Re: Barb

[Guest guest]

Barb, As far as getting used to the 02.. yes it takes time. The biggest thing is think about sleeping with it because our respiratory system slows and our saturation really drops. Try the soft hose for sleeping. I am a side sleeper so I pull the hose over my side at hip level then have a little slack so it won't pull my ears. So until you get used to it try taping it up your tummy.. I know it sounds strange but don't forget we are special.. You will get used to it. When I first started sleeping with it I would get the cannula hose pinched and the alarm on the concentrator would scare the mess out of us. lol Anyhow the point is you need 02 24/7.. One more tip. When I go out I just use the 50 and 25 foot hoses to get in the yard. You do loose a little leader flow so check your saturation to make sure it stays up. And GO girl. If you use salter hoses they can be closed in a window or door.. put your hose under your shirt helps to. make a loop and stick it in your waist band.. You'll learn all these tricks. I learned from trial and my nose and ears learned from error.Are you on liquid or tanks. Sounds like liquid. I couldn't do the fill either. I can surly sling these tanks around. lolThe giving up of independence was the hardest thing EVER. I still have a hard time with it. It looks like I could just give up and let the house not bother me but I just go nuts at times.. That is the times gets a good house cleaning lesson. lol Oh my Lord what would I do without him.. We also watched Dance last night and I cried to that was very powerful. Dealing with families is always so hard. The longer this goes on for me I keep thinking it will get better but they see the decline and I see it in their faces. just does what needs doing and tries not to show any emotion about the new me but I can see and feel it. Her hugs are a bit longer and I catch her just looking at me.. we talked about this one time and she said she had to burn my face in her brain because a picture is not me.. Oh yea, cry. cry cry. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Peggy -I'm doing pretty well. Been using the O2 for about 2 weeks now. Supposed to use it 24/7 on 2 liter, but haven't been using it for sleep - mostly cause I can't figure out how that works with someone (me) who tosses and turns. I do more stuff in the house now, but I need to use the portable to do anything outside the confines of the house and I am not proficient at filling it up. Mike (my darling husband) has been filling it for me, but I hate to ask him because, of course, I'm an independent cuss and hate to ask anybody to do anything. So gardening, or walking to the mailbox, taking the dogs for a short walk are no longer a spur-of-the moment thing, and I'm not reconciled to that yet. Now you've got me going..... On "So You Think You Can Dance" last night, two dancers performed a piece that was the choreographer's interpretation of his relationship with a friend who had recently been diagnosed with breast cancer. There was not a dry eye among the judges, and both my husband and I were crying too. I'm not sure which of the judges/performers said it, but a statement was made that -- on top of the difficulties brought on the the illness itself -- the "victim" bore the weight of shielding their loved ones from many of the problems and emotions they lived with on a daily basis. They try to put on a happy face so that those they love would not feel their pain. That reminded me of the plight many of us IPFers live with daily. Anyway, there I go waxing philosophical. I go back to Emory at the end of the month, and so I have that to look forward to. (smile) I've been sorry to read that you are dealing with some crappy days. I hope and pray that you will have some truly wonderful ones to make up for it. Hugs,B Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Thursday, July 23, 2009 11:16:01 AMSubject: Re: 7/23/09 Missy Elisa and meBarb, how are you feeling and hows the breathing ??Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up.<1.876692334>Peggy: my hero!B Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Thursday, July 23, 2009 10:58:54 AMSubject: Re: 7/23/09 Missy Elisa and meBarb for ((((((((((((You)))))))))))) more in Oct... ;)Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up.<1.876515970>Now I want a hug! ;-)B Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 23, 2009 9:31:15 AMSubject: 7/23/09 Missy Elisa and me [1 Attachment] Here is the only picture I have of us. I need a new camera. We were to busy viviting to think about pictures much. HoweverTT did take a fewon Elisas camera. She will post them when she gets home.Sure could use a little color in that head.. Dark glasses tell ya I'm incognito.. couldn't let everyone think that is me so round and fully packed...DSC00904.JPG

[Guest guest]

Barb,

Peggy, as usual, came up with some really excellent practical tips for dealing with the oxygen especially while you are sleeping. It is important to try to get used to sleeping with it. Our respirations slow and become more shallow when we sleep so it is just as important to use the O2 overnight as it is during the day.

When I first started using it, I got tangled up in it, lost it in the bed, woke up with it in my hair etc etc etc. I used to use paper tape to attach the canulla to my cheeks so it stayed in place better. Now I don't have any problem with it. I've gotten used to it and somehow it stays in place overnight.

Feel free to experiment a little...you can attach extra lengths of tubing to your supply and go further from the concentrator or resevoir. Just know that you lose some liter flow the more tubing you attach so you may need to turn it up a bit. This is where a liter meter comes in handy. You can get those from www.tinashomecare.com.

You will adjust, it just takes time. Be patient with yourself. Rome wasn't built in a day! How's the summer in your neck of the woods?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, July 23, 2009 12:21:26 PMSubject: Re: BarbBarb, As far as getting used to the 02.. yes it takes time. The biggest thing is think about sleeping with it because our respiratory system slows and our saturation really drops. Try the soft hose for sleeping. I am a side sleeper so I pull the hose over my side at hip level then have

a little slack so it won't pull my ears. So until you get used to it try taping it up your tummy.. I know it sounds strange but don't forget we are special.. You will get used to it. When I first started sleeping with it I would get the cannula hose pinched and the alarm on the concentrator would scare the mess out of us. lol Anyhow the point is you need 02 24/7..

One more tip. When I go out I just use the 50 and 25 foot hoses to get in the yard. You do loose a little leader flow so check your saturation to make sure it stays up. And GO girl. If you use salter hoses they can be closed in a window or door.. put your hose under your shirt helps to.

make a loop and stick it in your waist band.. You'll learn all these tricks. I learned from trial and my nose and ears learned from error.

Are you on liquid or tanks. Sounds like liquid. I couldn't do the fill either. I can surly sling these tanks around. lol

The giving up of independence was the hardest thing EVER. I still have a hard time with it. It looks like I could just give up and let the house not bother me but I just go nuts at times.. That is the times gets a good house cleaning lesson. lol

Oh my Lord what would I do without him..

We also watched Dance last night and I cried to that was very powerful. Dealing with families is always so hard. The longer this goes on for me I keep thinking it will get better but they see the decline and I see it in their faces. just does what needs doing and tries not to show any emotion about the new me but I can see and feel it. Her hugs are a bit longer and I catch her just looking at me.. we talked about this one time and she said she had to burn my face in her brain because a picture is not me.. Oh yea, cry. cry cry.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

Peggy -

I'm doing pretty well. Been using the O2 for about 2 weeks now. Supposed to use it 24/7 on 2 liter, but haven't been using it for sleep - mostly cause I can't figure out how that works with someone (me) who tosses and turns. I do more stuff in the house now, but I need to use the portable to do anything outside the confines of the house and I am not proficient at filling it up. Mike (my darling husband) has been filling it for me, but I hate to ask him because, of course, I'm an independent cuss and hate to ask anybody to do anything. So gardening, or walking to the mailbox, taking the dogs for a short walk are no longer a spur-of-the moment thing, and I'm not reconciled to that yet.

Now you've got me going.....

On "So You Think You Can Dance" last night, two dancers performed a piece that was the choreographer's interpretation of his relationship with a friend who had recently been diagnosed with breast cancer. There was not a dry eye among the judges, and both my husband and I were crying too. I'm not sure which of the judges/performers said it, but a statement was made that -- on top of the difficulties brought on the the illness itself -- the "victim" bore the weight of shielding their loved ones from many of the problems and emotions they lived with on a daily basis. They try to put on a happy face so that those they love would not feel their pain. That reminded me of the plight many of us IPFers live with daily.

Anyway, there I go waxing philosophical.

I go back to Emory at the end of the month, and so I have that to look forward to. (smile)

I've been sorry to read that you are dealing with some crappy days. I hope and pray that you will have some truly wonderful ones to make up for it.

Hugs,

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 11:16:01 AMSubject: Re: 7/23/09 Missy Elisa and meBarb, how are you feeling and hows the breathing ??

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

<1.876692334>

Peggy: my hero!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 10:58:54 AMSubject: Re: 7/23/09 Missy Elisa and meBarb for ((((((((((((You)))))))))))) more in Oct...

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

<1.876515970>

Now I want a hug!

;-)

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 23, 2009 9:31:15 AMSubject: 7/23/09 Missy Elisa and me [1 Attachment]

Here is the only picture I have of us. I need a new camera. We were to busy viviting to think about pictures much. HoweverTT did take a fewon Elisas camera. She will post them when she gets home.Sure could use a little color in that head.. Dark glasses tell ya I'm incognito.. couldn't let everyone think that is me so round and fully packed...DSC00904.JPG

[Guest guest]

Thanks for the tips, Peggy. I have been safety-pinning the hose to my hip pocket so that I don't hurt my ears or nose if I "forget". Now I find that, several times, I have taken off the cannula and put it down only to find it is being dragged on the floor after me because it's still pinned to me. Duh!

I'm trying very hard to learn to live with different standards, and find the bright side. For example, not having been able to do much weeding this year (and we have 1.6 acres to care for), I find that among the noxious weeds are many beautiful wildflowers that I never would have seen if I'd been able to weed. I am having a tough time relinquishing some of my cooking duties. I am such a picky eater, and not a bad little cook, and... ya know... Mike doesn't cook the way I do. That's a tough one for me. But once I get that electric stove in here, I'll be doing the cooking as long as I am able (hopefully many, many years to come).

Whenever anyone asks hom I am, my standard reply is "good". If pressed, I tell a little more, but I do keep a lot to myself, sharing it only somewhat with a good friend, but mostly keeping it in or "sharing" on this forum. I am very grateful for this forum and the wonderful people on it who I now consider my friends.

I am so looking forward to October.....

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 12:21:26 PMSubject: Re: BarbBarb, As far as getting used to the 02.. yes it takes time. The biggest thing is think about sleeping with it because our respiratory system slows and our saturation really drops. Try the soft hose for sleeping. I am a side sleeper so I pull the hose over my side at hip level then have

a little slack so it won't pull my ears. So until you get used to it try taping it up your tummy.. I know it sounds strange but don't forget we are special.. You will get used to it. When I first started sleeping with it I would get the cannula hose pinched and the alarm on the concentrator would scare the mess out of us. lol Anyhow the point is you need 02 24/7..

One more tip. When I go out I just use the 50 and 25 foot hoses to get in the yard. You do loose a little leader flow so check your saturation to make sure it stays up. And GO girl. If you use salter hoses they can be closed in a window or door.. put your hose under your shirt helps to.

make a loop and stick it in your waist band.. You'll learn all these tricks. I learned from trial and my nose and ears learned from error.

Are you on liquid or tanks. Sounds like liquid. I couldn't do the fill either. I can surly sling these tanks around. lol

The giving up of independence was the hardest thing EVER. I still have a hard time with it. It looks like I could just give up and let the house not bother me but I just go nuts at times.. That is the times gets a good house cleaning lesson. lol

Oh my Lord what would I do without him..

We also watched Dance last night and I cried to that was very powerful. Dealing with families is always so hard. The longer this goes on for me I keep thinking it will get better but they see the decline and I see it in their faces. just does what needs doing and tries not to show any emotion about the new me but I can see and feel it. Her hugs are a bit longer and I catch her just looking at me.. we talked about this one time and she said she had to burn my face in her brain because a picture is not me.. Oh yea, cry. cry cry.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

Peggy -

I'm doing pretty well. Been using the O2 for about 2 weeks now. Supposed to use it 24/7 on 2 liter, but haven't been using it for sleep - mostly cause I can't figure out how that works with someone (me) who tosses and turns. I do more stuff in the house now, but I need to use the portable to do anything outside the confines of the house and I am not proficient at filling it up. Mike (my darling husband) has been filling it for me, but I hate to ask him because, of course, I'm an independent cuss and hate to ask anybody to do anything. So gardening, or walking to the mailbox, taking the dogs for a short walk are no longer a spur-of-the moment thing, and I'm not reconciled to that yet.

Now you've got me going.....

On "So You Think You Can Dance" last night, two dancers performed a piece that was the choreographer's interpretation of his relationship with a friend who had recently been diagnosed with breast cancer. There was not a dry eye among the judges, and both my husband and I were crying too. I'm not sure which of the judges/performers said it, but a statement was made that -- on top of the difficulties brought on the the illness itself -- the "victim" bore the weight of shielding their loved ones from many of the problems and emotions they lived with on a daily basis. They try to put on a happy face so that those they love would not feel their pain. That reminded me of the plight many of us IPFers live with daily.

Anyway, there I go waxing philosophical.

I go back to Emory at the end of the month, and so I have that to look forward to. (smile)

I've been sorry to read that you are dealing with some crappy days. I hope and pray that you will have some truly wonderful ones to make up for it.

Hugs,

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 11:16:01 AMSubject: Re: 7/23/09 Missy Elisa and meBarb, how are you feeling and hows the breathing ??

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

<1.876692334>

Peggy: my hero!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 10:58:54 AMSubject: Re: 7/23/09 Missy Elisa and meBarb for ((((((((((((You)))))))))))) more in Oct...

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

<1.876515970>

Now I want a hug!

;-)

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 23, 2009 9:31:15 AMSubject: 7/23/09 Missy Elisa and me [1 Attachment]

Here is the only picture I have of us. I need a new camera. We were to busy viviting to think about pictures much. HoweverTT did take a fewon Elisas camera. She will post them when she gets home.Sure could use a little color in that head.. Dark glasses tell ya I'm incognito.. couldn't let everyone think that is me so round and fully packed...DSC00904.JPG

[Guest guest]

Peggy,

Oh now I'm in tears, I know my youngest is doing that...damn this

disease

Dyane Phoenix, IPF 02

>

>

> Now I want a hug!

>

> ;-)

> B

>

> Barbara McD

> IPF, Sept 08

> Beautiful Western NC

>

>

>

> Let us not become weary in doing good, for at the proper time we will

> reap a harvest if we do not give up. Galatians 6:9

>

>

>

> From: Peggy pac1773 (AT) cfl (DOT) rr.com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thursday, July 23, 2009 9:31:15 AM

> Subject: 7/23/09 Missy Elisa and me [1 Attachment]

>

>

> Here is the only picture I have of us. I need a new camera. We were

> to busy viviting to think about pictures much. HoweverTT did take a

few

> on Elisas camera. She will post them when she gets home.

>

> Sure could use a little color in that head.. Dark glasses tell ya I'm

> incognito.. couldn't let everyone think that is me so round and fully

> packed...

>

>

>

> DSC00904.JPG

>

[Guest guest]

Beth:

Summer here has been cooler than usual, with lots of overcast days. Not much in the way of rain in my immediate location, but it's rained up a storm on the other side of the mountain. It's weird how that works in the mountains; the storms just seem to go around us. We have run the air conditioner for maybe a total of 18 hours so far this summer, and the forecast is for more of the same. I love it!

How has the weather been by you?

Regards,

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 2:46:45 PMSubject: Re: Re: Barb

Barb,

Peggy, as usual, came up with some really excellent practical tips for dealing with the oxygen especially while you are sleeping. It is important to try to get used to sleeping with it. Our respirations slow and become more shallow when we sleep so it is just as important to use the O2 overnight as it is during the day.

When I first started using it, I got tangled up in it, lost it in the bed, woke up with it in my hair etc etc etc. I used to use paper tape to attach the canulla to my cheeks so it stayed in place better. Now I don't have any problem with it. I've gotten used to it and somehow it stays in place overnight.

Feel free to experiment a little...you can attach extra lengths of tubing to your supply and go further from the concentrator or resevoir. Just know that you lose some liter flow the more tubing you attach so you may need to turn it up a bit. This is where a liter meter comes in handy. You can get those from www.tinashomecare.com.

You will adjust, it just takes time. Be patient with yourself. Rome wasn't built in a day! How's the summer in your neck of the woods?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, July 23, 2009 12:21:26 PMSubject: Re: BarbBarb, As far as getting used to the 02.. yes it takes time. The biggest thing is think about sleeping with it because our respiratory system slows and our saturation really drops. Try the soft hose for sleeping. I am a side sleeper so I pull the hose over my side at hip level then have a little slack so it won't pull my ears. So until you get used to it try taping it up your tummy.. I know it sounds strange but don't forget we are special.. You will get used to it. When I first started sleeping with it I would get the cannula hose pinched and the alarm on the concentrator would scare the mess out of us. lol Anyhow the point is you need 02 24/7..

One more tip. When I go out I just use the 50 and 25 foot hoses to get in the yard. You do loose a little leader flow so check your saturation to make sure it stays up. And GO girl. If you use salter hoses they can be closed in a window or door.. put your hose under your shirt helps to.

make a loop and stick it in your waist band.. You'll learn all these tricks. I learned from trial and my nose and ears learned from error.

Are you on liquid or tanks. Sounds like liquid. I couldn't do the fill either. I can surly sling these tanks around. lol

The giving up of independence was the hardest thing EVER. I still have a hard time with it. It looks like I could just give up and let the house not bother me but I just go nuts at times.. That is the times gets a good house cleaning lesson. lol

Oh my Lord what would I do without him..

We also watched Dance last night and I cried to that was very powerful. Dealing with families is always so hard. The longer this goes on for me I keep thinking it will get better but they see the decline and I see it in their faces. just does what needs doing and tries not to show any emotion about the new me but I can see and feel it. Her hugs are a bit longer and I catch her just looking at me.. we talked about this one time and she said she had to burn my face in her brain because a picture is not me.. Oh yea, cry. cry cry.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

Peggy -

I'm doing pretty well. Been using the O2 for about 2 weeks now. Supposed to use it 24/7 on 2 liter, but haven't been using it for sleep - mostly cause I can't figure out how that works with someone (me) who tosses and turns. I do more stuff in the house now, but I need to use the portable to do anything outside the confines of the house and I am not proficient at filling it up. Mike (my darling husband) has been filling it for me, but I hate to ask him because, of course, I'm an independent cuss and hate to ask anybody to do anything. So gardening, or walking to the mailbox, taking the dogs for a short walk are no longer a spur-of-the moment thing, and I'm not reconciled to that yet.

Now you've got me going.....

On "So You Think You Can Dance" last night, two dancers performed a piece that was the choreographer's interpretation of his relationship with a friend who had recently been diagnosed with breast cancer. There was not a dry eye among the judges, and both my husband and I were crying too. I'm not sure which of the judges/performers said it, but a statement was made that -- on top of the difficulties brought on the the illness itself -- the "victim" bore the weight of shielding their loved ones from many of the problems and emotions they lived with on a daily basis. They try to put on a happy face so that those they love would not feel their pain. That reminded me of the plight many of us IPFers live with daily.

Anyway, there I go waxing philosophical.

I go back to Emory at the end of the month, and so I have that to look forward to. (smile)

I've been sorry to read that you are dealing with some crappy days. I hope and pray that you will have some truly wonderful ones to make up for it.

Hugs,

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 11:16:01 AMSubject: Re: 7/23/09 Missy Elisa and meBarb, how are you feeling and hows the breathing ??

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

<1.876692334>

Peggy: my hero!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 10:58:54 AMSubject: Re: 7/23/09 Missy Elisa and meBarb for ((((((((((((You)))))))))))) more in Oct...

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

<1.876515970>

Now I want a hug!

;-)

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 23, 2009 9:31:15 AMSubject: 7/23/09 Missy Elisa and me [1 Attachment]

Here is the only picture I have of us. I need a new camera. We were to busy viviting to think about pictures much. HoweverTT did take a fewon Elisas camera. She will post them when she gets home.Sure could use a little color in that head.. Dark glasses tell ya I'm incognito.. couldn't let everyone think that is me so round and fully packed...DSC00904.JPG

[Guest guest]

Barb,

It's actually been a beautiful summer here. Not as hot as last year but sunny, in the 80's and lowish humidity. I have nothing to complain about at all. We did have a pretty dry 3 or 4 weeks in late June, early July and I worked alot to keep everything in the yard watered and still alive. That seems to have shifted now and we're getting some rain every couple of days. Just enough so that I don't have to water very much.

I share your love of working in the yard. I love my flowers and my vegetable garden. It's just so satisfying to watch it come to life and I agree sometimes a 'weed' can be more gorgeous than anything I planned!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, July 23, 2009 4:04:29 PMSubject: Re: Re: Barb

Beth:

Summer here has been cooler than usual, with lots of overcast days. Not much in the way of rain in my immediate location, but it's rained up a storm on the other side of the mountain. It's weird how that works in the mountains; the storms just seem to go around us. We have run the air conditioner for maybe a total of 18 hours so far this summer, and the forecast is for more of the same. I love it!

How has the weather been by you?

Regards,

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 2:46:45 PMSubject: Re: Re: Barb

Barb,

Peggy, as usual, came up with some really excellent practical tips for dealing with the oxygen especially while you are sleeping. It is important to try to get used to sleeping with it. Our respirations slow and become more shallow when we sleep so it is just as important to use the O2 overnight as it is during the day.

When I first started using it, I got tangled up in it, lost it in the bed, woke up with it in my hair etc etc etc. I used to use paper tape to attach the canulla to my cheeks so it stayed in place better. Now I don't have any problem with it. I've gotten used to it and somehow it stays in place overnight.

Feel free to experiment a little...you can attach extra lengths of tubing to your supply and go further from the concentrator or resevoir. Just know that you lose some liter flow the more tubing you attach so you may need to turn it up a bit. This is where a liter meter comes in handy. You can get those from www.tinashomecare.com.

You will adjust, it just takes time. Be patient with yourself. Rome wasn't built in a day! How's the summer in your neck of the woods?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, July 23, 2009 12:21:26 PMSubject: Re: BarbBarb, As far as getting used to the 02.. yes it takes time. The biggest thing is think about sleeping with it because our respiratory system slows and our saturation really drops. Try the soft hose for sleeping. I am a side sleeper so I pull the hose over my side at hip level then have a little slack so it won't pull my ears. So until you get used to it try taping it up your tummy.. I know it sounds strange but don't forget we are special.. You will get used to it. When I first started sleeping with it I would get the cannula hose pinched and the alarm on the concentrator would scare the mess out of us. lol Anyhow the point is you need 02 24/7..

One more tip. When I go out I just use the 50 and 25 foot hoses to get in the yard. You do loose a little leader flow so check your saturation to make sure it stays up. And GO girl. If you use salter hoses they can be closed in a window or door.. put your hose under your shirt helps to.

make a loop and stick it in your waist band.. You'll learn all these tricks. I learned from trial and my nose and ears learned from error.

Are you on liquid or tanks. Sounds like liquid. I couldn't do the fill either. I can surly sling these tanks around. lol

The giving up of independence was the hardest thing EVER. I still have a hard time with it. It looks like I could just give up and let the house not bother me but I just go nuts at times.. That is the times gets a good house cleaning lesson. lol

Oh my Lord what would I do without him..

We also watched Dance last night and I cried to that was very powerful. Dealing with families is always so hard. The longer this goes on for me I keep thinking it will get better but they see the decline and I see it in their faces. just does what needs doing and tries not to show any emotion about the new me but I can see and feel it. Her hugs are a bit longer and I catch her just looking at me.. we talked about this one time and she said she had to burn my face in her brain because a picture is not me.. Oh yea, cry. cry cry.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

Peggy -

I'm doing pretty well. Been using the O2 for about 2 weeks now. Supposed to use it 24/7 on 2 liter, but haven't been using it for sleep - mostly cause I can't figure out how that works with someone (me) who tosses and turns. I do more stuff in the house now, but I need to use the portable to do anything outside the confines of the house and I am not proficient at filling it up. Mike (my darling husband) has been filling it for me, but I hate to ask him because, of course, I'm an independent cuss and hate to ask anybody to do anything. So gardening, or walking to the mailbox, taking the dogs for a short walk are no longer a spur-of-the moment thing, and I'm not reconciled to that yet.

Now you've got me going.....

On "So You Think You Can Dance" last night, two dancers performed a piece that was the choreographer's interpretation of his relationship with a friend who had recently been diagnosed with breast cancer. There was not a dry eye among the judges, and both my husband and I were crying too. I'm not sure which of the judges/performers said it, but a statement was made that -- on top of the difficulties brought on the the illness itself -- the "victim" bore the weight of shielding their loved ones from many of the problems and emotions they lived with on a daily basis. They try to put on a happy face so that those they love would not feel their pain. That reminded me of the plight many of us IPFers live with daily.

Anyway, there I go waxing philosophical.

I go back to Emory at the end of the month, and so I have that to look forward to. (smile)

I've been sorry to read that you are dealing with some crappy days. I hope and pray that you will have some truly wonderful ones to make up for it.

Hugs,

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 11:16:01 AMSubject: Re: 7/23/09 Missy Elisa and meBarb, how are you feeling and hows the breathing ??

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

<1.876692334>

Peggy: my hero!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, July 23, 2009 10:58:54 AMSubject: Re: 7/23/09 Missy Elisa and meBarb for ((((((((((((You)))))))))))) more in Oct...

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

<1.876515970>

Now I want a hug!

;-)

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 23, 2009 9:31:15 AMSubject: 7/23/09 Missy Elisa and me [1 Attachment]

Here is the only picture I have of us. I need a new camera. We were to busy viviting to think about pictures much. HoweverTT did take a fewon Elisas camera. She will post them when she gets home.Sure could use a little color in that head.. Dark glasses tell ya I'm incognito.. couldn't let everyone think that is me so round and fully packed...DSC00904.JPG

[Guest guest]

Hi Barb,I just recently started sleeping with 02 and experienced the same problems with the hose and cannula.  This may sound weird, but it works for me----I put my head in the loop of the hose so that the tightener gizmo is at the back of my head.  I pull it up high and tighten it there.  It stays put all night and I am a tosser and turner! Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

Lady Slipper Orchid

Now I want a hug!

 

;-)

B 

Barbara McD

IPF, Sept 08

Beautiful Western NC

 

 

 

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.  Galatians 6:9

 

From: Peggy <pac1773 (AT) cfl (DOT)  rr.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, July 23, 2009 9:31:15 AMSubject:  7/23/09 Missy Elisa and me [1 Attachment] 

Here is the only picture I have of us. I need a new camera. We were to busy viviting to think about pictures much. HoweverTT did take a fewon Elisas camera. She will post them when she gets home.Sure could use a little color in that head.. Dark glasses tell ya I'm incognito.. couldn't let everyone think that is me so round and fully packed...DSC00904.JPG

[Guest guest]

HEY HEY HEY Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Peggy: So THAT'S what did it...... ;-)B Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Thursday, July 23, 2009 6:12:05 PMSubject: Re: JackWOW Jack I can not imagine life without a drippy nose. Good for you. My house is only 5 years old but I do know I would love to have a DEEP cleaning done. Maybe I'll hit the lottery one of these days.. LOL these days cleaning ladies want huge amounts of money to get to play with our dirt.. My daughter is coming up for a week before long so It will get done..Congrats on your new dust free home. I have always wondered where all the dirt comes from right after I have dusted.. made me nuts..Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up.<1.879874806>I just moved from a large two-story house with full basement and a walk-up attic buiilt in 1915. I was the second owner because the builder's daughter lived in the house until her death at 96. That was when I bought it. The five years plus that I lived in the house I had long wracking coughing fits daily, sometimes up to four times, and a constantly running nose. This was both in summer and winter. Each left me with an explosive headacheand a weakened condition. I have lived in my apartment for nearly a month now and guess what? I rarely cough, and if I do it is shortand soft. My nose no longer runs. The apartment is in what used to be the city's high school, built around 1930. The exterior walls are about three feet thick of stone. Why have I suddenly stopped coughing andgave up my drippy nose? When the house was empty, one could see the masses of dust that were hidden by the furniture, rugs, etc.It was every where, including the narrow crevices cut into the wood work. It wasn't very visible to thecasual eye, and although we cleaned frequently it accumulated. I have no doubt that this accumulated dust was the culprit. From now on I will have my residence pro-fessional cleaned at least once a month and everything will be removed - books from the cases, paintings from the wall, etc., so no dust can accumulate. I hope my little story will help some of you. Jack79/IPF - UIP/dx06/05 MaineFrom: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. .comSent: Thursday, July 23, 2009 10:50:36 AMSubject: Re: Re: Prednisone and the other stinky med! when first diagnosed i coughed up lots of stuff eventually that stopped i used to thnk it was because of theprednisone since learningthat nac might be used in nebulizersi wonder if its the nac that got rid of the stuff that i used to cough up;Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09www.transplantfund. orgFrom: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Prednisone and the other stinky med!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 22, 2009, 9:00 PM Joyce,It's actually not a vitamin, it's an amino acid. (amino acids are the building blocks of protein) There has been some limited research that has shown some benefit to pulmonary fibrosis patients. There is controversy about whether the benefit is from the NAC or from the drugs that are most often given with it.One thing that is not controversial is this. NAC can help to liquify any phelgm that's hanging out in your lungs so that you can cough it up easily. It's also a great anti-oxidant and can help protect your body from the damage that can be done to to treatment with steroids or things like Imuran. Many of us have been told it's fine to take it. It might help and it can't hurt to try. Some people (like me) can't take it because it can be tough on the stomach, especially if you already have problems with reflux (as I do). If you take it it's probably a good idea to do so on a full stomach. BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, July 22, 2009 8:38:43 PMSubject: Re: Re: Prednisone and the other stinky med! What exactly is NAC? I was told to buy it by my new pulmodude but then Dr. Cosgrove from Jewish said I don't need it. I don't understand what it is..I know it is a vitamin but don't understand what it is supposed to do with our lungs. Joyce Rudy A birds Re: Prednisone and the other stinky med! CSher's point wasn't just price. The non-prescription pills are notcovered by insurance but are available reasonably and without the tasteof the liquid. You can also get pills formulated by a compoundingpharmacy. Some insurance does and some insurance doesn't cover that.> > > > >> > > > > Good morning,> > > > > I've been on 40mg prednisone for over a week now and didn'tmind> > how> > > > > it made me feel, like I was well again! But what are wesupposed> > to> > > > > do about sleep?> > > > >> > > > > Thanks,> > > > > C 53 IPF 5/09> > > > >> > > >> > >> >>

[Guest guest]

Pink

I do the same sometimes and generally will fill it completely even if

its still half full from the day before. Other times I may make a quick

morning trip without refilling and then fill it a bit later. I sometimes

go as high as three fills in a day, but normally just one or the

occasional two. I know in San I filled a lot trying to keep up

with the spouses, Mike, , and Eddie. I had to turn it up to walk

with them but it was just like being on the treadmill.

> >

> >

> >

> >

> >

> >

> > Now I want a hug!

> >

> > ;-)

> > B

> >

> >

> > Barbara McD

> > IPF, Sept 08

> > Beautiful Western NC

> >

> >

> >

> > Let us not become weary in doing good, for at the proper time we

will

> reap a harvest if we do not give up. Galatians 6:9

> >

> >

> >

> >

> >

> >

> >

> > From: Peggy pac1773 (AT) cfl (DOT) rr.com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thursday, July 23, 2009 9:31:15 AM

> > Subject: 7/23/09 Missy Elisa and me [1 Attachment]

> >

> >

> >

> > Here is the only picture I have of us. I need a new camera. We were

> > to busy viviting to think about pictures much. HoweverTT did take a

> few

> > on Elisas camera. She will post them when she gets home.

> >

> > Sure could use a little color in that head.. Dark glasses tell ya

I'm

> > incognito.. couldn't let everyone think that is me so round and

fully

> > packed...

> >

> >

> > DSC00904.JPG

> >

>

[Guest guest]

bruce i rarely check, but i think it is empty in the morningPink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09www.transplantfund.orgSubject: Re: BarbTo: Breathe-Support Date: Friday, July 24, 2009, 9:05 PM

Pink

I do the same sometimes and generally will fill it completely even if

its still half full from the day before. Other times I may make a quick

morning trip without refilling and then fill it a bit later. I sometimes

go as high as three fills in a day, but normally just one or the

occasional two. I know in San I filled a lot trying to keep up

with the spouses, Mike, , and Eddie. I had to turn it up to walk

with them but it was just like being on the treadmill.

> >

> >

> >

> >

> >

> >

> > Now I want a hug!

> >

> > ;-)

> > B

> >

> >

> > Barbara McD

> > IPF, Sept 08

> > Beautiful Western NC

> >

> >

> >

> > Let us not become weary in doing good, for at the proper time we

will

> reap a harvest if we do not give up. Galatians 6:9

> >

> >

> >

> >

> >

> >

> >

> > From: Peggy pac1773 (AT) cfl (DOT) rr.com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thursday, July 23, 2009 9:31:15 AM

> > Subject: 7/23/09 Missy Elisa and me [1 Attachment]

> >

> >

> >

> > Here is the only picture I have of us. I need a new camera. We were

> > to busy viviting to think about pictures much. HoweverTT did take a

> few

> > on Elisas camera. She will post them when she gets home.

> >

> > Sure could use a little color in that head.. Dark glasses tell ya

I'm

> > incognito.. couldn't let everyone think that is me so round and

fully

> > packed...

> >

> >

> > DSC00904.JPG

> >

>

[Guest guest]

Pink

As it does evaporate as much as half its contents in a day, if low at

the end of the day it will be empty in the morning. I often fill mine

late in the day for one reason or another so still have quite a bit in

the morning.

>

> > >

>

> > >

>

> > >

>

> > >

>

> > >

>

> > >

>

> > > Now I want a hug!

>

> > >

>

> > > ;-)

>

> > > B

>

> > >

>

> > >

>

> > > Barbara McD

>

> > > IPF, Sept 08

>

> > > Beautiful Western NC

>

> > >

>

> > >

>

> > >

>

> > > Let us not become weary in doing good, for at the proper time we

>

> will

>

> > reap a harvest if we do not give up. Galatians 6:9

>

> > >

>

> > >

>

> > >

>

> > >

>

> > >

>

> > >

>

> > >

>

> > > From: Peggy pac1773 (AT) cfl (DOT) rr.com>

>

> > > To: Breathe-Support@ yahoogroups. com

>

> > > Sent: Thursday, July 23, 2009 9:31:15 AM

>

> > > Subject: 7/23/09 Missy Elisa and me [1

Attachment]

>

> > >

>

> > >

>

> > >

>

> > > Here is the only picture I have of us. I need a new camera. We

were

>

> > > to busy viviting to think about pictures much. HoweverTT did take

a

>

> > few

>

> > > on Elisas camera. She will post them when she gets home.

>

> > >

>

> > > Sure could use a little color in that head.. Dark glasses tell ya

>

> I'm

>

> > > incognito.. couldn't let everyone think that is me so round and

>

> fully

>

> > > packed...

>

> > >

>

> > >

>

> > > DSC00904.JPG

>

> > >

>

> >

>