Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Sue, Yes, you could make the recipe using a lower salicylate nut like pecans or even a mixture of two nuts like pecans and macadamias. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 Hi! My husband Mike and I are new to SBD. We have tried every other diet known to man. It seems like we start out well and then it all goes down hill. Then, we end up weighing more than we did when we started. I think this is because we always felt deprived of the foods we really enjoyed. The SBD seems more realistic to us and we have high hopes this time. Will keep posting our weights here to help us keep on track. Debbie 5'2- Currently 217lbs (from 225) Mike 6'0- Currently 284 (from 295) We are currently into our second week of phase one and have already lost several pounds. I've lost 8 and Mike has lost 11. We are thrilled. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 Wow that is awesome! I am on day 2 of phase 1 and I hope that I can report that kind of loss next week! Keep up the good work! sara debfrankel2003 debfrankel2003@...> wrote: Hi! My husband Mike and I are new to SBD. We have tried every other diet known to man. It seems like we start out well and then it all goes down hill. Then, we end up weighing more than we did when we started. I think this is because we always felt deprived of the foods we really enjoyed. The SBD seems more realistic to us and we have high hopes this time. Will keep posting our weights here to help us keep on track. Debbie 5'2- Currently 217lbs (from 225) Mike 6'0- Currently 284 (from 295) We are currently into our second week of phase one and have already lost several pounds. I've lost 8 and Mike has lost 11. We are thrilled. Please send your recipes for inclusion in the Files to the Moderator at: South-Beach-Diet-Getting-It-Right-owner Reminder: The South Beach Diet is not low-carb. Nor is it low-fat. The South Beach Diet teaches you to rely on the right carbs and the right fats-the good ones - and enables you to live quite happily without the bad carbs and bad fats. For more on this Way Of Eating please read " The South Beach Diet " by Arthur Agatston, MD. ISBN 1-57954-814-8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children untilI'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly gotdeathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with "ideopathic interstitial pneumonitis" Weaned from theo2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at nightwith my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in Aprilfrom recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of mylatest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin theevaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenixbecause I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me.I want to say hi to all on this board and thank you for welcoming me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children untilI'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly gotdeathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with "ideopathic interstitial pneumonitis" Weaned from theo2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at nightwith my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in Aprilfrom recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of mylatest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin theevaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenixbecause I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me.I want to say hi to all on this board and thank you for welcoming me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Thank you, it helps just to hear others stories. What is Dermatomyositis, is it anything like Lipodermatosclerosis? (Dont you hate knowing how to spell those) Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children until I'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly got deathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with " ideopathic interstitial pneumonitis " Weaned from the o2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at night with my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in April from recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of my latest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin the evaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenix because I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me. I want to say hi to all on this board and thank you for welcoming me. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Thank you, it helps just to hear others stories. What is Dermatomyositis, is it anything like Lipodermatosclerosis? (Dont you hate knowing how to spell those) Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children until I'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly got deathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with " ideopathic interstitial pneumonitis " Weaned from the o2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at night with my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in April from recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of my latest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin the evaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenix because I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me. I want to say hi to all on this board and thank you for welcoming me. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Dyane, Dermatomyositis is an auto-immune disease that causes muscle inflammation and weakness along with skin rashes. One of the complications of dermatomyositis is lung disease, in my case a form of pulmonary fibrosis called NSIP (non specific interstitial pneumonitis). For me the lung disease was diagnosed first in June of 06 and the DM was diagnosed just in the last few months. I am now being treated with an immune suppressant called ImuranLipodermatosclerosis, as I understand it is a skin and connective tissue disease primarily caused by poor circulation. (Taxing my memory here) Is this something you cope with also? I do hate knowing how to spell and even pronounce all these things....it stinks!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, February 26, 2009 5:02:07 PMSubject: Re: Newbie Thank you, it helps just to hear others stories. What is Dermatomyositis, is it anything like Lipodermatosclerosi s? (Dont you hate knowing how to spell those) On Thu, Feb 26, 2009 at 2:59 PM, Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: dyanebillings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children untilI'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly gotdeathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with "ideopathic interstitial pneumonitis" Weaned from theo2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at nightwith my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in Aprilfrom recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of mylatest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin theevaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenixbecause I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me.I want to say hi to all on this board and thank you for welcoming me. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Dyane, Dermatomyositis is an auto-immune disease that causes muscle inflammation and weakness along with skin rashes. One of the complications of dermatomyositis is lung disease, in my case a form of pulmonary fibrosis called NSIP (non specific interstitial pneumonitis). For me the lung disease was diagnosed first in June of 06 and the DM was diagnosed just in the last few months. I am now being treated with an immune suppressant called ImuranLipodermatosclerosis, as I understand it is a skin and connective tissue disease primarily caused by poor circulation. (Taxing my memory here) Is this something you cope with also? I do hate knowing how to spell and even pronounce all these things....it stinks!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, February 26, 2009 5:02:07 PMSubject: Re: Newbie Thank you, it helps just to hear others stories. What is Dermatomyositis, is it anything like Lipodermatosclerosi s? (Dont you hate knowing how to spell those) On Thu, Feb 26, 2009 at 2:59 PM, Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: dyanebillings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children untilI'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly gotdeathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with "ideopathic interstitial pneumonitis" Weaned from theo2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at nightwith my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in Aprilfrom recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of mylatest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin theevaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenixbecause I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me.I want to say hi to all on this board and thank you for welcoming me. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Beth, Yes, obviously (to us anyhow) that auto-immune and connective tissue diseases are all connected to our lungs. All summer my oncologist was concerned about a cancer marker in my blood that was elevated when nothing else was. Turns out this cancer marker measurement is somehow related to collegen. He said yesterday that the probable cause was my worsening lungs, not a concer reacurrence. My genetics gave me curly hair, short legs, and weird auto-immune diseases! AAAARRRRRGGGGGHHHHHH lol oh well, sometimes I feel like I keep my local Walgreens open all by myself, I take prednisone, azathioprine, trental, prilosec, avandia, insulin, pravachol, zetia, tricor, paxil, hctz, detrol la, tamozifen, zyrtec, vitamins, and percoset. Dyane, Dermatomyositis is an auto-immune disease that causes muscle inflammation and weakness along with skin rashes. One of the complications of dermatomyositis is lung disease, in my case a form of pulmonary fibrosis called NSIP (non specific interstitial pneumonitis). For me the lung disease was diagnosed first in June of 06 and the DM was diagnosed just in the last few months. I am now being treated with an immune suppressant called Imuran Lipodermatosclerosis, as I understand it is a skin and connective tissue disease primarily caused by poor circulation. (Taxing my memory here) Is this something you cope with also? I do hate knowing how to spell and even pronounce all these things....it stinks!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, February 26, 2009 5:02:07 PMSubject: Re: Newbie Thank you, it helps just to hear others stories. What is Dermatomyositis, is it anything like Lipodermatosclerosi s? (Dont you hate knowing how to spell those) On Thu, Feb 26, 2009 at 2:59 PM, Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: dyanebillings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. com Sent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children until I'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly got deathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with " ideopathic interstitial pneumonitis " Weaned from the o2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at night with my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in April from recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of my latest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin the evaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenix because I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me. I want to say hi to all on this board and thank you for welcoming me. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Beth, Yes, obviously (to us anyhow) that auto-immune and connective tissue diseases are all connected to our lungs. All summer my oncologist was concerned about a cancer marker in my blood that was elevated when nothing else was. Turns out this cancer marker measurement is somehow related to collegen. He said yesterday that the probable cause was my worsening lungs, not a concer reacurrence. My genetics gave me curly hair, short legs, and weird auto-immune diseases! AAAARRRRRGGGGGHHHHHH lol oh well, sometimes I feel like I keep my local Walgreens open all by myself, I take prednisone, azathioprine, trental, prilosec, avandia, insulin, pravachol, zetia, tricor, paxil, hctz, detrol la, tamozifen, zyrtec, vitamins, and percoset. Dyane, Dermatomyositis is an auto-immune disease that causes muscle inflammation and weakness along with skin rashes. One of the complications of dermatomyositis is lung disease, in my case a form of pulmonary fibrosis called NSIP (non specific interstitial pneumonitis). For me the lung disease was diagnosed first in June of 06 and the DM was diagnosed just in the last few months. I am now being treated with an immune suppressant called Imuran Lipodermatosclerosis, as I understand it is a skin and connective tissue disease primarily caused by poor circulation. (Taxing my memory here) Is this something you cope with also? I do hate knowing how to spell and even pronounce all these things....it stinks!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, February 26, 2009 5:02:07 PMSubject: Re: Newbie Thank you, it helps just to hear others stories. What is Dermatomyositis, is it anything like Lipodermatosclerosi s? (Dont you hate knowing how to spell those) On Thu, Feb 26, 2009 at 2:59 PM, Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: dyanebillings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. com Sent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children until I'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly got deathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with " ideopathic interstitial pneumonitis " Weaned from the o2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at night with my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in April from recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of my latest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin the evaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenix because I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me. I want to say hi to all on this board and thank you for welcoming me. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 , Welcome to the family. We have all been where you are now. Scared, angry,pissed!!! Keep asking your doctor questions until you get the answers...go into the office with questions written down and write down the answers. It might be a good idea to bring someone with you who can really listen as you try to absorb it all. Right now you need to heal from the biopsy and get stronger. You may even need another Doc if you're not satisfied with yours. Are you going to a teaching hospital? I would imagine that Houston would have several good ones that may have specialists in PF. There are many Texans in the group ..someone will chime in here an help you. Being in Pennsylvania I can't be much help in the doc situation...but I can listen ( read) and try to make you less scared. Ask whatever, rant, we'll be here. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower crzgirl64 wrote: Hi Peggy and thank you for your reply. Well where do I begin. I was diagnosed May 1st, 2009, eight days before my 45th birthday. Not exactly what I had in mind for a gift. I didn't even know what it was. Then I got on the internet and found out way too much. I had a biopsy done this past Monday and it's for sure IPF. I had a lung fuction test and I'm at 29%. And something I read here is so true, if you know something is wrong keep talking until someone will listen. I have been feeling bad since last October. Since January of this year I have not been able to breath and was told it was pnuemonia, again. I am scared to death, don't know what to feel and I am most worried about my mother, who I am very close to. I am divorced, with no children, I live in Houston, TX and really have no idea what to expect. So if anyone has any advice, I would love it. Right now, I am mad at the world and know I have no reason to be, but I am. The most aggravation I have now is at my doctor, he will give me no answers, and I know it is hard, since everyone is different, but I feel very alone. Wow, I sound like a whiner on a pity party. I have always been very independent and have worked since I was 13, so I am having a hard time asking people for help. I would really appreciate someone who could perhaps tell me whats going to happen next and is there anything I can do to help my family cope with this. Thanks for listening 5/09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Dear , I'm so sorry you are feeling so alone...it's hard when you have an elderly person in your life that you feel so responsible for. Normally you'd be responding to your Mum's needs..now you are needy yourself. ....how can you worry your elderly mother & ask her for support when she relies on YOU! We all remember those confusing, hard early days...Doctors who seem reluctant to talk with any openess & unable to help beyond organising tests & numbers. This is why this Support group is so vital for us to have. Most of us have trawled the Internet to try to shed light on our mysterious condition. Alas what we mostly have confirmed is, that it is, first & foremost, mysterious . There are over 200 known causes but most of us fall in the Unknown Cause' variety..hence the term 'Ideopathic' attached. Many of us have also had a Lung Biopsy, with varying degrees of that shedding any light on the type of PF we have. It's meant to confirm the TYPE of PF but quite often it doesn't....merely 'muddies' the waters, so to speak. Some people have difficulty recovering from the invasive procedure...others breeze through it with no problems. The very hardest thing is to tell YOU what to expect NEXT..the truth is that it is different for everybody. Some people 'progress' rapidly from diagnosis, others stay 'stable' for varying periods of time. Often it is a STOP- START process. Since we can never really be sure how long we've already had it by the time of Diagnosis it's not helpful to try & back-date it. Do know however that a lot of the Pronosis predictions you read on the Web are MEDIAN Survival rates...based on a Bell Curve as used in Statistics...where each of us falls on that Bell Curve would require a Medium's Magic Ball! What we can offer you with our collective wisdom is that None of us has an 'Expiry Date' stamped anywhere upon our person....we can do a LOT to help ourselves...good nutrition, doing all we can to stop ourselves picking up colds, flus etc (keep away from large Public Gatherins...get Flu/Peumnovax shots etc/), finding out your own ezxercise capcity to keep as safely mobile & fit as you can be. Fitter muscles mean that you will be asking your system for less Oxygen to 'power' your Motor. Our large muscles use up the most energy so it's really important to get those muscles working efficiently. I'm telling you all this right now to give you some hope that you CAN make a difference all by yourself....... Whne you say your lungs are at 29% could you tell us exactly WHAT has been measured to be at 29%...is it your Diffusion Rate (DLCO) or your Lung Volume or what exactly? Have you been put on Oxygen Supplementation yet...lots of folk here are very experienced with that. Have you been assessed by a Major teaching Facility???? I'm an Aussie so someone else , based in the States, will help steer you in the right direction for that. it is shocking to get a Diagnosis like ours..we have to allow that shock time to settle...do you have a Counsellor to talk to? there is a Caregiver's Board attached to this Site..maybe one or other of your family members might like to sign up to get support & understanding in that specialised Forum. Do you have siblings & are they close to you & your Mum? See we want to know EVERYTHING..I've asked more questions than YOU at this stage.... We're here for you...holding your hand in Cyberspace...we KNOW what you're facing..we face it too! Keep Heart...Hang in there......TALK to us all you want... Regards, in Australia (aka GIO...or in Oz ) IPF: Fibrotic NSIP/UIP???? Raynauds' May 2007 >> Hi Peggy and thank you for your reply. Well where do I begin. I was diagnosed May 1st, 2009, eight days before my 45th birthday. Not exactly what I had in mind for a gift. I didn't even know what it was. Then I got on the internet and found out way too much. I had a biopsy done this past Monday and it's for sure IPF. I had a lung fuction test and I'm at 29%. And something I read here is so true, if you know something is wrong keep talking until someone will listen. I have been feeling bad since last October. Since January of this year I have not been able to breath and was told it was pnuemonia, again. I am scared to death, don't know what to feel and I am most worried about my mother, who I am very close to. I am divorced, with no children, I live in Houston, TX and really have no idea what to expect. So if anyone has any advice, I would love it. Right now, I am mad at the world and know I have no reason to be, but I am. The most aggravation I have now is at my doctor, he will give me no answers, and I know it is hard, since everyone is different, but I feel very alone. Wow, I sound like a whiner on a pity party. I have always been very independent and have worked since I was 13, so I am having a hard time asking people for help. I would really appreciate someone who could perhaps tell me whats going to happen next and is there anything I can do to help my family cope with this. Thanks for listening> 5/09> Quote Link to comment Share on other sites More sharing options...
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