Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 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 (AT) aol (DOT) com>To: Breathe-Support Sent: Sat, November 14, 2009 5:29:13 PMSubject: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 Joyce, Your doctors prescription for your oxygen use is an educated estimate of what your needs are under most of the circumstances he/she expected you to be in. You however put yourself in an extraordinary circumstance. No one uses the same liters per minute all the time. And your doctor didn't forsee you hauling baked goods up a hill, and the up two flights of stairs. When I have to do something particularly strenuous, I turn my O2 up and then turn it back down when I'm finished. Your sat probably dropped quite a bit while you were doing this. I know what it's like to be independent but I've gradually learned that if I want to continue to do things and contribute my effort to things I care about I have to work within the limitations of my lousy lungs! It's just the way it is. By the way, self cleaning ovens do make a stink when they run. When I run mine the windows stay wide open and I run a fan exhausting the stink out of the kitchen. While it's running I also stay in another part of the house. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, November 14, 2009 8:32:37 PMSubject: Re: scared 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. In a message dated 11/14/2009 3:57:16 P.M. US Mountain Standard Time, mbmurtha (AT) yahoo (DOT) com writes: 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 (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 14, 2009 5:29:13 PMSubject: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 Joyce/ Beth What you described as two flights of steps and carrying something in addition to carrying my oxygen is not something I could handle. I would have to turn my oxygen way up and would still have to stop on the way more than one time. The steps are one challenge but carrying any amount of weight is a huge one for me. You're combining aerobic and anaerobic exercises. Thats a challenge. I would also imagine you're not breathing full deep breaths in juggling those things. I can walk 45 minutes and a mile and a half on the treadmill at 5 lpm but you tell me to carry something up two flights of steps and 5 lpm even would not come close to maintaining my saturations and keeping me feeling good. In a walk up steps even the portable oxygen is an extra weight because rather than carrying it on level ground you're really lifting it and you're doing that on every step. > > Joyce, > Your doctors prescription for your oxygen use is an educated estimate of what your needs are under most of the circumstances he/she expected you to be in. > > You however put yourself in an extraordinary circumstance. No one uses the same liters per minute all the time. And your doctor didn't forsee you hauling baked goods up a hill, and the up two flights of stairs. > When I have to do something particularly strenuous, I turn my O2 up and then turn it back down when I'm finished. Your sat probably dropped quite a bit while you were doing this. > > I know what it's like to be independent but I've gradually learned that if I want to continue to do things and contribute my effort to things I care about I have to work within the limitations of my lousy lungs! It's just the way it is. > > By the way, self cleaning ovens do make a stink when they run. When I run mine the windows stay wide open and I run a fan exhausting the stink out of the kitchen. While it's running I also stay in another part of the house. > >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > ________________________________ > From: " BlueLiddy@... " BlueLiddy@... > To: Breathe-Support > Sent: Sat, November 14, 2009 8:32:37 PM > Subject: Re: scared > >  > 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. > > In a message dated 11/14/2009 3:57:16 P.M. US Mountain Standard Time, mbmurtha (AT) yahoo (DOT) com writes: >  > >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 (AT) aol (DOT) com> > >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 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 Joyce/MB Pull rank too.....I say that laughing but serious. Tell them they need to come meet your car and take the items up. They'll gladly do it and you'll save the agony. Then if you want to go up you can do it slowly and less burdened. I never asked for help before but thats one thing I've adapted to quite well. I do ask for assistance to my car at the grocery. I do get help with my oxygen reservoir and my luggage at hotels. I do leave things at home until my 100 pound housekeeper shows up with her muscles. People understand and are more than willing. We're the only ones who look at ourselves negatively over what we can't do. > >>> > >>> 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 > >>> > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 Joyce Rudy, I set the self cleaning cycle on the oven for over night!!! I have not had any trouble at all! And most odors do bother me!  All the baking and schleping of all the goodies would definitiely do me in!!! Don't let anyone demean you...weight has nothing to do with this lousy disease! Those people don't sound like friends to me...their comments would put them on my "Toxic" persons list. Stay away from people and activities that are negative...they pull good energy away from you. Granted, we will be carrying less around with less weight and our muscles will work better but our disease will still exist! 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:  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.  In a message dated 11/14/2009 3:57:16 P.M. US Mountain Standard Time, mbmurtha (AT) yahoo (DOT) com writes:  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 (AT) aol (DOT) com> 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 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, TX NSIP 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. > > > > In a message dated 11/14/2009 3:57:16 P.M. US Mountain Standard Time, > > mbmurtha@... writes: > > > > > > > > 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 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 rudy joyce -- after the initial prescription of oxygen into the house -- it took me weeks until i even looked at the equipment -- having it delivered was extremely upsetting - at the time the pulmonary prescribed it just in case i would need it for exertion eventually my body told me that i needed to use it, from rehab i knew to start at 2 lpm then my body told me when i needed to go 24/2 and the oximeter tells me how many liters to use then when i see the pulmonary, i tell her how much i am using last spring, after the change in meds, she said i don't need 24/7 anymore -- just exertion and sleep so listen to your body and your oximeter the strangest thing is that sometimes, when using O2, i get this funny feeling, kind of like SOB, Beth explained that funny feeling in an earlier post that i saved 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, 8:32 PM 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. In a message dated 11/14/2009 3:57:16 P.M. US Mountain Standard Time, mbmurtha (AT) yahoo (DOT) com writes: 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 (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 14, 2009 5:29:13 PMSubject: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 Sorry for all you've gone through. You need not be embarrassed. The incident on the stairs was unfortunate and thankfully you were able to get home safely.I'm not even on oxygen yet, but I'm at times intimidated by stairs. I went to a concert and had to climb this massive two story stairway. I was thinking of taking the elevator but I was with family and I didn't want to get separated. I just had to go slower and pause a couple of times because I get SOB or feel like I can't catch my breath. PJ in OH, 54, IPF 09, Sjogren's 95 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Joyce, Bet I'm fatter than you are LOL Joyce we love you Dyane 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Beth/Joyce, I do understand the fatigue. I've told people for years the caffiene in my coffee and sodas was the only thing keeping me concious. Then after the 2nd sleep study I was put on Provigil also. My cpap is on 16 pressure whatevers with 8lpm of o2 bleeding in and I was still capable of sleeping for 18 hours. Why some of us handle the fatigue worse than others I do not know. I do know the Provigil saved me as I was was still falling asleep at work in front of the computer one of the few things I DON'T have is Narcolepsy. Dyane phoenix ipf 02 > >>>> > >>>> 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 > >>>> > >>> > >>> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Dear Joyce, These are NOT " nice, caring people " ! They have gone WAY beyond being nice & caring. They are obviously toxic to your well-being. I suggest you personally hand each of them some of the PF Foundation pamphlets & tell them that if they REALLY care about you, they will read them cover to cover. And if that doesn't change their attitude, you should remove them immediately from your life. You can also tell them about me. I'm 5 ft. 1 in. tall & had reached 220 pounds a few years ago. Briefly, I had major problems breathing while doing anything strenuous & my house was a mess too except the 2-3 times a year when I splurged on a housecleaner. My friends & family would urge me to lose weight but only when I brought it up. None of them would ever have said the cruel things that your " friends " say to you. Do NOT let them get away with that. Then I had surgery for major GERD problems & jokingly asked the doctor if he'd cut my stomach in half while he was in there, so I could lose weight. He told me seriously that he would do a minor lap band kind of thing that might help me lose 20-40 pounds & would also help the GERD problem. I jumped at the chance. Long story short, it only helped the GERD problem, not eliminate it. But I eventually lost 96 POUNDS! People started telling me I was too skinny. Did it help my breathing problems? (Drum roll.) A little. Not much. Not enough to make a difference in my life's activities. So doctors started treating me for asthma, which also helped a little for a couple more years until I became severely anemic, which is when they discovered my pulmonary fibrosis. And you know the rest of that story. (By the way, I've regained about 25 pounds but have been stable at this weight for a couple years now.) I'm kind of like Stefani. I know what I can & can't do. I don't volunteer anymore to help people move or rearrange their home. I don't climb hills or steps, even at work. I told them my classes had to be on the first floor unless there was a working elevator. I don't run anywhere. Etc., etc. You are obviously a giving, caring person, but it's time to start putting your foot down & putting yourself first. And if the people in your life can't stop trying to run your life, get rid of them. And know that I & the rest of this group REALLY care about you & we'll always be here for you, no matter what. Cees, S Calif UIP 10/08 > > > > 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 > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.