Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Peggy, Oh my dear friend...I know what a difficult decision it must be to call Hospice but I do think that just to have them come out and talk about what options there are and what services they provide is a good idea. Some kind of electric chair or something to move around the house a bit is a good idea too....anything to keep your sats from dropping to that extent. I know you don't understand the morphine thing....it just eases the breathing. It really is that simple. It's not a muscle relaxant. (there are other drugs for that) It makes the patient more relaxed, less anxious, slows the breathing down some. In this type of situation it's given in very tiny doses, just enough to take the edge off that breathless feeling. Whether or not you choose to use it now or in the future or never, just know that it's there in the event you need it. There is absolutely NO point in being miserable when there is something that can make you feel better. Lou was with hospice for a long time and she was on morphine for a long time too. She wasn't groggy all the time. She was able to enjoy herself without feeling sob and awful all the time. In the meantime just rest this week, rest and rest and rest so that you'll be able to make the trip. I can't wait to see you and too! Love, Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wed, October 21, 2009 3:19:34 PMSubject: Chatt and other stuffSo group here is the thing.. my saturation is dropping with every movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it goes to around 85 -86.. How crazy is that.. has called to get me a jazzy or some other chair thing.. (he just trusts me WAYYYY to much) I will be glad to be able to move without needing to sit every ten feet.. this is just such so humbling to be dependent to this degree. I do thank God I have my wonderful husband. ( who is fixing me sharp cheese, crackers and an apple right now) After our trip we are going to have the hospice people come talk to us so we will better understand their process. For the life of me I don't know why some need morphine. I guess it helps relax your chest mussels to make breathing easier. Odd I have not ask my Dr. about that.... I will. I think I am just going to keep myself in the electric lounger as much as I can. should get me ready to go.. I would leave now but we would be all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. Please keep us in your prayers. is struggling almost as I am. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Peggy, you will always be in mny prayers........sending you gentle hugs. Kathy....fl PF.......4/07 Wtg for TX call > > So group here is the thing.. my saturation is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that.. > has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without > needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now) > > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will. > > I think I am just going to keep myself in the electric lounger as > much as I can. should get me ready to go.. I would leave now but we > would be > all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. > > Please keep us in your prayers. is struggling almost as I am. > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > > >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009  Peggy... I'm glad hospice is your consideration now. The entire focus is to keep you comfortable day to day and nights too. Remember to accept the things you cannot change. Accepting hospice is a choice for comfort ladybug... I know how difficult giving up our independence is. I'm struggling with the same thing. We'll try to connect again maybe around 6:30 or so. Or some other time. It's a sure fact we'll be won't we? I love ya Peggy. SherDon't fret about tomorrow, God is already there! Chatt and other stuff So group here is the thing.. my saturation is dropping with every movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it goes to around 85 -86.. How crazy is that.. has called to get me a jazzy or some other chair thing.. (he just trusts me WAYYYY to much) I will be glad to be able to move without needing to sit every ten feet.. this is just such so humbling to be dependent to this degree. I do thank God I have my wonderful husband. ( who is fixing me sharp cheese, crackers and an apple right now) After our trip we are going to have the hospice people come talk to us so we will better understand their process. For the life of me I don't know why some need morphine. I guess it helps relax your chest mussels to make breathing easier. Odd I have not ask my Dr. about that.... I will. I think I am just going to keep myself in the electric lounger as much as I can. should get me ready to go.. I would leave now but we would be all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. Please keep us in your prayers. is struggling almost as I am. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 don't know what to say -- just had to respond Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Chatt and other stuffTo: Breathe-Support Date: Wednesday, October 21, 2009, 3:19 PM So group here is the thing.. my saturation is dropping with every movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it goes to around 85 -86.. How crazy is that.. has called to get me a jazzy or some other chair thing.. (he just trusts me WAYYYY to much) I will be glad to be able to move without needing to sit every ten feet.. this is just such so humbling to be dependent to this degree. I do thank God I have my wonderful husband. ( who is fixing me sharp cheese, crackers and an apple right now) After our trip we are going to have the hospice people come talk to us so we will better understand their process. For the life of me I don't know why some need morphine. I guess it helps relax your chest mussels to make breathing easier. Odd I have not ask my Dr. about that.... I will. I think I am just going to keep myself in the electric lounger as much as I can. should get me ready to go.. I would leave now but we would be all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. Please keep us in your prayers. is struggling almost as I am. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Thanks Pink, This is just the way things go. The strange thing about it is if I sit still I feel fine--good in-fact. Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." don't know what to say -- just had to respond Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Chatt and other stuffTo: Breathe-Support Date: Wednesday, October 21, 2009, 3:19 PM So group here is the thing.. my saturation is dropping with every movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it goes to around 85 -86.. How crazy is that.. has called to get me a jazzy or some other chair thing.. (he just trusts me WAYYYY to much) I will be glad to be able to move without needing to sit every ten feet.. this is just such so humbling to be dependent to this degree. I do thank God I have my wonderful husband. ( who is fixing me sharp cheese, crackers and an apple right now) After our trip we are going to have the hospice people come talk to us so we will better understand their process. For the life of me I don't know why some need morphine. I guess it helps relax your chest mussels to make breathing easier. Odd I have not ask my Dr. about that.... I will. I think I am just going to keep myself in the electric lounger as much as I can. should get me ready to go.. I would leave now but we would be all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. Please keep us in your prayers. is struggling almost as I am. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." <pastedGraphic.tiff> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Dearest Princess Peggy..I think it's time to call up the right royal electric chariot..you'll wonder why your Court wasn't graced with it earlier. Why walk & have your Sats drop like that when you could be regally gliding about the Palace? Hospice assistance & expertise will also will greatly relieve your everyday experience of life right now. Crikey if they're there & available...bring them to the Royal Court....MB has given some good info on how Morphine is used for folks in our situation..I'll be putting that in my memory bank for my future thinking. Hospice isn't the end of the Road m'dear ..think of them as Travelling Guides for the Long Journey. I think perchance I missed you birthday....I've been running arounf like a blue-arsed fly.......But here goes... LOTS of love n' hugs... Your loyal Subject of Oz... >> So group here is the thing.. my saturation is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that..> has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without> needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now)> > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will.> > I think I am just going to keep myself in the electric lounger as > much as I can. should get me ready to go.. I would leave now but we > would be> all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh.> > Please keep us in your prayers. is struggling almost as I am.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Peggy - You are often in my prayers, and I will add your sweet to the list. Looking forward to seeing you soon! B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. To: Breathe-Support Sent: Wed, October 21, 2009 3:19:34 PMSubject: Chatt and other stuffSo group here is the thing.. my saturation is dropping with every movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it goes to around 85 -86.. How crazy is that.. has called to get me a jazzy or some other chair thing.. (he just trusts me WAYYYY to much) I will be glad to be able to move without needing to sit every ten feet.. this is just such so humbling to be dependent to this degree. I do thank God I have my wonderful husband. ( who is fixing me sharp cheese, crackers and an apple right now) After our trip we are going to have the hospice people come talk to us so we will better understand their process. For the life of me I don't know why some need morphine. I guess it helps relax your chest mussels to make breathing easier. Odd I have not ask my Dr. about that.... I will. I think I am just going to keep myself in the electric lounger as much as I can. should get me ready to go.. I would leave now but we would be all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. Please keep us in your prayers. is struggling almost as I am. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Oh Peggy, bless you, bless you, bless you and your . Rest friend. S, Lubbock, TX NSIP w/PF 12/2006 > > Peggy, > Oh my dear friend...I know what a difficult decision it must be to call Hospice but I do think that just to have them come out and talk about what options there are and what services they provide is a good idea. Some kind of electric chair or something to move around the house a bit is a good idea too....anything to keep your sats from dropping to that extent. > > I know you don't understand the morphine thing....it just eases the breathing. It really is that simple. It's not a muscle relaxant. (there are other drugs for that) It makes the patient more relaxed, less anxious, slows the breathing down some. In this type of situation it's given in very tiny doses, just enough to take the edge off that breathless feeling. Whether or not you choose to use it now or in the future or never, just know that it's there in the event you need it. There is absolutely NO point in being miserable when there is something that can make you feel better. > Lou was with hospice for a long time and she was on morphine for a long time too. She wasn't groggy all the time. She was able to enjoy herself without feeling sob and awful all the time. > > In the meantime just rest this week, rest and rest and rest so that you'll be able to make the trip. I can't wait to see you and too! > Love, > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > ________________________________ > > To: Breathe-Support > Sent: Wed, October 21, 2009 3:19:34 PM > Subject: Chatt and other stuff > > So group here is the thing.. my saturation is dropping with every movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it goes to around 85 -86.. How crazy is that.. > has called to get me a jazzy or some other chair thing.. (he just trusts me WAYYYY to much) I will be glad to be able to move without > needing to sit every ten feet.. this is just such so humbling to be dependent to this degree. I do thank God I have my wonderful husband. ( who is fixing me sharp cheese, crackers and an apple right now) > > After our trip we are going to have the hospice people come talk to us so we will better understand their process. For the life of me I don't know why some need morphine. I guess it helps relax your chest mussels to make breathing easier. Odd I have not ask my Dr. about that.... I will. > > > I think I am just going to keep myself in the electric lounger as much as I can. should get me ready to go.. I would leave now but we would be > all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. > > Please keep us in your prayers. is struggling almost as I am. > > > > Love & Prayers, Peggy Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Peggy, I'm so sorry that you are having so much trouble!!! I'm sending hugs your way. (((HUG))) (((HUG))) (((HUG))) (((HUG))) Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Peggy wrote: So group here is the thing.. my saturation is dropping with every movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it goes to around 85 -86.. How crazy is that.. has called to get me a jazzy or some other chair thing.. (he just trusts me WAYYYY to much) I will be glad to be able to move without needing to sit every ten feet.. this is just such so humbling to be dependent to this degree. I do thank God I have my wonderful husband. ( who is fixing me sharp cheese, crackers and an apple right now) After our trip we are going to have the hospice people come talk to us so we will better understand their process. For the life of me I don't know why some need morphine. I guess it helps relax your chest mussels to make breathing easier. Odd I have not ask my Dr. about that.... I will. I think I am just going to keep myself in the electric lounger as much as I can. should get me ready to go.. I would leave now but we would be all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. Please keep us in your prayers. is struggling almost as I am. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 Peggy,Know that the jazzy will help, when I am moving around and walking I too am on 8 liters and I still drop, but If I can use my chair I can turn the o2 to 3 liters and stay above 90 and feel better. Know that we all love you and are sending waves of love and comfort to you. I hope You make the trip, I would love to have you all skype me too so I can see all your wonderful faces. God bless you.Dyane phoenix ipf 02>> So group here is the thing.. my saturation is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that..> has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without> needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now)> > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will.> > I think I am just going to keep myself in the electric lounger as > much as I can. should get me ready to go.. I would leave now but we > would be> all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh.> > Please keep us in your prayers. is struggling almost as I am.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 Peggy- so sorry to hear of falling sats, I know what you mean about feeling good when you are perfectly still. I try that now and then but I can't seem to do it for very long. My prayers and thoughts are with you- nne, ILD 6/09 > > > Subject: Chatt and other stuff > To: Breathe-Support > Date: Wednesday, October 21, 2009, 3:19 PM > > So group here is the thing.. my saturation is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that.. > has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without > needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now) > > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will. > > I think I am just going to keep myself in the electric lounger as > much as I can. should get me ready to go.. I would leave now but we > would be > all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. > > Please keep us in your prayers. is struggling almost as I am. > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > > > <pastedGraphic.tiff> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Mama Sher,Before I went on the prednisone I was taking Percoset for pain and yes when you first start if you take too much you will itch, but after a few days that will go away. Have patience and benadryl! Dyane phoenix ipf 02> >> > So group here is the thing.. my saturation is dropping with every > > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > > goes to around 85 -86.. How crazy is that..> > has called to get me a jazzy or some other chair thing.. (he > > just trusts me WAYYYY to much) I will be glad to be able to move without> > needing to sit every ten feet.. this is just such so humbling to be > > dependent to this degree. I do thank God I have my wonderful > > husband. ( who is fixing me sharp cheese, crackers and an apple > > right now)> > > > After our trip we are going to have the hospice people come talk to > > us so we will better understand their process. For the life of me I > > don't know why some need morphine. I guess it helps relax your chest > > mussels to make breathing easier. Odd I have not ask my Dr. about > > that.... I will.> > > > I think I am just going to keep myself in the electric lounger as > > much as I can. should get me ready to go.. I would leave now but we > > would be> > all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh.> > > > Please keep us in your prayers. is struggling almost as I am.> > > > > > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> > > > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Thank you MamaSher, When I first wrote the group concerning my condition I said I didn't want anyone to feel sorry for me and blah, blah, blah. I was raised not to cry, and that there is always someone worse off than me. That is true, but your words of concern warms my heart, I found out I need sympathy? understanding? something more than what I initially thought I wanted. Thank you ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Peggy, I will keep fighting as you will too. Like you, when I am not moving I feel almost normal and almost forget, nice. I am still having a hard time dealing that I was working one day and the next, literally, using oxygen 24/7. You are lucky you have a loving husband to help you. My hsb does the best he can but has a hard time dealing with me not getting better. I thank the good lord I have my middle son who is so very spirituall and so very helpful and supportive. Enjoy your trips. e-mail hug and prayers ellen > > > > So group here is the thing.. my saturation is dropping with every > > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > > goes to around 85 -86.. How crazy is that.. > > has called to get me a jazzy or some other chair thing.. (he > > just trusts me WAYYYY to much) I will be glad to be able to move > without > > needing to sit every ten feet.. this is just such so humbling to be > > dependent to this degree. I do thank God I have my wonderful > > husband. ( who is fixing me sharp cheese, crackers and an apple > > right now) > > > > After our trip we are going to have the hospice people come talk to > > us so we will better understand their process. For the life of me I > > don't know why some need morphine. I guess it helps relax your chest > > mussels to make breathing easier. Odd I have not ask my Dr. about > > that.... I will. > > > > I think I am just going to keep myself in the electric lounger as > > much as I can. should get me ready to go.. I would leave now but we > > would be > > all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. > > > > Please keep us in your prayers. is struggling almost as I am. > > > > > > Love & Prayers, Peggy > > Florida, IPF/UIP 2004 > > > > " I believe that friends are quiet angels who lift us to our feet, > > when our wings have trouble remembering how to fly. " > > > > > >  > > > Quote Link to comment Share on other sites More sharing options...
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