Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Dilwala, Wow! You are talking about making alot of dramatic changes all at once. My reaction is why? Not why make changes, only you can decide what's appropriate for you right now but why so much and why all right now? I'm not sure about SSDI for you right now, sometimes it's tricky to qualify when your're still functioning reasonably well. I think most of us have already been oxygen dependent when we applied for SSDI. I haven't made the kind of diet changes that you're talking about so I can't say much about that. I eat well, fruits, vegetables, lean protein and complex carbs but I haven't eliminated entire classes of foods and yes I drink lowfat milk. This is what's working for me. I feel well and I'm stable, only you can decide what's right for you. You might want to think about making a couple of small changes at a time so you can actually make a judgement about what's helping and what's not helping. Small gradual changes are more sustainable over time anyway, know what I mean? We're with you no matter what! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Pred or No Pred; Thank you for responding; Homeopathic Treatment> > Thank you all for responding. Mama-Sher, your posts always put a > smile on my face. > Ok, The results are in; they vary btw "I will never take PRED" > to "PRED has been a life saver"> My biopsy reports states "chronic interstitial inflammation" . The > nurse made it clear that there was a ton of inflammation but not a > lot of fibrosis in my biopsy. The nurse was adamant (without > telling me what to do) that I get on PRED. Your responses have made > the decision much easier for me. Beth, in particular, > wrote "Part of the disease process that we have is that the > inflammation eventually scars and becomes fibrotic". Since PRED can > reduce inflammation, I have no choice but to start taking it. Now > if it causes me to lose my hair, I would be really mad. > Another good suggestion was to participate in "Evaluation for > Transplant". I don't have to commit to it while gaining valuable > information.> I was not able to complete the DLCO part of the PFT in Oct 07. I > would end up coughing. I was asked to attempt the DLCO when I > visited UCSF. At first I refused due to the phantom pain. When the > nurse stressed how important it would be for the panel to know my > diffusion capacity, I gave it a shot. My diffusion capacity came at > 38%. I think I can improve upon that number in a few months. This > is based on two main reasons. One, I will be ~6 months away from > smoking. I have not smoked since 2/2/08. Second, I'm hoping that > in a few months I will be free from this phantom pain and perhaps > give a better effort.> > Homeopathic Treatment:> > What is the consensus on homeopathic treatment? Is anyone being > treated by a homeopathic doctor? Has any one looked into it? > I have received a lot of calls from back home (Pakistan). Many > folks have recommended (with testaments) that I consider homeopathic > treatment. A family member, who is a medical doctor (MBBS), told me > that his wife was diagnosed with interstitial lung disease > approximately fifteen years ago. She has been treated with both, > steroids and the homeopathic treatment. She has maintained her > stats over the years. He recommended that I speak with two > homeopathic doctors. I did. One of those doctors also has an MD. > He sounded very optimistic after reviewing my medical records, > family history, and current symptoms. He projected that with my > current condition I `should' live a fairly normal life for another > 20+ yrs. I told him that my Pulmo is giving me "6 mo – 2 yrs" while > you are making it sound like I have a common cold. So, with a grain > of salt, I would take his prescribed medicine as well. I will > receive the homeopathic medicine in a few days. Thus, I'm eager to > find out if anyone else has already tried homeopathic treatment?> > Brett, my kids just turned thirteen. I have a twin boy/girl. My > son is a jock. He stars in baseball, basketball and football. My > daughter is the complete opposite. She is a Barbie doll. She > excels in academia. She has taken my illness very seriously. She > is internet savvy and there is a lot of depressing data out there > when it comes to UIP. I constantly assure her that I will do my > utmost to be around her for as long as I possibly can. My son, on > the other hand, does not show much emotion. He quietly went to his > room when first told of my illness. It was the day I returned from > the hospital. He did not say a word to me for a couple of days. On > third day he comes up to me and says, and I quote "hey dad, I'm > getting tired of you sitting on this sofa; why don't you go walk a > mile or something", end quote. I don't think he loves me any less > than his sister. It is just hard for us guys to show emotions. I > think daughters in general are more caring. You have a beautiful > daughter. Here is hoping that you are around when she > celebrates her fiftieth birthday. > > Dilwala > > > > > ____________ _________ _________ _________ _________ __> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Dilwala, Wow! You are talking about making alot of dramatic changes all at once. My reaction is why? Not why make changes, only you can decide what's appropriate for you right now but why so much and why all right now? I'm not sure about SSDI for you right now, sometimes it's tricky to qualify when your're still functioning reasonably well. I think most of us have already been oxygen dependent when we applied for SSDI. I haven't made the kind of diet changes that you're talking about so I can't say much about that. I eat well, fruits, vegetables, lean protein and complex carbs but I haven't eliminated entire classes of foods and yes I drink lowfat milk. This is what's working for me. I feel well and I'm stable, only you can decide what's right for you. You might want to think about making a couple of small changes at a time so you can actually make a judgement about what's helping and what's not helping. Small gradual changes are more sustainable over time anyway, know what I mean? We're with you no matter what! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Pred or No Pred; Thank you for responding; Homeopathic Treatment> > Thank you all for responding. Mama-Sher, your posts always put a > smile on my face. > Ok, The results are in; they vary btw "I will never take PRED" > to "PRED has been a life saver"> My biopsy reports states "chronic interstitial inflammation" . The > nurse made it clear that there was a ton of inflammation but not a > lot of fibrosis in my biopsy. The nurse was adamant (without > telling me what to do) that I get on PRED. Your responses have made > the decision much easier for me. Beth, in particular, > wrote "Part of the disease process that we have is that the > inflammation eventually scars and becomes fibrotic". Since PRED can > reduce inflammation, I have no choice but to start taking it. Now > if it causes me to lose my hair, I would be really mad. > Another good suggestion was to participate in "Evaluation for > Transplant". I don't have to commit to it while gaining valuable > information.> I was not able to complete the DLCO part of the PFT in Oct 07. I > would end up coughing. I was asked to attempt the DLCO when I > visited UCSF. At first I refused due to the phantom pain. When the > nurse stressed how important it would be for the panel to know my > diffusion capacity, I gave it a shot. My diffusion capacity came at > 38%. I think I can improve upon that number in a few months. This > is based on two main reasons. One, I will be ~6 months away from > smoking. I have not smoked since 2/2/08. Second, I'm hoping that > in a few months I will be free from this phantom pain and perhaps > give a better effort.> > Homeopathic Treatment:> > What is the consensus on homeopathic treatment? Is anyone being > treated by a homeopathic doctor? Has any one looked into it? > I have received a lot of calls from back home (Pakistan). Many > folks have recommended (with testaments) that I consider homeopathic > treatment. A family member, who is a medical doctor (MBBS), told me > that his wife was diagnosed with interstitial lung disease > approximately fifteen years ago. She has been treated with both, > steroids and the homeopathic treatment. She has maintained her > stats over the years. He recommended that I speak with two > homeopathic doctors. I did. One of those doctors also has an MD. > He sounded very optimistic after reviewing my medical records, > family history, and current symptoms. He projected that with my > current condition I `should' live a fairly normal life for another > 20+ yrs. I told him that my Pulmo is giving me "6 mo – 2 yrs" while > you are making it sound like I have a common cold. So, with a grain > of salt, I would take his prescribed medicine as well. I will > receive the homeopathic medicine in a few days. Thus, I'm eager to > find out if anyone else has already tried homeopathic treatment?> > Brett, my kids just turned thirteen. I have a twin boy/girl. My > son is a jock. He stars in baseball, basketball and football. My > daughter is the complete opposite. She is a Barbie doll. She > excels in academia. She has taken my illness very seriously. She > is internet savvy and there is a lot of depressing data out there > when it comes to UIP. I constantly assure her that I will do my > utmost to be around her for as long as I possibly can. My son, on > the other hand, does not show much emotion. He quietly went to his > room when first told of my illness. It was the day I returned from > the hospital. He did not say a word to me for a couple of days. On > third day he comes up to me and says, and I quote "hey dad, I'm > getting tired of you sitting on this sofa; why don't you go walk a > mile or something", end quote. I don't think he loves me any less > than his sister. It is just hard for us guys to show emotions. I > think daughters in general are more caring. You have a beautiful > daughter. Here is hoping that you are around when she > celebrates her fiftieth birthday. > > Dilwala > > > > > ____________ _________ _________ _________ _________ __> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Dilwala, Are you from India by any chance? your name sounds Indian! Geeta - In Breathe-Support , Beth wrote: > > Dilwala, > Wow! You are talking about making alot of dramatic changes all at once. My reaction is why? Not why make changes, only you can decide what's appropriate for you right now but why so much and why all right now? > I'm not sure about SSDI for you right now, sometimes it's tricky to qualify when your're still functioning reasonably well. I think most of us have already been oxygen dependent when we applied for SSDI. > I haven't made the kind of diet changes that you're talking about so I can't say much about that. I eat well, fruits, vegetables, lean protein and complex carbs but I haven't eliminated entire classes of foods and yes I drink lowfat milk. This is what's working for me. I feel well and I'm stable, only you can decide what's right for you. > You might want to think about making a couple of small changes at a time so you can actually make a judgement about what's helping and what's not helping. Small gradual changes are more sustainable over time anyway, know what I mean? > > We're with you no matter what! > > > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > > Pred or No Pred; Thank you for > responding; Homeopathic Treatment > > > > Thank you all for responding. Mama-Sher, your posts always put a > > smile on my face. > > Ok, The results are in; they vary btw " I will never take PRED " > > to " PRED has been a life saver " > > My biopsy reports states " chronic interstitial inflammation " . The > > nurse made it clear that there was a ton of inflammation but not a > > lot of fibrosis in my biopsy. The nurse was adamant (without > > telling me what to do) that I get on PRED. Your responses have > made > > the decision much easier for me. Beth, in particular, > > wrote " Part of the disease process that we have is that the > > inflammation eventually scars and becomes fibrotic " . Since PRED > can > > reduce inflammation, I have no choice but to start taking it. Now > > if it causes me to lose my hair, I would be really mad. > > Another good suggestion was to participate in " Evaluation for > > Transplant " . I don't have to commit to it while gaining valuable > > information. > > I was not able to complete the DLCO part of the PFT in Oct 07. I > > would end up coughing. I was asked to attempt the DLCO when I > > visited UCSF. At first I refused due to the phantom pain. When the > > nurse stressed how important it would be for the panel to know my > > diffusion capacity, I gave it a shot. My diffusion capacity came > at > > 38%. I think I can improve upon that number in a few months. This > > is based on two main reasons. One, I will be ~6 months away from > > smoking. I have not smoked since 2/2/08. Second, I'm hoping that > > in a few months I will be free from this phantom pain and perhaps > > give a better effort. > > > > Homeopathic Treatment: > > > > What is the consensus on homeopathic treatment? Is anyone being > > treated by a homeopathic doctor? Has any one looked into it? > > I have received a lot of calls from back home (Pakistan). Many > > folks have recommended (with testaments) that I consider > homeopathic > > treatment. A family member, who is a medical doctor (MBBS), told > me > > that his wife was diagnosed with interstitial lung disease > > approximately fifteen years ago. She has been treated with both, > > steroids and the homeopathic treatment. She has maintained her > > stats over the years. He recommended that I speak with two > > homeopathic doctors. I did. One of those doctors also has an MD. > > He sounded very optimistic after reviewing my medical records, > > family history, and current symptoms. He projected that with my > > current condition I `should' live a fairly normal life for another > > 20+ yrs. I told him that my Pulmo is giving me " 6 mo – 2 yrs " > while > > you are making it sound like I have a common cold. So, with a > grain > > of salt, I would take his prescribed medicine as well. I will > > receive the homeopathic medicine in a few days. Thus, I'm eager to > > find out if anyone else has already tried homeopathic treatment? > > > > Brett, my kids just turned thirteen. I have a twin boy/girl. My > > son is a jock. He stars in baseball, basketball and football. My > > daughter is the complete opposite. She is a Barbie doll. She > > excels in academia. She has taken my illness very seriously. She > > is internet savvy and there is a lot of depressing data out there > > when it comes to UIP. I constantly assure her that I will do my > > utmost to be around her for as long as I possibly can. My son, on > > the other hand, does not show much emotion. He quietly went to his > > room when first told of my illness. It was the day I returned from > > the hospital. He did not say a word to me for a couple of days. On > > third day he comes up to me and says, and I quote " hey dad, I'm > > getting tired of you sitting on this sofa; why don't you go walk a > > mile or something " , end quote. I don't think he loves me any less > > than his sister. It is just hard for us guys to show emotions. I > > think daughters in general are more caring. You have a beautiful > > daughter. Here is hoping that you are around when she > > celebrates her fiftieth birthday. > > > > Dilwala > > > > > > > > > > ____________ _________ _________ _________ _________ __ > > Quote Link to comment Share on other sites More sharing options...
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