Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 Hello, Fay - - - and WELCOME here!! This loop is such fun; I hope you will enjoy it as much as I do! Tell us something about yourself - - - (((HUGS)))) Clara Gleghorn Midland, TX No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.298 / Virus Database: 265.6.7 - Release Date: 12/30/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 Hello, Fay - - - and WELCOME here!! This loop is such fun; I hope you will enjoy it as much as I do! Tell us something about yourself - - - (((HUGS)))) Clara Gleghorn Midland, TX No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.298 / Virus Database: 265.6.7 - Release Date: 12/30/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 Hello, Fay - - - and WELCOME here!! This loop is such fun; I hope you will enjoy it as much as I do! Tell us something about yourself - - - (((HUGS)))) Clara Gleghorn Midland, TX No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.298 / Virus Database: 265.6.7 - Release Date: 12/30/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Susie! Welcome to the wonderful world of TOPS! I know you're a bit confused right now, and there is quite a bit to take in all at once - but bear with us and slowly but surely it will all become clear. The best thing about TOPS is the unprecedented support and encouragement you will receive - not only in your new chapter but also online. You will meet with your chapter just once a week, but it will amaze you the wonderful friendships that are formed - we are here to help fill in all those other days that might come at you when you least expect them TOPS is not a "diet" group - there isn't ONE specific "diet" that you "must follow" although there is the Exchange Program (which is in "The Choice is Yours" or the new "The Choice is Mine" book that is available to you when you join your chapter. However, everyone is NOT the same and what works for one person - may not work for another. TOPS is here to help you find what works for you and do it SENSIBLY. The main focus of TOPS is as a weight loss support group - and NO, it's not a bunch of people sitting around moaning and groaning about being overweight LOL - there are programs, contests, incentives, awards, so many wonderful things! There is also SRD, which is our State Recognition Days. This is always a not to be missed event if you can at all be there. They are held all over the state of Texas and are one of the most inspirational events you will ever attend. State winners from all over the State are recognized - the stories are so inspirational! To find out more about what SRD is you can head over to the TexasTOPS website and see all the great things that will be going on at this year's SRD in San Angelo. (http://www.texastops.org/state/srd/2005/index.htm ) If you are able to make it to SRD - be sure to tell your new chapter that you are interested in going! I'm sure they would love to have you go!! Also during the year (depending on where you are at) there are several workshops and fun days to attend - these are also full of inspiration, motivation and information and local awards and recognitions are done at these also. (there is an area events page on the TexasTOPS website also) You are taking an awesome step forward by joining your local TOPS chapter! I joined 2 years ago and it was the BEST move I've made in a LONG time! I have never regretted one single moment since joining! I'm sure you will be getting lots and lots of answers - as this is a fantastic group of people here! So, I'll shut up now - anytime you're confused on anything we may be talking about just feel free to jump right in and ask - and i'm sure you'll get several answers at once too LOL again....Welcome to TOPS!! Melody Moris, Leader TOPS #Tx1454, Pleasanton http://www.texastops.org email: topsmama@... Destination KOPS! choo! choo! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Susie! Welcome to the wonderful world of TOPS! I know you're a bit confused right now, and there is quite a bit to take in all at once - but bear with us and slowly but surely it will all become clear. The best thing about TOPS is the unprecedented support and encouragement you will receive - not only in your new chapter but also online. You will meet with your chapter just once a week, but it will amaze you the wonderful friendships that are formed - we are here to help fill in all those other days that might come at you when you least expect them TOPS is not a "diet" group - there isn't ONE specific "diet" that you "must follow" although there is the Exchange Program (which is in "The Choice is Yours" or the new "The Choice is Mine" book that is available to you when you join your chapter. However, everyone is NOT the same and what works for one person - may not work for another. TOPS is here to help you find what works for you and do it SENSIBLY. The main focus of TOPS is as a weight loss support group - and NO, it's not a bunch of people sitting around moaning and groaning about being overweight LOL - there are programs, contests, incentives, awards, so many wonderful things! There is also SRD, which is our State Recognition Days. This is always a not to be missed event if you can at all be there. They are held all over the state of Texas and are one of the most inspirational events you will ever attend. State winners from all over the State are recognized - the stories are so inspirational! To find out more about what SRD is you can head over to the TexasTOPS website and see all the great things that will be going on at this year's SRD in San Angelo. (http://www.texastops.org/state/srd/2005/index.htm ) If you are able to make it to SRD - be sure to tell your new chapter that you are interested in going! I'm sure they would love to have you go!! Also during the year (depending on where you are at) there are several workshops and fun days to attend - these are also full of inspiration, motivation and information and local awards and recognitions are done at these also. (there is an area events page on the TexasTOPS website also) You are taking an awesome step forward by joining your local TOPS chapter! I joined 2 years ago and it was the BEST move I've made in a LONG time! I have never regretted one single moment since joining! I'm sure you will be getting lots and lots of answers - as this is a fantastic group of people here! So, I'll shut up now - anytime you're confused on anything we may be talking about just feel free to jump right in and ask - and i'm sure you'll get several answers at once too LOL again....Welcome to TOPS!! Melody Moris, Leader TOPS #Tx1454, Pleasanton http://www.texastops.org email: topsmama@... Destination KOPS! choo! choo! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Susie! Welcome to the wonderful world of TOPS! I know you're a bit confused right now, and there is quite a bit to take in all at once - but bear with us and slowly but surely it will all become clear. The best thing about TOPS is the unprecedented support and encouragement you will receive - not only in your new chapter but also online. You will meet with your chapter just once a week, but it will amaze you the wonderful friendships that are formed - we are here to help fill in all those other days that might come at you when you least expect them TOPS is not a "diet" group - there isn't ONE specific "diet" that you "must follow" although there is the Exchange Program (which is in "The Choice is Yours" or the new "The Choice is Mine" book that is available to you when you join your chapter. However, everyone is NOT the same and what works for one person - may not work for another. TOPS is here to help you find what works for you and do it SENSIBLY. The main focus of TOPS is as a weight loss support group - and NO, it's not a bunch of people sitting around moaning and groaning about being overweight LOL - there are programs, contests, incentives, awards, so many wonderful things! There is also SRD, which is our State Recognition Days. This is always a not to be missed event if you can at all be there. They are held all over the state of Texas and are one of the most inspirational events you will ever attend. State winners from all over the State are recognized - the stories are so inspirational! To find out more about what SRD is you can head over to the TexasTOPS website and see all the great things that will be going on at this year's SRD in San Angelo. (http://www.texastops.org/state/srd/2005/index.htm ) If you are able to make it to SRD - be sure to tell your new chapter that you are interested in going! I'm sure they would love to have you go!! Also during the year (depending on where you are at) there are several workshops and fun days to attend - these are also full of inspiration, motivation and information and local awards and recognitions are done at these also. (there is an area events page on the TexasTOPS website also) You are taking an awesome step forward by joining your local TOPS chapter! I joined 2 years ago and it was the BEST move I've made in a LONG time! I have never regretted one single moment since joining! I'm sure you will be getting lots and lots of answers - as this is a fantastic group of people here! So, I'll shut up now - anytime you're confused on anything we may be talking about just feel free to jump right in and ask - and i'm sure you'll get several answers at once too LOL again....Welcome to TOPS!! Melody Moris, Leader TOPS #Tx1454, Pleasanton http://www.texastops.org email: topsmama@... Destination KOPS! choo! choo! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Hi , where are you located? this is a great group and can talk about anything, we have just finished with a contest we were having on here for one thing, but we all just jump in and report our weigh ins each week and just keep in touch with each other, it is certainly a big help to get on here and talk to someone instead of grabbing something to eat if we don't need it. You can bet someone will answer you if you write. Hugs, Jackie -- HELLO Good Afternoon Everyone, I have just joined this group in the last couple of days. I am glad to see that it is an active group!! I am however lost. I have not yet attended my first meeting. The one closest to my house meets on Tuesday evenings. I do not understand everything that is in the posts. Is there somewhere or even a post that makes things make more sense?? I just want to understand what TOPS is about so I can get moving forward. I am anxious to be active, I just do not know where to start! Thank You Susie Tatsch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Hi , where are you located? this is a great group and can talk about anything, we have just finished with a contest we were having on here for one thing, but we all just jump in and report our weigh ins each week and just keep in touch with each other, it is certainly a big help to get on here and talk to someone instead of grabbing something to eat if we don't need it. You can bet someone will answer you if you write. Hugs, Jackie -- HELLO Good Afternoon Everyone, I have just joined this group in the last couple of days. I am glad to see that it is an active group!! I am however lost. I have not yet attended my first meeting. The one closest to my house meets on Tuesday evenings. I do not understand everything that is in the posts. Is there somewhere or even a post that makes things make more sense?? I just want to understand what TOPS is about so I can get moving forward. I am anxious to be active, I just do not know where to start! Thank You Susie Tatsch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Welcome to the loop, Susie. Once you begin going to meetings, things will make more sense. Some helpful sites are: www.tops.org and www.texastops.org Good luck. Hugs, Deanna HELLO Good Afternoon Everyone,I have just joined this group in the last couple of days. I am glad to see that it is an active group!! I am however lost. I have not yet attended my first meeting. The one closest to my house meets on Tuesday evenings. I do not understand everything that is in the posts. Is there somewhere or even a post that makes things make more sense?? I just want to understand what TOPS is about so I can get moving forward. I am anxious to be active, I just do not know where to start!Thank YouSusie Tatsch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Welcome to the loop, Susie. Once you begin going to meetings, things will make more sense. Some helpful sites are: www.tops.org and www.texastops.org Good luck. Hugs, Deanna HELLO Good Afternoon Everyone,I have just joined this group in the last couple of days. I am glad to see that it is an active group!! I am however lost. I have not yet attended my first meeting. The one closest to my house meets on Tuesday evenings. I do not understand everything that is in the posts. Is there somewhere or even a post that makes things make more sense?? I just want to understand what TOPS is about so I can get moving forward. I am anxious to be active, I just do not know where to start!Thank YouSusie Tatsch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Hello back to you, Susie - - and welcome to the group. You'll soon learn the "lingo" - - things like ARD (Area Recognition Days) - SRD (State Recognition Days), IRD (International Recognition Days) - TURTLE - (no loss/no gain - - stayed the same), KOPS (Keep Off Pounds Sensibly - after you reach your goal), and there are bound to be many more that I'm not thinking of right now!! You will LOVE TOPS if you are getting into a good group that is active and has good programs, good contests and good group participation. Let us know what you think about your first meeting - - - and if you have any questions, please ask here on the loop (you'll probably get more answers than you want)!! Tell us something about yourself - - where you live, about your family, anything you feel like sharing - - - I'm in Midland, Texas - - I am a 64 year old grandmother, married 47 years - I have one son who live in Dallas, one who lives in Midland - and all of my grandkids live here in Midland, so I get to see them often! I AM VERY BLESSED! I have been a TOPS member for many years - and just reached my goal in May last year. When you reach your goal and become KOPS, you are eligible to "Graduate" at Chapter level, at ARD, SRD or IRD - most choose to graduate at SRD. And it is a VERY BIG event! Graduates wear long white dresses and have white graduation caps, march in processional and do a full graduation ceremony. It is beautiful. And it is very special because all of your friends are there cheering you on! There are just no more special friends than TOPS friends. TOPS (((((HUGS))))) TO YOU, Clara Gleghorn No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.8.5 - Release Date: 2/3/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Hello back to you, Susie - - and welcome to the group. You'll soon learn the "lingo" - - things like ARD (Area Recognition Days) - SRD (State Recognition Days), IRD (International Recognition Days) - TURTLE - (no loss/no gain - - stayed the same), KOPS (Keep Off Pounds Sensibly - after you reach your goal), and there are bound to be many more that I'm not thinking of right now!! You will LOVE TOPS if you are getting into a good group that is active and has good programs, good contests and good group participation. Let us know what you think about your first meeting - - - and if you have any questions, please ask here on the loop (you'll probably get more answers than you want)!! Tell us something about yourself - - where you live, about your family, anything you feel like sharing - - - I'm in Midland, Texas - - I am a 64 year old grandmother, married 47 years - I have one son who live in Dallas, one who lives in Midland - and all of my grandkids live here in Midland, so I get to see them often! I AM VERY BLESSED! I have been a TOPS member for many years - and just reached my goal in May last year. When you reach your goal and become KOPS, you are eligible to "Graduate" at Chapter level, at ARD, SRD or IRD - most choose to graduate at SRD. And it is a VERY BIG event! Graduates wear long white dresses and have white graduation caps, march in processional and do a full graduation ceremony. It is beautiful. And it is very special because all of your friends are there cheering you on! There are just no more special friends than TOPS friends. TOPS (((((HUGS))))) TO YOU, Clara Gleghorn No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.8.5 - Release Date: 2/3/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2005 Report Share Posted February 5, 2005 Welcome Susie !!! You'll soon catch on to all the postings. If you ever have a question ~~ just ask !!! There are MANY helpful people on the loop. Everyone is so friendly and you'll soon find out those who are REALLY FUNNY !!!! It's fun !!! Hope your TOPS meeting goes well !!! Hugs from SE Texas, Randie Leader TOPS #TX323,Orange HELLO Good Afternoon Everyone,I have just joined this group in the last couple of days. I am glad to see that it is an active group!! I am however lost. I have not yet attended my first meeting. The one closest to my house meets on Tuesday evenings. I do not understand everything that is in the posts. Is there somewhere or even a post that makes things make more sense?? I just want to understand what TOPS is about so I can get moving forward. I am anxious to be active, I just do not know where to start!Thank YouSusie TatschEMAIL SUPPORT TEXAS-STYLE!!Visit us on the web: http://www.texastops.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2005 Report Share Posted February 5, 2005 Welcome Susie, glad to have you here on the loop. My name is Helon & I am the Weight Recorder for TOPS #10 in Abilene. I'm 64 years old, married, have 6 grown children scattered around Texas, 11 grand children, and 6 great grand kids. I've been a TOPS member going on 5 years now....I'm still about 60 lbs from goal but I will get there one of these years. Looking forward to getting to know you better. Helon HELLO Good Afternoon Everyone,I have just joined this group in the last couple of days. I am glad to see that it is an active group!! I am however lost. I have not yet attended my first meeting. The one closest to my house meets on Tuesday evenings. I do not understand everything that is in the posts. Is there somewhere or even a post that makes things make more sense?? I just want to understand what TOPS is about so I can get moving forward. I am anxious to be active, I just do not know where to start!Thank YouSusie TatschEMAIL SUPPORT TEXAS-STYLE!!Visit us on the web: http://www.texastops.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2005 Report Share Posted February 5, 2005 Welcome Susie, glad to have you here on the loop. My name is Helon & I am the Weight Recorder for TOPS #10 in Abilene. I'm 64 years old, married, have 6 grown children scattered around Texas, 11 grand children, and 6 great grand kids. I've been a TOPS member going on 5 years now....I'm still about 60 lbs from goal but I will get there one of these years. Looking forward to getting to know you better. Helon HELLO Good Afternoon Everyone,I have just joined this group in the last couple of days. I am glad to see that it is an active group!! I am however lost. I have not yet attended my first meeting. The one closest to my house meets on Tuesday evenings. I do not understand everything that is in the posts. Is there somewhere or even a post that makes things make more sense?? I just want to understand what TOPS is about so I can get moving forward. I am anxious to be active, I just do not know where to start!Thank YouSusie TatschEMAIL SUPPORT TEXAS-STYLE!!Visit us on the web: http://www.texastops.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 Hey , Right now, I am not able to take the Fosamax or anything orally because of my Crohn's Disease due to HPS. I had heard about the once a month IV, and there is also a drug that will soon becoming available IV for 3 days, and you don't have to take it again for a year. Again the problem for me is being able to afford it. We "make to much money" to qualify for anything, and my Medicare would max out, and I cannot afford a supplement as my husband was out of work for 11 months. PTL he has had a job for a year now!!!! But his insurance at work to cover me is ridiculously high too. Also, like , there will be no retirement savings for me. It really does suck to be sick so young, but I guess it makes me depend on God that much more. Take care Tillman PF/Hermansky Pudlak Syndrome 2002 NC www.myspace.com/karenshpskorner _________________________________________________ Tillman Regional Coordinator Mid Atlantic USAHermansky-Pudlak Syndrome Network Incphone: or NY office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 Re: hello Gwynne, I also had difficulty with Fosamax and Boniva in pill form...I've been diagnosed with osteoporosis due to the pred. I now get an IV injection of Boniva every three months...it goes to your blood stream and not through the digestive system which had caused me so much heartburn.I still take Evista, calcium and vitamin D to try to keep the osteoporosis at bay. Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob MarleyGwynne Keyland wrote: ,I wanted to offer you a warm welcome to this board. I'mso glad to have you with us, but I understand that you arehaving to make some huge and complicated decisions. I dohope you get to make that wonderful trip you have planned!I was diagnosed with UIP/IPF after a VATS biopsy in July2004. Now I also have some Bronchiectasis. I, too, wasbeing treated, unsuccessfully of course, for what was thoughtto be worsening asthma. By the time I was diagnosed I had togo on full-time 02. Since then, my liter flow at rest has doubledand with exertion, trippled. I have year-round allergies, whichdoesn't help, nor does Texas' blistering heat, outrageous humidity,and frequent ozone alert days. bah.This week I found out I have osteoporosis at one pointon my right hip and osteopenia elsewhere. This makesme sad and worried, because I don't think I'll ever be offthe Prednisone - 10mg a day now, but post-transplantpatients are on it for life. God willing, I will get a call oneof these days for a new lung after being listed this past March.But in spring 2006 I fell and smashed my right hand - hadto have 2 surgeries & still have a crooked hand- and now Iwonder if my fall was affected by more than klutziness.Mentally, I seem to deal well with the Pred. but I hate thephysical effects. Especially the bone thinning and gastricproblems. I've had serious reflux (from which I have no symptoms & which is now controlled by medication - fortunately, 'cause ifit wasn't I wouldn't have been listed), so I can't take Fosomax orany of the better bone loss preventive drugs. Most of themcan't be taken with Nexium, one of the two reflux meds I take,so I use a nasal spray called Miacalcin, which is probably apuny alternative.Anyway, some of us do quite well on the Prednisone, at leastin moderate doses.For some reason reason, I usually get posts about 12 hoursafter they're initially posted, which can be irritating. However,I love this group. Thanks for posting and please keep us updatedon you. You're in my prayers.,It's good to see your post. My heart hurts for the pain you and are going through. I'm terribly sorry about his foot, and I hopethis week goes better than you anticipate. God bless you both.Greg,Thank you for the photos. You and Deb look wonderful!!! It's hard tobelieve it has been 6 months. I also have trouble believing thatI was listed nearly 6 months ago.Peggy,Hope your headache is better. Do you get migraines? I detestheadaches. I'm sorry you feel lousy.,Wish I could wave a magic wand and make some of that mountainof stress disappear. Hang in there. It sounds like you are doinga terrific job in a difficult situation. We're here for you! Ask forhelp at work if you get the chance.Joyce and , I'm already praying that you'll get some realRESULTS this week instead of insensitive remarks, lame excuses,and more headaches. It's infuriating to the rest of us, so I canhardly imagine how frustrated you've been.Hugs and prayers,Gwynne IPF 7/04 listed for transplant 3/07 TX No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.8/973 - Release Date: 8/25/2007 5:00 PM No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.8/973 - Release Date: 8/25/2007 5:00 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 Hey , Right now, I am not able to take the Fosamax or anything orally because of my Crohn's Disease due to HPS. I had heard about the once a month IV, and there is also a drug that will soon becoming available IV for 3 days, and you don't have to take it again for a year. Again the problem for me is being able to afford it. We "make to much money" to qualify for anything, and my Medicare would max out, and I cannot afford a supplement as my husband was out of work for 11 months. PTL he has had a job for a year now!!!! But his insurance at work to cover me is ridiculously high too. Also, like , there will be no retirement savings for me. It really does suck to be sick so young, but I guess it makes me depend on God that much more. Take care Tillman PF/Hermansky Pudlak Syndrome 2002 NC www.myspace.com/karenshpskorner _________________________________________________ Tillman Regional Coordinator Mid Atlantic USAHermansky-Pudlak Syndrome Network Incphone: or NY office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 Re: hello Gwynne, I also had difficulty with Fosamax and Boniva in pill form...I've been diagnosed with osteoporosis due to the pred. I now get an IV injection of Boniva every three months...it goes to your blood stream and not through the digestive system which had caused me so much heartburn.I still take Evista, calcium and vitamin D to try to keep the osteoporosis at bay. Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob MarleyGwynne Keyland wrote: ,I wanted to offer you a warm welcome to this board. I'mso glad to have you with us, but I understand that you arehaving to make some huge and complicated decisions. I dohope you get to make that wonderful trip you have planned!I was diagnosed with UIP/IPF after a VATS biopsy in July2004. Now I also have some Bronchiectasis. I, too, wasbeing treated, unsuccessfully of course, for what was thoughtto be worsening asthma. By the time I was diagnosed I had togo on full-time 02. Since then, my liter flow at rest has doubledand with exertion, trippled. I have year-round allergies, whichdoesn't help, nor does Texas' blistering heat, outrageous humidity,and frequent ozone alert days. bah.This week I found out I have osteoporosis at one pointon my right hip and osteopenia elsewhere. This makesme sad and worried, because I don't think I'll ever be offthe Prednisone - 10mg a day now, but post-transplantpatients are on it for life. God willing, I will get a call oneof these days for a new lung after being listed this past March.But in spring 2006 I fell and smashed my right hand - hadto have 2 surgeries & still have a crooked hand- and now Iwonder if my fall was affected by more than klutziness.Mentally, I seem to deal well with the Pred. but I hate thephysical effects. Especially the bone thinning and gastricproblems. I've had serious reflux (from which I have no symptoms & which is now controlled by medication - fortunately, 'cause ifit wasn't I wouldn't have been listed), so I can't take Fosomax orany of the better bone loss preventive drugs. Most of themcan't be taken with Nexium, one of the two reflux meds I take,so I use a nasal spray called Miacalcin, which is probably apuny alternative.Anyway, some of us do quite well on the Prednisone, at leastin moderate doses.For some reason reason, I usually get posts about 12 hoursafter they're initially posted, which can be irritating. However,I love this group. Thanks for posting and please keep us updatedon you. You're in my prayers.,It's good to see your post. My heart hurts for the pain you and are going through. I'm terribly sorry about his foot, and I hopethis week goes better than you anticipate. God bless you both.Greg,Thank you for the photos. You and Deb look wonderful!!! It's hard tobelieve it has been 6 months. I also have trouble believing thatI was listed nearly 6 months ago.Peggy,Hope your headache is better. Do you get migraines? I detestheadaches. I'm sorry you feel lousy.,Wish I could wave a magic wand and make some of that mountainof stress disappear. Hang in there. It sounds like you are doinga terrific job in a difficult situation. We're here for you! Ask forhelp at work if you get the chance.Joyce and , I'm already praying that you'll get some realRESULTS this week instead of insensitive remarks, lame excuses,and more headaches. It's infuriating to the rest of us, so I canhardly imagine how frustrated you've been.Hugs and prayers,Gwynne IPF 7/04 listed for transplant 3/07 TX No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.8/973 - Release Date: 8/25/2007 5:00 PM No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.8/973 - Release Date: 8/25/2007 5:00 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 Hey , Right now, I am not able to take the Fosamax or anything orally because of my Crohn's Disease due to HPS. I had heard about the once a month IV, and there is also a drug that will soon becoming available IV for 3 days, and you don't have to take it again for a year. Again the problem for me is being able to afford it. We "make to much money" to qualify for anything, and my Medicare would max out, and I cannot afford a supplement as my husband was out of work for 11 months. PTL he has had a job for a year now!!!! But his insurance at work to cover me is ridiculously high too. Also, like , there will be no retirement savings for me. It really does suck to be sick so young, but I guess it makes me depend on God that much more. Take care Tillman PF/Hermansky Pudlak Syndrome 2002 NC www.myspace.com/karenshpskorner _________________________________________________ Tillman Regional Coordinator Mid Atlantic USAHermansky-Pudlak Syndrome Network Incphone: or NY office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 Re: hello Gwynne, I also had difficulty with Fosamax and Boniva in pill form...I've been diagnosed with osteoporosis due to the pred. I now get an IV injection of Boniva every three months...it goes to your blood stream and not through the digestive system which had caused me so much heartburn.I still take Evista, calcium and vitamin D to try to keep the osteoporosis at bay. Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob MarleyGwynne Keyland wrote: ,I wanted to offer you a warm welcome to this board. I'mso glad to have you with us, but I understand that you arehaving to make some huge and complicated decisions. I dohope you get to make that wonderful trip you have planned!I was diagnosed with UIP/IPF after a VATS biopsy in July2004. Now I also have some Bronchiectasis. I, too, wasbeing treated, unsuccessfully of course, for what was thoughtto be worsening asthma. By the time I was diagnosed I had togo on full-time 02. Since then, my liter flow at rest has doubledand with exertion, trippled. I have year-round allergies, whichdoesn't help, nor does Texas' blistering heat, outrageous humidity,and frequent ozone alert days. bah.This week I found out I have osteoporosis at one pointon my right hip and osteopenia elsewhere. This makesme sad and worried, because I don't think I'll ever be offthe Prednisone - 10mg a day now, but post-transplantpatients are on it for life. God willing, I will get a call oneof these days for a new lung after being listed this past March.But in spring 2006 I fell and smashed my right hand - hadto have 2 surgeries & still have a crooked hand- and now Iwonder if my fall was affected by more than klutziness.Mentally, I seem to deal well with the Pred. but I hate thephysical effects. Especially the bone thinning and gastricproblems. I've had serious reflux (from which I have no symptoms & which is now controlled by medication - fortunately, 'cause ifit wasn't I wouldn't have been listed), so I can't take Fosomax orany of the better bone loss preventive drugs. Most of themcan't be taken with Nexium, one of the two reflux meds I take,so I use a nasal spray called Miacalcin, which is probably apuny alternative.Anyway, some of us do quite well on the Prednisone, at leastin moderate doses.For some reason reason, I usually get posts about 12 hoursafter they're initially posted, which can be irritating. However,I love this group. Thanks for posting and please keep us updatedon you. You're in my prayers.,It's good to see your post. My heart hurts for the pain you and are going through. I'm terribly sorry about his foot, and I hopethis week goes better than you anticipate. God bless you both.Greg,Thank you for the photos. You and Deb look wonderful!!! It's hard tobelieve it has been 6 months. I also have trouble believing thatI was listed nearly 6 months ago.Peggy,Hope your headache is better. Do you get migraines? I detestheadaches. I'm sorry you feel lousy.,Wish I could wave a magic wand and make some of that mountainof stress disappear. Hang in there. It sounds like you are doinga terrific job in a difficult situation. We're here for you! Ask forhelp at work if you get the chance.Joyce and , I'm already praying that you'll get some realRESULTS this week instead of insensitive remarks, lame excuses,and more headaches. It's infuriating to the rest of us, so I canhardly imagine how frustrated you've been.Hugs and prayers,Gwynne IPF 7/04 listed for transplant 3/07 TX No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.8/973 - Release Date: 8/25/2007 5:00 PM No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.8/973 - Release Date: 8/25/2007 5:00 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Jackie, Does your doc have you one Cellcept and Imuran at the same time? I was on Imuran and couldn't tolerate it, then began taking the Cellcept. Never at the same time. I did take Imuran and Methotrexate at the same time. Sorry that your tests showed digression. Maybe the Cellcept will stabalize you. I know you hate the prednisone at 60. It turns me into a raving maniac at that dosage. Your docs are following pretty much the same path that mine followed. They were aggressive towards the Lupus, etc. and it has bought me some time with the fibrosis. Hope it does the same for you. My kidneys have not been affected thus far. But, almost nothing else has been spared. Take care, my prayers for success with Cellcept. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hello, I have been a member for awhile now but don't post very > often. I have been living with this disease for a year and a half > and Lord knows it does not always want to play nice. I was wondering > if anyone has taken cellcept and Imuran together. I had done 10 > months of cytoxan and developed an allergic reaction, so I am no > longer able to take cytoxan. Since I have stoped in July I have had > pnemonia 3 times and I am having decrease in my PFT's and my last 6 > min. walk was down with my O2 falling to 85.I started Imuran and > have been on steriods for 2 years, I take 60 mg. a day. My pulmonary > doctor has now added cellcept along with all the other drugs. We are > waiting to hear if insurance will pay for me to start Rituxan. > Needless to say I am not sure what is worse the disease or all the > meds. I have got to go for another CT because of the mass they found > in my bottom left lung. They found that a few months ago and wanted > to do a open lung bx, but I said no I wanted to repeat the CT in a > month to see if there were any changes. Then we would go from there > and see what needed done. I know thru all of this I have learned to > enjoy life much more. When I thought Lupus was bad little did I know > how good I had it. I now have heart, lungs, and kidneys affected. > Thru all of this my faith and family keep me going. Thank you for > listening to me. I would love to hear from anyone who has tried > these medications. Thank you and god bless! Jackie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Jackie, Does your doc have you one Cellcept and Imuran at the same time? I was on Imuran and couldn't tolerate it, then began taking the Cellcept. Never at the same time. I did take Imuran and Methotrexate at the same time. Sorry that your tests showed digression. Maybe the Cellcept will stabalize you. I know you hate the prednisone at 60. It turns me into a raving maniac at that dosage. Your docs are following pretty much the same path that mine followed. They were aggressive towards the Lupus, etc. and it has bought me some time with the fibrosis. Hope it does the same for you. My kidneys have not been affected thus far. But, almost nothing else has been spared. Take care, my prayers for success with Cellcept. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hello, I have been a member for awhile now but don't post very > often. I have been living with this disease for a year and a half > and Lord knows it does not always want to play nice. I was wondering > if anyone has taken cellcept and Imuran together. I had done 10 > months of cytoxan and developed an allergic reaction, so I am no > longer able to take cytoxan. Since I have stoped in July I have had > pnemonia 3 times and I am having decrease in my PFT's and my last 6 > min. walk was down with my O2 falling to 85.I started Imuran and > have been on steriods for 2 years, I take 60 mg. a day. My pulmonary > doctor has now added cellcept along with all the other drugs. We are > waiting to hear if insurance will pay for me to start Rituxan. > Needless to say I am not sure what is worse the disease or all the > meds. I have got to go for another CT because of the mass they found > in my bottom left lung. They found that a few months ago and wanted > to do a open lung bx, but I said no I wanted to repeat the CT in a > month to see if there were any changes. Then we would go from there > and see what needed done. I know thru all of this I have learned to > enjoy life much more. When I thought Lupus was bad little did I know > how good I had it. I now have heart, lungs, and kidneys affected. > Thru all of this my faith and family keep me going. Thank you for > listening to me. I would love to hear from anyone who has tried > these medications. Thank you and god bless! Jackie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Jackie, Does your doc have you one Cellcept and Imuran at the same time? I was on Imuran and couldn't tolerate it, then began taking the Cellcept. Never at the same time. I did take Imuran and Methotrexate at the same time. Sorry that your tests showed digression. Maybe the Cellcept will stabalize you. I know you hate the prednisone at 60. It turns me into a raving maniac at that dosage. Your docs are following pretty much the same path that mine followed. They were aggressive towards the Lupus, etc. and it has bought me some time with the fibrosis. Hope it does the same for you. My kidneys have not been affected thus far. But, almost nothing else has been spared. Take care, my prayers for success with Cellcept. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hello, I have been a member for awhile now but don't post very > often. I have been living with this disease for a year and a half > and Lord knows it does not always want to play nice. I was wondering > if anyone has taken cellcept and Imuran together. I had done 10 > months of cytoxan and developed an allergic reaction, so I am no > longer able to take cytoxan. Since I have stoped in July I have had > pnemonia 3 times and I am having decrease in my PFT's and my last 6 > min. walk was down with my O2 falling to 85.I started Imuran and > have been on steriods for 2 years, I take 60 mg. a day. My pulmonary > doctor has now added cellcept along with all the other drugs. We are > waiting to hear if insurance will pay for me to start Rituxan. > Needless to say I am not sure what is worse the disease or all the > meds. I have got to go for another CT because of the mass they found > in my bottom left lung. They found that a few months ago and wanted > to do a open lung bx, but I said no I wanted to repeat the CT in a > month to see if there were any changes. Then we would go from there > and see what needed done. I know thru all of this I have learned to > enjoy life much more. When I thought Lupus was bad little did I know > how good I had it. I now have heart, lungs, and kidneys affected. > Thru all of this my faith and family keep me going. Thank you for > listening to me. I would love to hear from anyone who has tried > these medications. Thank you and god bless! Jackie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 -- Joyce, My doctor does have me on all three cellcept and Imuran and predisone. Along with all my other meds. How long have you had Lupus? I notice you live in Indiana so do I, about one hour from Cincinnati. Thank you for responding to my message. Have a great day.Jackie - In Breathe-Support , " Joyce " wrote: > > > Jackie, > > Does your doc have you one Cellcept and Imuran at the same time? I was > on Imuran and couldn't tolerate it, then began taking the Cellcept. > Never at the same time. I did take Imuran and Methotrexate at the same > time. > > Sorry that your tests showed digression. Maybe the Cellcept will > stabalize you. I know you hate the prednisone at 60. It turns me into > a raving maniac at that dosage. > > Your docs are following pretty much the same path that mine followed. > They were aggressive towards the Lupus, etc. and it has bought me some > time with the fibrosis. Hope it does the same for you. > > My kidneys have not been affected thus far. But, almost nothing else > has been spared. > > Take care, my prayers for success with Cellcept. > > Hugs, Joyce D. > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA > 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > Hello, I have been a member for awhile now but don't post very > > often. I have been living with this disease for a year and a half > > and Lord knows it does not always want to play nice. I was wondering > > if anyone has taken cellcept and Imuran together. I had done 10 > > months of cytoxan and developed an allergic reaction, so I am no > > longer able to take cytoxan. Since I have stoped in July I have had > > pnemonia 3 times and I am having decrease in my PFT's and my last 6 > > min. walk was down with my O2 falling to 85.I started Imuran and > > have been on steriods for 2 years, I take 60 mg. a day. My pulmonary > > doctor has now added cellcept along with all the other drugs. We are > > waiting to hear if insurance will pay for me to start Rituxan. > > Needless to say I am not sure what is worse the disease or all the > > meds. I have got to go for another CT because of the mass they found > > in my bottom left lung. They found that a few months ago and wanted > > to do a open lung bx, but I said no I wanted to repeat the CT in a > > month to see if there were any changes. Then we would go from there > > and see what needed done. I know thru all of this I have learned to > > enjoy life much more. When I thought Lupus was bad little did I know > > how good I had it. I now have heart, lungs, and kidneys affected. > > Thru all of this my faith and family keep me going. Thank you for > > listening to me. I would love to hear from anyone who has tried > > these medications. Thank you and god bless! Jackie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 -- Joyce, My doctor does have me on all three cellcept and Imuran and predisone. Along with all my other meds. How long have you had Lupus? I notice you live in Indiana so do I, about one hour from Cincinnati. Thank you for responding to my message. Have a great day.Jackie - In Breathe-Support , " Joyce " wrote: > > > Jackie, > > Does your doc have you one Cellcept and Imuran at the same time? I was > on Imuran and couldn't tolerate it, then began taking the Cellcept. > Never at the same time. I did take Imuran and Methotrexate at the same > time. > > Sorry that your tests showed digression. Maybe the Cellcept will > stabalize you. I know you hate the prednisone at 60. It turns me into > a raving maniac at that dosage. > > Your docs are following pretty much the same path that mine followed. > They were aggressive towards the Lupus, etc. and it has bought me some > time with the fibrosis. Hope it does the same for you. > > My kidneys have not been affected thus far. But, almost nothing else > has been spared. > > Take care, my prayers for success with Cellcept. > > Hugs, Joyce D. > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA > 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > Hello, I have been a member for awhile now but don't post very > > often. I have been living with this disease for a year and a half > > and Lord knows it does not always want to play nice. I was wondering > > if anyone has taken cellcept and Imuran together. I had done 10 > > months of cytoxan and developed an allergic reaction, so I am no > > longer able to take cytoxan. Since I have stoped in July I have had > > pnemonia 3 times and I am having decrease in my PFT's and my last 6 > > min. walk was down with my O2 falling to 85.I started Imuran and > > have been on steriods for 2 years, I take 60 mg. a day. My pulmonary > > doctor has now added cellcept along with all the other drugs. We are > > waiting to hear if insurance will pay for me to start Rituxan. > > Needless to say I am not sure what is worse the disease or all the > > meds. I have got to go for another CT because of the mass they found > > in my bottom left lung. They found that a few months ago and wanted > > to do a open lung bx, but I said no I wanted to repeat the CT in a > > month to see if there were any changes. Then we would go from there > > and see what needed done. I know thru all of this I have learned to > > enjoy life much more. When I thought Lupus was bad little did I know > > how good I had it. I now have heart, lungs, and kidneys affected. > > Thru all of this my faith and family keep me going. Thank you for > > listening to me. I would love to hear from anyone who has tried > > these medications. Thank you and god bless! Jackie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi Jackie, I have had something since I was 33. First they said RA, then Mixed Connective Tissue disease, then Lupus, then Sjogren's.....I test positive for all. In early '90s I began having various chest wall pain, then coughing and shortness of breath over the next few years. I had been diagnosed with all sorts of things before the docs finally did a biopsy in 1997 and found Pulmonary Fibrosis. They told me 2-4 years. It has been 10 years. I am considered in end stage and am experiencing a greater need for 02, but I still enjoy life. I live down near Louisville. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > >> > > Hello, I have been a member for awhile now but don't post very> > > often. I have been living with this disease for a year and a half> > > and Lord knows it does not always want to play nice. I was > wondering> > > if anyone has taken cellcept and Imuran together. I had done 10> > > months of cytoxan and developed an allergic reaction, so I am no> > > longer able to take cytoxan. Since I have stoped in July I have > had> > > pnemonia 3 times and I am having decrease in my PFT's and my > last 6> > > min. walk was down with my O2 falling to 85.I started Imuran and> > > have been on steriods for 2 years, I take 60 mg. a day. My > pulmonary> > > doctor has now added cellcept along with all the other drugs. We > are> > > waiting to hear if insurance will pay for me to start Rituxan.> > > Needless to say I am not sure what is worse the disease or all > the> > > meds. I have got to go for another CT because of the mass they > found> > > in my bottom left lung. They found that a few months ago and > wanted> > > to do a open lung bx, but I said no I wanted to repeat the CT in > a> > > month to see if there were any changes. Then we would go from > there> > > and see what needed done. I know thru all of this I have learned > to> > > enjoy life much more. When I thought Lupus was bad little did I > know> > > how good I had it. I now have heart, lungs, and kidneys affected.> > > Thru all of this my faith and family keep me going. Thank you for> > > listening to me. I would love to hear from anyone who has tried> > > these medications. Thank you and god bless! Jackie> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi Jackie, I have had something since I was 33. First they said RA, then Mixed Connective Tissue disease, then Lupus, then Sjogren's.....I test positive for all. In early '90s I began having various chest wall pain, then coughing and shortness of breath over the next few years. I had been diagnosed with all sorts of things before the docs finally did a biopsy in 1997 and found Pulmonary Fibrosis. They told me 2-4 years. It has been 10 years. I am considered in end stage and am experiencing a greater need for 02, but I still enjoy life. I live down near Louisville. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > >> > > Hello, I have been a member for awhile now but don't post very> > > often. I have been living with this disease for a year and a half> > > and Lord knows it does not always want to play nice. I was > wondering> > > if anyone has taken cellcept and Imuran together. I had done 10> > > months of cytoxan and developed an allergic reaction, so I am no> > > longer able to take cytoxan. Since I have stoped in July I have > had> > > pnemonia 3 times and I am having decrease in my PFT's and my > last 6> > > min. walk was down with my O2 falling to 85.I started Imuran and> > > have been on steriods for 2 years, I take 60 mg. a day. My > pulmonary> > > doctor has now added cellcept along with all the other drugs. We > are> > > waiting to hear if insurance will pay for me to start Rituxan.> > > Needless to say I am not sure what is worse the disease or all > the> > > meds. I have got to go for another CT because of the mass they > found> > > in my bottom left lung. They found that a few months ago and > wanted> > > to do a open lung bx, but I said no I wanted to repeat the CT in > a> > > month to see if there were any changes. Then we would go from > there> > > and see what needed done. I know thru all of this I have learned > to> > > enjoy life much more. When I thought Lupus was bad little did I > know> > > how good I had it. I now have heart, lungs, and kidneys affected.> > > Thru all of this my faith and family keep me going. Thank you for> > > listening to me. I would love to hear from anyone who has tried> > > these medications. Thank you and god bless! Jackie> > >> >> Quote Link to comment Share on other sites More sharing options...
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