Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 rudy joyce you are not making anything up the nature of this disease is that when we are resting, sitting, etc, we feel fine, as soon as we exert ourselves, the O2 level goes down and we get SOB or tired or whatever, we need to stop and rest.--at least that is true for me and many others on this site COPD is a different disease -- it is obstructive, ours is restrictive while at pulmonary rehab, when they explained how COPD works, i sort of ignored it, i was more interested in learning about pulmonary fibrosis i think they can use the same liters per minute for longer periods of time, and i think their O2 SAT, doesn't change with exertion I could be wrong, but someone else on the board with give you more accurate info or you could look it up on line if you are really curious Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: breathing and weaknessTo: "Breathe-Support" <Breathe-Support >Date: Saturday, January 24, 2009, 12:58 PM Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Pink Actually you're quite right in your statements on COPD. They may have some difference at exertion but typically nothing like we have. Now, these are just generalizations about both diseases. But, the COPD patient normally stays on low flows for a long period of time. They have to be careful not to use too much oxygen as well. I had an uncle was on 2 lpm for most of his 30 years of COPD, 24/7 exertion or not. The differences are always something to be aware of and for any of those here who have COPD in addition to PF they need to be very careful not to listen to some of the things we say. Many times too you'll encounter respiratory rehab people or oxygen suppliers or even nurses in doctors office who are so use to COPD they will give a PF patient wrong information. There are many misdiagnoses made on COPD vs. PF although with a proper high resolution CT the diagnosis is typically fairly straighforward not as to the specific fibrosis but as to whether there is fibrosis. > > From: JOYCE RUDY greycharlie@... > Subject: breathing and weakness > To: " Breathe-Support " Breathe-Support > Date: Saturday, January 24, 2009, 12:58 PM > > > > > > > > Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. > > I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? > > Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. > > I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? > > Blue Flyer Joyce 63 AZ IPF 11-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 MB/Joyce Actually, oxygen is quite addicting. We were all addicted to it nine months before we were born and have been ever since....lol Now I wasn't just being funny in saying that because when you think of it like that it makes more sense. You have always needed oxygen just as you do now. The difference is that now you need supplemental oxygen to get the right amount into your system. So, all you are doing is switching the means of supplying it. All just to get your saturation to where it was and should be. There is nothing addicting about supplemental oxygen. If you were on it for a recovery from a surgery or something, you might be on it temporarily. Those of us here who are on it for PF so will always need it and over time need more. I hear people refer to addictions for a lot of medications that we might be on for life. Am I addicted to a thyroid medication because I will always need it to supplement the underproduction by my body? Am I addicted to Nexium because I'll always need it for GERD? Am I addicted to my sleep med because I'll always need it or another for sleep? Am I addicted to Neurontin because I will always need it for restless limbs and peripheral neuropathy? Am I addicted to eyeglasses because I'll always need them to see? Many here fear becoming addicted to an anti-anxiety med or to a pain killer. Addiction is abuse. But if I had a pain that was helped by a pain med and I'd need the rest of my life, I would gladly take the pain med rather than suffer the pain. Oh, by the way, in addition to oxygen, I'm also addicted to food and water..... Oxygen is your friend. Use it as directed and when needed. > > From: JOYCE RUDY > Subject: breathing and weakness > To: " Breathe-Support " > Date: Saturday, January 24, 2009, 12:58 PM > > > Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. > > I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? > > Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. > > I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? > > Blue Flyer Joyce 63 AZ IPF 11-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce sorry i am just responding to you now-- i am very behind in reading the posts sometimes when i check the oximeter, i am surprised by the O2 level sometimes it is lower than i expect and sometimes it is higher than i expect there are times when i cannot tell if it is down -- unless i am short of breath, i feel the same O2 is not addicting, it is something that everyone needs all of the time some of us just need supplemental O2 to keep our SATs up you may have felt fine in the pool, but the walk to the lockers will decrease your SAT Pink Joyce IPF 3/06 Pennsylvania Donate Life From: JOYCE RUDY <greycharlie@ q.com>Subject: breathing and weaknessTo: "Breathe-Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 24, 2009, 12:58 PM Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce sorry i am just responding to you now-- i am very behind in reading the posts sometimes when i check the oximeter, i am surprised by the O2 level sometimes it is lower than i expect and sometimes it is higher than i expect there are times when i cannot tell if it is down -- unless i am short of breath, i feel the same O2 is not addicting, it is something that everyone needs all of the time some of us just need supplemental O2 to keep our SATs up you may have felt fine in the pool, but the walk to the lockers will decrease your SAT Pink Joyce IPF 3/06 Pennsylvania Donate Life From: JOYCE RUDY <greycharlie@ q.com>Subject: breathing and weaknessTo: "Breathe-Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 24, 2009, 12:58 PM Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce 98% at rest is normal for many people the problem is when we exert ourselves, such as mopping the floor, then the SAT drops and we need to increase the lpm the important thing is keep your O2 level at 90% or above, actually i think the amount is 87% or 88 %, but 90% is easy to remember. i keep my lpm level at what is comfortable for me when i go to the docs, they ask me how many liters i am using you get to know your own body and your own needs for a while i tried lowering it when i sleep, but that meant someone had to get out of bed to lower it at night and raise if in the morning so it is just easier to keep it the same all of the time when i exercise, walk the dog, or do any increased activity, i increase the lpm Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: breathing and weaknessTo: Breathe-Support Date: Sunday, January 25, 2009, 1:39 PM I just mopped some of my floor and I wore the oximeter. Is that ok? I was moving. Anyway, I am supposed to be on 2liters when at rest but found out that with 3 liters my O2 is 98 at rest! My thinking is so good! I feel like I am awake and energetic! Is it wrong to have your O2 at 98%? Now when I work with 3 liters and only move my arms but stand stationary my O2 drops down to 94 but if I start walking it drops to 91-92. I know that is ok but obviously any exertion makes a difference but using legs over arms is harder. How odd. But, I would love to stay on 3 liters all the time! When I am at rest I am not drozy and I think so clearly! Do you think I will hurt my lungs? Should I tell my pulmodude or wait for my appointment next week? Blue Flyer Joyce 64 AZ IPF 11-08 breathing and weakness Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce 98% at rest is normal for many people the problem is when we exert ourselves, such as mopping the floor, then the SAT drops and we need to increase the lpm the important thing is keep your O2 level at 90% or above, actually i think the amount is 87% or 88 %, but 90% is easy to remember. i keep my lpm level at what is comfortable for me when i go to the docs, they ask me how many liters i am using you get to know your own body and your own needs for a while i tried lowering it when i sleep, but that meant someone had to get out of bed to lower it at night and raise if in the morning so it is just easier to keep it the same all of the time when i exercise, walk the dog, or do any increased activity, i increase the lpm Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: breathing and weaknessTo: Breathe-Support Date: Sunday, January 25, 2009, 1:39 PM I just mopped some of my floor and I wore the oximeter. Is that ok? I was moving. Anyway, I am supposed to be on 2liters when at rest but found out that with 3 liters my O2 is 98 at rest! My thinking is so good! I feel like I am awake and energetic! Is it wrong to have your O2 at 98%? Now when I work with 3 liters and only move my arms but stand stationary my O2 drops down to 94 but if I start walking it drops to 91-92. I know that is ok but obviously any exertion makes a difference but using legs over arms is harder. How odd. But, I would love to stay on 3 liters all the time! When I am at rest I am not drozy and I think so clearly! Do you think I will hurt my lungs? Should I tell my pulmodude or wait for my appointment next week? Blue Flyer Joyce 64 AZ IPF 11-08 breathing and weakness Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 a lady in my community has IPF also, but a mild case no meds, no O2 last year she had a problem with some type of hernia, had surgery for it and her coughing stopped she did send me the details, but i don't remember them, something that i never heard of Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: breathing and weaknessTo: Breathe-Support Date: Saturday, January 24, 2009, 7:18 PM SharonEven without the hernia, the food fills you and compresses the availablespace and inhibits breathing as deeply. Never take a PFT right aftereating a large meal either.Hiatal Hernias are quite common in our group too. I have mine. lol> > > >> > > > Hi all, I feel so lucky and feel kind of stupid asking these> > things.> > > There are so many here that are so sick and so far I just feel> > better> > > having oxygen.> > > >> > > > I am having such a hard time keeping my nose open to breathe. Iam> > > using an AYR nasel spay and it just doesn't do it. I just finished> > using> > > some Nasonex and that has been helpful but the saline solution> > doesn't> > > help at all. Any other ideas?> > > >> > > > Also, I have noticed something strange. I think I have plenty of> > > oxygen but I seem to be getting weaker. I don't understand itsince> > I> > > exercise vigorously 4 days a week for an hour each day. Myportable> > > seems almost too heavy to hold where last month it didn't and I am> > > having a difficult time doing things. Is this part of IPF? I don't> > know> > > if I should tell my doctor or if it is all in my mind and I wantto> > > shirk doing things. I am completely baffeled. I should be getting> > > stronger but I have been getting weaker. Confused.> > > >> > > > I have been busy and active and my spirits are high and I'mdoing> > > things like baking bread and having fun with my friends and my> > animals.> > > Also do any of you know about COPD? I have a friend who has severe> > COPD> > > but her doctor says oxygen won't help her it may make her more> > > comfortable but it won't help her yet she doesn't lose her breath> > like I> > > do going from the living room to the kitchen and I have a small> > house! I> > > think my IPF is mild at the moment and don't understand why my> > symptoms> > > seem to be worse then hers and she is severe. Am I just makingthis> > up> > > in my mind that I get breathless if I don't have oxygen with such> > > minimal exertion? I feel like I am a fraud and should just throwmy> > > oxygen out and get on with life. Also when doing tasks I seem to> > have to> > > rest in between. I just can't zip thru my kitchen cleaning it. I> > take> > > the dishes out of the dishwasher and then I need to rest. Then I> > rinse> > > some dishes off and need to rest. Am I making this up?> > > >> > > > Blue Flyer Joyce 63 AZ IPF 11-08> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 a lady in my community has IPF also, but a mild case no meds, no O2 last year she had a problem with some type of hernia, had surgery for it and her coughing stopped she did send me the details, but i don't remember them, something that i never heard of Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: breathing and weaknessTo: Breathe-Support Date: Saturday, January 24, 2009, 7:18 PM SharonEven without the hernia, the food fills you and compresses the availablespace and inhibits breathing as deeply. Never take a PFT right aftereating a large meal either.Hiatal Hernias are quite common in our group too. I have mine. lol> > > >> > > > Hi all, I feel so lucky and feel kind of stupid asking these> > things.> > > There are so many here that are so sick and so far I just feel> > better> > > having oxygen.> > > >> > > > I am having such a hard time keeping my nose open to breathe. Iam> > > using an AYR nasel spay and it just doesn't do it. I just finished> > using> > > some Nasonex and that has been helpful but the saline solution> > doesn't> > > help at all. Any other ideas?> > > >> > > > Also, I have noticed something strange. I think I have plenty of> > > oxygen but I seem to be getting weaker. I don't understand itsince> > I> > > exercise vigorously 4 days a week for an hour each day. Myportable> > > seems almost too heavy to hold where last month it didn't and I am> > > having a difficult time doing things. Is this part of IPF? I don't> > know> > > if I should tell my doctor or if it is all in my mind and I wantto> > > shirk doing things. I am completely baffeled. I should be getting> > > stronger but I have been getting weaker. Confused.> > > >> > > > I have been busy and active and my spirits are high and I'mdoing> > > things like baking bread and having fun with my friends and my> > animals.> > > Also do any of you know about COPD? I have a friend who has severe> > COPD> > > but her doctor says oxygen won't help her it may make her more> > > comfortable but it won't help her yet she doesn't lose her breath> > like I> > > do going from the living room to the kitchen and I have a small> > house! I> > > think my IPF is mild at the moment and don't understand why my> > symptoms> > > seem to be worse then hers and she is severe. Am I just makingthis> > up> > > in my mind that I get breathless if I don't have oxygen with such> > > minimal exertion? I feel like I am a fraud and should just throwmy> > > oxygen out and get on with life. Also when doing tasks I seem to> > have to> > > rest in between. I just can't zip thru my kitchen cleaning it. I> > take> > > the dishes out of the dishwasher and then I need to rest. Then I> > rinse> > > some dishes off and need to rest. Am I making this up?> > > >> > > > Blue Flyer Joyce 63 AZ IPF 11-08> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce no answer required-- do you have to bake your own bread? can't you buy ready made bread? it would be a lot easier on you Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Re: breathing and weaknessTo: Breathe-Support Date: Saturday, January 24, 2009, 5:09 PM I will try to be patient but the day is almost gone and I only have 3/4 of my kitchen clean enough so I can cook! It is frustrating me but I guess when there is nothing you can do about it you have to stop being frustrated. Tomorrow I have to make some bread and knead it and I'm going to have to stand and pummel the dough for 15 minutes straight. I sure hope I get some of my frustration out on the dough. Maybe it will be the best bread I have made! It's just that there is so much that has to be done and so much I WANT to do and it is so hard to do it. It's like things never get done! My entire house has floors that need to be washed and I have made arrangements for someone to come in twice a month and wash them for me because I can no longer do it. It's just plain too hard for me to sweep and then mop all over the house. Frustrating ...but at least I will be able to afford someone to do what I should be able to do!But, I still intend to have some beef enchilada's for dinner tonight so I best stop bitching and get to work! LOL Yes indeed, I will be enjoying those enchilada's. .. Blue Flyer, Joyce 64 AZ IPF 8-11 Re: breathing and weakness JoyceFirst, PF and COPD are totally different diseases in so many ways. COPDis obstructive, meaning the airways are blocked or filled. PF isrestrictive, meaning the lung is damaged. Therefore, you will feel muchdifferent than your friend.As to lifting, it is an anaerobic exercise where as treadmill isaerobic. The difference is lifting normally looks to your muscles foroxygen. They don't have it, then there is a weakness and shortness ofbreath. I cannot lift and bend far over at all. Yet, I can get on thetreadmill and walk.Now you should point out all sypmptoms to your doctor and muscleweakness can also come from a connective tissue disease.>> Hi all, I feel so lucky and feel kind of stupid asking these things.There are so many here that are so sick and so far I just feel betterhaving oxygen.>> I am having such a hard time keeping my nose open to breathe. I amusing an AYR nasel spay and it just doesn't do it. I just finished usingsome Nasonex and that has been helpful but the saline solution doesn'thelp at all. Any other ideas?>> Also, I have noticed something strange. I think I have plenty ofoxygen but I seem to be getting weaker. I don't understand it since Iexercise vigorously 4 days a week for an hour each day. My portableseems almost too heavy to hold where last month it didn't and I amhaving a difficult time doing things. Is this part of IPF? I don't knowif I should tell my doctor or if it is all in my mind and I want toshirk doing things. I am completely baffeled. I should be gettingstronger but I have been getting weaker. Confused.>> I have been busy and active and my spirits are high and I'm doingthings like baking bread and having fun with my friends and my animals.Also do any of you know about COPD? I have a friend who has severe COPDbut her doctor says oxygen won't help her it may make her morecomfortable but it won't help her yet she doesn't lose her breath like Ido going from the living room to the kitchen and I have a small house! Ithink my IPF is mild at the moment and don't understand why my symptomsseem to be worse then hers and she is severe. Am I just making this upin my mind that I get breathless if I don't have oxygen with suchminimal exertion? I feel like I am a fraud and should just throw myoxygen out and get on with life. Also when doing tasks I seem to have torest in between. I just can't zip thru my kitchen cleaning it. I takethe dishes out of the dishwasher and then I need to rest. Then I rinsesome dishes off and need to rest. Am I making this up?>> Blue Flyer Joyce 63 AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce no answer required-- do you have to bake your own bread? can't you buy ready made bread? it would be a lot easier on you Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Re: breathing and weaknessTo: Breathe-Support Date: Saturday, January 24, 2009, 5:09 PM I will try to be patient but the day is almost gone and I only have 3/4 of my kitchen clean enough so I can cook! It is frustrating me but I guess when there is nothing you can do about it you have to stop being frustrated. Tomorrow I have to make some bread and knead it and I'm going to have to stand and pummel the dough for 15 minutes straight. I sure hope I get some of my frustration out on the dough. Maybe it will be the best bread I have made! It's just that there is so much that has to be done and so much I WANT to do and it is so hard to do it. It's like things never get done! My entire house has floors that need to be washed and I have made arrangements for someone to come in twice a month and wash them for me because I can no longer do it. It's just plain too hard for me to sweep and then mop all over the house. Frustrating ...but at least I will be able to afford someone to do what I should be able to do!But, I still intend to have some beef enchilada's for dinner tonight so I best stop bitching and get to work! LOL Yes indeed, I will be enjoying those enchilada's. .. Blue Flyer, Joyce 64 AZ IPF 8-11 Re: breathing and weakness JoyceFirst, PF and COPD are totally different diseases in so many ways. COPDis obstructive, meaning the airways are blocked or filled. PF isrestrictive, meaning the lung is damaged. Therefore, you will feel muchdifferent than your friend.As to lifting, it is an anaerobic exercise where as treadmill isaerobic. The difference is lifting normally looks to your muscles foroxygen. They don't have it, then there is a weakness and shortness ofbreath. I cannot lift and bend far over at all. Yet, I can get on thetreadmill and walk.Now you should point out all sypmptoms to your doctor and muscleweakness can also come from a connective tissue disease.>> Hi all, I feel so lucky and feel kind of stupid asking these things.There are so many here that are so sick and so far I just feel betterhaving oxygen.>> I am having such a hard time keeping my nose open to breathe. I amusing an AYR nasel spay and it just doesn't do it. I just finished usingsome Nasonex and that has been helpful but the saline solution doesn'thelp at all. Any other ideas?>> Also, I have noticed something strange. I think I have plenty ofoxygen but I seem to be getting weaker. I don't understand it since Iexercise vigorously 4 days a week for an hour each day. My portableseems almost too heavy to hold where last month it didn't and I amhaving a difficult time doing things. Is this part of IPF? I don't knowif I should tell my doctor or if it is all in my mind and I want toshirk doing things. I am completely baffeled. I should be gettingstronger but I have been getting weaker. Confused.>> I have been busy and active and my spirits are high and I'm doingthings like baking bread and having fun with my friends and my animals.Also do any of you know about COPD? I have a friend who has severe COPDbut her doctor says oxygen won't help her it may make her morecomfortable but it won't help her yet she doesn't lose her breath like Ido going from the living room to the kitchen and I have a small house! Ithink my IPF is mild at the moment and don't understand why my symptomsseem to be worse then hers and she is severe. Am I just making this upin my mind that I get breathless if I don't have oxygen with suchminimal exertion? I feel like I am a fraud and should just throw myoxygen out and get on with life. Also when doing tasks I seem to have torest in between. I just can't zip thru my kitchen cleaning it. I takethe dishes out of the dishwasher and then I need to rest. Then I rinsesome dishes off and need to rest. Am I making this up?>> Blue Flyer Joyce 63 AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce no answer required-- do you have to bake your own bread? can't you buy ready made bread? it would be a lot easier on you Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Re: breathing and weaknessTo: Breathe-Support Date: Saturday, January 24, 2009, 5:09 PM I will try to be patient but the day is almost gone and I only have 3/4 of my kitchen clean enough so I can cook! It is frustrating me but I guess when there is nothing you can do about it you have to stop being frustrated. Tomorrow I have to make some bread and knead it and I'm going to have to stand and pummel the dough for 15 minutes straight. I sure hope I get some of my frustration out on the dough. Maybe it will be the best bread I have made! It's just that there is so much that has to be done and so much I WANT to do and it is so hard to do it. It's like things never get done! My entire house has floors that need to be washed and I have made arrangements for someone to come in twice a month and wash them for me because I can no longer do it. It's just plain too hard for me to sweep and then mop all over the house. Frustrating ...but at least I will be able to afford someone to do what I should be able to do!But, I still intend to have some beef enchilada's for dinner tonight so I best stop bitching and get to work! LOL Yes indeed, I will be enjoying those enchilada's. .. Blue Flyer, Joyce 64 AZ IPF 8-11 Re: breathing and weakness JoyceFirst, PF and COPD are totally different diseases in so many ways. COPDis obstructive, meaning the airways are blocked or filled. PF isrestrictive, meaning the lung is damaged. Therefore, you will feel muchdifferent than your friend.As to lifting, it is an anaerobic exercise where as treadmill isaerobic. The difference is lifting normally looks to your muscles foroxygen. They don't have it, then there is a weakness and shortness ofbreath. I cannot lift and bend far over at all. Yet, I can get on thetreadmill and walk.Now you should point out all sypmptoms to your doctor and muscleweakness can also come from a connective tissue disease.>> Hi all, I feel so lucky and feel kind of stupid asking these things.There are so many here that are so sick and so far I just feel betterhaving oxygen.>> I am having such a hard time keeping my nose open to breathe. I amusing an AYR nasel spay and it just doesn't do it. I just finished usingsome Nasonex and that has been helpful but the saline solution doesn'thelp at all. Any other ideas?>> Also, I have noticed something strange. I think I have plenty ofoxygen but I seem to be getting weaker. I don't understand it since Iexercise vigorously 4 days a week for an hour each day. My portableseems almost too heavy to hold where last month it didn't and I amhaving a difficult time doing things. Is this part of IPF? I don't knowif I should tell my doctor or if it is all in my mind and I want toshirk doing things. I am completely baffeled. I should be gettingstronger but I have been getting weaker. Confused.>> I have been busy and active and my spirits are high and I'm doingthings like baking bread and having fun with my friends and my animals.Also do any of you know about COPD? I have a friend who has severe COPDbut her doctor says oxygen won't help her it may make her morecomfortable but it won't help her yet she doesn't lose her breath like Ido going from the living room to the kitchen and I have a small house! Ithink my IPF is mild at the moment and don't understand why my symptomsseem to be worse then hers and she is severe. Am I just making this upin my mind that I get breathless if I don't have oxygen with suchminimal exertion? I feel like I am a fraud and should just throw myoxygen out and get on with life. Also when doing tasks I seem to have torest in between. I just can't zip thru my kitchen cleaning it. I takethe dishes out of the dishwasher and then I need to rest. Then I rinsesome dishes off and need to rest. Am I making this up?>> Blue Flyer Joyce 63 AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce changing positions makes me cough -- going from erect to laying down and vice versa i asked the doc about it, and she indicated that the answer is unknown i understand why bending over makes me cough, but not the above it's time to find easier ways to do things Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: breathing and weaknessTo: Breathe-Support Date: Saturday, January 24, 2009, 2:40 PM Yes, Beth I will make a journal. After I wrote my note to the group I raised my oxygen and am feeling much better as to my endurance and my kitchen. I guess I need to increase my oxygen when I am moving about. I will indeed tell my doctor when I see him next and will keep a journal as to when I feel weak and what my O2 is. I have an oximerter so it should be relatively easy to do. I have also started to cough in the morning when I wake and I am congested. Sure don't understand that either. And, yes it is foolish of me to compare myself to someone else..even with the same illness but I have to tell you sometimes I do wonder if I am just making this all up in my mind....it is so hard for me to grasp that I just am having a hard time doing things. I feel like a sherker...or that I am lazy and end up calling myself names and forcing myself to do more until I just have to quit. I mean all my life I have had a hate of housekeeping but I have been able to do it and over the years my house has gone to hell and I kept telling myself I am lazy or I just don't have any pride in my house but it was actually that I really was having a hard time doing it. It was so hard that I always put off doing it and I'd call myself lazy. It just seems outrageous and stupid that I can't just get up and rinse the dishes and clean off the counters and sweep the floor and begin cooking! I am flabergasted tha tI can no longer do it. Blue Flyer Joyce 63 AZ IPF 11-08 breathing and weakness Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce changing positions makes me cough -- going from erect to laying down and vice versa i asked the doc about it, and she indicated that the answer is unknown i understand why bending over makes me cough, but not the above it's time to find easier ways to do things Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: breathing and weaknessTo: Breathe-Support Date: Saturday, January 24, 2009, 2:40 PM Yes, Beth I will make a journal. After I wrote my note to the group I raised my oxygen and am feeling much better as to my endurance and my kitchen. I guess I need to increase my oxygen when I am moving about. I will indeed tell my doctor when I see him next and will keep a journal as to when I feel weak and what my O2 is. I have an oximerter so it should be relatively easy to do. I have also started to cough in the morning when I wake and I am congested. Sure don't understand that either. And, yes it is foolish of me to compare myself to someone else..even with the same illness but I have to tell you sometimes I do wonder if I am just making this all up in my mind....it is so hard for me to grasp that I just am having a hard time doing things. I feel like a sherker...or that I am lazy and end up calling myself names and forcing myself to do more until I just have to quit. I mean all my life I have had a hate of housekeeping but I have been able to do it and over the years my house has gone to hell and I kept telling myself I am lazy or I just don't have any pride in my house but it was actually that I really was having a hard time doing it. It was so hard that I always put off doing it and I'd call myself lazy. It just seems outrageous and stupid that I can't just get up and rinse the dishes and clean off the counters and sweep the floor and begin cooking! I am flabergasted tha tI can no longer do it. Blue Flyer Joyce 63 AZ IPF 11-08 breathing and weakness Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Rudy Joyce changing positions makes me cough -- going from erect to laying down and vice versa i asked the doc about it, and she indicated that the answer is unknown i understand why bending over makes me cough, but not the above it's time to find easier ways to do things Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: breathing and weaknessTo: Breathe-Support Date: Saturday, January 24, 2009, 2:40 PM Yes, Beth I will make a journal. After I wrote my note to the group I raised my oxygen and am feeling much better as to my endurance and my kitchen. I guess I need to increase my oxygen when I am moving about. I will indeed tell my doctor when I see him next and will keep a journal as to when I feel weak and what my O2 is. I have an oximerter so it should be relatively easy to do. I have also started to cough in the morning when I wake and I am congested. Sure don't understand that either. And, yes it is foolish of me to compare myself to someone else..even with the same illness but I have to tell you sometimes I do wonder if I am just making this all up in my mind....it is so hard for me to grasp that I just am having a hard time doing things. I feel like a sherker...or that I am lazy and end up calling myself names and forcing myself to do more until I just have to quit. I mean all my life I have had a hate of housekeeping but I have been able to do it and over the years my house has gone to hell and I kept telling myself I am lazy or I just don't have any pride in my house but it was actually that I really was having a hard time doing it. It was so hard that I always put off doing it and I'd call myself lazy. It just seems outrageous and stupid that I can't just get up and rinse the dishes and clean off the counters and sweep the floor and begin cooking! I am flabergasted tha tI can no longer do it. Blue Flyer Joyce 63 AZ IPF 11-08 breathing and weakness Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Joyce, when you lie down,do it slowly and try exhaling thru your mouth as you go down, and lie still a few seconds. It might help, It seems to help me sometimes but not always. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 thanks Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: breathing and weaknessTo: Breathe-Support Date: Sunday, February 1, 2009, 4:29 AM Joyce, when you lie down,do it slowly and try exhaling thru your mouth as you go down, and lie still a few seconds. It might help, It seems to help me sometimes but not always. Marcia Quote Link to comment Share on other sites More sharing options...
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