Re: breathing and weakness

[Guest guest]

Yes Joyce, I did. I feel so sorry that I endangered my daughter by encouraging her and supporting the endeavor. I loved the little critters also. My pets have been my confidants and companions through many a tough time when I couldn't share my feelings, fears and situations with my daughter or co-workers. They were all I had. My grandfather even gave me three ducks to play with when I was maybe 11 months old. I kept them along with a menagerie of cats, dogs, guinea pigs, chickens and a horse. I thought that my daughter would be deprived if she did not have the companionship of critters and learning to be a compassionate care taker; that they would teach her responsibility.

I was thinking about that regret earlier this week. What if I have exposed my daughter to something that would cause her to eventually get lung disease. The state no longer will allow birds in day cares, schools, (I was a science teacher) or medical facilities. It is like learning about smoking and latex. My baby is 31 now, is married, has a good job, a nice home and three young children. I do not want her to be in pain or have a shortened life; she could have made friends, visited the zoo and learned responsibility in many other ways. All I have left now is a cat that decided she wanted to live with me. I had a cat that I thought would be my last until this one came along. She sticks close to me and we will probably go pretty close together. My daughter gave her birds to friends who had farms and put the injured ones down humanely because the other birds would have pecked them to death and they could not find food, water and shelter for

themselves. Her cat died of old age and her dog that had epilepsy had to be put down when he got old and nothing could be done for him. She did get another kitty...then I remember when we got her first kitty, Honey, she was the most beautiful, sweetest cat that was spayed, had her shots, license and a vet check as a condition of adoption from the shelter...she curled up and looked so sweet sleeping next to my daughter's face...then one morning she barfed up a wad of disgusting worms in my bedroom doorway. I was just horrified and terrified; we immediately took her to the vet and had her wormed, she lived many more years and we adored her. I have my critters cremated and their ashes will go in with mine. They are parts of my family!

I look at it pragmatically, once I was on vacation with three dear friends in my car. A squirrel ran into the road and to avoid hitting it, I almost ran head on into on coming traffic and killed us all...who did I love and value more? my friends and myself or the squirrel? You only have this one life so you have to decide what is most important to you. Some days my kitty causes me more stress than I need and I wish my ex husband would take her, he loves her too. She gets under my feet and causes me to trip and sometimes hurt myself, she yowls incessantly even after just being fed, she gets on my bed making me lose my breath trying to move her in order to turn over or get up, she barfs on the carpet and I can't bend to clean it up and last week she barfed on my freshly changed bed right where my chin would be that I didn't find until I was totally exhausted and needed to go to sleep. It is a decision I have to make, I have closed

doors and she takes it out by barfing on the sofa... These days I am trying to stay alive and not do anything to hasten my departure. She has been crawling up beside me, putting her feet on the key board...

Margaret

To: Breathe-Support Sent: Saturday, January 24, 2009 5:09:45 PMSubject: Re: breathing and weakness

Margeret- did you get rid of your birds? And, did it help? I have 5 cockatiels and 2 English Budgies and I love them dearly. I will not get rid of them! They are my children. I have 5 dogs too and they will not be gotten rid of either! My life would be so empty it would not be worth living. I do things to help keep down the dust like I spray an fine mist on the paper before I change them to help keep the dust from the poop down. Things like that. But I love my birds! Blue Flyer, Joyce 64 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

[Guest guest]

Hi, My doc gives out a sheet that says not to eat for several hours before doing the test/exercise. I forgot and we went out to lunch before my appointment this week and it did make a big difference. Also, I am to eat small meals, graze all day, because my right lung is so atrophied that my diaphragm pushes up on it any way and a lot of food in the stomach makes it a lot worse. When I have eaten large meals, Thanksgiving and Christmas, I have been short of breath even after I go to bed that night. Ask your doc. It is the same with drinking water before exercising, I sip a little all along.

Margaret

To: Breathe-Support Sent: Saturday, January 24, 2009 3:20:52 PMSubject: Re: breathing and weakness

Hi Sharon - I've got mine too. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > > >>

> > > > 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> > > > >> > > >> > >> >>

[Guest guest]

Hi, My doc gives out a sheet that says not to eat for several hours before doing the test/exercise. I forgot and we went out to lunch before my appointment this week and it did make a big difference. Also, I am to eat small meals, graze all day, because my right lung is so atrophied that my diaphragm pushes up on it any way and a lot of food in the stomach makes it a lot worse. When I have eaten large meals, Thanksgiving and Christmas, I have been short of breath even after I go to bed that night. Ask your doc. It is the same with drinking water before exercising, I sip a little all along.

Margaret

To: Breathe-Support Sent: Saturday, January 24, 2009 3:20:52 PMSubject: Re: breathing and weakness

Hi Sharon - I've got mine too. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > > >>

> > > > 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> > > > >> > > >> > >> >>

[Guest guest]

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact

to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing.

I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact

to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing.

I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact

to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing.

I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

I am beginning to understand things. When I am in Aquafit, I often get cramps in my legs...that may be due to lack of oxygen? And, sometimes my legs feel like they are wooden...could that be from lack of oxygen? I get so I can barely lift my legs in Aerobics...but couldn't it just be that I am not in good shape? I know one thing, since I have been on oxygen, my ankles and my right foot have not swollen. Before I couldn't put my shoes on! Now my foot or feet are ok...And that burning sensation in your muscles are a lack of oxygen...who would know? Blue Flyer, Joyce 64 AZ IPF 11-08

Re: breathing and weakness

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing. I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

I am beginning to understand things. When I am in Aquafit, I often get cramps in my legs...that may be due to lack of oxygen? And, sometimes my legs feel like they are wooden...could that be from lack of oxygen? I get so I can barely lift my legs in Aerobics...but couldn't it just be that I am not in good shape? I know one thing, since I have been on oxygen, my ankles and my right foot have not swollen. Before I couldn't put my shoes on! Now my foot or feet are ok...And that burning sensation in your muscles are a lack of oxygen...who would know? Blue Flyer, Joyce 64 AZ IPF 11-08

Re: breathing and weakness

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing. I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

I am beginning to understand things. When I am in Aquafit, I often get cramps in my legs...that may be due to lack of oxygen? And, sometimes my legs feel like they are wooden...could that be from lack of oxygen? I get so I can barely lift my legs in Aerobics...but couldn't it just be that I am not in good shape? I know one thing, since I have been on oxygen, my ankles and my right foot have not swollen. Before I couldn't put my shoes on! Now my foot or feet are ok...And that burning sensation in your muscles are a lack of oxygen...who would know? Blue Flyer, Joyce 64 AZ IPF 11-08

Re: breathing and weakness

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing. I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

Joyce,

If you have an oximeter, use it when you feel that heaviness or weakness in your legs. If your sats are low then the sensation you feel is likely from low O2. You want to make sure your sats stay above 90 when you are exercising. Have you been through a pulmonary rehab program? If not it's something to look into. You can find out for sure how you can exercise safely.

And yes of course muscle weakness can be just that muscle weakness and not being in good shape. But it's best for us to rule out low oxygen in order to keep ourselves safe!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, January 25, 2009 10:41:30 AMSubject: Re: Re: breathing and weakness

I am beginning to understand things. When I am in Aquafit, I often get cramps in my legs...that may be due to lack of oxygen? And, sometimes my legs feel like they are wooden...could that be from lack of oxygen? I get so I can barely lift my legs in Aerobics...but couldn't it just be that I am not in good shape? I know one thing, since I have been on oxygen, my ankles and my right foot have not swollen. Before I couldn't put my shoes on! Now my foot or feet are ok...And that burning sensation in your muscles are a lack of oxygen...who would know? Blue Flyer, Joyce 64 AZ IPF 11-08

Re: breathing and weakness

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing. I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

Joyce,

If you have an oximeter, use it when you feel that heaviness or weakness in your legs. If your sats are low then the sensation you feel is likely from low O2. You want to make sure your sats stay above 90 when you are exercising. Have you been through a pulmonary rehab program? If not it's something to look into. You can find out for sure how you can exercise safely.

And yes of course muscle weakness can be just that muscle weakness and not being in good shape. But it's best for us to rule out low oxygen in order to keep ourselves safe!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, January 25, 2009 10:41:30 AMSubject: Re: Re: breathing and weakness

I am beginning to understand things. When I am in Aquafit, I often get cramps in my legs...that may be due to lack of oxygen? And, sometimes my legs feel like they are wooden...could that be from lack of oxygen? I get so I can barely lift my legs in Aerobics...but couldn't it just be that I am not in good shape? I know one thing, since I have been on oxygen, my ankles and my right foot have not swollen. Before I couldn't put my shoes on! Now my foot or feet are ok...And that burning sensation in your muscles are a lack of oxygen...who would know? Blue Flyer, Joyce 64 AZ IPF 11-08

Re: breathing and weakness

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing. I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

Joyce,

If you have an oximeter, use it when you feel that heaviness or weakness in your legs. If your sats are low then the sensation you feel is likely from low O2. You want to make sure your sats stay above 90 when you are exercising. Have you been through a pulmonary rehab program? If not it's something to look into. You can find out for sure how you can exercise safely.

And yes of course muscle weakness can be just that muscle weakness and not being in good shape. But it's best for us to rule out low oxygen in order to keep ourselves safe!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, January 25, 2009 10:41:30 AMSubject: Re: Re: breathing and weakness

I am beginning to understand things. When I am in Aquafit, I often get cramps in my legs...that may be due to lack of oxygen? And, sometimes my legs feel like they are wooden...could that be from lack of oxygen? I get so I can barely lift my legs in Aerobics...but couldn't it just be that I am not in good shape? I know one thing, since I have been on oxygen, my ankles and my right foot have not swollen. Before I couldn't put my shoes on! Now my foot or feet are ok...And that burning sensation in your muscles are a lack of oxygen...who would know? Blue Flyer, Joyce 64 AZ IPF 11-08

Re: breathing and weakness

I remember people saying that when they bend over it cuts off their air. When I was on only 2 lt 02, I didn¢t notice it however now on the higher 4 and 6 lt, I feel it, when I bend I get SOB. In Rehab we were taught when possible not to bend but to squat. For instance when tucking the sheets in under the mattress, don¢t bend over but squat down and when you go down breath out and also when you raise up. In fact they told us to exhale as we sit down and as we rise. Even when reaching to put dishes in the cabinet, as we reach exhale. In fact to exhale when doing so many things. I had forgotten and am going to have to work to put it in practice again as it seemed to help.

As for the treadmill, a doctor told me it is because it is moving toward you, it is easier to walk. I also think it has something to do with having you hands up (if you hold on to the rails). I notice I do better walking in a store, as my arms are in the same position holding (pushing) on the handle of the shopping cart. Walking outside, I think maybe I mouth breath, and it is usually not as smooth walking as indoors or on the treadmill. I seem to have much more trouble breathing. I have one of those grabber things that they show for people in wheelchairs. I should get me a couple more for different rooms. If I drop a paper or something I don¢t need at that moment, it stays right there until I feel like getting up and hunting down my grabber. The world isn¢t going to come to a screeching halt if it sits there, and while it might annoy me to see it on the floor, I don¢t have small children or animals who will stick it in their mouth, and leaning over to pick it up, will leave me out of breath. Although I do it sometimes anyway. Marcia

[Guest guest]

Margaret- right now my animals are too precious to me and I am just at the beginning of IPF. I cannot give up my animals! They are my family. I could not give up a child either. I have taken to misting the papers of the birds cages before I gather them up to reduce any dust and I have taken to changing their papers as often as I can. I mist my birds too daily. Right now they are in my heart and I can't give them up. They make my life worth living. 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

[Guest guest]

Margaret- right now my animals are too precious to me and I am just at the beginning of IPF. I cannot give up my animals! They are my family. I could not give up a child either. I have taken to misting the papers of the birds cages before I gather them up to reduce any dust and I have taken to changing their papers as often as I can. I mist my birds too daily. Right now they are in my heart and I can't give them up. They make my life worth living. 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

[Guest guest]

Joyce,

Happy to help! It's just a matter of doing everything possible to protect our lungs. You may at some point in the future make a different decision about your pets but for now just do what you can given the decisions you are making now!

I don't use my O2 when I get out of the car to pump gas. So far I can get out, pump the gas and get back in the car without my sats dropping below 92 or 93. I keep baby wipes in the car to wipe my hands off before putting the tubing back on my face but so far that's all I really worry too much about.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, January 25, 2009 11:08:28 AMSubject: Re: breathing and weakness

Beth, what a good idea! I will do that! That should pretty much protect me from the birds....and the gloves are a good idea too. Do you pump gas while breathing your oxygen? I take my oxygen off and pump the gas. Thank you so much for suggesting that I wear a mask...Joyce

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

[Guest guest]

Joyce,

Happy to help! It's just a matter of doing everything possible to protect our lungs. You may at some point in the future make a different decision about your pets but for now just do what you can given the decisions you are making now!

I don't use my O2 when I get out of the car to pump gas. So far I can get out, pump the gas and get back in the car without my sats dropping below 92 or 93. I keep baby wipes in the car to wipe my hands off before putting the tubing back on my face but so far that's all I really worry too much about.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, January 25, 2009 11:08:28 AMSubject: Re: breathing and weakness

Beth, what a good idea! I will do that! That should pretty much protect me from the birds....and the gloves are a good idea too. Do you pump gas while breathing your oxygen? I take my oxygen off and pump the gas. Thank you so much for suggesting that I wear a mask...Joyce

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

[Guest guest]

MB,  Bruce, Joyce, and all, When you need gas drive up to where the store person can see you and show them your handicap thingie and they will come pump for you.. I have done that a few times and they are always very accommodating. Some stations have a button you can call inside.  Love & Prayers, PeggyFlorida,  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."  JoyceYes, I do pump gas while breathing my oxygen. I stand back once I startit. I am careful not to reenter my vehicle while pumping and set offpossible sparks. But, my oxygen would drop too much if I didn't use it.>> Beth, what a good idea! I will do that! That should pretty muchprotect me from the birds....and the gloves are a good idea too. Do youpump gas while breathing your oxygen? I take my oxygen off and pump thegas. Thank you so much for suggesting that I wear a mask...Joyce> breathing and weakness>>>> Hi all, I feel so lucky and feel kind of stupid asking thesethings. There are so many here that are so sick and so far I just feelbetter having 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>

[Guest guest]

Peggy

I will when I reach the point i need it. I go to the same convenience

store all the time-there nearly every day for something. But, right now,

I have no real problem pumping gas.

> >

> > Beth, what a good idea! I will do that! That should pretty

much

> protect me from the birds....and the gloves are a good idea too. Do

you

> pump gas while breathing your oxygen? I take my oxygen off and pump

the

> gas. Thank you so much for suggesting that I wear a mask...Joyce

> > 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

> >

>

[Guest guest]

Peggy

I will when I reach the point i need it. I go to the same convenience

store all the time-there nearly every day for something. But, right now,

I have no real problem pumping gas.

> >

> > Beth, what a good idea! I will do that! That should pretty

much

> protect me from the birds....and the gloves are a good idea too. Do

you

> pump gas while breathing your oxygen? I take my oxygen off and pump

the

> gas. Thank you so much for suggesting that I wear a mask...Joyce

> > 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

> >

>

[Guest guest]

Peggy

I will when I reach the point i need it. I go to the same convenience

store all the time-there nearly every day for something. But, right now,

I have no real problem pumping gas.

> >

> > Beth, what a good idea! I will do that! That should pretty

much

> protect me from the birds....and the gloves are a good idea too. Do

you

> pump gas while breathing your oxygen? I take my oxygen off and pump

the

> gas. Thank you so much for suggesting that I wear a mask...Joyce

> > 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

> >

>

[Guest guest]

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

[Guest guest]



Thanks for the info, Peggy. It's good to know. Joyce

breathing and weakness>>>> Hi all, I feel so lucky and feel kind of stupid asking thesethings. There are so many here that are so sick and so far I just feelbetter having 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>

[Guest guest]

Rudy...you ask if it's wrong to have your O2 @ 98. That's good!

As I understand it we consistently attempt to keep our O2 from dropping into the 80s. I feel a difference at about 92-93 and others have said the same. You will get where you can just "feel" your sats are too low FOR YOU.

Try not to compare w/ others tho'...ask your Dr. any and all questions. If you are concerned, call his/her office and have nurse ask the question and get back to you.

I've been reading how you are improving on your care of the birds.

Pets are such wonderful creatures.

Take care.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

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

[Guest guest]

Rudy...you ask if it's wrong to have your O2 @ 98. That's good!

As I understand it we consistently attempt to keep our O2 from dropping into the 80s. I feel a difference at about 92-93 and others have said the same. You will get where you can just "feel" your sats are too low FOR YOU.

Try not to compare w/ others tho'...ask your Dr. any and all questions. If you are concerned, call his/her office and have nurse ask the question and get back to you.

I've been reading how you are improving on your care of the birds.

Pets are such wonderful creatures.

Take care.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

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

[Guest guest]

I lived with hiatal hernia for 7 yrs , this lead to a stomach

volvulus( ( a constriction ) so i had my surgery done in 2003.

i am much better now and it got rid of my acidity too!

Geeta

-- In Breathe-Support , " Bruce Moreland "

wrote:

>

> Sharon

>

> Even without the hernia, the food fills you and compresses the

available

> space and inhibits breathing as deeply. Never take a PFT right

after

> eating 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. 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

> > > > >

> > > >

> > >

> >

>