Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 Welcome back, Tina! You can check out the photos and see our little angel who was born the end of February. Hi All Just wanted to say hi to everyone ,,Ive been on no mail about 2 months,Had alot going on. Someone get me up to date on everything,please. I will be on & off all day. Thanks Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 I had my tr in that timnew it has been 6 wks now " FRIENDS ARE ANGELS WHO LIFT US TO OUR FEET WHEN OUR WINGS HAVE TROUBLE REMEMBERING HOW TO FLY " . -31 DH- Rick-31 DS- Ricky 12 DD-Brittany 11 DD- Clarissa 10 FD- le 5 Presently not with us:-( TL- 12/92 TR- Dr. Levin 3/13/03 Left 6.5 cm Right 6cm Hi All > Just wanted to say hi to everyone ,,Ive been on no mail about 2 months,Had > alot going on. Someone get me up to date on everything,please. I will be on & > off all day. > Thanks Tina > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 I had my tr in that timnew it has been 6 wks now " FRIENDS ARE ANGELS WHO LIFT US TO OUR FEET WHEN OUR WINGS HAVE TROUBLE REMEMBERING HOW TO FLY " . -31 DH- Rick-31 DS- Ricky 12 DD-Brittany 11 DD- Clarissa 10 FD- le 5 Presently not with us:-( TL- 12/92 TR- Dr. Levin 3/13/03 Left 6.5 cm Right 6cm Hi All > Just wanted to say hi to everyone ,,Ive been on no mail about 2 months,Had > alot going on. Someone get me up to date on everything,please. I will be on & > off all day. > Thanks Tina > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 I had my tr in that timnew it has been 6 wks now " FRIENDS ARE ANGELS WHO LIFT US TO OUR FEET WHEN OUR WINGS HAVE TROUBLE REMEMBERING HOW TO FLY " . -31 DH- Rick-31 DS- Ricky 12 DD-Brittany 11 DD- Clarissa 10 FD- le 5 Presently not with us:-( TL- 12/92 TR- Dr. Levin 3/13/03 Left 6.5 cm Right 6cm Hi All > Just wanted to say hi to everyone ,,Ive been on no mail about 2 months,Had > alot going on. Someone get me up to date on everything,please. I will be on & > off all day. > Thanks Tina > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 rita introductions are very helpful it helps us all to knwo you all and to understand the problems soem people jsut ask questions and then its hard to answer on what basis they r on lol was it sally prouty that refered you to here im guessing you in her area shes a great lady to our list im in aus i have seen a few people in here who only have one or two features think you mentioned pda that is a part of charge there are a few chargers who have that so it isnt suprising but its interesting that she only has only the one or two things or should i say three as facial palsy is in it to meg might be able to explain it not everyoen as i understand it wil have all the features but if there is one or two then it is quite posible i dont knwo much bout the facial palsy but i know there r heaps in here that do and do know this you will find this group a great support ellen howe charger aus nearly 21 > > Hello to everybody, > > My name is Rita. My daughter is diagonised with Carge recently (she had > the CHD7 test done). Sally (a member on this group), advised me to join this > group. > This is a wonderful place to find support and ton of information. Been > going through so many messages since a week. > > I little background on my daugher. > She is 15 months old. She had a PDA ligation done at one month of age. > FOund out that she has conductive hearing loss (at 5 months). And Coloboma > (Optic nerve) when she was 9 months old. Our visit to the eye doctor was for > some other reason (She has some twitiching in her right eye for a couple of > weeks in August 05). ALso one of her eye looked small. But she hit all > visual milestones fine and was tracking good. Her coloboma. fortunalety > missed the macula. But still dont know how much vision she has. And finally > we went to a geneticist, who did CHD7 test. It came back positive. But > according to him, even he was surprised that she came back positive as she > did not fit his profile for a charger. Coloboma was the main reason for him > to order that test. > > One thing that is concerning us right now - is she has developed facial > palsy lately. few months back. She was ok will her 10th month. and then we > started noticing weekness on the left side of the face. Had an MRI done. > Nothing specific to the facial nerve, though it said right facial nerve was > a bit smaller than left. And recently found fluid in her ears. her ENT did a > myringotomy. Hopefully facial palsy is due to fuild. But the doctors owuld > not guarantee that. Also we are going for a CT scan to get a clearer picture > of the temporal bone (in the ears) > > Hoping to find support on this group. Anybody experieced this situation of > facial palsy developing later (but not born with it) for Charge syndrome. Is > it treatable. Please respond. And sorry for the long email. But thought a > little introduction would be helpful. > > Thanks > Rita > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save > big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 rita introductions are very helpful it helps us all to knwo you all and to understand the problems soem people jsut ask questions and then its hard to answer on what basis they r on lol was it sally prouty that refered you to here im guessing you in her area shes a great lady to our list im in aus i have seen a few people in here who only have one or two features think you mentioned pda that is a part of charge there are a few chargers who have that so it isnt suprising but its interesting that she only has only the one or two things or should i say three as facial palsy is in it to meg might be able to explain it not everyoen as i understand it wil have all the features but if there is one or two then it is quite posible i dont knwo much bout the facial palsy but i know there r heaps in here that do and do know this you will find this group a great support ellen howe charger aus nearly 21 > > Hello to everybody, > > My name is Rita. My daughter is diagonised with Carge recently (she had > the CHD7 test done). Sally (a member on this group), advised me to join this > group. > This is a wonderful place to find support and ton of information. Been > going through so many messages since a week. > > I little background on my daugher. > She is 15 months old. She had a PDA ligation done at one month of age. > FOund out that she has conductive hearing loss (at 5 months). And Coloboma > (Optic nerve) when she was 9 months old. Our visit to the eye doctor was for > some other reason (She has some twitiching in her right eye for a couple of > weeks in August 05). ALso one of her eye looked small. But she hit all > visual milestones fine and was tracking good. Her coloboma. fortunalety > missed the macula. But still dont know how much vision she has. And finally > we went to a geneticist, who did CHD7 test. It came back positive. But > according to him, even he was surprised that she came back positive as she > did not fit his profile for a charger. Coloboma was the main reason for him > to order that test. > > One thing that is concerning us right now - is she has developed facial > palsy lately. few months back. She was ok will her 10th month. and then we > started noticing weekness on the left side of the face. Had an MRI done. > Nothing specific to the facial nerve, though it said right facial nerve was > a bit smaller than left. And recently found fluid in her ears. her ENT did a > myringotomy. Hopefully facial palsy is due to fuild. But the doctors owuld > not guarantee that. Also we are going for a CT scan to get a clearer picture > of the temporal bone (in the ears) > > Hoping to find support on this group. Anybody experieced this situation of > facial palsy developing later (but not born with it) for Charge syndrome. Is > it treatable. Please respond. And sorry for the long email. But thought a > little introduction would be helpful. > > Thanks > Rita > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save > big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 rita introductions are very helpful it helps us all to knwo you all and to understand the problems soem people jsut ask questions and then its hard to answer on what basis they r on lol was it sally prouty that refered you to here im guessing you in her area shes a great lady to our list im in aus i have seen a few people in here who only have one or two features think you mentioned pda that is a part of charge there are a few chargers who have that so it isnt suprising but its interesting that she only has only the one or two things or should i say three as facial palsy is in it to meg might be able to explain it not everyoen as i understand it wil have all the features but if there is one or two then it is quite posible i dont knwo much bout the facial palsy but i know there r heaps in here that do and do know this you will find this group a great support ellen howe charger aus nearly 21 > > Hello to everybody, > > My name is Rita. My daughter is diagonised with Carge recently (she had > the CHD7 test done). Sally (a member on this group), advised me to join this > group. > This is a wonderful place to find support and ton of information. Been > going through so many messages since a week. > > I little background on my daugher. > She is 15 months old. She had a PDA ligation done at one month of age. > FOund out that she has conductive hearing loss (at 5 months). And Coloboma > (Optic nerve) when she was 9 months old. Our visit to the eye doctor was for > some other reason (She has some twitiching in her right eye for a couple of > weeks in August 05). ALso one of her eye looked small. But she hit all > visual milestones fine and was tracking good. Her coloboma. fortunalety > missed the macula. But still dont know how much vision she has. And finally > we went to a geneticist, who did CHD7 test. It came back positive. But > according to him, even he was surprised that she came back positive as she > did not fit his profile for a charger. Coloboma was the main reason for him > to order that test. > > One thing that is concerning us right now - is she has developed facial > palsy lately. few months back. She was ok will her 10th month. and then we > started noticing weekness on the left side of the face. Had an MRI done. > Nothing specific to the facial nerve, though it said right facial nerve was > a bit smaller than left. And recently found fluid in her ears. her ENT did a > myringotomy. Hopefully facial palsy is due to fuild. But the doctors owuld > not guarantee that. Also we are going for a CT scan to get a clearer picture > of the temporal bone (in the ears) > > Hoping to find support on this group. Anybody experieced this situation of > facial palsy developing later (but not born with it) for Charge syndrome. Is > it treatable. Please respond. And sorry for the long email. But thought a > little introduction would be helpful. > > Thanks > Rita > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save > big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Thanks a lot folks for your support, thanks Ellen, Michele and Crystal. Your emails were so re-assuring. Yes, sally prouty had advised me to join this group. She is a wonderful lady. Gives me hope knowing about Andy too. Good to know about little Aubrie. That she is such a wonderful girl. Crystal, can you give me little more information about Eva's facial palsy. What other characteristics of Charge does she have. My daughter did not have this facial palsy when she was born. So we are hoping that it will go away or can be treated. Anybody with this kind of acquired facial palsy. We are still trying to find out the cause for this. Rita supermama95 wrote: Welcome Rita, My name is Crystal and my little Charger is Eva and she is 11 and a half months old. She was born with the facial paralysis so I can really help you with your problem. Eva also had one kidney and the colabomas. She also has a hearing loss and a PDA and an ASD of her heart. She is behind on her milestones but most Chargers are. She cant sit yet but she did just start rolling. I also have 2 boys, is 10 and is 3 they are doing great and love Eva so much!! I know since I joined the group a few months back I have found so much support and love here I hope you find the same!! Crystal and Eva > > Hello to everybody, > > My name is Rita. My daughter is diagonised with Carge recently (she had the CHD7 test done). Sally (a member on this group), advised me to join this group. > This is a wonderful place to find support and ton of information. Been going through so many messages since a week. > > I little background on my daugher. > She is 15 months old. She had a PDA ligation done at one month of age. > FOund out that she has conductive hearing loss (at 5 months). And Coloboma (Optic nerve) when she was 9 months old. Our visit to the eye doctor was for some other reason (She has some twitiching in her right eye for a couple of weeks in August 05). ALso one of her eye looked small. But she hit all visual milestones fine and was tracking good. Her coloboma. fortunalety missed the macula. But still dont know how much vision she has. And finally we went to a geneticist, who did CHD7 test. It came back positive. But according to him, even he was surprised that she came back positive as she did not fit his profile for a charger. Coloboma was the main reason for him to order that test. > > One thing that is concerning us right now - is she has developed facial palsy lately. few months back. She was ok will her 10th month. and then we started noticing weekness on the left side of the face. Had an MRI done. Nothing specific to the facial nerve, though it said right facial nerve was a bit smaller than left. And recently found fluid in her ears. her ENT did a myringotomy. Hopefully facial palsy is due to fuild. But the doctors owuld not guarantee that. Also we are going for a CT scan to get a clearer picture of the temporal bone (in the ears) > > Hoping to find support on this group. Anybody experieced this situation of facial palsy developing later (but not born with it) for Charge syndrome. Is it treatable. Please respond. And sorry for the long email. But thought a little introduction would be helpful. > > Thanks > Rita > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Rita, Welcome to the list - I'm pleased you found us. If you have met Sally Prouty then you already have a great source of information & support I'm sure - she is wonderful! I have not experienced the late-onset facial palsy with my daughter, as she had hers since birth (it did improve from birth until now but she still has it). I'd love to hear more about your daughter, what is her name? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Rita, Welcome to the list - I'm pleased you found us. If you have met Sally Prouty then you already have a great source of information & support I'm sure - she is wonderful! I have not experienced the late-onset facial palsy with my daughter, as she had hers since birth (it did improve from birth until now but she still has it). I'd love to hear more about your daughter, what is her name? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Thanks Irene. I am finding my hands shaking a lot the last few days, too. Is better today, though. Yesterday, I was just so tired all day I even took a nap in the afternoon, which is something I NEVER do, unless I am sick. Feel much better today, though. Am thinking of going out for a short walk, just a mile, don't want to overdo after feeling so crappy yesterday. Will see after I get out in the heat. I may change my mind and come back inside!! HEE HEE!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Re: Hi allTo: Breathe-Support Date: Friday, June 6, 2008, 10:55 PM Caro, Careful when getting off Pred! It's OK to wallow...My dr's each time they put me on Prednisone which I hate, they decrease it 5mg per week. All the best at your appointment, next week. I know how you feel about the stomach being distended and the bruises...I Hope in time, the symptoms will settle down. Hugs Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 Re: Hi all Caro, Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop. May God be with you and I hope all your questions get answered in Birmingham. Don't worry about the weight. It will come off. Just a fact of Pred. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered > the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April, > too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> > Caro> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Thanks Irene. I am finding my hands shaking a lot the last few days, too. Is better today, though. Yesterday, I was just so tired all day I even took a nap in the afternoon, which is something I NEVER do, unless I am sick. Feel much better today, though. Am thinking of going out for a short walk, just a mile, don't want to overdo after feeling so crappy yesterday. Will see after I get out in the heat. I may change my mind and come back inside!! HEE HEE!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Re: Hi allTo: Breathe-Support Date: Friday, June 6, 2008, 10:55 PM Caro, Careful when getting off Pred! It's OK to wallow...My dr's each time they put me on Prednisone which I hate, they decrease it 5mg per week. All the best at your appointment, next week. I know how you feel about the stomach being distended and the bruises...I Hope in time, the symptoms will settle down. Hugs Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 Re: Hi all Caro, Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop. May God be with you and I hope all your questions get answered in Birmingham. Don't worry about the weight. It will come off. Just a fact of Pred. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered > the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April, > too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> > Caro> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Thanks Irene. I am finding my hands shaking a lot the last few days, too. Is better today, though. Yesterday, I was just so tired all day I even took a nap in the afternoon, which is something I NEVER do, unless I am sick. Feel much better today, though. Am thinking of going out for a short walk, just a mile, don't want to overdo after feeling so crappy yesterday. Will see after I get out in the heat. I may change my mind and come back inside!! HEE HEE!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Re: Hi allTo: Breathe-Support Date: Friday, June 6, 2008, 10:55 PM Caro, Careful when getting off Pred! It's OK to wallow...My dr's each time they put me on Prednisone which I hate, they decrease it 5mg per week. All the best at your appointment, next week. I know how you feel about the stomach being distended and the bruises...I Hope in time, the symptoms will settle down. Hugs Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 Re: Hi all Caro, Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop. May God be with you and I hope all your questions get answered in Birmingham. Don't worry about the weight. It will come off. Just a fact of Pred. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered > the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April, > too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> > Caro> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Caro...I'm glad you're feeling much better today. I Hope you Enjoy your walk. I haven't been out since Friday. Yesterday, we had our first heat wave, A/C was on all day and today too. I slept through the entire Saturday, my mom woke me at 11am, we chatted for a few minutes on the phone, went back to sleep woke up at 2:30pm, had a small sandwich. My mom and sister woke me up again around 7:30pm. I went to bed before 9pm. This morning my mom woke up at 10am. Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 Asthma 02/92 Re: Hi all Caro, Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop. May God be with you and I hope all your questions get answered in Birmingham. Don't worry about the weight. It will come off. Just a fact of Pred. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered > the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April, > too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> > Caro> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Caro...I'm glad you're feeling much better today. I Hope you Enjoy your walk. I haven't been out since Friday. Yesterday, we had our first heat wave, A/C was on all day and today too. I slept through the entire Saturday, my mom woke me at 11am, we chatted for a few minutes on the phone, went back to sleep woke up at 2:30pm, had a small sandwich. My mom and sister woke me up again around 7:30pm. I went to bed before 9pm. This morning my mom woke up at 10am. Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 Asthma 02/92 Re: Hi all Caro, Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop. May God be with you and I hope all your questions get answered in Birmingham. Don't worry about the weight. It will come off. Just a fact of Pred. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered > the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April, > too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> > Caro> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Caro...I'm glad you're feeling much better today. I Hope you Enjoy your walk. I haven't been out since Friday. Yesterday, we had our first heat wave, A/C was on all day and today too. I slept through the entire Saturday, my mom woke me at 11am, we chatted for a few minutes on the phone, went back to sleep woke up at 2:30pm, had a small sandwich. My mom and sister woke me up again around 7:30pm. I went to bed before 9pm. This morning my mom woke up at 10am. Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 Asthma 02/92 Re: Hi all Caro, Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop. May God be with you and I hope all your questions get answered in Birmingham. Don't worry about the weight. It will come off. Just a fact of Pred. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered > the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April, > too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> > Caro> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi ! Glad to see you're back with us again...family drama is exhausting! So happy to hear about the results of your ct scan and doctor visit. Enjoy the good news! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Hi all I've been offline for the last couple of weeks. My life became a zoo for a while but there just comes a time when enough is enough and we tell people to leave us alone because we don't need their problems and refuse to be in the middle of the maelstrom anymore. And so I did. And they did. So good. Family issues of this magnitude never really go away so we will see what happens.I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did not show any current signs of my pneumonitis or fibrosis. And my lung capacity was up to 80%. He went on to say that it would come back because that is the nature of the disease but for now I'm doing quite well. The damage is still damaged but it is good for now.The biopsy on the place on my gum is Tuesday. I am not at all worried about it. Just one more weird thing that has happened to me.Today was the last day for our paster at church. He officially retired and took a job outside the conference. It is Methodist pastor swap week! Nice and clean the way we do it.Bruce, I'm glad to hear you made it back safely from your travels. I hope everybody has a good week. S, Lubbock, TXNSIP w/PF 12/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi ! Glad to see you're back with us again...family drama is exhausting! So happy to hear about the results of your ct scan and doctor visit. Enjoy the good news! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Hi all I've been offline for the last couple of weeks. My life became a zoo for a while but there just comes a time when enough is enough and we tell people to leave us alone because we don't need their problems and refuse to be in the middle of the maelstrom anymore. And so I did. And they did. So good. Family issues of this magnitude never really go away so we will see what happens.I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did not show any current signs of my pneumonitis or fibrosis. And my lung capacity was up to 80%. He went on to say that it would come back because that is the nature of the disease but for now I'm doing quite well. The damage is still damaged but it is good for now.The biopsy on the place on my gum is Tuesday. I am not at all worried about it. Just one more weird thing that has happened to me.Today was the last day for our paster at church. He officially retired and took a job outside the conference. It is Methodist pastor swap week! Nice and clean the way we do it.Bruce, I'm glad to hear you made it back safely from your travels. I hope everybody has a good week. S, Lubbock, TXNSIP w/PF 12/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi ! Glad to see you're back with us again...family drama is exhausting! So happy to hear about the results of your ct scan and doctor visit. Enjoy the good news! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Hi all I've been offline for the last couple of weeks. My life became a zoo for a while but there just comes a time when enough is enough and we tell people to leave us alone because we don't need their problems and refuse to be in the middle of the maelstrom anymore. And so I did. And they did. So good. Family issues of this magnitude never really go away so we will see what happens.I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did not show any current signs of my pneumonitis or fibrosis. And my lung capacity was up to 80%. He went on to say that it would come back because that is the nature of the disease but for now I'm doing quite well. The damage is still damaged but it is good for now.The biopsy on the place on my gum is Tuesday. I am not at all worried about it. Just one more weird thing that has happened to me.Today was the last day for our paster at church. He officially retired and took a job outside the conference. It is Methodist pastor swap week! Nice and clean the way we do it.Bruce, I'm glad to hear you made it back safely from your travels. I hope everybody has a good week. S, Lubbock, TXNSIP w/PF 12/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Glad to see you back. I really appreciate letting me know and hope she conveyed my thoughts. A very wise statement you made about others. I never could say no to someone with problems but finally had to recognize that even though I want to help, I sometimes just don't have the energy to assume more. Taking care of ourselves takes all we have sometimes. > > I've been offline for the last couple of weeks. My life became a zoo > for a while but there just comes a time when enough is enough and we > tell people to leave us alone because we don't need their problems > and refuse to be in the middle of the maelstrom anymore. And so I > did. And they did. So good. Family issues of this magnitude never > really go away so we will see what happens. > > I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did > not show any current signs of my pneumonitis or fibrosis. And my > lung capacity was up to 80%. He went on to say that it would come > back because that is the nature of the disease but for now I'm doing > quite well. The damage is still damaged but it is good for now. > > The biopsy on the place on my gum is Tuesday. I am not at all > worried about it. Just one more weird thing that has happened to me. > > Today was the last day for our paster at church. He officially > retired and took a job outside the conference. It is Methodist > pastor swap week! Nice and clean the way we do it. > > Bruce, I'm glad to hear you made it back safely from your travels. > > I hope everybody has a good week. > > S, Lubbock, TX > NSIP w/PF 12/2006 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Glad to see you back. I really appreciate letting me know and hope she conveyed my thoughts. A very wise statement you made about others. I never could say no to someone with problems but finally had to recognize that even though I want to help, I sometimes just don't have the energy to assume more. Taking care of ourselves takes all we have sometimes. > > I've been offline for the last couple of weeks. My life became a zoo > for a while but there just comes a time when enough is enough and we > tell people to leave us alone because we don't need their problems > and refuse to be in the middle of the maelstrom anymore. And so I > did. And they did. So good. Family issues of this magnitude never > really go away so we will see what happens. > > I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did > not show any current signs of my pneumonitis or fibrosis. And my > lung capacity was up to 80%. He went on to say that it would come > back because that is the nature of the disease but for now I'm doing > quite well. The damage is still damaged but it is good for now. > > The biopsy on the place on my gum is Tuesday. I am not at all > worried about it. Just one more weird thing that has happened to me. > > Today was the last day for our paster at church. He officially > retired and took a job outside the conference. It is Methodist > pastor swap week! Nice and clean the way we do it. > > Bruce, I'm glad to hear you made it back safely from your travels. > > I hope everybody has a good week. > > S, Lubbock, TX > NSIP w/PF 12/2006 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Glad to see you back. I really appreciate letting me know and hope she conveyed my thoughts. A very wise statement you made about others. I never could say no to someone with problems but finally had to recognize that even though I want to help, I sometimes just don't have the energy to assume more. Taking care of ourselves takes all we have sometimes. > > I've been offline for the last couple of weeks. My life became a zoo > for a while but there just comes a time when enough is enough and we > tell people to leave us alone because we don't need their problems > and refuse to be in the middle of the maelstrom anymore. And so I > did. And they did. So good. Family issues of this magnitude never > really go away so we will see what happens. > > I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did > not show any current signs of my pneumonitis or fibrosis. And my > lung capacity was up to 80%. He went on to say that it would come > back because that is the nature of the disease but for now I'm doing > quite well. The damage is still damaged but it is good for now. > > The biopsy on the place on my gum is Tuesday. I am not at all > worried about it. Just one more weird thing that has happened to me. > > Today was the last day for our paster at church. He officially > retired and took a job outside the conference. It is Methodist > pastor swap week! Nice and clean the way we do it. > > Bruce, I'm glad to hear you made it back safely from your travels. > > I hope everybody has a good week. > > S, Lubbock, TX > NSIP w/PF 12/2006 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Bruce. Yes, it has been a rough couple of weeks. But it is all about taking care of what needs to be taken care of now. I just want to get past this nasty biopsy on Tuesday then hopefully life can go on. We are supposed to go to Florida to see and in July but we are waiting on the biopsy results to make that decision. I can't use all my days for vacation if I will have to use them for chemo. But I'm thinking positive thoughts and have mighty prayer warriors on my team. > > > > I've been offline for the last couple of weeks. My life became a zoo > > for a while but there just comes a time when enough is enough and we > > tell people to leave us alone because we don't need their problems > > and refuse to be in the middle of the maelstrom anymore. And so I > > did. And they did. So good. Family issues of this magnitude never > > really go away so we will see what happens. > > > > I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did > > not show any current signs of my pneumonitis or fibrosis. And my > > lung capacity was up to 80%. He went on to say that it would come > > back because that is the nature of the disease but for now I'm doing > > quite well. The damage is still damaged but it is good for now. > > > > The biopsy on the place on my gum is Tuesday. I am not at all > > worried about it. Just one more weird thing that has happened to me. > > > > Today was the last day for our paster at church. He officially > > retired and took a job outside the conference. It is Methodist > > pastor swap week! Nice and clean the way we do it. > > > > Bruce, I'm glad to hear you made it back safely from your travels. > > > > I hope everybody has a good week. > > > > S, Lubbock, TX > > NSIP w/PF 12/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Bruce. Yes, it has been a rough couple of weeks. But it is all about taking care of what needs to be taken care of now. I just want to get past this nasty biopsy on Tuesday then hopefully life can go on. We are supposed to go to Florida to see and in July but we are waiting on the biopsy results to make that decision. I can't use all my days for vacation if I will have to use them for chemo. But I'm thinking positive thoughts and have mighty prayer warriors on my team. > > > > I've been offline for the last couple of weeks. My life became a zoo > > for a while but there just comes a time when enough is enough and we > > tell people to leave us alone because we don't need their problems > > and refuse to be in the middle of the maelstrom anymore. And so I > > did. And they did. So good. Family issues of this magnitude never > > really go away so we will see what happens. > > > > I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did > > not show any current signs of my pneumonitis or fibrosis. And my > > lung capacity was up to 80%. He went on to say that it would come > > back because that is the nature of the disease but for now I'm doing > > quite well. The damage is still damaged but it is good for now. > > > > The biopsy on the place on my gum is Tuesday. I am not at all > > worried about it. Just one more weird thing that has happened to me. > > > > Today was the last day for our paster at church. He officially > > retired and took a job outside the conference. It is Methodist > > pastor swap week! Nice and clean the way we do it. > > > > Bruce, I'm glad to hear you made it back safely from your travels. > > > > I hope everybody has a good week. > > > > S, Lubbock, TX > > NSIP w/PF 12/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Bruce. Yes, it has been a rough couple of weeks. But it is all about taking care of what needs to be taken care of now. I just want to get past this nasty biopsy on Tuesday then hopefully life can go on. We are supposed to go to Florida to see and in July but we are waiting on the biopsy results to make that decision. I can't use all my days for vacation if I will have to use them for chemo. But I'm thinking positive thoughts and have mighty prayer warriors on my team. > > > > I've been offline for the last couple of weeks. My life became a zoo > > for a while but there just comes a time when enough is enough and we > > tell people to leave us alone because we don't need their problems > > and refuse to be in the middle of the maelstrom anymore. And so I > > did. And they did. So good. Family issues of this magnitude never > > really go away so we will see what happens. > > > > I had a CT scan on Monday and saw the pulmo on Tuesday. The CT did > > not show any current signs of my pneumonitis or fibrosis. And my > > lung capacity was up to 80%. He went on to say that it would come > > back because that is the nature of the disease but for now I'm doing > > quite well. The damage is still damaged but it is good for now. > > > > The biopsy on the place on my gum is Tuesday. I am not at all > > worried about it. Just one more weird thing that has happened to me. > > > > Today was the last day for our paster at church. He officially > > retired and took a job outside the conference. It is Methodist > > pastor swap week! Nice and clean the way we do it. > > > > Bruce, I'm glad to hear you made it back safely from your travels. > > > > I hope everybody has a good week. > > > > S, Lubbock, TX > > NSIP w/PF 12/2006 > > > Quote Link to comment Share on other sites More sharing options...
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