Re: Re: scared

[Guest guest]

, they are no where near the same drug and do not do the same thing. Prednisone helps with inflammation and Provigil is a nervous system medication which keeps you awake. Joyce R AZ birds

May I asked is Provigil an effective subsititute for Predinsone. The benefit I experience from Pred is more daily energy. Burns

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]

May I asked is Provigil an effective subsititute for Predinsone. The benefit I experience from Pred is more daily energy. Burns

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]

recently i got down to 7 Mg's prednisone == from 10Mg's, 1 mg per month

at 7 Mg's there was a significant change -- increased coughing, deeper cough causing stress incontinence

notified pulmonary, back up to 10 Mg's -- decreased coughing, not as deep, stress incontinence is gone

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 28, 2009, 10:16 PM

May I asked is Provigil an effective subsititute for Predinsone. The benefit I experience from Pred is more daily energy. Burns

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]

Thanks for sharing your experience with reduced prednisone. My VA MDP (UofM) told me to go to zero Prednisone, I was at 20 MG and am now at 16mg. If I am successful this will be the second time twelve months that I went off predinose. I went back on because I experienced months of stress with my moldy house and I had no desire to eat. I was on 60 MG in the beginning and I found there were levels like 20 MG or 10 MG that were very hard to get below without feeling very weak. My problem is clearing my lungs each day. I think Prednisone did help reduce phlem (sp). Burns IPF 10/08

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]

does your doc have you on NAC? n-acytlecysteine

i have been on it since the beginning

didn't know until recently that it helps get rid of mucus

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 29, 2009, 4:57 PM

Thanks for sharing your experience with reduced prednisone. My VA MDP (UofM) told me to go to zero Prednisone, I was at 20 MG and am now at 16mg. If I am successful this will be the second time twelve months that I went off predinose. I went back on because I experienced months of stress with my moldy house and I had no desire to eat. I was on 60 MG in the beginning and I found there were levels like 20 MG or 10 MG that were very hard to get below without feeling very weak. My problem is clearing my lungs each day. I think Prednisone did help reduce phlem (sp). Burns IPF 10/08

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:

Both of my pulmonary Doctors say NAC is useless. I tried NAC; however, I did not build in good habits while trying it. So I learned nothing. When I visit the U of Chicago next week I will asked for their opinion of NAC and for a swine flew shot. I have found trying to forstall the effects of IPF controls at least six hours per day. I do not need oxygen yet and I am still good for long walks. Burns

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 take NAC and it works for me.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

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]

,

What did you mean that you did not build in good habits while trying NAC? What were you to learn?

AB

To: Breathe-Support Sent: Sun, November 29, 2009 5:23:09 PMSubject: Re: Re: scared

Joyce:

Both of my pulmonary Doctors say NAC is useless. I tried NAC; however, I did not build in good habits while trying it. So I learned nothing. When I visit the U of Chicago next week I will asked for their opinion of NAC and for a swine flew shot. I have found trying to forstall the effects of IPF controls at least six hours per day. I do not need oxygen yet and I am still good for long walks. Burns

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>