Re: Re: scared

[Guest guest]

Thank you, Pink. It was so scary. I thought I would die. I felt like a fool! Here these people older then I am are just skipping up the incline and the stairs and I was stopped in my tracks. And, as Beth says I exercise regularly. It just stopped me dead in my tracks. I will never do that again. I know on the treadmill my speed is up to 1.8 and I can do 5 minutes level and last week for the hell of it I put it on a 1% incline and the staff had to come rescue me...I couldn't do the incline...and your daughter has 4 flights of stairs! Lord! I would never be able to do it. You must really love your grandson! And, my husband was Jewish so I know what a Mitzvah(?) is! Ahahahahah I learned some fabulous recipes from my mother in law and I just made some spinach borscht! I was given a bunch of spinach and so made it. Love the stuff! You brought up kugal and it made me smile. I used to make it but sure don'tremember the recipe any more. Lox and bagel! I so love that! and, smoked white fish and little dill tomato's...love it! Joyce Rudy AZ birds

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org--- On Sat, 11/14/09, Stefani <sfshaner (AT) gmail (DOT) com> wrote:

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support Date: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds>

[Guest guest]

Stefani- I have a wagon I use to bring in my groceries from the car but it is still hard. I bring them up to my front door with the wagon and then put the packages in the entryway and that about does it for me. I have to stop and rest and then I can begin to put things away. What i never can understand is why I get so fatigued. My stats are in the 90's but I get so fatigued! Beth and others have tried to explain it to me and I try to explain it to my friends and I don't really understand so don't do a good job. The respitory therapist I saw said I have to move slower...I can't really grasp that either. I already move so slowly my friends hate walkign with me but she said I have to move even slower.and my stats are in the 90's. it baffles me so much! Joyce Rudy AZ birds

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org--- On Sat, 11/14/09, Stefani <sfshaner (AT) gmail (DOT) com> wrote:

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support Date: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds>

[Guest guest]

I take Provigil. A sort of stimulent and I am telling you if I didn't have that to take twice a day I would not be able to do what I am doing. I would become so fatigued so fast that I would probably take to my bed. Or, end up sitting in a chair all day. i have a lot of fatigue but don't know if it is because of my lungs or not. I have to admit I don't understand this illness at all. My mind is sharp and it tells me I want to do this this and that but my body just can't do it. i don't understand at all...so I just try to forgive myself and carry on. What do your doctors say the fatigue is from? JoyceRudy AZ birds

I find your comment on fatigue interesing because doctors say I have more fatigue than the stage of PF.

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support Sent: Sat, November 14, 2009 7:51:41 PMSubject: Re: Re: scared

Stefani- I have a wagon I use to bring in my groceries from the car but it is still hard. I bring them up to my front door with the wagon and then put the packages in the entryway and that about does it for me. I have to stop and rest and then I can begin to put things away. What i never can understand is why I get so fatigued. My stats are in the 90's but I get so fatigued! Beth and others have tried to explain it to me and I try to explain it to my friends and I don't really understand so don't do a good job. The respitory therapist I saw said I have to move slower...I can't really grasp that either. I already move so slowly my friends hate walkign with me but she said I have to move even slower.and my stats are in the 90's. it baffles me so much! Joyce Rudy AZ birds

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds>

[Guest guest]

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: scaredTo: Breathe-Support Date: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish

fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost

15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a

second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help

retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds>

[Guest guest]

Joyce,

All those older people "just skipping up the incline and the stairs" don't have lung disease!! It's difficult but the thing you need to do is adjust your expectations of what you can do and how you can do it.

Stop comparing yourself to others. You are Joyce Rudy with your own unique strengths and limitations. Respect them and things will get better, I promise.

The person who told you that you need to move more slowly is absolutely correct. You can accomplish much of what you want, just not as fast as you are used to!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, November 14, 2009 8:45:57 PMSubject: Re: Re: scared

Thank you, Pink. It was so scary. I thought I would die. I felt like a fool! Here these people older then I am are just skipping up the incline and the stairs and I was stopped in my tracks. And, as Beth says I exercise regularly. It just stopped me dead in my tracks. I will never do that again. I know on the treadmill my speed is up to 1.8 and I can do 5 minutes level and last week for the hell of it I put it on a 1% incline and the staff had to come rescue me...I couldn't do the incline...and your daughter has 4 flights of stairs! Lord! I would never be able to do it. You must really love your grandson! And, my husband was Jewish so I know what a Mitzvah(?) is! Ahahahahah I learned some fabulous recipes from my mother in law and I just made some spinach borscht! I was given a bunch of spinach and so made it. Love the stuff! You brought up kugal and it made me smile. I used to make it but sure don'tremember the recipe any more. Lox and bagel!

I so love that! and, smoked white fish and little dill tomato's...love it! Joyce Rudy AZ birds

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish

fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to

do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends

who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up

the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ

birds>

[Guest guest]

I find your comment on fatigue interesing because doctors say I have more fatigue than the stage of PF.

To: Breathe-Support Sent: Sat, November 14, 2009 7:51:41 PMSubject: Re: Re: scared

Stefani- I have a wagon I use to bring in my groceries from the car but it is still hard. I bring them up to my front door with the wagon and then put the packages in the entryway and that about does it for me. I have to stop and rest and then I can begin to put things away. What i never can understand is why I get so fatigued. My stats are in the 90's but I get so fatigued! Beth and others have tried to explain it to me and I try to explain it to my friends and I don't really understand so don't do a good job. The respitory therapist I saw said I have to move slower...I can't really grasp that either. I already move so slowly my friends hate walkign with me but she said I have to move even slower.and my stats are in the 90's. it baffles me so much! Joyce Rudy AZ birds

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish

fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to

do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends

who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up

the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ

birds>

[Guest guest]

Joyce,

I'm going to ask a question. You mentioned Provigil and I'm curious. It is prescribed for excessive sleepiness....have you been on it a long time? Is this something new? Just wondering if you've had a sleep study done to make sure you're getting the best sleep you can at night.

When you have a diagnosis like we do there is a significant amount of fatigue that goes along with it. Literally every corner of our lives is affected. It takes a long time to come to grips with all the changes that we must make and it's HARD. Be patient with yourself. You've come so far and you impress me so much. I wish we lived closer so I could come for coffee and we could just talk it all out. But for now just put yourself first so that you stay healthy enough to give of yourself to those you care about!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, November 14, 2009 9:53:12 PMSubject: Re: Re: scared

I take Provigil. A sort of stimulent and I am telling you if I didn't have that to take twice a day I would not be able to do what I am doing. I would become so fatigued so fast that I would probably take to my bed. Or, end up sitting in a chair all day. i have a lot of fatigue but don't know if it is because of my lungs or not. I have to admit I don't understand this illness at all. My mind is sharp and it tells me I want to do this this and that but my body just can't do it. i don't understand at all...so I just try to forgive myself and carry on. What do your doctors say the fatigue is from? JoyceRudy AZ birds

In a message dated 11/14/2009 7:37:51 P.M. US Mountain Standard Time, gale.more (AT) yahoo (DOT) com writes:

I find your comment on fatigue interesing because doctors say I have more fatigue than the stage of PF.

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 14, 2009 7:51:41 PMSubject: Re: Re: scared

Stefani- I have a wagon I use to bring in my groceries from the car but it is still hard. I bring them up to my front door with the wagon and then put the packages in the entryway and that about does it for me. I have to stop and rest and then I can begin to put things away. What i never can understand is why I get so fatigued. My stats are in the 90's but I get so fatigued! Beth and others have tried to explain it to me and I try to explain it to my friends and I don't really understand so don't do a good job. The respitory therapist I saw said I have to move slower...I can't really grasp that either. I already move so slowly my friends hate walkign with me but she said I have to move even slower.and my stats are in the 90's. it baffles me so much! Joyce Rudy AZ birds

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish

fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to

do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends

who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up

the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ

birds>

[Guest guest]

Joyce Rudy, You've managed to make

me hungry  for lox and bagel at midnight!!!

 I have the kugel recipe if you want it!  My last name is Zion ( means 

Israel in Hebrew)

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara 

    

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

BlueLiddy@... wrote:

 

Thank you, Pink. It was so scary. I thought I would die. I felt

like a fool! Here these people older then I am are just skipping up the

incline and the stairs and I was stopped in my tracks. And, as

Beth says I exercise regularly. It just stopped me dead in my tracks. I

will never do that again. I know on the treadmill my speed is up to 1.8

and I can do 5 minutes level and last week for the hell of it I put it

on a 1% incline and the staff had to come rescue me...I couldn't do the

incline...and your daughter has 4 flights of stairs! Lord! I would

never be able to do it. You must really love your grandson! And, my

husband was Jewish so I know what a Mitzvah(?) is! Ahahahahah I learned

some fabulous recipes from my mother in law and I just made some

spinach borscht! I was given a bunch of spinach and so made it. Love

the stuff! You brought up kugal and it made me smile. I used to make it

but sure don'tremember the recipe any more. Lox and bagel! I so love

that! and, smoked white fish and little dill tomato's...love it! Joyce

Rudy AZ birds

 

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard

Time, pinkrockybeach (AT) yahoo (DOT) com writes:

 

i was just describing the situation to Jerry

-- incline, 2 flights of stairs, carrying packages,  -- very thin Jerry

said he would have trouble too

Pink Joyce R (IPF 3/06)  IFA 5/09

Pennsylvania

Donate Life

Listed 1/09

Inactive 4/09

www.transplantfund.org

From: Stefani <sfshaner (AT) gmail (DOT) com>

Subject: Re: scared

To: Breathe-Support

Date: Saturday, November 14, 2009, 8:01 PM

 

Hey, I have been there!! I spent 3 years after one

pulmo-dude said I had "an interstitial disease" and left it at that. I

wasn't on oxygen, but developed coping strategies for my perceived

shortness of breath. Then I went to NJ in Denver and learned all kinds

of stuff, and got an oximeter as members of this board have

recommended. I have since conpleted pulmonary rehab and have a much

better idea what I can and cannot do. I have also learned the breathing

techniques and coping strategies to best handle "road blocks". I have a

light weight luggage carrier I keep in my car for transporting anything

and everything on wheels. I have a portable tank with the "demand

sensor" delivery system. I have a handicap parking banner for when I

need it. I do not always use it, it is just nice to have for those

times I need it. I don't hesitate to stop and catch my breath if my

sats drop below 88-90. I monitor constantly as I have not yet learned

to distinguish fatigue from low oxygen. Hang in there... you will get

the hang of it. I think it is cool that you are keeping active with

your baked goods for a good cause... And,... I am tipping the scales at

230 (forever trying to lose weight, but always trying to eat smart and

healthy). Remember, you can be fit and fat. I know skinny-Minnies that

are not fit at all. They also have lousy eating habits. Don't let it

scare you... conquer your fears with knowledge!!

Stefani 61 year old Utahn

ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

>

> Joyce,

> I'll lay odds it's not your weight. I think it's your lungs and

has little to do with fat. You've lost 15 pounds and you're exercising

regularly. You are taking care of yourself.

>

> You didn't mention whether you checked your sat...what was it? Do

you know?  Did you try turning your oxygen up a bit?  It's

frustrating when you set your self a task and then can't complete it

because you can't breathe. All of us have had that experience and

understand how you are feeling. It sounds as though you were trying to

accomplish too much. Carrying baked goods, an incline and two flights

of stairs, it would definitely be way too much for me. As hard as it is

to adjust your thinking, you've got to do it. You haven't found your

new normal yet. You will. You bumped up against a limitation today.

That's likely all it is. You will learn to be more realistic when it

comes to this kind of stuff but it takes time.

>

> As to what your friends are saying...are these the same friends

who were against you seeking a second opinion at NJH? Please, please,

please stop listening to people who don't understand your lung disease.

>

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

> ____________ _________ _________ __

> From: Joyce <BlueLiddy@. ..>

> To: Breathe-Support@

yahoogroups. com

> Sent: Sat, November 14, 2009 5:29:13 PM

> Subject: scared

>

>  

> I went to deliver some baked goods to a bake sale for one of my

groups and had to park in the lower lot. Had to walk up a 2% incline

and 2 flights of stairs and couldn't make it up the second flight

without assistance. I asked for help retrieving the other baked goods

and was given it. I knew I couldn't do it again. It scared me. I don't

undestand why I couldn't do it. My 02 was on constant and I still

co8uldn't make it. I left feeling scared and frustrated and embarrassed

and blue...I think this illness is going to kill me. On my last visit

to NJH what they didn't rerun was the test where you ride a bike on an

incline...my friend said it is becaus I'm fat and my diaphram can't

expand but that is bull shit. Everyone says it is because I amfat. But

I have lost 15 pounds. there were fatter people then me going in and

out that place. Every one blames it onmy beign fat. I amso sick of

that! That is the reason i didn't go to the doctor sooner because I wasw

> fat. Everyone says it is because i am fat. Screw them! Anyway, I

think I am going todie ofbeing fat....I think thefat is going tokill

me.Joyce rudy AZ birds

>

[Guest guest]

Beth,

Thank you so much for the compliment. I would love to have a cup of coffee with you and talk to you. I would make a delicious plum cake and we could have some with our coffee.

I have been on Provigil about 2 or 3 years...I can't remember exactly. And, yes, I am SUPPOSED to be using my CPAP. In fact it was the sleep study that they discovered I need oxygen....My 02 went down to 64 at night and they said I barely ever dreamed. But I never use it. I HATE it! I just HATE it. In fact I left mine at the 02 place and they have called and asked me to pick it up. I have left it there for the last month. It's not the mask. they gave me a mask that is perfect but I just can't stand the CPAP itself...I always wake up and rip th e mask off because I am either drowning, or choking to death. I just hate it and talk about not getting a good nights sleep! Besides the 02 for it is 2 mlp and I need more then that at night..but Beth even though they told me I am a prime candidate to die in my sleep I can't wear the thing. It's been several years now and I just can't do it. Joyce Rudy AZ Birds

Joyce,

I'm going to ask a question. You mentioned Provigil and I'm curious. It is prescribed for excessive sleepiness....have you been on it a long time? Is this something new? Just wondering if you've had a sleep study done to make sure you're getting the best sleep you can at night.

When you have a diagnosis like we do there is a significant amount of fatigue that goes along with it. Literally every corner of our lives is affected. It takes a long time to come to grips with all the changes that we must make and it's HARD. Be patient with yourself. You've come so far and you impress me so much. I wish we lived closer so I could come for coffee and we could just talk it all out. But for now just put yourself first so that you stay healthy enough to give of yourself to those you care about!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support Sent: Sat, November 14, 2009 9:53:12 PMSubject: Re: Re: scared

I take Provigil. A sort of stimulent and I am telling you if I didn't have that to take twice a day I would not be able to do what I am doing. I would become so fatigued so fast that I would probably take to my bed. Or, end up sitting in a chair all day. i have a lot of fatigue but don't know if it is because of my lungs or not. I have to admit I don't understand this illness at all. My mind is sharp and it tells me I want to do this this and that but my body just can't do it. i don't understand at all...so I just try to forgive myself and carry on. What do your doctors say the fatigue is from? JoyceRudy AZ birds

In a message dated 11/14/2009 7:37:51 P.M. US Mountain Standard Time, gale.more (AT) yahoo (DOT) com writes:

I find your comment on fatigue interesing because doctors say I have more fatigue than the stage of PF.

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 14, 2009 7:51:41 PMSubject: Re: Re: scared

Stefani- I have a wagon I use to bring in my groceries from the car but it is still hard. I bring them up to my front door with the wagon and then put the packages in the entryway and that about does it for me. I have to stop and rest and then I can begin to put things away. What i never can understand is why I get so fatigued. My stats are in the 90's but I get so fatigued! Beth and others have tried to explain it to me and I try to explain it to my friends and I don't really understand so don't do a good job. The respitory therapist I saw said I have to move slower...I can't really grasp that either. I already move so slowly my friends hate walkign with me but she said I have to move even slower.and my stats are in the 90's. it baffles me so much! Joyce Rudy AZ birds

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds>

[Guest guest]

Oh, would love your kugel recipe!!! I didn't know Zion meant Isreal...how interesting. I made myself hungry for lox and bagel. I put cream cheese and onion and tomato on it and most others I have met only use cream cheese or cream cheese and onion. Ever heard of that? Joyce Rudy AZ birds

Joyce Rudy, You've managed to make me hungry for lox and bagel at midnight!!! I have the kugel recipe if you want it! My last name is Zion ( means Israel in Hebrew)

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

BlueLiddy (AT) aol (DOT) com wrote:

Thank you, Pink. It was so scary. I thought I would die. I felt like a fool! Here these people older then I am are just skipping up the incline and the stairs and I was stopped in my tracks. And, as Beth says I exercise regularly. It just stopped me dead in my tracks. I will never do that again. I know on the treadmill my speed is up to 1.8 and I can do 5 minutes level and last week for the hell of it I put it on a 1% incline and the staff had to come rescue me...I couldn't do the incline...and your daughter has 4 flights of stairs! Lord! I would never be able to do it. You must really love your grandson! And, my husband was Jewish so I know what a Mitzvah(?) is! Ahahahahah I learned some fabulous recipes from my mother in law and I just made some spinach borscht! I was given a bunch of spinach and so made it. Love the stuff! You brought up kugal and it made me smile. I used to make it but sure don'tremember the recipe any more. Lox and bagel! I so love that! and, smoked white fish and little dill tomato's...love it! Joyce Rudy AZ birds

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard Time, pinkrockybeach (AT) yahoo (DOT) com writes:

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org--- On Sat, 11/14/09, Stefani <sfshaner (AT) gmail (DOT) com> wrote:

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support Date: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds>

[Guest guest]

That's true..but it is so hard to not be hurt from remarks about your weight. I am a Vegan...but mostly just a vegetarian and I don't watch my carbs and it works..my blood sugars are fine...I eat a tremendous amount of carbs a day and if I wouldstoop eating dairy I would probably lose weight very fast...I just can't get myself to do it and every once in a while i can't stand it and buy a pizza..no meat but a pizza! Joyce rudy AZ birds

Yep. Z nailed it. Our disease would exist with or without our fluffiness. Odd, since I stopped stressing over it so much I have lost 29 pounds. Slowly. Very slowly though. Plus I was fortunate enough that BCBS paid for me to see a diabetes counselor who told me where I needed to be with carbs to lose weight.But I am very happy in my fluffiness and encourage you to make peace with your body. I mean really. None of us are getting any younger or less fluffy or prettier or turning into Barbie but what we can do is be positive and strong in spirit. And rock on. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > >> > Beth- I didn't know what my stats were. Though I had my oximeter > > with me I had my hands full of pumpkin pie which I made on Friday. > > Friday I made 2 pumpkin pies,24 brownies with frosting and 2 quick > > breads. It was quite tiring. Oh also roasted a turkey for my dogs on > > Friday and by the end I could barely eat. Which reminds me...I > > cleaned the oven the day before and the fumes about wiped me out! Talk > > about bad for your lungs. I thought I was going to die! I took my dogs > > and barricaded myself in the bedroom and thought it was freezing I > > opened ever window and door in the house. I had never used a self > > cleaning oven before and my God it is horrible! How do you do it???? > > But, today I couldn't look to see my stats. I had my 02 on continuous > > 4lpm and never thought I could increase it. I thought when a doctor > > told you what your lpm are you had to stick to that. I just have to > > tell you on the second set of stairs I thought I would die...I had to > > be helped up...Since I wrote this post I laid down and slept. I slept > > and slept and slept. I have had no appetite but know I must eat > > something because of my diabetes meds. That trip just about destroyed > > me! Joyce Rudy AZ birds.> > > > > >> > > >> > Joyce,> > I'll lay odds it's not your weight. I think it's your lungs and> > has little to do with fat. You've lost 15 pounds and you're> > exercising regularly. You are taking care of yourself.> > > > You didn't mention whether you checked your sat...what was it? Do> > you know? Did you try turning your oxygen up a bit? It's> > frustrating when you set your self a task and then can't complete> > it because you can't breathe. All of us have had that experience> > and understand how you are feeling. It sounds as though you were> > trying to accomplish too much. Carrying baked goods, an incline> > and two flights of stairs, it would definitely be way too much for> > me. As hard as it is to adjust your thinking, you've got to do it.> > You haven't found your new normal yet. You will. You bumped up> > against a limitation today. That's likely all it is. You will> > learn to be more realistic when it comes to this kind of stuff but> > it takes time.> > > > As to what your friends are saying...are these the same friends> > who were against you seeking a second opinion at NJH? Please,> > please, please stop listening to people who don't understand your> > lung disease.> > > > > >> > /* Beth*/> >> > */Moderator/*> >> > */Fibrotic NSIP 06/06 Dermatomyositis 11/08/*> >> > *//* > >> > > >> >> >> > ----------------------------------------------------------> > *From:* Joyce > > *To:* Breathe-Support > > *Sent:* Sat, November 14, 2009 5:29:13 PM> > *Subject:* scared> >> > > >> > I went to deliver some baked goods to a bake sale for one of my> > groups and had to park in the lower lot. Had to walk up a 2%> > incline and 2 flights of stairs and couldn't make it up the second> > flight without assistance. I asked for help retrieving the other> > baked goods and was given it. I knew I couldn't do it again. It> > scared me. I don't undestand why I couldn't do it. My 02 was on> > constant and I still co8uldn't make it. I left feeling scared and> > frustrated and embarrassed and blue...I think this illness is> > going to kill me. On my last visit to NJH what they didn't rerun> > was the test where you ride a bike on an incline...my friend said> > it is becaus I'm fat and my diaphram can't expand but that is bull> > shit. Everyone says it is because I amfat. But I have lost 15> > pounds. there were fatter people then me going in and out that> > place. Every one blames it onmy beign fat. I amso sick of that!> > That is the reason i didn't go to the doctor sooner because I wasw> > fat. Everyone says it is because i am fat. Screw them! Anyway, I> > think I am going todie ofbeing fat....I think thefat is going> > tokill me.Joyce rudy AZ birds> >> >>

[Guest guest]

I sure wish I could tell people that and have them believe me. I try and try to lose weight but it takes so long for me to lose anything it is very depressing...and you were right when you say I am fit. I AM fit! I exercise 50 minutes a day 5 days a week and on the weekends I am doing house work and tending to my small garden in front of my door...so I am not just eating and lying about.Joyce rudy AZ Birds

It's very easy for people to blame our weight for our breathing difficulties. Even doctors are sometimes guilty of this. Granted losing weight can make things somewhat easier and there's no doubt it lessens the burden on our hearts but the bottom line is our lung disease isn't going away whether we weight 275 pounds or 120 pounds.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: lsmith7892006 <lbsmith789 (AT) sbcglobal (DOT) net>To: Breathe-Support Sent: Sun, November 15, 2009 12:13:27 AMSubject: Re: scared

Yep. Z nailed it. Our disease would exist with or without our fluffiness. Odd, since I stopped stressing over it so much I have lost 29 pounds. Slowly. Very slowly though. Plus I was fortunate enough that BCBS paid for me to see a diabetes counselor who told me where I needed to be with carbs to lose weight.But I am very happy in my fluffiness and encourage you to make peace with your body. I mean really. None of us are getting any younger or less fluffy or prettier or turning into Barbie but what we can do is be positive and strong in spirit. And rock on. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > >> > Beth- I didn't know what my stats were. Though I had my oximeter > > with me I had my hands full of pumpkin pie which I made on Friday. > > Friday I made 2 pumpkin pies,24 brownies with frosting and 2 quick > > breads. It was quite tiring. Oh also roasted a turkey for my dogs on > > Friday and by the end I could barely eat. Which reminds me...I > > cleaned the oven the day before and the fumes about wiped me out! Talk > > about bad for your lungs. I thought I was going to die! I took my dogs > > and barricaded myself in the bedroom and thought it was freezing I > > opened ever window and door in the house. I had never used a self > > cleaning oven before and my God it is horrible! How do you do it???? > > But, today I couldn't look to see my stats. I had my 02 on continuous > > 4lpm and never thought I could increase it. I thought when a doctor > > told you what your lpm are you had to stick to that. I just have to > > tell you on the second set of stairs I thought I would die...I had to > > be helped up...Since I wrote this post I laid down and slept. I slept > > and slept and slept. I have had no appetite but know I must eat > > something because of my diabetes meds. That trip just about destroyed > > me! Joyce Rudy AZ birds.> > > > > >> > > >> > Joyce,> > I'll lay odds it's not your weight. I think it's your lungs and> > has little to do with fat. You've lost 15 pounds and you're> > exercising regularly. You are taking care of yourself.> > > > You didn't mention whether you checked your sat...what was it? Do> > you know? Did you try turning your oxygen up a bit? It's> > frustrating when you set your self a task and then can't complete> > it because you can't breathe. All of us have had that experience> > and understand how you are feeling. It sounds as though you were> > trying to accomplish too much. Carrying baked goods, an incline> > and two flights of stairs, it would definitely be way too much for> > me. As hard as it is to adjust your thinking, you've got to do it.> > You haven't found your new normal yet. You will. You bumped up> > against a limitation today. That's likely all it is. You will> > learn to be more realistic when it comes to this kind of stuff but> > it takes time.> > > > As to what your friends are saying...are these the same friends> > who were against you seeking a second opinion at NJH? Please,> > please, please stop listening to people who don't understand your> > lung disease.> > > > > >> > /* Beth*/> >> > */Moderator/ *> >> > */Fibrotic NSIP 06/06 Dermatomyositis 11/08/*> >> > *//* > >> > > >> >> >> > ------------ --------- --------- --------- --------- --------- -> > *From:* Joyce <BlueLiddy@. ..>> > *To:* Breathe-Support@ yahoogroups. com> > *Sent:* Sat, November 14, 2009 5:29:13 PM> > *Subject:* scared> >> > > >> > I went to deliver some baked goods to a bake sale for one of my> > groups and had to park in the lower lot. Had to walk up a 2%> > incline and 2 flights of stairs and couldn't make it up the second> > flight without assistance. I asked for help retrieving the other> > baked goods and was given it. I knew I couldn't do it again. It> > scared me. I don't undestand why I couldn't do it. My 02 was on> > constant and I still co8uldn't make it. I left feeling scared and> > frustrated and embarrassed and blue...I think this illness is> > going to kill me. On my last visit to NJH what they didn't rerun> > was the test where you ride a bike on an incline...my friend said> > it is becaus I'm fat and my diaphram can't expand but that is bull> > shit. Everyone says it is because I amfat. But I have lost 15> > pounds. there were fatter people then me going in and out that> > place. Every one blames it onmy beign fat. I amso sick of that!> > That is the reason i didn't go to the doctor sooner because I wasw> > fat. Everyone says it is because i am fat. Screw them! Anyway, I> > think I am going todie ofbeing fat....I think thefat is going> > tokill me.Joyce rudy AZ birds> >> >>

[Guest guest]

It's very easy for people to blame our weight for our breathing difficulties. Even doctors are sometimes guilty of this. Granted losing weight can make things somewhat easier and there's no doubt it lessens the burden on our hearts but the bottom line is our lung disease isn't going away whether we weight 275 pounds or 120 pounds.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, November 15, 2009 12:13:27 AMSubject: Re: scared

Yep. Z nailed it. Our disease would exist with or without our fluffiness. Odd, since I stopped stressing over it so much I have lost 29 pounds. Slowly. Very slowly though. Plus I was fortunate enough that BCBS paid for me to see a diabetes counselor who told me where I needed to be with carbs to lose weight.But I am very happy in my fluffiness and encourage you to make peace with your body. I mean really. None of us are getting any younger or less fluffy or prettier or turning into Barbie but what we can do is be positive and strong in spirit. And rock on. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > >> > Beth- I didn't know what my stats were. Though I had my oximeter > > with me I had my hands full of pumpkin pie which I made on Friday. > > Friday I made 2 pumpkin pies,24 brownies with frosting and 2 quick > > breads. It was quite tiring. Oh also roasted a turkey for my dogs on > > Friday and by the end I could barely eat. Which reminds me...I > > cleaned the oven the day before and the fumes about wiped me out! Talk > > about bad for your lungs. I thought I was going to die! I took my dogs > > and barricaded myself in the bedroom and thought it was freezing I > > opened ever window and door in the house. I had never used a self > > cleaning oven

before and my God it is horrible! How do you do it???? > > But, today I couldn't look to see my stats. I had my 02 on continuous > > 4lpm and never thought I could increase it. I thought when a doctor > > told you what your lpm are you had to stick to that. I just have to > > tell you on the second set of stairs I thought I would die...I had to > > be helped up...Since I wrote this post I laid down and slept. I slept > > and slept and slept. I have had no appetite but know I must eat > > something because of my diabetes meds. That trip just about destroyed > > me! Joyce Rudy AZ birds.> > > > > >> > > >> > Joyce,> > I'll lay odds it's not your weight. I think it's your lungs and> > has little to

do with fat. You've lost 15 pounds and you're> > exercising regularly. You are taking care of yourself.> > > > You didn't mention whether you checked your sat...what was it? Do> > you know? Did you try turning your oxygen up a bit? It's> > frustrating when you set your self a task and then can't complete> > it because you can't breathe. All of us have had that experience> > and understand how you are feeling. It sounds as though you were> > trying to accomplish too much. Carrying baked goods, an incline> > and two flights of stairs, it would definitely be way too much for> > me. As hard as it is to adjust your thinking, you've got to do it.> > You haven't found your new normal yet. You will. You bumped up> > against a limitation today. That's likely all it is. You will> > learn to be more realistic when it comes to this kind

of stuff but> > it takes time.> > > > As to what your friends are saying...are these the same friends> > who were against you seeking a second opinion at NJH? Please,> > please, please stop listening to people who don't understand your> > lung disease.> > > > > >> > /* Beth*/> >> > */Moderator/ *> >> > */Fibrotic NSIP 06/06 Dermatomyositis 11/08/*> >> > *//* > >> > > >> >> >> > ------------ --------- --------- --------- --------- --------- -> > *From:* Joyce <BlueLiddy@. ..>> > *To:* Breathe-Support@ yahoogroups. com> > *Sent:* Sat, November 14, 2009 5:29:13

PM> > *Subject:* scared> >> > > >> > I went to deliver some baked goods to a bake sale for one of my> > groups and had to park in the lower lot. Had to walk up a 2%> > incline and 2 flights of stairs and couldn't make it up the second> > flight without assistance. I asked for help retrieving the other> > baked goods and was given it. I knew I couldn't do it again. It> > scared me. I don't undestand why I couldn't do it. My 02 was on> > constant and I still co8uldn't make it. I left feeling scared and> > frustrated and embarrassed and blue...I think this illness is> > going to kill me. On my last visit to NJH what they didn't rerun> > was the test where you ride a bike on an incline...my friend said> > it is becaus I'm fat and my diaphram can't expand but that is bull> > shit.

Everyone says it is because I amfat. But I have lost 15> > pounds. there were fatter people then me going in and out that> > place. Every one blames it onmy beign fat. I amso sick of that!> > That is the reason i didn't go to the doctor sooner because I wasw> > fat. Everyone says it is because i am fat. Screw them! Anyway, I> > think I am going todie ofbeing fat....I think thefat is going> > tokill me.Joyce rudy AZ birds> >> >>

[Guest guest]

Rudy Joyce

i would rather have a piece of white fish than lox, but i like lox too

there are a million kugel recipes -- i like the dairy kugels better than the sweet kugels -- personal preference

i have even used my noodle kugel recipes with matza farfel during Passover -- separating the eggs, and the whipped egg whites, makes the farfel much lighter

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: scaredTo: Breathe-Support Date: Saturday, November 14, 2009, 8:45 PM

Thank you, Pink. It was so scary. I thought I would die. I felt like a fool! Here these people older then I am are just skipping up the incline and the stairs and I was stopped in my tracks. And, as Beth says I exercise regularly. It just stopped me dead in my tracks. I will never do that again. I know on the treadmill my speed is up to 1.8 and I can do 5 minutes level and last week for the hell of it I put it on a 1% incline and the staff had to come rescue me...I couldn't do the incline...and your daughter has 4 flights of stairs! Lord! I would never be able to do it. You must really love your grandson! And, my husband was Jewish so I know what a Mitzvah(?) is! Ahahahahah I learned some fabulous recipes from my mother in law and I just made some spinach borscht! I was given a bunch of spinach and so made it. Love the stuff! You brought up kugal and it made me smile. I used to make it but sure don'tremember the recipe any more. Lox and bagel!

I so love that! and, smoked white fish and little dill tomato's...love it! Joyce Rudy AZ birds

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish

fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to

do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends

who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up

the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ

birds>

[Guest guest]

Joyce Rudy, Add some cucumber too

and even some sweet munchee cheese...yum!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara 

    

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

BlueLiddy@... wrote:

 

Oh,

would love your kugel recipe!!! I didn't know Zion meant Isreal...how

interesting. I made myself hungry for lox and bagel. I put cream cheese

and onion and tomato on it and most others I have met only use cream

cheese or cream cheese and onion. Ever heard of that? Joyce Rudy AZ

birds

 

In

a message dated 11/14/2009 10:03:39 P.M. US Mountain Standard Tim,

ljz741 (AT) verizon (DOT) net writes:

 

Joyce Rudy, You've

managed to make me hungry  for lox and bagel at midnight!!!

 I have the kugel recipe if you want it!  My last name is Zion ( means 

Israel in Hebrew)

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I

never smoked!

Potter, reader,carousel lover and

MomMom to Darah and Sara      

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca Minor-periwinkle is my

flower

 

 

BlueLiddy (AT) aol (DOT) com

wrote:

 

Thank you, Pink. It was so scary. I thought I would die. I

felt like a fool! Here these people older then I am are just skipping

up the incline and the stairs and I was stopped in my tracks. And, as

Beth says I exercise regularly. It just stopped me dead in my

tracks. I will never do that again. I know on the treadmill my speed is

up to 1.8 and I can do 5 minutes level and last week for the hell of it

I put it on a 1% incline and the staff had to come rescue me...I

couldn't do the incline...and your daughter has 4 flights of stairs!

Lord! I would never be able to do it. You must really love your

grandson! And, my husband was Jewish so I know what a Mitzvah(?) is!

Ahahahahah I learned some fabulous recipes from my mother in law and I

just made some spinach borscht! I was given a bunch of spinach and so

made it. Love the stuff! You brought up kugal and it made me smile. I

used to make it but sure don'tremember the recipe any more. Lox and

bagel! I so love that! and, smoked white fish and little dill

tomato's...love it! Joyce Rudy AZ birds

 

In a message dated 11/14/2009 6:20:11 P.M. US Mountain

Standard Time, pinkrockybeach (AT) yahoo (DOT) com writes:

 

i was just describing the situation to

Jerry -- incline, 2 flights of stairs, carrying packages,  -- very thin

Jerry said he would have trouble too

Pink Joyce R

(IPF 3/06)  IFA 5/09 Pennsylvania

Donate Life

Listed 1/09

Inactive 4/09

www.transplantfund.org

From: Stefani <sfshaner (AT) gmail (DOT) com>

Subject: Re: scared

To: Breathe-Support

Date: Saturday, November 14, 2009, 8:01 PM

 

Hey, I have been there!! I spent 3 years after one

pulmo-dude said I had "an interstitial disease" and left it at that. I

wasn't on oxygen, but developed coping strategies for my perceived

shortness of breath. Then I went to NJ in Denver and learned all kinds

of stuff, and got an oximeter as members of this board have

recommended. I have since conpleted pulmonary rehab and have a much

better idea what I can and cannot do. I have also learned the breathing

techniques and coping strategies to best handle "road blocks". I have a

light weight luggage carrier I keep in my car for transporting anything

and everything on wheels. I have a portable tank with the "demand

sensor" delivery system. I have a handicap parking banner for when I

need it. I do not always use it, it is just nice to have for those

times I need it. I don't hesitate to stop and catch my breath if my

sats drop below 88-90. I monitor constantly as I have not yet learned

to distinguish fatigue from low oxygen. Hang in there... you will get

the hang of it. I think it is cool that you are keeping active with

your baked goods for a good cause... And,... I am tipping the scales at

230 (forever trying to lose weight, but always trying to eat smart and

healthy). Remember, you can be fit and fat. I know skinny-Minnies that

are not fit at all. They also have lousy eating habits. Don't let it

scare you... conquer your fears with knowledge!!

Stefani 61 year old Utahn

ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

>

> Joyce,

> I'll lay odds it's not your weight. I think it's your lungs and

has little to do with fat. You've lost 15 pounds and you're exercising

regularly. You are taking care of yourself.

>

> You didn't mention whether you checked your sat...what was it? Do

you know?  Did you try turning your oxygen up a bit?  It's

frustrating when you set your self a task and then can't complete it

because you can't breathe. All of us have had that experience and

understand how you are feeling. It sounds as though you were trying to

accomplish too much. Carrying baked goods, an incline and two flights

of stairs, it would definitely be way too much for me. As hard as it is

to adjust your thinking, you've got to do it. You haven't found your

new normal yet. You will. You bumped up against a limitation today.

That's likely all it is. You will learn to be more realistic when it

comes to this kind of stuff but it takes time.

>

> As to what your friends are saying...are these the same friends

who were against you seeking a second opinion at NJH? Please, please,

please stop listening to people who don't understand your lung disease.

>

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

> ____________ _________ _________ __

> From: Joyce <BlueLiddy@. ..>

> To: Breathe-Support@

yahoogroups. com

> Sent: Sat, November 14, 2009 5:29:13 PM

> Subject: scared

>

>  

> I went to deliver some baked goods to a bake sale for one of my

groups and had to park in the lower lot. Had to walk up a 2% incline

and 2 flights of stairs and couldn't make it up the second flight

without assistance. I asked for help retrieving the other baked goods

and was given it. I knew I couldn't do it again. It scared me. I don't

undestand why I couldn't do it. My 02 was on constant and I still

co8uldn't make it. I left feeling scared and frustrated and embarrassed

and blue...I think this illness is going to kill me. On my last visit

to NJH what they didn't rerun was the test where you ride a bike on an

incline...my friend said it is becaus I'm fat and my diaphram can't

expand but that is bull shit. Everyone says it is because I amfat. But

I have lost 15 pounds. there were fatter people then me going in and

out that place. Every one blames it onmy beign fat. I amso sick of

that! That is the reason i didn't go to the doctor sooner because I wasw

> fat. Everyone says it is because i am fat. Screw them! Anyway, I

think I am going todie ofbeing fat....I think thefat is going tokill

me.Joyce rudy AZ birds

>

[Guest guest]

What would life be without pizza, Joyce?

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

To: Breathe-Support Sent: Sun, November 15, 2009 11:04:15 AMSubject: Re: Re: scared

That's true..but it is so hard to not be hurt from remarks about your weight. I am a Vegan...but mostly just a vegetarian and I don't watch my carbs and it works..my blood sugars are fine...I eat a tremendous amount of carbs a day and if I wouldstoop eating dairy I would probably lose weight very fast...I just can't get myself to do it and every once in a while i can't stand it and buy a pizza..no meat but a pizza! Joyce rudy AZ birds

In a message dated 11/14/2009 10:14:10 P.M. US Mountain Standard Tim, lbsmith789@sbcgloba l.net writes:

Yep. Z nailed it. Our disease would exist with or without our fluffiness. Odd, since I stopped stressing over it so much I have lost 29 pounds. Slowly. Very slowly though. Plus I was fortunate enough that BCBS paid for me to see a diabetes counselor who told me where I needed to be with carbs to lose weight.But I am very happy in my fluffiness and encourage you to make peace with your body. I mean really. None of us are getting any younger or less fluffy or prettier or turning into Barbie but what we can do is be positive and strong in spirit. And rock on. S, Lubbock, TXNSIP w/PF 12/2006 et al> > > >> > Beth- I didn't know what my stats were. Though I had my oximeter > > with me I had my hands full of pumpkin pie which I made on Friday. > > Friday I made 2 pumpkin pies,24 brownies with frosting and 2 quick > > breads. It was quite tiring. Oh also roasted a turkey for my dogs on > > Friday and by the end I could barely eat. Which reminds me...I > > cleaned the oven the day before and the fumes about wiped me out! Talk > > about bad for your lungs. I thought I was going to die! I took my dogs > > and barricaded myself in the bedroom and thought it was freezing I > > opened ever window and door in the

house. I had never used a self > > cleaning oven before and my God it is horrible! How do you do it???? > > But, today I couldn't look to see my stats. I had my 02 on continuous > > 4lpm and never thought I could increase it. I thought when a doctor > > told you what your lpm are you had to stick to that. I just have to > > tell you on the second set of stairs I thought I would die...I had to > > be helped up...Since I wrote this post I laid down and slept. I slept > > and slept and slept. I have had no appetite but know I must eat > > something because of my diabetes meds. That trip just about destroyed > > me! Joyce Rudy AZ birds.> > > > > >> > > >> > Joyce,> > I'll lay odds it's not your

weight. I think it's your lungs and> > has little to do with fat. You've lost 15 pounds and you're> > exercising regularly. You are taking care of yourself.> > > > You didn't mention whether you checked your sat...what was it? Do> > you know? Did you try turning your oxygen up a bit? It's> > frustrating when you set your self a task and then can't complete> > it because you can't breathe. All of us have had that experience> > and understand how you are feeling. It sounds as though you were> > trying to accomplish too much. Carrying baked goods, an incline> > and two flights of stairs, it would definitely be way too much for> > me. As hard as it is to adjust your thinking, you've got to do it.> > You haven't found your new normal yet. You will. You bumped up> > against a limitation today. That's likely all it is. You

will> > learn to be more realistic when it comes to this kind of stuff but> > it takes time.> > > > As to what your friends are saying...are these the same friends> > who were against you seeking a second opinion at NJH? Please,> > please, please stop listening to people who don't understand your> > lung disease.> > > > > >> > /* Beth*/> >> > */Moderator/ *> >> > */Fibrotic NSIP 06/06 Dermatomyositis 11/08/*> >> > *//* > >> > > >> >> >> > ------------ --------- --------- --------- --------- --------- -> > *From:* Joyce <BlueLiddy@. ..>> > *To:* Breathe-Support@ yahoogroups. com> > *Sent:* Sat, November 14, 2009 5:29:13 PM> > *Subject:* scared> >> > > >> > I went to deliver some baked goods to a bake sale for one of my> > groups and had to park in the lower lot. Had to walk up a 2%> > incline and 2 flights of stairs and couldn't make it up the second> > flight without assistance. I asked for help retrieving the other> > baked goods and was given it. I knew I couldn't do it again. It> > scared me. I don't undestand why I couldn't do it. My 02 was on> > constant and I still co8uldn't make it. I left feeling scared and> > frustrated and embarrassed and blue...I think this illness is> > going to kill me. On my last visit to NJH what they didn't rerun> > was the test where you

ride a bike on an incline...my friend said> > it is becaus I'm fat and my diaphram can't expand but that is bull> > shit. Everyone says it is because I amfat. But I have lost 15> > pounds. there were fatter people then me going in and out that> > place. Every one blames it onmy beign fat. I amso sick of that!> > That is the reason i didn't go to the doctor sooner because I wasw> > fat. Everyone says it is because i am fat. Screw them! Anyway, I> > think I am going todie ofbeing fat....I think thefat is going> > tokill me.Joyce rudy AZ birds> >> >>

[Guest guest]

Doctors aren't sure. They have searched for an autoimmunie disease but hasn't shown up yet. I have had some in the past. My dermatoligist tells me one is coming.

To: Breathe-Support Sent: Sat, November 14, 2009 8:53:12 PMSubject: Re: Re: scared

I take Provigil. A sort of stimulent and I am telling you if I didn't have that to take twice a day I would not be able to do what I am doing. I would become so fatigued so fast that I would probably take to my bed. Or, end up sitting in a chair all day. i have a lot of fatigue but don't know if it is because of my lungs or not. I have to admit I don't understand this illness at all. My mind is sharp and it tells me I want to do this this and that but my body just can't do it. i don't understand at all...so I just try to forgive myself and carry on. What do your doctors say the fatigue is from? JoyceRudy AZ birds

In a message dated 11/14/2009 7:37:51 P.M. US Mountain Standard Time, gale.more (AT) yahoo (DOT) com writes:

I find your comment on fatigue interesing because doctors say I have more fatigue than the stage of PF.

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 14, 2009 7:51:41 PMSubject: Re: Re: scared

Stefani- I have a wagon I use to bring in my groceries from the car but it is still hard. I bring them up to my front door with the wagon and then put the packages in the entryway and that about does it for me. I have to stop and rest and then I can begin to put things away. What i never can understand is why I get so fatigued. My stats are in the 90's but I get so fatigued! Beth and others have tried to explain it to me and I try to explain it to my friends and I don't really understand so don't do a good job. The respitory therapist I saw said I have to move slower...I can't really grasp that either. I already move so slowly my friends hate walkign with me but she said I have to move even slower.and my stats are in the 90's. it baffles me so much! Joyce Rudy AZ birds

In a message dated 11/14/2009 6:20:11 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

i was just describing the situation to Jerry -- incline, 2 flights of stairs, carrying packages, -- very thin Jerry said he would have trouble too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM

Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish

fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to

do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends

who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up

the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ

birds>

[Guest guest]

Cees- where in S CA are you living? I was born and raised in San diego and moved to La Mesa when I was in Jr. High. I graduated from grossmont HS. Rudy Joyce AZ birds

Joyce,I'm having the same problems as you except for the weight, which I lost a few years back after my surgery for GERD, so I doubt your problem is weight related.

I also take Provigil, yet I end up sitting in my recliner for nearly 3 hours after I get up each morning because I don't have the energy to move, no matter how long I slept the night before. I too don't think I'd make it out of bed without the medication.

It's not as bad as it was last year though when I also had severe anemia & hypothyroidism. I couldn't seem to get out of the recliner at all then. The testing for those is what eventually led to my dx of PF. But they're both under control now. Joyce, have you been tested for those?

Bruce, I just failed my second at-home sleep apnea test. When I put on all that equipment, my restless leg syndrome turns into restless body, and I'm either twitching all over the bed or needing to get up & walk around. After 3-1/2 hrs of that the first time, I took off all the stuff & fell asleep right away. Last night I tried for 5 hrs & finally gave up & got out of bed to start the day. Right now I'm in the recliner again.

If I can't even do the testing, how am I ever going to handle the CPAP machine? Is it possible to get the overnight oximeter testing if I'm not on oxygen yet? I'm wondering if getting oxygen at night would be easier to handle than CPAP.

I got an oximeter like you all recommend & so far my low rate is 89 in the daytime with a little exertion. I can't imagine how low it would go if I tried to deliver Joyce's baked goods! You're nuts, girl. Supposedly, I don't need oxygen yet but I couldn't handle that type of exertion. When I finally saw my pulmodoc Thurs., he said he only prescribes oxygen when the SATs regularly hit 88 & below. Is that typical? (Don't know how he'd even know that since he only takes SATs once every 3 months & then only when we're sitting at rest. I'm usually 96 & above doing that.)

Another thing that concerns me is that I already have problems trying to catch my breath. You guys have talked about that panicky feeling on this board. Are you saying that it still happens even when you're on oxygen? I also think I saw that someone said they get out of breath even when their SATs are normal. I don't understand.

Hope I'm making sense. Since I didn't get any sleep last night, I keep starting to doze off as I write this. Anybody got any info?

Cees, S Calif

PF 10/08

[Guest guest]

Pink- any time I talk my 02 drops significantly...I wonder why that is? Even sitting my 02 drops below 90 if I am talking...strange...Rudy Joyce

Cees

when my pulmonary doc precribed the o2, she had the nurse walk with me in the hallway -- walking a talking at the same time is difficult -- so my SAT dropped into the 80's (3 years ago, maybe it was 87)

and they ordered the o2

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org--- On Sun, 11/15/09, ceesnews (AT) yahoo (DOT) com <ceesnews (AT) yahoo (DOT) com> wrote:

From: ceesnews (AT) yahoo (DOT) com <ceesnews (AT) yahoo (DOT) com>Subject: Re: ScaredTo: Breathe-Support Date: Sunday, November 15, 2009, 2:25 PM

Joyce,I'm having the same problems as you except for the weight, which I lost a few years back after my surgery for GERD, so I doubt your problem is weight related.

I also take Provigil, yet I end up sitting in my recliner for nearly 3 hours after I get up each morning because I don't have the energy to move, no matter how long I slept the night before. I too don't think I'd make it out of bed without the medication.

It's not as bad as it was last year though when I also had severe anemia & hypothyroidism. I couldn't seem to get out of the recliner at all then. The testing for those is what eventually led to my dx of PF. But they're both under control now. Joyce, have you been tested for those?

Bruce, I just failed my second at-home sleep apnea test. When I put on all that equipment, my restless leg syndrome turns into restless body, and I'm either twitching all over the bed or needing to get up & walk around. After 3-1/2 hrs of that the first time, I took off all the stuff & fell asleep right away. Last night I tried for 5 hrs & finally gave up & got out of bed to start the day. Right now I'm in the recliner again.

If I can't even do the testing, how am I ever going to handle the CPAP machine? Is it possible to get the overnight oximeter testing if I'm not on oxygen yet? I'm wondering if getting oxygen at night would be easier to handle than CPAP.

I got an oximeter like you all recommend & so far my low rate is 89 in the daytime with a little exertion. I can't imagine how low it would go if I tried to deliver Joyce's baked goods! You're nuts, girl. Supposedly, I don't need oxygen yet but I couldn't handle that type of exertion. When I finally saw my pulmodoc Thurs., he said he only prescribes oxygen when the SATs regularly hit 88 & below. Is that typical? (Don't know how he'd even know that since he only takes SATs once every 3 months & then only when we're sitting at rest. I'm usually 96 & above doing that.)

Another thing that concerns me is that I already have problems trying to catch my breath. You guys have talked about that panicky feeling on this board. Are you saying that it still happens even when you're on oxygen? I also think I saw that someone said they get out of breath even when their SATs are normal. I don't understand.

Hope I'm making sense. Since I didn't get any sleep last night, I keep starting to doze off as I write this. Anybody got any info?

Cees, S Calif

PF 10/08

[Guest guest]

I can comment on my experience with CPAP. My sleep study showed moderately severe sleep apnea and I was prescribed a CPAP. Docs warned how difficult it was to sleep with CPAP. I started sleeping immediately and have no problems at all. My sleep index immediately went to normal. I do not have restless leg syndrome.

Hope this gives you some encouragment.

To: Breathe-Support Sent: Sun, November 15, 2009 1:25:03 PMSubject: Re: Scared

Joyce,I'm having the same problems as you except for the weight, which I lost a few years back after my surgery for GERD, so I doubt your problem is weight related.

I also take Provigil, yet I end up sitting in my recliner for nearly 3 hours after I get up each morning because I don't have the energy to move, no matter how long I slept the night before. I too don't think I'd make it out of bed without the medication.

It's not as bad as it was last year though when I also had severe anemia & hypothyroidism. I couldn't seem to get out of the recliner at all then. The testing for those is what eventually led to my dx of PF. But they're both under control now. Joyce, have you been tested for those?

Bruce, I just failed my second at-home sleep apnea test. When I put on all that equipment, my restless leg syndrome turns into restless body, and I'm either twitching all over the bed or needing to get up & walk around. After 3-1/2 hrs of that the first time, I took off all the stuff & fell asleep right away. Last night I tried for 5 hrs & finally gave up & got out of bed to start the day. Right now I'm in the recliner again.

If I can't even do the testing, how am I ever going to handle the CPAP machine? Is it possible to get the overnight oximeter testing if I'm not on oxygen yet? I'm wondering if getting oxygen at night would be easier to handle than CPAP.

I got an oximeter like you all recommend & so far my low rate is 89 in the daytime with a little exertion. I can't imagine how low it would go if I tried to deliver Joyce's baked goods! You're nuts, girl. Supposedly, I don't need oxygen yet but I couldn't handle that type of exertion. When I finally saw my pulmodoc Thurs., he said he only prescribes oxygen when the SATs regularly hit 88 & below. Is that typical? (Don't know how he'd even know that since he only takes SATs once every 3 months & then only when we're sitting at rest. I'm usually 96 & above doing that.)

Another thing that concerns me is that I already have problems trying to catch my breath. You guys have talked about that panicky feeling on this board. Are you saying that it still happens even when you're on oxygen? I also think I saw that someone said they get out of breath even when their SATs are normal. I don't understand.

Hope I'm making sense. Since I didn't get any sleep last night, I keep starting to doze off as I write this. Anybody got any info?

Cees, S Calif

PF 10/08

[Guest guest]

Cees

when my pulmonary doc precribed the o2, she had the nurse walk with me in the hallway -- walking a talking at the same time is difficult -- so my SAT dropped into the 80's (3 years ago, maybe it was 87)

and they ordered the o2

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: ScaredTo: Breathe-Support Date: Sunday, November 15, 2009, 2:25 PM

Joyce,I'm having the same problems as you except for the weight, which I lost a few years back after my surgery for GERD, so I doubt your problem is weight related.

I also take Provigil, yet I end up sitting in my recliner for nearly 3 hours after I get up each morning because I don't have the energy to move, no matter how long I slept the night before. I too don't think I'd make it out of bed without the medication.

It's not as bad as it was last year though when I also had severe anemia & hypothyroidism. I couldn't seem to get out of the recliner at all then. The testing for those is what eventually led to my dx of PF. But they're both under control now. Joyce, have you been tested for those?

Bruce, I just failed my second at-home sleep apnea test. When I put on all that equipment, my restless leg syndrome turns into restless body, and I'm either twitching all over the bed or needing to get up & walk around. After 3-1/2 hrs of that the first time, I took off all the stuff & fell asleep right away. Last night I tried for 5 hrs & finally gave up & got out of bed to start the day. Right now I'm in the recliner again.

If I can't even do the testing, how am I ever going to handle the CPAP machine? Is it possible to get the overnight oximeter testing if I'm not on oxygen yet? I'm wondering if getting oxygen at night would be easier to handle than CPAP.

I got an oximeter like you all recommend & so far my low rate is 89 in the daytime with a little exertion. I can't imagine how low it would go if I tried to deliver Joyce's baked goods! You're nuts, girl. Supposedly, I don't need oxygen yet but I couldn't handle that type of exertion. When I finally saw my pulmodoc Thurs., he said he only prescribes oxygen when the SATs regularly hit 88 & below. Is that typical? (Don't know how he'd even know that since he only takes SATs once every 3 months & then only when we're sitting at rest. I'm usually 96 & above doing that.)

Another thing that concerns me is that I already have problems trying to catch my breath. You guys have talked about that panicky feeling on this board. Are you saying that it still happens even when you're on oxygen? I also think I saw that someone said they get out of breath even when their SATs are normal. I don't understand.

Hope I'm making sense. Since I didn't get any sleep last night, I keep starting to doze off as I write this. Anybody got any info?

Cees, S Calif

PF 10/08

[Guest guest]

Joyce,

It's because when you talk you are inhaling through your mouth and not your nose. Since the oxygen tubing is in your nose, if you are inhaling through your mouth you are getting less oxygen into your lungs.

When you speak you also inhale faster and more shallow. All these things contribute to your sats dropping when you talk. It's not by any means a unique problem.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, November 15, 2009 7:36:28 PMSubject: Re: Re: Scared

Pink- any time I talk my 02 drops significantly. ..I wonder why that is? Even sitting my 02 drops below 90 if I am talking...strange. ..Rudy Joyce

In a message dated 11/15/2009 5:03:00 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

Cees

when my pulmonary doc precribed the o2, she had the nurse walk with me in the hallway -- walking a talking at the same time is difficult -- so my SAT dropped into the 80's (3 years ago, maybe it was 87)

and they ordered the o2

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: ceesnews (AT) yahoo (DOT) com <ceesnews (AT) yahoo (DOT) com>Subject: Re: ScaredTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 2:25 PM

Joyce,I'm having the same problems as you except for the weight, which I lost a few years back after my surgery for GERD, so I doubt your problem is weight related.

I also take Provigil, yet I end up sitting in my recliner for nearly 3 hours after I get up each morning because I don't have the energy to move, no matter how long I slept the night before. I too don't think I'd make it out of bed without the medication.

It's not as bad as it was last year though when I also had severe anemia & hypothyroidism. I couldn't seem to get out of the recliner at all then. The testing for those is what eventually led to my dx of PF. But they're both under control now. Joyce, have you been tested for those?

Bruce, I just failed my second at-home sleep apnea test. When I put on all that equipment, my restless leg syndrome turns into restless body, and I'm either twitching all over the bed or needing to get up & walk around. After 3-1/2 hrs of that the first time, I took off all the stuff & fell asleep right away. Last night I tried for 5 hrs & finally gave up & got out of bed to start the day. Right now I'm in the recliner again.

If I can't even do the testing, how am I ever going to handle the CPAP machine? Is it possible to get the overnight oximeter testing if I'm not on oxygen yet? I'm wondering if getting oxygen at night would be easier to handle than CPAP.

I got an oximeter like you all recommend & so far my low rate is 89 in the daytime with a little exertion. I can't imagine how low it would go if I tried to deliver Joyce's baked goods! You're nuts, girl. Supposedly, I don't need oxygen yet but I couldn't handle that type of exertion. When I finally saw my pulmodoc Thurs., he said he only prescribes oxygen when the SATs regularly hit 88 & below. Is that typical? (Don't know how he'd even know that since he only takes SATs once every 3 months & then only when we're sitting at rest. I'm usually 96 & above doing that.)

Another thing that concerns me is that I already have problems trying to catch my breath. You guys have talked about that panicky feeling on this board. Are you saying that it still happens even when you're on oxygen? I also think I saw that someone said they get out of breath even when their SATs are normal. I don't understand.

Hope I'm making sense. Since I didn't get any sleep last night, I keep starting to doze off as I write this. Anybody got any info?

Cees, S Calif

PF 10/08

[Guest guest]

Joyce and Beth, I find that is true about slowing down, if I don't I'm quickly gasping for breath. I've learned to pace myself whatever I'm doing. I have to or I just can't function. I find that I can almost do everything I used to do except work in the wood shop. I can't tolerate strong smells and I feel like I'll suffocate around smoke of any kind. This all can be frustrating at times but I'm trying to adjust. What choice do I have?PJ in OH, 54, IPF 09, Sjogren's 95 scared> > Â > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it upthe second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZbirds>

[Guest guest]

Why thank you, Dyane- I get so frustrated when people tell me that what's wrong with me is fat. Some even uggest that I could do it if I "really wanted to do it". Others say you just do MIND OVER MATTER! You are a strong person, Joyce...you can do anything you WANT to do..." don't be weak..you have to do it! your house is a mess! You have no pride in your home or you would keep it tiddy and clean! A friend suggested I could do anything I wanted and it is that I just don't want to do it. She thinks the fact that I am so fatigued is an excuse because she gets very tired and yet she gets up and does it. And all the people who say if I just lost weight so many of my problems would disappear! Lazy and fat! Lazy and Fat! that is the mantra of those around me! One friend says she has COPD and she keeps her house clean...and does all sorts of things and doesn't need oxygen and she can't figure out why I need oxygen! They are such nice caring people but they some how expect me to rise to the occasion and overcome my illness. In fact I had a close,close friend who always said to me"STOP THAT YOU SOUND LIKE A 90 YEAR OLD WOMAN!!!" Like I had control over my breathing. At the time I didn't know I was sick and we were doing things like moving stuff and unconsciously I started panting and couphing....I didn't even know I was doing it. But did she say: Joyce your breathing is sounding very bad, you should see a doctor." ? no! She just said I was trying to get attention and out of doing the work....When I went to NJH she said I should just stop trying to get better and accept what the "doctor said" and go on with my life. Had I done that I would be dead now. We are no longer friends..she was so judgmental..people are so judgmental. I wish I were skinny. Maybe then people would know that I just can't do what I used to do? My pulomodude said he would like me to lose some weight if I could but it is not a top priority..mostly he wanted me to have fun...as much fun as I could have. That was his prescription for me. Joyce rudy az birds

Joyce,Bet I'm fatter than you are LOL Joyce we love youDyane Phoenix ipf 02>> I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds>

[Guest guest]

this can b e a very weird disease at times

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: ScaredTo: Breathe-Support Date: Sunday, November 15, 2009, 7:36 PM

Pink- any time I talk my 02 drops significantly. ..I wonder why that is? Even sitting my 02 drops below 90 if I am talking...strange. ..Rudy Joyce

In a message dated 11/15/2009 5:03:00 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

Cees

when my pulmonary doc precribed the o2, she had the nurse walk with me in the hallway -- walking a talking at the same time is difficult -- so my SAT dropped into the 80's (3 years ago, maybe it was 87)

and they ordered the o2

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: ceesnews (AT) yahoo (DOT) com <ceesnews (AT) yahoo (DOT) com>Subject: Re: ScaredTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 2:25 PM

Joyce,I'm having the same problems as you except for the weight, which I lost a few years back after my surgery for GERD, so I doubt your problem is weight related.

I also take Provigil, yet I end up sitting in my recliner for nearly 3 hours after I get up each morning because I don't have the energy to move, no matter how long I slept the night before. I too don't think I'd make it out of bed without the medication.

It's not as bad as it was last year though when I also had severe anemia & hypothyroidism. I couldn't seem to get out of the recliner at all then. The testing for those is what eventually led to my dx of PF. But they're both under control now. Joyce, have you been tested for those?

Bruce, I just failed my second at-home sleep apnea test. When I put on all that equipment, my restless leg syndrome turns into restless body, and I'm either twitching all over the bed or needing to get up & walk around. After 3-1/2 hrs of that the first time, I took off all the stuff & fell asleep right away. Last night I tried for 5 hrs & finally gave up & got out of bed to start the day. Right now I'm in the recliner again.

If I can't even do the testing, how am I ever going to handle the CPAP machine? Is it possible to get the overnight oximeter testing if I'm not on oxygen yet? I'm wondering if getting oxygen at night would be easier to handle than CPAP.

I got an oximeter like you all recommend & so far my low rate is 89 in the daytime with a little exertion. I can't imagine how low it would go if I tried to deliver Joyce's baked goods! You're nuts, girl. Supposedly, I don't need oxygen yet but I couldn't handle that type of exertion. When I finally saw my pulmodoc Thurs., he said he only prescribes oxygen when the SATs regularly hit 88 & below. Is that typical? (Don't know how he'd even know that since he only takes SATs once every 3 months & then only when we're sitting at rest. I'm usually 96 & above doing that.)

Another thing that concerns me is that I already have problems trying to catch my breath. You guys have talked about that panicky feeling on this board. Are you saying that it still happens even when you're on oxygen? I also think I saw that someone said they get out of breath even when their SATs are normal. I don't understand.

Hope I'm making sense. Since I didn't get any sleep last night, I keep starting to doze off as I write this. Anybody got any info?

Cees, S Calif

PF 10/08