Re: Re: Chatt and other stuff

[Guest guest]

Hi Ellen, I have to take my tank with me to the bathroom. It is only 6 steps to the toilet, I use 12 to 15L ... can't do it without the drop. When I get back to the bed I still have a HARD time breathing,... crazy. My heart beats so hard. I am using 6L sitting. It is just unbelievable to me how quickly this monster shows it's ugly head. I am sorry you are going through this too. I will think of you when I try my trips to the LOO. Remember you are not alone. Keep fightingand I'll be in your corner. I am so thankful for my husband and his care.. I just can not imaging going through this without loving care. I am such a baby. I have always questioned the morphine in end stages... still do. not being able to get my breath is more scary than painful.. I think..Best of life to you. Take Care and breathe as easy as you can. Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Peggy, Sorry to hear you are struggling so. I am on 10 L and I understand what you mean by being this dependent just to get to the bathroom. my saturation gets down to 70 sometimes and I think, ", this is the big one!!" But I keep on trucking......I have to drag a tank with me (along with my tubing)using both so I can recoup. I did ask my Dr. what to expect from here on out and he answered so elequently. He works with hospice and they sound so wonderful. I am taking chemo so hospice can't get involved until I am finished with that. Please let me know how it goes with your motor chair, we are thinking I need one of those for use in the house. ellen > > So group here is the thing.. my saturation is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that.. > has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without > needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now) > > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will. > > I think I am just going to keep myself in the electric lounger as > much as I can. should get me ready to go.. I would leave now but we > would be > all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh. > > Please keep us in your prayers. is struggling almost as I am. > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > "I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly." > > >  >

[Guest guest]

Peggy and Ellen too,

I'm so sorry you two are going through this. I HATE this disease. HATE HATE HATE. Please know that we love you both and are praying for you.

Peggy, just as an aside....morphine in late stages of this lung disease is not for pain. It is specifically for shortness of breath. In tiny doses it can slow the breathing somewhat and take away that horrible scary 'can't catch my breath feeling'. It's intended solely to make you more comfortable and has not anything at all to do with pain relief.

For pain a person gets much larger doses which also makes one very sleepy. In the tiny doses a lung patient typically gets you don't get sedation usually just relaxation.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 26, 2009 6:18:04 PMSubject: Re: Re: Chatt and other stuffHi Ellen, I have to take my tank with me to the bathroom. It is only 6 steps to the toilet, I use 12 to 15L ... can't do it without the drop.

When I get back to the bed I still have a HARD time breathing,... crazy. My heart beats so hard. I am using 6L sitting. It is just unbelievable to me how quickly this monster shows it's ugly head.

I am sorry you are going through this too. I will think of you when I try my trips to the LOO. Remember you are not alone. Keep fighting

and I'll be in your corner.

I am so thankful for my husband and his care.. I just can not imaging going through this without loving care. I am such a baby.

I have always questioned the morphine in end stages... still do. not being able to get my breath is more scary than painful.. I think..

Best of life to you. Take Care and breathe as easy as you can.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Peggy,Sorry to hear you are struggling so. I am on 10 L and I understand what you mean by being this dependent just to get to the bathroom. my saturation gets down to 70 sometimes and I think, ", this is the big one!!" But I keep on trucking.... ..I have to drag a tank with me (along with my tubing)using both so I can recoup. I did ask my Dr. what to expect from here on out and he answered so elequently. He works with hospice and they sound so wonderful. I am taking chemo so hospice can't get involved until I am finished with that. Please let me know how it goes with your motor chair, we are thinking I need one of those for use in the house. ellen>> So group here is the thing.. my saturation

is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that..> has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without> needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now)> > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will.> > I think I am just going to keep myself in the electric

lounger as > much as I can. should get me ready to go.. I would leave now but we > would be> all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh.> > Please keep us in your prayers. is struggling almost as I am.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > >

[Guest guest]

MB....when I tool morphine I found it was the best med that worked for me. As you say relaxation and pain control. Then I started getting the damn hives!

Is there another med that can be used if one is allergic to morphine?

I'm going to the pain clinic on Wed and telling them they just have to do something about the pain! The only time I can find comfort is if I'm lying down...I will ask them this same question too.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: Re: Chatt and other stuffHi Ellen, I have to take my tank with me to the bathroom. It is only 6 steps to the toilet, I use 12 to 15L ... can't do it without the drop. When I get back to the bed I still have a HARD time breathing,... crazy. My heart beats so hard. I am using 6L sitting. It is just unbelievable to me how quickly this monster shows it's ugly head.

I am sorry you are going through this too. I will think of you when I try my trips to the LOO. Remember you are not alone. Keep fighting

and I'll be in your corner.

I am so thankful for my husband and his care.. I just can not imaging going through this without loving care. I am such a baby.

I have always questioned the morphine in end stages... still do. not being able to get my breath is more scary than painful.. I think..

Best of life to you. Take Care and breathe as easy as you can.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Peggy,Sorry to hear you are struggling so. I am on 10 L and I understand what you mean by being this dependent just to get to the bathroom. my saturation gets down to 70 sometimes and I think, ", this is the big one!!" But I keep on trucking.... ..I have to drag a tank with me (along with my tubing)using both so I can recoup. I did ask my Dr. what to expect from here on out and he answered so elequently. He works with hospice and they sound so wonderful. I am taking chemo so hospice can't get involved until I am finished with that. Please let me know how it goes with your motor chair, we are thinking I need one of those for use in the house. ellen>> So group here is the thing.. my saturation is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that..> has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without> needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now)> > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will.> > I think I am just going to keep myself in the electric lounger as > much as I can. should get me ready to go.. I would leave now but we > would be> all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh.> > Please keep us in your prayers. is struggling almost as I am.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > >

[Guest guest]

Thanks MB, That makes since. I am really glad to hear there isn't pain on the way.. The smothering is enough to deal with. I am hoping everyone in Chattanooga doesn't freak out when they hear this cough. I hate it but what ya gonna do..I hate this disease beyond belief. Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Peggy and Ellen too,I'm so sorry you two are going through this. I HATE this disease. HATE HATE HATE. Please know that we love you both and are praying for you. Peggy, just as an aside....morphine in late stages of this lung disease is not for pain. It is specifically for shortness of breath. In tiny doses it can slow the breathing somewhat and take away that horrible scary 'can't catch my breath feeling'. It's intended solely to make you more comfortable and has not anything at all to do with pain relief. For pain a person gets much larger doses which also makes one very sleepy. In the tiny doses a lung patient typically gets you don't get sedation usually just relaxation. BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, October 26, 2009 6:18:04 PMSubject: Re: Re: Chatt and other stuffHi Ellen, I have to take my tank with me to the bathroom. It is only 6 steps to the toilet, I use 12 to 15L ... can't do it without the drop. When I get back to the bed I still have a HARD time breathing,... crazy. My heart beats so hard. I am using 6L sitting. It is just unbelievable to me how quickly this monster shows it's ugly head. I am sorry you are going through this too. I will think of you when I try my trips to the LOO. Remember you are not alone. Keep fightingand I'll be in your corner. I am so thankful for my husband and his care.. I just can not imaging going through this without loving care. I am such a baby. I have always questioned the morphine in end stages... still do. not being able to get my breath is more scary than painful.. I think..Best of life to you. Take Care and breathe as easy as you can.Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." <1.1930539070>Peggy,Sorry to hear you are struggling so. I am on 10 L and I understand what you mean by being this dependent just to get to the bathroom. my saturation gets down to 70 sometimes and I think, ", this is the big one!!" But I keep on trucking.... ..I have to drag a tank with me (along with my tubing)using both so I can recoup. I did ask my Dr. what to expect from here on out and he answered so elequently. He works with hospice and they sound so wonderful. I am taking chemo so hospice can't get involved until I am finished with that. Please let me know how it goes with your motor chair, we are thinking I need one of those for use in the house. ellen>> So group here is the thing.. my saturation is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that..> has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without> needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now)> > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will.> > I think I am just going to keep myself in the electric lounger as > much as I can. should get me ready to go.. I would leave now but we > would be> all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh.> > Please keep us in your prayers. is struggling almost as I am.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > >

[Guest guest]

Dyane... yes, I've taken Percocet and I'm on Hydroxyzine as well when on pain pills. Helps w/itching and also side effect of "calming"...good side effect for a change.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: Chatt and other stuff

Mama Sher,Before I went on the prednisone I was taking Percoset for pain and yes when you first start if you take too much you will itch, but after a few days that will go away. Have patience and benadryl! Dyane phoenix ipf 02> >> > So group here is the thing.. my saturation is dropping with every > > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > > goes to around 85 -86.. How crazy is that..> > has called to get me a jazzy or some other chair thing.. (he > > just trusts me WAYYYY to much) I will be glad to be able to move without> > needing to sit every ten feet.. this is just such so humbling to be > > dependent to this degree. I do thank God I have my wonderful > > husband. ( who is fixing me sharp cheese, crackers and an apple > > right now)> > > > After our trip we are going to have the hospice people come talk to > > us so we will better understand their process. For the life of me I > > don't know why some need morphine. I guess it helps relax your chest > > mussels to make breathing easier. Odd I have not ask my Dr. about > > that.... I will.> > > > I think I am just going to keep myself in the electric lounger as > > much as I can. should get me ready to go.. I would leave now but we > > would be> > all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh.> > > > Please keep us in your prayers. is struggling almost as I am.> > > > > > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> > > > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> > > > > > > >>

[Guest guest]

Ellen...so glad something I wrote warmed your heart. We have a lot of heart warmers around here.

How are you doing?

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: Chatt and other stuff

Thank you MamaSher, When I first wrote the group concerning my condition I said I didn't want anyone to feel sorry for me and blah, blah, blah. I was raised not to cry, and that there is always someone worse off than me. That is true, but your words of concern warms my heart, I found out I need sympathy? understanding? something more than what I initially thought I wanted.

Thank you

ellen

[Guest guest]

My heart also goes out to both of you. I will pray that all goes well. I am sad to hear of your distress. JoyceRudy AZ birds

Re: Chatt and other stuff

Peggy,Sorry to hear you are struggling so. I am on 10 L and I understand what you mean by being this dependent just to get to the bathroom. my saturation gets down to 70 sometimes and I think, ", this is the big one!!" But I keep on trucking......I have to drag a tank with me (along with my tubing)using both so I can recoup. I did ask my Dr. what to expect from here on out and he answered so elequently. He works with hospice and they sound so wonderful. I am taking chemo so hospice can't get involved until I am finished with that. Please let me know how it goes with your motor chair, we are thinking I need one of those for use in the house. ellen>> So group here is the thing.. my saturation is dropping with every > movement.. so I am now on 9 to 9 1/2 L to go to the bathroom and it > goes to around 85 -86.. How crazy is that..> has called to get me a jazzy or some other chair thing.. (he > just trusts me WAYYYY to much) I will be glad to be able to move without> needing to sit every ten feet.. this is just such so humbling to be > dependent to this degree. I do thank God I have my wonderful > husband. ( who is fixing me sharp cheese, crackers and an apple > right now)> > After our trip we are going to have the hospice people come talk to > us so we will better understand their process. For the life of me I > don't know why some need morphine. I guess it helps relax your chest > mussels to make breathing easier. Odd I have not ask my Dr. about > that.... I will.> > I think I am just going to keep myself in the electric lounger as > much as I can. should get me ready to go.. I would leave now but we > would be> all alone.. we'll wait 7 more days yeahhhhhhhhhhhhh.> > Please keep us in your prayers. is struggling almost as I am.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > >