Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 > Sunny, I have been living with Lupus since I was ten. That's 45 years > now. I wasn't officially > diagnosed until I hit 30, and even then it was followed by the word " suspect " > on my chart until just > last year. I suffered all through my childhood, puberty, and young > adulthood with pain, fatigue, > fevers, mysterious illnesses with no known cause, OB-GYN problems up the > Kazoo, migraines, joing > pain, etc. and was told for years that I had an overactive imagination, it > was all in my head, and to > just plain snap out of it. Well, hello-0-0-o. Now I have SLE, RA, Anemia, > Ulcers, Diabetes, Fibromyalgia, chronic Lyme's, Sjogren's, and congestive > heart failure, and have lost a percentage of > my kidney function. Am I ready to leave the planet? Nope. If God takes > me, ok, but I ain't askin'. > > I don't know what my contribution to the world is or has been, but I know I > am not done speaking my > mind. LOL I'm sure there are those who wish I'd shut up and shuffle off > this mortal coil, but I do > get a charge out of stating my opinions, arguing with puffed up people, and > proving naysayers wrong. > Must be what keeps me alive. LOL I am a stubborn old woman, that's for > sure. Teehee. > > I hope you find the strength and humor you need to keep on keeping on, honey. > I love you. MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 > Sunny, I have been living with Lupus since I was ten. That's 45 years > now. I wasn't officially > diagnosed until I hit 30, and even then it was followed by the word " suspect " > on my chart until just > last year. I suffered all through my childhood, puberty, and young > adulthood with pain, fatigue, > fevers, mysterious illnesses with no known cause, OB-GYN problems up the > Kazoo, migraines, joing > pain, etc. and was told for years that I had an overactive imagination, it > was all in my head, and to > just plain snap out of it. Well, hello-0-0-o. Now I have SLE, RA, Anemia, > Ulcers, Diabetes, Fibromyalgia, chronic Lyme's, Sjogren's, and congestive > heart failure, and have lost a percentage of > my kidney function. Am I ready to leave the planet? Nope. If God takes > me, ok, but I ain't askin'. > > I don't know what my contribution to the world is or has been, but I know I > am not done speaking my > mind. LOL I'm sure there are those who wish I'd shut up and shuffle off > this mortal coil, but I do > get a charge out of stating my opinions, arguing with puffed up people, and > proving naysayers wrong. > Must be what keeps me alive. LOL I am a stubborn old woman, that's for > sure. Teehee. > > I hope you find the strength and humor you need to keep on keeping on, honey. > I love you. MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Thank you so much for this. I am so sorry to hear you have had the wolf in your life ALL of your life. I was bestowed during my first pregnancy. I praise God for the years I did have that were healthy. I can only imagine what it must be like for you to have virtually never had any good years without it. Maybe that is why you have such a good outlook. If I didn't have memories of what life was like BL ( Before Lupus) I might be able to cope better. But I know what I used to be able to do and I think that is one of the reasons my family treats me as they do. They expect me to still be the same person that I was when I was born. That person disappeared years ago. They compare me now to what I was then as I did ALOT and was into many hobbies and interests. Now, I can't even hold onto the paintbrush I used to use to do artwork for their homes. I can't host theme parties in my home anymore. I can't come get them when they run out of gas on the side of the road or take their kids when they want to go away for the weekend. And they resent me for it. One of the most difficult things for me with my family members is that they are all very well off. They have airplanes, fancy race cars, beach condos, large homes on lakes and take vacations every other weekend because they " need to get away. " My husband and I have never had money as I got pregnant on our honeymoon and had lupus within 6 months. I had to stop working almost immediately and he has handled the full financial load which is laden with doctor bills and medications we can't afford, but have to have. I am the black sheep of my family simply because we are not well off. I listen to all the wonderful things they are doing and all the blessings they have ( one is building a very expensive addition onto a very expensive house and is " upset " as it is so hard to deal with all the problems). I am always happy for them when all the good things continue to happen to them. But when I dare step out and talk about MY life, I am shut down immediately and told I should buck up. Then I have to listen to all the financial mistakes we have made ( in their eyes) and how our situation is our own fault. THAT is the reason I feel a knife in my heart nearly every time I have contact with them. I know having no contact would be the best solution, but my parents are elderly now and I just can't do that... for ME, not them. Once I broke down and told one of them that it hurt to hear all the good things when my life is so full of not so good things. Instead of saying they are sorry for that, I got Lecture #50,000 about how I had MANY blessings... blah blah blah. Too bad I can barely feed those TWO blessings.. my kids. This latest situation with my health is due to the fact I stepped out and actually asked for help since my health is taking a dive and I need some support. THAT was the biggest mistake I have made in a long time. They only took me down much more. I won't do it again and am now not talking at ALL about myself. And I get in trouble for THAT! Can't win... Again, I thank you all for your kindness and support. You ( and tranquilizers (: are helping me dig out. Love to you all, Sunny > Sunny, I have been living with Lupus since I was ten. That's 45 years > now. I wasn't officially > diagnosed until I hit 30, and even then it was followed by the word " suspect " > on my chart until just > last year. I suffered all through my childhood, puberty, and young > adulthood with pain, fatigue, > fevers, mysterious illnesses with no known cause, OB-GYN problems up the > Kazoo, migraines, joing > pain, etc. and was told for years that I had an overactive imagination, it > was all in my head, and to > just plain snap out of it. Well, hello-0-0-o. Now I have SLE, RA, Anemia, > Ulcers, Diabetes, Fibromyalgia, chronic Lyme's, Sjogren's, and congestive > heart failure, and have lost a percentage of > my kidney function. Am I ready to leave the planet? Nope. If God takes > me, ok, but I ain't askin'. > > I don't know what my contribution to the world is or has been, but I know I > am not done speaking my > mind. LOL I'm sure there are those who wish I'd shut up and shuffle off > this mortal coil, but I do > get a charge out of stating my opinions, arguing with puffed up people, and > proving naysayers wrong. > Must be what keeps me alive. LOL I am a stubborn old woman, that's for > sure. Teehee. > > I hope you find the strength and humor you need to keep on keeping on, honey. > I love you. MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Sunny, You can gripe, complain, and talk about yourself all you want here. We all go through the blues. I know what you mean about “your old self”. I used to be very athletic. I was a tom-boy, climbed trees, horseback riding, skates, running through the woods, swimming, diving, dancing, etc. My husband and I used to hike and bird watch and ballroom dance twice a week. I went to the gym 3 times a week and had a good figure. I miss my old life. My husband misses it too. The fact that I can’t work freaked him out and we bought this house on 2 incomes. We have had quite a struggle with only his income. We have had horrible luck ever since I got cancer 8 years ago. He has had 2 nervous breakdowns. Oh well, that’s life! Hay, for your own good and your own health, don’t talk to your family for awhile, at least until you get over your depression. I mean that! You need the mental rest! What they are doing to you is not fair. It sounds like you have been bending over backwards trying to win their love for years. They are not loveable (sorry) people so let it go. Your husband is a great guy and you need to make him feel good when he comes home from work. Think of him and let the others go. Screen your calls with the voice-mail and don’t talk to your relatives for awhile and your husband will find a happier face when he comes home. I hope I don’t make you mad by saying these things Sunny. From: sunnione4 Sent: Monday, August 23, 2004 7:19 AM To: LUPIES Subject: Re: Sunny .. I praise God for the years I did have that were healthy. I can only imagine what it must be like for you to have virtually never had any good years without it. Maybe that is why you have such a good outlook. If I didn't have memories of what life was like BL ( Before Lupus) I might be able to cope better. But I know what I used to be able to do and I think that is one of the reasons my family treats me as they do. One of the most difficult things for me with my family members is that they are all very well off. They have airplanes, fancy race cars, beach condos, large homes on lakes and take vacations every other weekend because they " need to get away. " My husband and I have never had money as I got pregnant on our honeymoon and had lupus within 6 months. I had to stop working almost immediately and he has handled the full financial load which is laden with doctor bills and medications we can't afford, but have to have. I am the black sheep of my family simply because we are not well off. This latest situation with my health is due to the fact I stepped out and actually asked for help since my health is taking a dive and I need some support. THAT was the biggest mistake I have made in a long time. They only took me down much more. Sunny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Sunny, You can gripe, complain, and talk about yourself all you want here. We all go through the blues. I know what you mean about “your old self”. I used to be very athletic. I was a tom-boy, climbed trees, horseback riding, skates, running through the woods, swimming, diving, dancing, etc. My husband and I used to hike and bird watch and ballroom dance twice a week. I went to the gym 3 times a week and had a good figure. I miss my old life. My husband misses it too. The fact that I can’t work freaked him out and we bought this house on 2 incomes. We have had quite a struggle with only his income. We have had horrible luck ever since I got cancer 8 years ago. He has had 2 nervous breakdowns. Oh well, that’s life! Hay, for your own good and your own health, don’t talk to your family for awhile, at least until you get over your depression. I mean that! You need the mental rest! What they are doing to you is not fair. It sounds like you have been bending over backwards trying to win their love for years. They are not loveable (sorry) people so let it go. Your husband is a great guy and you need to make him feel good when he comes home from work. Think of him and let the others go. Screen your calls with the voice-mail and don’t talk to your relatives for awhile and your husband will find a happier face when he comes home. I hope I don’t make you mad by saying these things Sunny. From: sunnione4 Sent: Monday, August 23, 2004 7:19 AM To: LUPIES Subject: Re: Sunny .. I praise God for the years I did have that were healthy. I can only imagine what it must be like for you to have virtually never had any good years without it. Maybe that is why you have such a good outlook. If I didn't have memories of what life was like BL ( Before Lupus) I might be able to cope better. But I know what I used to be able to do and I think that is one of the reasons my family treats me as they do. One of the most difficult things for me with my family members is that they are all very well off. They have airplanes, fancy race cars, beach condos, large homes on lakes and take vacations every other weekend because they " need to get away. " My husband and I have never had money as I got pregnant on our honeymoon and had lupus within 6 months. I had to stop working almost immediately and he has handled the full financial load which is laden with doctor bills and medications we can't afford, but have to have. I am the black sheep of my family simply because we are not well off. This latest situation with my health is due to the fact I stepped out and actually asked for help since my health is taking a dive and I need some support. THAT was the biggest mistake I have made in a long time. They only took me down much more. Sunny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Of course you don't make me mad! I appreciate your support. I am doing better today with some medication. But my body is only being faked out to think I am better, of course. I never take steroids well and that is part of why I am depressed. I know I have to take them and they make me even sicker. I have to take other meds to counteract the reactions and then I get lethargic. It is a vicious cycle. I hate this dang disease. I wish I had the money and energy to lobby for finding a cure. If even one celebrity had it, we could get some help scientifically. One of the Backstreet Boys, Howie Dorough, had a sister who died of Lupus. He put on a great concert here in Orlando to raise money for Lupus research. There was a glimmer of activity with more of the public being educated about us, but when the Backstreet Boys lost their spot on the charts, so did the spotlight on lupus. Someday.. sigh.... > Sunny, > > You can gripe, complain, and talk about yourself all you want here. We all > go through the blues. I know what you mean about " your old self " . I used > to be very athletic. I was a tom-boy, climbed trees, horseback riding, > skates, running through the woods, swimming, diving, dancing, etc. My > husband and I used to hike and bird watch and ballroom dance twice a week. > I went to the gym 3 times a week and had a good figure. I miss my old life. > My husband misses it too. The fact that I can't work freaked him out and we > bought this house on 2 incomes. We have had quite a struggle with only his > income. We have had horrible luck ever since I got cancer 8 years ago. He > has had 2 nervous breakdowns. Oh well, that's life! > > Hay, for your own good and your own health, don't talk to your family for > awhile, at least until you get over your depression. I mean that! You need > the mental rest! What they are doing to you is not fair. It sounds like > you have been bending over backwards trying to win their love for years. > They are not loveable (sorry) people so let it go. Your husband is a great > guy and you need to make him feel good when he comes home from work. Think > of him and let the others go. Screen your calls with the voice- mail and > don't talk to your relatives for awhile and your husband will find a happier > face when he comes home. I hope I don't make you mad by saying these things > Sunny. > http://www.mymailsignature.com> > > > > _____ > > From: sunnione4 [mailto:sunnione4@y...] > Sent: Monday, August 23, 2004 7:19 AM > To: LUPIES > Subject: Re: Sunny > > > > . I praise God for the years I did have that were healthy. I > can only imagine what it must be like for you to have virtually never > had any good years without it. Maybe that is why you have such a good > outlook. If I didn't have memories of what life was like BL ( Before > Lupus) I might be able to cope better. But I know what I used to be > able to do and I think that is one of the reasons my family treats me > as they do. One of the most difficult things for me with my family members > is > that they are all very well off. They have airplanes, fancy race > cars, beach condos, large homes on lakes and take vacations every > other weekend because they " need to get away. " My husband and I have > never had money as I got pregnant on our honeymoon and had lupus > within 6 months. I had to stop working almost immediately and he has > handled the full financial load which is laden with doctor bills and > medications we can't afford, but have to have. I am the black sheep > of my family simply because we are not well off. > This latest situation with my health is due to the fact I stepped out > and actually asked for help since my health is taking a dive and I > need some support. > THAT was the biggest mistake I have made in a long time. They only > took me down much more. > > Sunny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Of course you don't make me mad! I appreciate your support. I am doing better today with some medication. But my body is only being faked out to think I am better, of course. I never take steroids well and that is part of why I am depressed. I know I have to take them and they make me even sicker. I have to take other meds to counteract the reactions and then I get lethargic. It is a vicious cycle. I hate this dang disease. I wish I had the money and energy to lobby for finding a cure. If even one celebrity had it, we could get some help scientifically. One of the Backstreet Boys, Howie Dorough, had a sister who died of Lupus. He put on a great concert here in Orlando to raise money for Lupus research. There was a glimmer of activity with more of the public being educated about us, but when the Backstreet Boys lost their spot on the charts, so did the spotlight on lupus. Someday.. sigh.... > Sunny, > > You can gripe, complain, and talk about yourself all you want here. We all > go through the blues. I know what you mean about " your old self " . I used > to be very athletic. I was a tom-boy, climbed trees, horseback riding, > skates, running through the woods, swimming, diving, dancing, etc. My > husband and I used to hike and bird watch and ballroom dance twice a week. > I went to the gym 3 times a week and had a good figure. I miss my old life. > My husband misses it too. The fact that I can't work freaked him out and we > bought this house on 2 incomes. We have had quite a struggle with only his > income. We have had horrible luck ever since I got cancer 8 years ago. He > has had 2 nervous breakdowns. Oh well, that's life! > > Hay, for your own good and your own health, don't talk to your family for > awhile, at least until you get over your depression. I mean that! You need > the mental rest! What they are doing to you is not fair. It sounds like > you have been bending over backwards trying to win their love for years. > They are not loveable (sorry) people so let it go. Your husband is a great > guy and you need to make him feel good when he comes home from work. Think > of him and let the others go. Screen your calls with the voice- mail and > don't talk to your relatives for awhile and your husband will find a happier > face when he comes home. I hope I don't make you mad by saying these things > Sunny. > http://www.mymailsignature.com> > > > > _____ > > From: sunnione4 [mailto:sunnione4@y...] > Sent: Monday, August 23, 2004 7:19 AM > To: LUPIES > Subject: Re: Sunny > > > > . I praise God for the years I did have that were healthy. I > can only imagine what it must be like for you to have virtually never > had any good years without it. Maybe that is why you have such a good > outlook. If I didn't have memories of what life was like BL ( Before > Lupus) I might be able to cope better. But I know what I used to be > able to do and I think that is one of the reasons my family treats me > as they do. One of the most difficult things for me with my family members > is > that they are all very well off. They have airplanes, fancy race > cars, beach condos, large homes on lakes and take vacations every > other weekend because they " need to get away. " My husband and I have > never had money as I got pregnant on our honeymoon and had lupus > within 6 months. I had to stop working almost immediately and he has > handled the full financial load which is laden with doctor bills and > medications we can't afford, but have to have. I am the black sheep > of my family simply because we are not well off. > This latest situation with my health is due to the fact I stepped out > and actually asked for help since my health is taking a dive and I > need some support. > THAT was the biggest mistake I have made in a long time. They only > took me down much more. > > Sunny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hay, Fake it till you make it! No harm in using meds to help us in life! From: sunnione4 Sent: Monday, August 23, 2004 3:33 PM To: LUPIES Subject: Re: Sunny Of course you don't make me mad! I appreciate your support. I am doing better today with some medication. But my body is only being faked out to think I am better, of course. I never take steroids well and that is part of why I am depressed. I know I have to take them and they make me even sicker. I have to take other meds to counteract the reactions and then I get lethargic. Express yourself with over 8,000 FREE Email Smileys - click here! Get your FREE personalized email signature at My Mail Signature! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hay, Fake it till you make it! No harm in using meds to help us in life! From: sunnione4 Sent: Monday, August 23, 2004 3:33 PM To: LUPIES Subject: Re: Sunny Of course you don't make me mad! I appreciate your support. I am doing better today with some medication. But my body is only being faked out to think I am better, of course. I never take steroids well and that is part of why I am depressed. I know I have to take them and they make me even sicker. I have to take other meds to counteract the reactions and then I get lethargic. Express yourself with over 8,000 FREE Email Smileys - click here! Get your FREE personalized email signature at My Mail Signature! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 hit La. at a category five. I spent the nite in a bathroom with two teenagers, two dogs and two cats and listened to the wind howl...I remember ... They are also saying that it may enter the Gulf...then it will affect us... Don't you just wish it would just dry up or something...I do... Good luck down there in Fla. sunny...and wish us luck in La. just in case. chippy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 > remember ... > > > Good luck down there in Fla. sunny...and wish us luck in La. just in > case. chippy Hi Chippy You got it! I had forgotten that took a second hit to you! We had all hoped we would never see a Cat 5 again. Ever. Your suggestion of it drying up sounds good to me! My prayer is for it to go north RIGHT NOW... but poor old Bermuda would probably be wiped out. They need to move that island out of there.. .lol.. then we can banish all the hurricanes up the north central Atlantic without anyone getting a " visit " . I say Go away, Frances. We banish you, troll.. back under the bridge! Sunny ( and would like to stay that way...lol) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Sunny, Forgot to mention that yes while GERD is definitely associated with most types of interstitial lung disease a causal relationship has not been established. It's a real chicken vs egg puzzle. The problem I have with the theory that the inhaled acid droplets begin the scarring process is that you would expect to see the scarring in the upper lobes of our lungs first. That is almost never the case. The scarring almost always begins at the bases of our lungs and spreads upward. Whether GERD is part of an overall autoimmune disease process that they have not identified yet, who knows? What is true is that pulmonary fibrosis (lung scarring) is a complication of many autoimmune diseases. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, February 28, 2009 7:57:57 AMSubject: Sunny Good morning and welcome! We tell everyone who joins us that we're sorry you had reason to look for a group like this but since you did we're glad you found us. Believe me all of us understand what it feels like to be absolutely overwhelmed and completely stressed just when we need the most peace and rest. My situation is not too different from yours. I'm 49 and was diagnosed with NSIP (non-specific interstitial pneumonitis) in June of 06, GERD later that year, and in November of 08 Dermatomyositis (an auto-immune disease that causes rashes and muscle inflammation and weakness). Like you, I've lost about 60% of my overall lung function and capacity but unlike you I've been on oxygen since my diagnosis. I too can sit at rest and have my sats stay in the mid to high 90's but the minute I do anything else, even just talk on the phone and they begin to drop. If I tried to walk, even from room to room in my home, my sats would drop into the 70's within a couple of minutes. Have your doctors done something simple like a 6 minute walk? You might want to ask your doctor about that. Do you own and oximeter? This fairly inexpensive tool will help you know for sure whether you should be on supplemental O2 and will give you evidence you can take back to your physician if you need to. You mention that you are considering looking for another opinion, I would absolutely encourage you to do that. The fact that your pulmo seemed "annoyed" that you cried when hearing your diagnosis is a huge red flag for me. Why should you have to put yourself in the hands of someone who clearly lacks empathy or even basic human compassion? You don't say where you live but one suggestion I would make is to get yourself to a university medical center with specialists in interstitial lung disease. If you go to www.ipfnet.org you will find a list of research centers dedicated to pulmonary fibrosis and patients who have these diseases. I get my care at Duke in North Carolina. Even if you don't live close enough to one of the centers on the list it can be worth the effort to get to one of them to be evaluated. There is much information and understanding to be gained. Please hang around here. I joined this group in July of 2006 shortly after my diagnosis. I was terrified and didn't know if I'd be alive to see that next Christmas. Thanks to the grace of God, my doctors and the care I've received, I'm still here almost 3 years later. None of us knows what will happen tomorrow but one of our members (thanks Peggy) likes to remind us all that we don't come with an expiration date tatooed on our fannies. Remember that! Sunny, I hope that you find all the information you are looking for here and just as important I hope you find the support and friendship that this board has blessed me with. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Sunny, Forgot to mention that yes while GERD is definitely associated with most types of interstitial lung disease a causal relationship has not been established. It's a real chicken vs egg puzzle. The problem I have with the theory that the inhaled acid droplets begin the scarring process is that you would expect to see the scarring in the upper lobes of our lungs first. That is almost never the case. The scarring almost always begins at the bases of our lungs and spreads upward. Whether GERD is part of an overall autoimmune disease process that they have not identified yet, who knows? What is true is that pulmonary fibrosis (lung scarring) is a complication of many autoimmune diseases. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, February 28, 2009 7:57:57 AMSubject: Sunny Good morning and welcome! We tell everyone who joins us that we're sorry you had reason to look for a group like this but since you did we're glad you found us. Believe me all of us understand what it feels like to be absolutely overwhelmed and completely stressed just when we need the most peace and rest. My situation is not too different from yours. I'm 49 and was diagnosed with NSIP (non-specific interstitial pneumonitis) in June of 06, GERD later that year, and in November of 08 Dermatomyositis (an auto-immune disease that causes rashes and muscle inflammation and weakness). Like you, I've lost about 60% of my overall lung function and capacity but unlike you I've been on oxygen since my diagnosis. I too can sit at rest and have my sats stay in the mid to high 90's but the minute I do anything else, even just talk on the phone and they begin to drop. If I tried to walk, even from room to room in my home, my sats would drop into the 70's within a couple of minutes. Have your doctors done something simple like a 6 minute walk? You might want to ask your doctor about that. Do you own and oximeter? This fairly inexpensive tool will help you know for sure whether you should be on supplemental O2 and will give you evidence you can take back to your physician if you need to. You mention that you are considering looking for another opinion, I would absolutely encourage you to do that. The fact that your pulmo seemed "annoyed" that you cried when hearing your diagnosis is a huge red flag for me. Why should you have to put yourself in the hands of someone who clearly lacks empathy or even basic human compassion? You don't say where you live but one suggestion I would make is to get yourself to a university medical center with specialists in interstitial lung disease. If you go to www.ipfnet.org you will find a list of research centers dedicated to pulmonary fibrosis and patients who have these diseases. I get my care at Duke in North Carolina. Even if you don't live close enough to one of the centers on the list it can be worth the effort to get to one of them to be evaluated. There is much information and understanding to be gained. Please hang around here. I joined this group in July of 2006 shortly after my diagnosis. I was terrified and didn't know if I'd be alive to see that next Christmas. Thanks to the grace of God, my doctors and the care I've received, I'm still here almost 3 years later. None of us knows what will happen tomorrow but one of our members (thanks Peggy) likes to remind us all that we don't come with an expiration date tatooed on our fannies. Remember that! Sunny, I hope that you find all the information you are looking for here and just as important I hope you find the support and friendship that this board has blessed me with. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Beth, Thank you so much. It really worried me when I received that e-mail. This site has helped me so much already. I thank God for you all. Sunny From: Beth Sent: Thursday, March 05, 2009 4:33 AM To: Breathe-Support Subject: Sunny Sunny I don't know what type of email you got from Yahoo but your messages are coming through to the board just fine. I checked your membership and there's no issue. You didn't break any kind of rule here so whatever email you got from Yahoo has nothing to do with Breathe Support. As I said, I just double checked your membership and everything appears to be fine, messages are not bouncing and everything looks great. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Thursday, March 5, 2009 1:22:01 AMSubject: Re: Re: ILD/Pulm. Fibrosis Jan, I don't know if you will get this as I was just notified by Yahoo that I violated some rule. It has to be a mistake but it is still hurtful. I have been reading a lot and there is much research to suggest the GERD and Sjogrens can be factors. Since I have both I think one of my 7 docs should have been paying closer attention but in reality it would not have made much difference. My sputum report said massive infection so I am on antibiotics now. Had my ct today and they gave me a cd and I will get the report tomorrow. My pulmo guy is taking March off so I guess he'll tell me his take then. It is all very scary. I hope Yahoo doesn't kick me off this site as it has helped me so much already. Sunny From: Jan Sent: Monday, March 02, 2009 10:17 AM To: Breathe-Support@ yahoogroups. com Subject: Re: ILD/Pulm. Fibrosis > Hi, RPickle Most patients have lost at least 50% of their lung capacity by the time they are diagnosed with PF Is that because we wait too long to see a doctor, thinking we are just out of shape or we are just tired....or maybe the doctor we see just doesn't pick up on it right away...no one knows why it takes so long to get diagnosed. Maybe it is just that we do not feel the symptoms until we have had the disease for a while and lose our lung function...I know it took three months for me to get diagnosed because medical standards require you to see a primary care doc, then with sob symtoms he sends you to a cardiologist for heart testing and if they find nothing it is on to a pulmonologist for lung testing. My lung doctor was excellent, but every test kept coming back normal even though my pulse ox was below 90 and I could barely speak a complete sentence. Not until he had done three Cat Scans (all normal) did he finally order a High Resolution Cat Scan, which showed the scarring and we went on to an open lung biopsy which gave the final answer of PF.You have a lot of autoimmune issues of which PF fits right in there! They keep trying to blame my PF on my having Crohns disease, another autoimmune disease....however my GI says he has never, ever seen Crohns causing PF or any other lung problem in his whole career....so I don't really think it is. Once you get one autoimmune it is possible to develop others...as you and I both have found out. It just means our autoimmune system is out of whack and again, no one knows how to make it work right again either. Most people with PF or any other inflammatory disease will always have a high Sed Rate. It is in itself a marker for high much inflammatory processes are going on inside you. With a patient with Rheumatoid Artheritis, a Sed Rate abnormally high, means their arthritis is very active at that point and is why their pain level is higher than normal, etc.I sure wish you didn't have to suffer with all this, just know you are in good company here and there are a lot of people who have traveled this road ahead of you, that can answer and lend you support !> > t> From: rpickel1@... <rpickel1@.. .>> Subject: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 12:05 AM> > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have> Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does> any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Beth, Thank you so much. It really worried me when I received that e-mail. This site has helped me so much already. I thank God for you all. Sunny From: Beth Sent: Thursday, March 05, 2009 4:33 AM To: Breathe-Support Subject: Sunny Sunny I don't know what type of email you got from Yahoo but your messages are coming through to the board just fine. I checked your membership and there's no issue. You didn't break any kind of rule here so whatever email you got from Yahoo has nothing to do with Breathe Support. As I said, I just double checked your membership and everything appears to be fine, messages are not bouncing and everything looks great. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Thursday, March 5, 2009 1:22:01 AMSubject: Re: Re: ILD/Pulm. Fibrosis Jan, I don't know if you will get this as I was just notified by Yahoo that I violated some rule. It has to be a mistake but it is still hurtful. I have been reading a lot and there is much research to suggest the GERD and Sjogrens can be factors. Since I have both I think one of my 7 docs should have been paying closer attention but in reality it would not have made much difference. My sputum report said massive infection so I am on antibiotics now. Had my ct today and they gave me a cd and I will get the report tomorrow. My pulmo guy is taking March off so I guess he'll tell me his take then. It is all very scary. I hope Yahoo doesn't kick me off this site as it has helped me so much already. Sunny From: Jan Sent: Monday, March 02, 2009 10:17 AM To: Breathe-Support@ yahoogroups. com Subject: Re: ILD/Pulm. Fibrosis > Hi, RPickle Most patients have lost at least 50% of their lung capacity by the time they are diagnosed with PF Is that because we wait too long to see a doctor, thinking we are just out of shape or we are just tired....or maybe the doctor we see just doesn't pick up on it right away...no one knows why it takes so long to get diagnosed. Maybe it is just that we do not feel the symptoms until we have had the disease for a while and lose our lung function...I know it took three months for me to get diagnosed because medical standards require you to see a primary care doc, then with sob symtoms he sends you to a cardiologist for heart testing and if they find nothing it is on to a pulmonologist for lung testing. My lung doctor was excellent, but every test kept coming back normal even though my pulse ox was below 90 and I could barely speak a complete sentence. Not until he had done three Cat Scans (all normal) did he finally order a High Resolution Cat Scan, which showed the scarring and we went on to an open lung biopsy which gave the final answer of PF.You have a lot of autoimmune issues of which PF fits right in there! They keep trying to blame my PF on my having Crohns disease, another autoimmune disease....however my GI says he has never, ever seen Crohns causing PF or any other lung problem in his whole career....so I don't really think it is. Once you get one autoimmune it is possible to develop others...as you and I both have found out. It just means our autoimmune system is out of whack and again, no one knows how to make it work right again either. Most people with PF or any other inflammatory disease will always have a high Sed Rate. It is in itself a marker for high much inflammatory processes are going on inside you. With a patient with Rheumatoid Artheritis, a Sed Rate abnormally high, means their arthritis is very active at that point and is why their pain level is higher than normal, etc.I sure wish you didn't have to suffer with all this, just know you are in good company here and there are a lot of people who have traveled this road ahead of you, that can answer and lend you support !> > t> From: rpickel1@... <rpickel1@.. .>> Subject: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 12:05 AM> > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have> Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does> any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Beth, Thank you so much. It really worried me when I received that e-mail. This site has helped me so much already. I thank God for you all. Sunny From: Beth Sent: Thursday, March 05, 2009 4:33 AM To: Breathe-Support Subject: Sunny Sunny I don't know what type of email you got from Yahoo but your messages are coming through to the board just fine. I checked your membership and there's no issue. You didn't break any kind of rule here so whatever email you got from Yahoo has nothing to do with Breathe Support. As I said, I just double checked your membership and everything appears to be fine, messages are not bouncing and everything looks great. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Thursday, March 5, 2009 1:22:01 AMSubject: Re: Re: ILD/Pulm. Fibrosis Jan, I don't know if you will get this as I was just notified by Yahoo that I violated some rule. It has to be a mistake but it is still hurtful. I have been reading a lot and there is much research to suggest the GERD and Sjogrens can be factors. Since I have both I think one of my 7 docs should have been paying closer attention but in reality it would not have made much difference. My sputum report said massive infection so I am on antibiotics now. Had my ct today and they gave me a cd and I will get the report tomorrow. My pulmo guy is taking March off so I guess he'll tell me his take then. It is all very scary. I hope Yahoo doesn't kick me off this site as it has helped me so much already. Sunny From: Jan Sent: Monday, March 02, 2009 10:17 AM To: Breathe-Support@ yahoogroups. com Subject: Re: ILD/Pulm. Fibrosis > Hi, RPickle Most patients have lost at least 50% of their lung capacity by the time they are diagnosed with PF Is that because we wait too long to see a doctor, thinking we are just out of shape or we are just tired....or maybe the doctor we see just doesn't pick up on it right away...no one knows why it takes so long to get diagnosed. Maybe it is just that we do not feel the symptoms until we have had the disease for a while and lose our lung function...I know it took three months for me to get diagnosed because medical standards require you to see a primary care doc, then with sob symtoms he sends you to a cardiologist for heart testing and if they find nothing it is on to a pulmonologist for lung testing. My lung doctor was excellent, but every test kept coming back normal even though my pulse ox was below 90 and I could barely speak a complete sentence. Not until he had done three Cat Scans (all normal) did he finally order a High Resolution Cat Scan, which showed the scarring and we went on to an open lung biopsy which gave the final answer of PF.You have a lot of autoimmune issues of which PF fits right in there! They keep trying to blame my PF on my having Crohns disease, another autoimmune disease....however my GI says he has never, ever seen Crohns causing PF or any other lung problem in his whole career....so I don't really think it is. Once you get one autoimmune it is possible to develop others...as you and I both have found out. It just means our autoimmune system is out of whack and again, no one knows how to make it work right again either. Most people with PF or any other inflammatory disease will always have a high Sed Rate. It is in itself a marker for high much inflammatory processes are going on inside you. With a patient with Rheumatoid Artheritis, a Sed Rate abnormally high, means their arthritis is very active at that point and is why their pain level is higher than normal, etc.I sure wish you didn't have to suffer with all this, just know you are in good company here and there are a lot of people who have traveled this road ahead of you, that can answer and lend you support !> > t> From: rpickel1@... <rpickel1@.. .>> Subject: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 12:05 AM> > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have> Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does> any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sher, I showed him the oximeter that Jack had sent to me. He said "those things are notoriously unreliable" and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over "Hey, how do I get to the other side?" Second Okie hollars back, "Duh, you are on the other side." What do you call pallbearers at an Okie funeral? Kariokes State Trooper stops an Okie, walks up to the window and says "You got any ID?" Okie says id about what? There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto "We got rocks.") and not Oklahoma (state motto "We got dirt.") Sunny From: Sher Bauman Sent: Wednesday, April 22, 2009 4:25 PM To: Breathe-Support Subject: Re: Sunny Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. Sunny, the majority of the board will no doubt agree with MB here...consider what she says... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sher, I showed him the oximeter that Jack had sent to me. He said "those things are notoriously unreliable" and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over "Hey, how do I get to the other side?" Second Okie hollars back, "Duh, you are on the other side." What do you call pallbearers at an Okie funeral? Kariokes State Trooper stops an Okie, walks up to the window and says "You got any ID?" Okie says id about what? There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto "We got rocks.") and not Oklahoma (state motto "We got dirt.") Sunny From: Sher Bauman Sent: Wednesday, April 22, 2009 4:25 PM To: Breathe-Support Subject: Re: Sunny Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. Sunny, the majority of the board will no doubt agree with MB here...consider what she says... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sunny I second, third, fourth and fifth what MB said. There are certain debatable issues regarding PF and things one would call doctor's judgement. However, there are things that pulmonologists say or do that are wrong whether they show a lack of knowledge of PF or a lack of patient consideration or an attitude that's inappropriate. Your doctor has moved beyond the grey zone and into the wrong zone. He is WRONG about the oximeter. Many members have checked it. It is subject to the same standards as any FDA approved oximeter. I say this even though I have a Nonin, which is what the doctor's generally have. I bought mine before I found the $65 one. Also, the source Jack bought it from is the largest seller of oximeters from what I've read. He is WRONG in not testing you further and having concern about oxygen. If you drop to 91 on what you described you're almost certain to drop well below 90 if you did a six minute walk and even further upon certain exertion. He's not even using the medically standard evaluations. He's showing a COPD attitude where the drops aren't so drastic. As to the lack of an echocardiogram. Did they not do one before the biopsy? If one hasn't been done, he should have already scheduled one. You don't need to see a cardiologist first. But anyone with PF should have had an echo. PH is our a fear to be treated with the utmost respect. Let us know what he says but then get to someone, at the very least for a second opinion, who has more experience with ILD's. As to what he says tomorrow, don't overreact because based on what we've seen so far from him, I can only imagine how it will go. We are here for you. We don't casually criticize a doctor, but when he's exposing you to potential harm and criticizing your choices to monitor yourself and provide him with additional information then he's falling outside those most of us would recommend. That brings us to the biopsy. Make sure the slides are not just reviewed locally but sent to ILD experts for review. Pathologists experience with ILD's varies too. Mine was sent by the Pathologist to Mayo in sdale (yes, that is considered Mayo's best for this purpose) and then read again at the University of Chicago when I went there. The last thing you want is to have gone through a biopsy only to have a reading of the results that you can't trust. > > Sunny, > I don't know why your doctor is so reluctant to prescribe oxygen. I have to tell you that the doctors visit you described scares the daylights out of me. I hate to be this blunt but Sunny you need a new pulmonologist. If your sats dropped to 91 after two laps around a desk what are they doing when you go up a flight of stairs, or walk through the supermarket? He said your oximeter is " unreliable " ? If it's approved by the FDA it's as reliable as the one he has in his office. > Many members here have had experiences with doctors like you describe. Have you considered switching pulmos? I've probably asked that before, my memory is kind of shot but Sunny this is so important. Many pulmos just don't know alot about interstitial lung disease. A specialist in ILD can really help you make sense of this. > > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: " rpickel1@... " rpickel1@... > To: Breathe-Support > Sent: Wednesday, April 22, 2009 4:57:39 PM > Subject: Re: Sher > > > > > > Beth, > I have to take prednisone for my Lupus and Sjogrens and Arthritis. I am miserable without it. I only take 30mg a day so maybe that's why I don't have any side effects. At least I don't think so. I do sleep a lot but being in pain wears me out so that might be all it is. They are saying that I have had IPF for a lot longer than I realized and I am wondering if the reason it took so long to be diagnosed was because I have been on prednisone for 3 years. I had my lung biopsy last Monday and called for results today. They said I had to come and see the doctor. That scares me cause it must be bad news. They did a night oxymeter and it was bad so I will be going on night O2. My pulmo doc is reluctant to give me a 24 hour oxymeter and says the finger one I have is unreliable. I told him my results from it were showing my oxygen dropping below 80% with moderate exercise. In the doctor's office after two laps around the desk it dropped to > 91% and my heart rate went to 186. Pulmo dude is calling my heart doctor to discuss the pulse rate as he thinks something might be wrong with the right side of my heart. I don't want to go on O2 but I am tired of feeling exhausted and almost passing out so many times a day. Why are doctor's so reluctant to give us O2? > Sunny, IPF, 09 Idaho > > > From: Beth > Sent: Saturday, April 18, 2009 11:09 AM > To: Breathe-Support@ yahoogroups. com > Subject: Sher > > Sher, > Some people report increased energy when on higher doses of prednisone. It can be a jittery, restless kind of energy and insomnia usually goes along with it. I never found it to be a productive kind of energy, it didn't allow me to accomplish anything extra. Even with that change that prednisone can make in some of us we're still limited by our diseased lungs. At least that's my experience. I know that others have been through different scenarios related to prednisone. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Sher Bauman bofus (AT) wbcable (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Saturday, April 18, 2009 12:22:50 PM > Subject: Re: Hi Sher > > > BJ... I did miss the post... > I'm crossing my fingers for a good sale. > I guess it's not doable for your daughter to come to you and help you move. I'm sure you thought of that. > Gosh BJ you just can't do that move alone. I don't mean to be intrusive but can you hire help or can your kids hire help? Often high school boys are looking for work. Or now, grown men need the work! > Please don't do that by yourself! It's just too much for women of our 'delicate persuasion'. ;o) > I can't tell from your post... are you using O2 when you away from home? If not that sure could be dragging you down. > With my limited knowledge of prednisone (Hey, MB...give us a hand here) I think it gives you energy. At least at some level. Maybe the dosage has something to do with it... > I think you know when you are " progressing " BJ... being 'tired' after being out may not be progression. .. > Talk to your dr about your meds/O2 and what fears your sister has for you. > You could call the Police Dept and inquire about the incident.... let's hope that gives you confidence! > Do take care now! > > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > Hi Sher > > Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), > with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. > > My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. > > What has been going on with you? You have usually been the " rock " of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. > Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. > Hope you get better and back to posting!!!!! !!!! > G. UIP/ IPF 5/07 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sunny, The oximeter that Jack ordered for you is approved by the FDA for medical use. That means that it has to meet the same standards for accuracy that the oximeter in your pulmo's office does. Your current pulmo has what many would call a "proprietory" attitude, meaning that he wants to be in absolute control of any information you have regarding your lung disease. A more enlightened physician would encourage you to learn as much about your own illness and your bodies response to it as possible. I'm sorry you are having to deal with this. Good luck at your appointment tomorrow. If you can holler at him and insist that he order a 24 hour oximeter, I believe the results will be very telling. I mean he hasn't even done a 6 minute walk with you. A couple of laps around a desk do not a 6 minute walk make. Oh Sunny I"m so frustrated for you. Keep fighting, your life is worth it! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, April 22, 2009 7:52:45 PMSubject: Re: Sunny Sher, I showed him the oximeter that Jack had sent to me. He said "those things are notoriously unreliable" and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over "Hey, how do I get to the other side?" Second Okie hollars back, "Duh, you are on the other side." What do you call pallbearers at an Okie funeral? Kariokes State Trooper stops an Okie, walks up to the window and says "You got any ID?" Okie says id about what? There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto "We got rocks.") and not Oklahoma (state motto "We got dirt.") Sunny From: Sher Bauman Sent: Wednesday, April 22, 2009 4:25 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Sunny Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. Sunny, the majority of the board will no doubt agree with MB here...consider what she says... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sunny, The oximeter that Jack ordered for you is approved by the FDA for medical use. That means that it has to meet the same standards for accuracy that the oximeter in your pulmo's office does. Your current pulmo has what many would call a "proprietory" attitude, meaning that he wants to be in absolute control of any information you have regarding your lung disease. A more enlightened physician would encourage you to learn as much about your own illness and your bodies response to it as possible. I'm sorry you are having to deal with this. Good luck at your appointment tomorrow. If you can holler at him and insist that he order a 24 hour oximeter, I believe the results will be very telling. I mean he hasn't even done a 6 minute walk with you. A couple of laps around a desk do not a 6 minute walk make. Oh Sunny I"m so frustrated for you. Keep fighting, your life is worth it! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, April 22, 2009 7:52:45 PMSubject: Re: Sunny Sher, I showed him the oximeter that Jack had sent to me. He said "those things are notoriously unreliable" and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over "Hey, how do I get to the other side?" Second Okie hollars back, "Duh, you are on the other side." What do you call pallbearers at an Okie funeral? Kariokes State Trooper stops an Okie, walks up to the window and says "You got any ID?" Okie says id about what? There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto "We got rocks.") and not Oklahoma (state motto "We got dirt.") Sunny From: Sher Bauman Sent: Wednesday, April 22, 2009 4:25 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Sunny Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. Sunny, the majority of the board will no doubt agree with MB here...consider what she says... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sunny, I enjoyed your Okie jokes. My husband was from Oklahoma. Most of the vacations in my life have been to Arkansas and Oklahoma. Once he took me to the Bahamas but that was so I wouldn't complain when we also went to Arkansas and Oklahoma. Beverley Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sunny, I enjoyed your Okie jokes. My husband was from Oklahoma. Most of the vacations in my life have been to Arkansas and Oklahoma. Once he took me to the Bahamas but that was so I wouldn't complain when we also went to Arkansas and Oklahoma. Beverley Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Hi Sunny, I had a heck of a time getting my disability run thru. Keep your head up and charge forward. Wally NSIP 10/06 west Texas Subject: Re: SunnyTo: Breathe-Support Date: Wednesday, April 22, 2009, 8:54 PM Sunny, The oximeter that Jack ordered for you is approved by the FDA for medical use. That means that it has to meet the same standards for accuracy that the oximeter in your pulmo's office does. Your current pulmo has what many would call a "proprietory" attitude, meaning that he wants to be in absolute control of any information you have regarding your lung disease. A more enlightened physician would encourage you to learn as much about your own illness and your bodies response to it as possible. I'm sorry you are having to deal with this. Good luck at your appointment tomorrow. If you can holler at him and insist that he order a 24 hour oximeter, I believe the results will be very telling. I mean he hasn't even done a 6 minute walk with you. A couple of laps around a desk do not a 6 minute walk make. Oh Sunny I"m so frustrated for you. Keep fighting, your life is worth it! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, April 22, 2009 7:52:45 PMSubject: Re: Sunny Sher, I showed him the oximeter that Jack had sent to me. He said "those things are notoriously unreliable" and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over "Hey, how do I get to the other side?" Second Okie hollars back, "Duh, you are on the other side." What do you call pallbearers at an Okie funeral? Kariokes State Trooper stops an Okie, walks up to the window and says "You got any ID?" Okie says id about what? There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto "We got rocks.") and not Oklahoma (state motto "We got dirt.") Sunny From: Sher Bauman Sent: Wednesday, April 22, 2009 4:25 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Sunny Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. Sunny, the majority of the board will no doubt agree with MB here...consider what she says... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Hi Sunny, I had a heck of a time getting my disability run thru. Keep your head up and charge forward. Wally NSIP 10/06 west Texas Subject: Re: SunnyTo: Breathe-Support Date: Wednesday, April 22, 2009, 8:54 PM Sunny, The oximeter that Jack ordered for you is approved by the FDA for medical use. That means that it has to meet the same standards for accuracy that the oximeter in your pulmo's office does. Your current pulmo has what many would call a "proprietory" attitude, meaning that he wants to be in absolute control of any information you have regarding your lung disease. A more enlightened physician would encourage you to learn as much about your own illness and your bodies response to it as possible. I'm sorry you are having to deal with this. Good luck at your appointment tomorrow. If you can holler at him and insist that he order a 24 hour oximeter, I believe the results will be very telling. I mean he hasn't even done a 6 minute walk with you. A couple of laps around a desk do not a 6 minute walk make. Oh Sunny I"m so frustrated for you. Keep fighting, your life is worth it! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, April 22, 2009 7:52:45 PMSubject: Re: Sunny Sher, I showed him the oximeter that Jack had sent to me. He said "those things are notoriously unreliable" and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over "Hey, how do I get to the other side?" Second Okie hollars back, "Duh, you are on the other side." What do you call pallbearers at an Okie funeral? Kariokes State Trooper stops an Okie, walks up to the window and says "You got any ID?" Okie says id about what? There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto "We got rocks.") and not Oklahoma (state motto "We got dirt.") Sunny From: Sher Bauman Sent: Wednesday, April 22, 2009 4:25 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Sunny Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. Sunny, the majority of the board will no doubt agree with MB here...consider what she says... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 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.