing me and all my baggage. Poor guy! They had me do the 6 minute walk. This new way I call "Walk till you drop" test. I lasted 1:54 minutes before all this hoopla. Today I lasted 1:57. Well, it is better! You really can't get far in 1:57 minutes! Thank God for the person who invented wheels....had to be a woman! Keep praying good people. God is listening. I'm still ticking.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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Well it wouldn't be easy financially but we have three dogs and yada yada. But the expenses is the biggest problem. We're still working crunching. If I cry and act like a big'ol baby, we'll go. I am real close to showing myself. No we'll just see what happens. I may have to bring Abby with me. will keep Patty and Spike.They do well being alone all day, not so for this little pill. She is easy so to travel with tho. Love and Prayers, PeggyHave a God Blessed Day Peggy...you are concerned about going to San An. Is the finances you mentioned before or is it some other reason that may keep you home?You're now probably afraid to leave with the firebug next door! Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: Re: TinaSTUPID spell check.. lol "anesthetic.." now. There.Love and Prayers, PeggyHave a God Blessed DayTina, Love the new pictures. Ya know Leanne has been walking and can now RALLLY go a long time. I think an hour a day. She lost a lot of weight too. What I meant about the surgery for my sister was the recuperating part. She could only swallow enough liquid to swallow a vitamin. that was a sip. She ate one tablespoon at a meal. It was just very painful for her. The main thing that would concern me would be the anise-tic.... not good with lungs that are compromised. Just my opinion. You know I had to put it in.. lol Oh I am going to just be sick if I don't get to come to San ,, WAHHH WAWAWAAAA. ;(Take care of you and that sweet fisherman.Love and Prayers, PeggyHave a God Blessed DayOh, beautiful baby photos! I just remember that smell of babies everytime I see a picture. I can't help but "ooo and awww" over babies. God Bless,TinaIPF PH Ohio>> > ,> > First of all, Darrah could not be more beautiful. She is a doll! She> must look a lot like at that age.> > Sara, is for one....big! What a strong baby, just holding that head up.> She is a curious little thing, I can tell. The pictures with her great> grandmother were precious. She is wonderful and I envy you.> > I like your house. I always wonder when people have a rack to hang> thier pots and pans up high.....do they use them at all? I can tell you> that mine would not add to the decor! They all look like they need to> be hidden and are. They serve me very well, however.> > Nice visit, I enjoyed it.> > 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> Quote Link to comment Share on other sites More sharing options...
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