Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Wow, I got back to work today to find over 200 messages on my email due to my groups, it's nice to see all the conversation here. I have enjoyed reading through all the information. Today and this weekend has not been good for me. The fibro has found my feet for sure. Saturday, I got to where I could hardly stand up on my feet. They just ached and my calf muscles and this morning also my thighs. I went shopping for back to school clothes for my little girl Saturday and then cooked a big dinner for my family and invited my sister and her family. By the time they got to my house, I had to let my husband be the host. I could not stand up for any amount of time. My feet hurt so badly. My sister has fibro as well as rheumatoid arthritis. So she understood completely. Which did not make me feel bad because I couldn't be the host I wanted to be. But dinner was great. If I say so myself. I cooked the old favorites at my house. Barbeque rabbit, fresh from the garden green beans, fresh sweet corn, Cornbread, mac and cheese and hot dogs for the kids(since they won't yet even try barbeque rabbit.) We had a nice time regardless. But Sunday the legs started aching and Today I had to come in late, since it takes me soo long to get ready in the morning during a flare. I'm almost scared about taking Kerianne to school this year. I'm really going to have to pushhh myself getting her to school on time. I dread it. My thighs are just aching. It feels as if I have to make legs move to walk. If I can just make it another hour or so, I won't feel toooo guilty leaving work early today. a Faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Wow, I got back to work today to find over 200 messages on my email due to my groups, it's nice to see all the conversation here. I have enjoyed reading through all the information. Today and this weekend has not been good for me. The fibro has found my feet for sure. Saturday, I got to where I could hardly stand up on my feet. They just ached and my calf muscles and this morning also my thighs. I went shopping for back to school clothes for my little girl Saturday and then cooked a big dinner for my family and invited my sister and her family. By the time they got to my house, I had to let my husband be the host. I could not stand up for any amount of time. My feet hurt so badly. My sister has fibro as well as rheumatoid arthritis. So she understood completely. Which did not make me feel bad because I couldn't be the host I wanted to be. But dinner was great. If I say so myself. I cooked the old favorites at my house. Barbeque rabbit, fresh from the garden green beans, fresh sweet corn, Cornbread, mac and cheese and hot dogs for the kids(since they won't yet even try barbeque rabbit.) We had a nice time regardless. But Sunday the legs started aching and Today I had to come in late, since it takes me soo long to get ready in the morning during a flare. I'm almost scared about taking Kerianne to school this year. I'm really going to have to pushhh myself getting her to school on time. I dread it. My thighs are just aching. It feels as if I have to make legs move to walk. If I can just make it another hour or so, I won't feel toooo guilty leaving work early today. a Faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Wow, I got back to work today to find over 200 messages on my email due to my groups, it's nice to see all the conversation here. I have enjoyed reading through all the information. Today and this weekend has not been good for me. The fibro has found my feet for sure. Saturday, I got to where I could hardly stand up on my feet. They just ached and my calf muscles and this morning also my thighs. I went shopping for back to school clothes for my little girl Saturday and then cooked a big dinner for my family and invited my sister and her family. By the time they got to my house, I had to let my husband be the host. I could not stand up for any amount of time. My feet hurt so badly. My sister has fibro as well as rheumatoid arthritis. So she understood completely. Which did not make me feel bad because I couldn't be the host I wanted to be. But dinner was great. If I say so myself. I cooked the old favorites at my house. Barbeque rabbit, fresh from the garden green beans, fresh sweet corn, Cornbread, mac and cheese and hot dogs for the kids(since they won't yet even try barbeque rabbit.) We had a nice time regardless. But Sunday the legs started aching and Today I had to come in late, since it takes me soo long to get ready in the morning during a flare. I'm almost scared about taking Kerianne to school this year. I'm really going to have to pushhh myself getting her to school on time. I dread it. My thighs are just aching. It feels as if I have to make legs move to walk. If I can just make it another hour or so, I won't feel toooo guilty leaving work early today. a Faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 a, One good thing about living in Tn. is the good food, I an cooking me some pinto beans and cornbread for supper. Yum Yum, Audie re: Good morning Wow, I got back to work today to find over 200 messages on my email due to my groups, it's nice to see all the conversation here. I have enjoyed reading through all the information. Today and this weekend has not been good for me. The fibro has found my feet for sure. Saturday, I got to where I could hardly stand up on my feet. They just ached and my calf muscles and this morning also my thighs. I went shopping for back to school clothes for my little girl Saturday and then cooked a big dinner for my family and invited my sister and her family. By the time they got to my house, I had to let my husband be the host. I could not stand up for any amount of time. My feet hurt so badly. My sister has fibro as well as rheumatoid arthritis. So she understood completely. Which did not make me feel bad because I couldn't be the host I wanted to be. But dinner was great. If I say so myself. I cooked the old favorites at my house. Barbeque rabbit, fresh from the garden green beans, fresh sweet corn, Cornbread, mac and cheese and hot dogs for the kids(since they won't yet even try barbeque rabbit.) We had a nice time regardless. But Sunday the legs started aching and Today I had to come in late, since it takes me soo long to get ready in the morning during a flare. I'm almost scared about taking Kerianne to school this year. I'm really going to have to pushhh myself getting her to school on time. I dread it. My thighs are just aching. It feels as if I have to make legs move to walk. If I can just make it another hour or so, I won't feel toooo guilty leaving work early today. a Faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 a, One good thing about living in Tn. is the good food, I an cooking me some pinto beans and cornbread for supper. Yum Yum, Audie re: Good morning Wow, I got back to work today to find over 200 messages on my email due to my groups, it's nice to see all the conversation here. I have enjoyed reading through all the information. Today and this weekend has not been good for me. The fibro has found my feet for sure. Saturday, I got to where I could hardly stand up on my feet. They just ached and my calf muscles and this morning also my thighs. I went shopping for back to school clothes for my little girl Saturday and then cooked a big dinner for my family and invited my sister and her family. By the time they got to my house, I had to let my husband be the host. I could not stand up for any amount of time. My feet hurt so badly. My sister has fibro as well as rheumatoid arthritis. So she understood completely. Which did not make me feel bad because I couldn't be the host I wanted to be. But dinner was great. If I say so myself. I cooked the old favorites at my house. Barbeque rabbit, fresh from the garden green beans, fresh sweet corn, Cornbread, mac and cheese and hot dogs for the kids(since they won't yet even try barbeque rabbit.) We had a nice time regardless. But Sunday the legs started aching and Today I had to come in late, since it takes me soo long to get ready in the morning during a flare. I'm almost scared about taking Kerianne to school this year. I'm really going to have to pushhh myself getting her to school on time. I dread it. My thighs are just aching. It feels as if I have to make legs move to walk. If I can just make it another hour or so, I won't feel toooo guilty leaving work early today. a Faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 a, One good thing about living in Tn. is the good food, I an cooking me some pinto beans and cornbread for supper. Yum Yum, Audie re: Good morning Wow, I got back to work today to find over 200 messages on my email due to my groups, it's nice to see all the conversation here. I have enjoyed reading through all the information. Today and this weekend has not been good for me. The fibro has found my feet for sure. Saturday, I got to where I could hardly stand up on my feet. They just ached and my calf muscles and this morning also my thighs. I went shopping for back to school clothes for my little girl Saturday and then cooked a big dinner for my family and invited my sister and her family. By the time they got to my house, I had to let my husband be the host. I could not stand up for any amount of time. My feet hurt so badly. My sister has fibro as well as rheumatoid arthritis. So she understood completely. Which did not make me feel bad because I couldn't be the host I wanted to be. But dinner was great. If I say so myself. I cooked the old favorites at my house. Barbeque rabbit, fresh from the garden green beans, fresh sweet corn, Cornbread, mac and cheese and hot dogs for the kids(since they won't yet even try barbeque rabbit.) We had a nice time regardless. But Sunday the legs started aching and Today I had to come in late, since it takes me soo long to get ready in the morning during a flare. I'm almost scared about taking Kerianne to school this year. I'm really going to have to pushhh myself getting her to school on time. I dread it. My thighs are just aching. It feels as if I have to make legs move to walk. If I can just make it another hour or so, I won't feel toooo guilty leaving work early today. a Faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 In a message dated 08/19/2002 8:17:16 PM US Eastern Standard Time, suzy1@... writes: > One good thing about living in Tn. I want to move to TN...I love the country down there...it is soo pretty....I might settle for the very southern tip of Kentucky....what can I say I'm easy to please...I love the country down there and the people are so genuine....they are great. Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 In a message dated 08/19/2002 8:17:16 PM US Eastern Standard Time, suzy1@... writes: > One good thing about living in Tn. I want to move to TN...I love the country down there...it is soo pretty....I might settle for the very southern tip of Kentucky....what can I say I'm easy to please...I love the country down there and the people are so genuine....they are great. Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 In a message dated 08/19/2002 8:17:16 PM US Eastern Standard Time, suzy1@... writes: > One good thing about living in Tn. I want to move to TN...I love the country down there...it is soo pretty....I might settle for the very southern tip of Kentucky....what can I say I'm easy to please...I love the country down there and the people are so genuine....they are great. Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 I agree Audie...I have been spoiled with my mom's and grandmother's cookin', I'm 32 and just now starting to cook like them. My Hubby is startled I believe, he looks at me lately when I'm cooking " Good " food like, " Where did you come from and what did you do with my wife? " HEE HEE a Faye --- " C. " suzy1@...> wrote: > a, One good thing about living in Tn. is the > good food, I an cooking me some pinto beans and > cornbread for supper. Yum Yum, Audie > re: Good morning > > > Wow, I got back to work today to find over 200 > messages on my email > due to my groups, it's nice to see all the > conversation here. I have > enjoyed reading through all the information. > > Today and this weekend has not been good for me. > The fibro has found > my feet for sure. Saturday, I got to where I could > hardly stand up on > my feet. They just ached and my calf muscles and > this morning also my > thighs. I went shopping for back to school clothes > for my little girl > Saturday and then cooked a big dinner for my > family and invited my > sister and her family. By the time they got to my > house, I had to let > my husband be the host. I could not stand up for > any amount of time. > My feet hurt so badly. My sister has fibro as well > as rheumatoid > arthritis. So she understood completely. Which did > not make me feel > bad because I couldn't be the host I wanted to be. > But dinner was > great. If I say so myself. I cooked the old > favorites at my house. > Barbeque rabbit, fresh from the garden green > beans, fresh sweet corn, > Cornbread, mac and cheese and hot dogs for the > kids(since they won't > yet even try barbeque rabbit.) We had a nice time > regardless. > But Sunday the legs started aching and Today I had > to come in late, > since it takes me soo long to get ready in the > morning during a > flare. I'm almost scared about taking Kerianne to > school this year. > I'm really going to have to pushhh myself getting > her to school on > time. I dread it. My thighs are just aching. It > feels as if I have to > make legs move to walk. If I can just make it > another hour or so, I > won't feel toooo guilty leaving work early today. > > a Faye > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 I agree Audie...I have been spoiled with my mom's and grandmother's cookin', I'm 32 and just now starting to cook like them. My Hubby is startled I believe, he looks at me lately when I'm cooking " Good " food like, " Where did you come from and what did you do with my wife? " HEE HEE a Faye --- " C. " suzy1@...> wrote: > a, One good thing about living in Tn. is the > good food, I an cooking me some pinto beans and > cornbread for supper. Yum Yum, Audie > re: Good morning > > > Wow, I got back to work today to find over 200 > messages on my email > due to my groups, it's nice to see all the > conversation here. I have > enjoyed reading through all the information. > > Today and this weekend has not been good for me. > The fibro has found > my feet for sure. Saturday, I got to where I could > hardly stand up on > my feet. They just ached and my calf muscles and > this morning also my > thighs. I went shopping for back to school clothes > for my little girl > Saturday and then cooked a big dinner for my > family and invited my > sister and her family. By the time they got to my > house, I had to let > my husband be the host. I could not stand up for > any amount of time. > My feet hurt so badly. My sister has fibro as well > as rheumatoid > arthritis. So she understood completely. Which did > not make me feel > bad because I couldn't be the host I wanted to be. > But dinner was > great. If I say so myself. I cooked the old > favorites at my house. > Barbeque rabbit, fresh from the garden green > beans, fresh sweet corn, > Cornbread, mac and cheese and hot dogs for the > kids(since they won't > yet even try barbeque rabbit.) We had a nice time > regardless. > But Sunday the legs started aching and Today I had > to come in late, > since it takes me soo long to get ready in the > morning during a > flare. I'm almost scared about taking Kerianne to > school this year. > I'm really going to have to pushhh myself getting > her to school on > time. I dread it. My thighs are just aching. It > feels as if I have to > make legs move to walk. If I can just make it > another hour or so, I > won't feel toooo guilty leaving work early today. > > a Faye > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 I agree Audie...I have been spoiled with my mom's and grandmother's cookin', I'm 32 and just now starting to cook like them. My Hubby is startled I believe, he looks at me lately when I'm cooking " Good " food like, " Where did you come from and what did you do with my wife? " HEE HEE a Faye --- " C. " suzy1@...> wrote: > a, One good thing about living in Tn. is the > good food, I an cooking me some pinto beans and > cornbread for supper. Yum Yum, Audie > re: Good morning > > > Wow, I got back to work today to find over 200 > messages on my email > due to my groups, it's nice to see all the > conversation here. I have > enjoyed reading through all the information. > > Today and this weekend has not been good for me. > The fibro has found > my feet for sure. Saturday, I got to where I could > hardly stand up on > my feet. They just ached and my calf muscles and > this morning also my > thighs. I went shopping for back to school clothes > for my little girl > Saturday and then cooked a big dinner for my > family and invited my > sister and her family. By the time they got to my > house, I had to let > my husband be the host. I could not stand up for > any amount of time. > My feet hurt so badly. My sister has fibro as well > as rheumatoid > arthritis. So she understood completely. Which did > not make me feel > bad because I couldn't be the host I wanted to be. > But dinner was > great. If I say so myself. I cooked the old > favorites at my house. > Barbeque rabbit, fresh from the garden green > beans, fresh sweet corn, > Cornbread, mac and cheese and hot dogs for the > kids(since they won't > yet even try barbeque rabbit.) We had a nice time > regardless. > But Sunday the legs started aching and Today I had > to come in late, > since it takes me soo long to get ready in the > morning during a > flare. I'm almost scared about taking Kerianne to > school this year. > I'm really going to have to pushhh myself getting > her to school on > time. I dread it. My thighs are just aching. It > feels as if I have to > make legs move to walk. If I can just make it > another hour or so, I > won't feel toooo guilty leaving work early today. > > a Faye > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi Margo! Your message came through..just a bit late. Welcome to this group. I am sorry your daughter has cf, but so glad she is getting what she needs and is gaining weight, etc. It is a roller coaster, and that part really doesn't change, but some stuff gets a little easier. Certainly this list helps! My son is 6, and was diagnosed at birth, so he has never known what it was like not to have cf. This seems to me to be an easier way to deal with it. It must be hard being 12 and learning you have a chronic disease. How is your daughter taking this? Welcome again. Hope you love it here. Lenora >HI,this is just the group I have been searching for. My 13 yr old >daughter was diagnosed with CF last yr at this time. It has been a >rollercoaster of emotions ever sense, but we try to stay positive >for her. She is doing very well at the time, but was put in the >hospital in March with pneumonia in both lungs. Was in there for a >week, then home health came in and showed me how to do her meds >myself. As of right now we are treating her for asperillas(probably >ms, sorry) she is taking Sporanox and Prednisone, and doing well on >that. She also has to take Ultrase MT 18 with meals and snacks, >which I think is helping because she has gained 5 pounds and looking >very good. I try to get a Scandi shake down her every other night, >and she doesn't seem to mind the taste, as long as its with ice >cream,LOL. > >It will be nice talking to other people that can relate, you know my >friends and family have been a great support but don't really know >the real affects this disease has on a child, or there parents. > >Margo > > > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi Margo! Your message came through..just a bit late. Welcome to this group. I am sorry your daughter has cf, but so glad she is getting what she needs and is gaining weight, etc. It is a roller coaster, and that part really doesn't change, but some stuff gets a little easier. Certainly this list helps! My son is 6, and was diagnosed at birth, so he has never known what it was like not to have cf. This seems to me to be an easier way to deal with it. It must be hard being 12 and learning you have a chronic disease. How is your daughter taking this? Welcome again. Hope you love it here. Lenora >HI,this is just the group I have been searching for. My 13 yr old >daughter was diagnosed with CF last yr at this time. It has been a >rollercoaster of emotions ever sense, but we try to stay positive >for her. She is doing very well at the time, but was put in the >hospital in March with pneumonia in both lungs. Was in there for a >week, then home health came in and showed me how to do her meds >myself. As of right now we are treating her for asperillas(probably >ms, sorry) she is taking Sporanox and Prednisone, and doing well on >that. She also has to take Ultrase MT 18 with meals and snacks, >which I think is helping because she has gained 5 pounds and looking >very good. I try to get a Scandi shake down her every other night, >and she doesn't seem to mind the taste, as long as its with ice >cream,LOL. > >It will be nice talking to other people that can relate, you know my >friends and family have been a great support but don't really know >the real affects this disease has on a child, or there parents. > >Margo > > > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi Margo! Your message came through..just a bit late. Welcome to this group. I am sorry your daughter has cf, but so glad she is getting what she needs and is gaining weight, etc. It is a roller coaster, and that part really doesn't change, but some stuff gets a little easier. Certainly this list helps! My son is 6, and was diagnosed at birth, so he has never known what it was like not to have cf. This seems to me to be an easier way to deal with it. It must be hard being 12 and learning you have a chronic disease. How is your daughter taking this? Welcome again. Hope you love it here. Lenora >HI,this is just the group I have been searching for. My 13 yr old >daughter was diagnosed with CF last yr at this time. It has been a >rollercoaster of emotions ever sense, but we try to stay positive >for her. She is doing very well at the time, but was put in the >hospital in March with pneumonia in both lungs. Was in there for a >week, then home health came in and showed me how to do her meds >myself. As of right now we are treating her for asperillas(probably >ms, sorry) she is taking Sporanox and Prednisone, and doing well on >that. She also has to take Ultrase MT 18 with meals and snacks, >which I think is helping because she has gained 5 pounds and looking >very good. I try to get a Scandi shake down her every other night, >and she doesn't seem to mind the taste, as long as its with ice >cream,LOL. > >It will be nice talking to other people that can relate, you know my >friends and family have been a great support but don't really know >the real affects this disease has on a child, or there parents. > >Margo > > > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Hi Margo, I'm Jen, I have 3 kids with CF. 4, Yolo 2 1/2 and Phynix 6 months. does NOT like the scandishakes at all. They have a new thing out called Epulor. We mix it in with their pudding and they LOVE it. It is soooooo nice to be able to express your concerns and fears to people who understand COMPLETELY what you are going through. Welcome to the list. Jen. _________________________________________________________________ Get faster connections -- switch to MSN Internet Access! http://resourcecenter.msn.com/access/plans/default.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 --- Lenora, It has been tough on her only when I limit some of the things she does with friends. Like staying over night, if she had her way she would be staying at a friends or having them stay here every weekend. I have to limit that because if she gets to worn down she ends up sick. All so she gets tired of doing her Tobi, which you know takes some time up in there day. Oh yes, and her Pulmozyme, but other then that she has stayed very positive threw it all. She's a good girl, and has a very strong personality. How is your son doing? Margo In cfparents@y..., lenora wrote: > Hi Margo! > Your message came through..just a bit late. > Welcome to this group. I am sorry your daughter has cf, but so glad > she is getting what she needs and is gaining weight, etc. > It is a roller coaster, and that part really doesn't change, but some > stuff gets a little easier. Certainly this list helps! > My son is 6, and was diagnosed at birth, so he has never known what > it was like not to have cf. This seems to me to be an easier way to > deal with it. It must be hard being 12 and learning you have a > chronic disease. > How is your daughter taking this? > Welcome again. Hope you love it here. > Lenora > > >HI,this is just the group I have been searching for. My 13 yr old > >daughter was diagnosed with CF last yr at this time. It has been a > >rollercoaster of emotions ever sense, but we try to stay positive > >for her. She is doing very well at the time, but was put in the > >hospital in March with pneumonia in both lungs. Was in there for a > >week, then home health came in and showed me how to do her meds > >myself. As of right now we are treating her for asperillas (probably > >ms, sorry) she is taking Sporanox and Prednisone, and doing well on > >that. She also has to take Ultrase MT 18 with meals and snacks, > >which I think is helping because she has gained 5 pounds and looking > >very good. I try to get a Scandi shake down her every other night, > >and she doesn't seem to mind the taste, as long as its with ice > >cream,LOL. > > > >It will be nice talking to other people that can relate, you know my > >friends and family have been a great support but don't really know > >the real affects this disease has on a child, or there parents. > > > >Margo > > > > > > > > > >PLEASE do not post religious emails to the list. > > > > > >------------------------------------------- > > > > > >The opinions and information exchanged on this list should > >IN NO WAY > >be construed as medical advice. > > > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > > >-------------------------------------------------- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 --- Lenora, It has been tough on her only when I limit some of the things she does with friends. Like staying over night, if she had her way she would be staying at a friends or having them stay here every weekend. I have to limit that because if she gets to worn down she ends up sick. All so she gets tired of doing her Tobi, which you know takes some time up in there day. Oh yes, and her Pulmozyme, but other then that she has stayed very positive threw it all. She's a good girl, and has a very strong personality. How is your son doing? Margo In cfparents@y..., lenora wrote: > Hi Margo! > Your message came through..just a bit late. > Welcome to this group. I am sorry your daughter has cf, but so glad > she is getting what she needs and is gaining weight, etc. > It is a roller coaster, and that part really doesn't change, but some > stuff gets a little easier. Certainly this list helps! > My son is 6, and was diagnosed at birth, so he has never known what > it was like not to have cf. This seems to me to be an easier way to > deal with it. It must be hard being 12 and learning you have a > chronic disease. > How is your daughter taking this? > Welcome again. Hope you love it here. > Lenora > > >HI,this is just the group I have been searching for. My 13 yr old > >daughter was diagnosed with CF last yr at this time. It has been a > >rollercoaster of emotions ever sense, but we try to stay positive > >for her. She is doing very well at the time, but was put in the > >hospital in March with pneumonia in both lungs. Was in there for a > >week, then home health came in and showed me how to do her meds > >myself. As of right now we are treating her for asperillas (probably > >ms, sorry) she is taking Sporanox and Prednisone, and doing well on > >that. She also has to take Ultrase MT 18 with meals and snacks, > >which I think is helping because she has gained 5 pounds and looking > >very good. I try to get a Scandi shake down her every other night, > >and she doesn't seem to mind the taste, as long as its with ice > >cream,LOL. > > > >It will be nice talking to other people that can relate, you know my > >friends and family have been a great support but don't really know > >the real affects this disease has on a child, or there parents. > > > >Margo > > > > > > > > > >PLEASE do not post religious emails to the list. > > > > > >------------------------------------------- > > > > > >The opinions and information exchanged on this list should > >IN NO WAY > >be construed as medical advice. > > > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > > >-------------------------------------------------- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 --- Jen, I have never heard of Epulor. Guess as long as she is doing OK with the Scandi shakes I won't have to worry about switching. Thanks for the welcome, Margo In cfparents@y..., " JIggy yup " wrote: > > > > Hi Margo, I'm Jen, I have 3 kids with CF. 4, Yolo 2 1/2 and Phynix 6 > months. does NOT like the scandishakes at all. They have a new thing > out called Epulor. We mix it in with their pudding and they LOVE it. It is > soooooo nice to be able to express your concerns and fears to people who > understand COMPLETELY what you are going through. Welcome to the list. > > Jen. > > > > > > _________________________________________________________________ > Get faster connections -- switch to MSN Internet Access! > http://resourcecenter.msn.com/access/plans/default.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 You can use both together actually. I thought it was a normal type thing being distributed through out the cf clinics. But hey if the scandishakes work use'em, lol. Again welcome to the list. Jen. _________________________________________________________________ Get a speedy connection with MSN Broadband. Join now! http://resourcecenter.msn.com/access/plans/freeactivation.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 You can use both together actually. I thought it was a normal type thing being distributed through out the cf clinics. But hey if the scandishakes work use'em, lol. Again welcome to the list. Jen. _________________________________________________________________ Get a speedy connection with MSN Broadband. Join now! http://resourcecenter.msn.com/access/plans/freeactivation.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 it would probably be wise to not boil because the plastic will crack. hot water and non-lemon detergent is fine and maybe twice a week use 1 part vinigar to 4 parts hot water and let them soak for about an hour then rinse thoroughly. those of you that have had problems with moisture in the tubing, run the compressor with only the hose attached. the air passing through will dry the tube. mom to jeremiah 3wcf and brenna 7 wocf > >Reply-To: cfparents >To: cfparents >Subject: Good Morning >Date: Sun, 27 Oct 2002 15:05:42 -0000 > >It is cold but the sun is out this morning, looks like a beautiful >day. > >What I was wondering is, those of you who use nebulizer's, how do >you clean yours? I was told after every use to either boil or clean >in hot water and mild detergent. I just want to make sure I am doing >it right. > >Thanks, Margo > _________________________________________________________________ Unlimited Internet access for only $21.95/month. Try MSN! http://resourcecenter.msn.com/access/plans/2monthsfree.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 it would probably be wise to not boil because the plastic will crack. hot water and non-lemon detergent is fine and maybe twice a week use 1 part vinigar to 4 parts hot water and let them soak for about an hour then rinse thoroughly. those of you that have had problems with moisture in the tubing, run the compressor with only the hose attached. the air passing through will dry the tube. mom to jeremiah 3wcf and brenna 7 wocf > >Reply-To: cfparents >To: cfparents >Subject: Good Morning >Date: Sun, 27 Oct 2002 15:05:42 -0000 > >It is cold but the sun is out this morning, looks like a beautiful >day. > >What I was wondering is, those of you who use nebulizer's, how do >you clean yours? I was told after every use to either boil or clean >in hot water and mild detergent. I just want to make sure I am doing >it right. > >Thanks, Margo > _________________________________________________________________ Unlimited Internet access for only $21.95/month. Try MSN! http://resourcecenter.msn.com/access/plans/2monthsfree.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 ---Thanks , I remember them saying some thing about the vinegar when she was first diagnosed a yr ago. That does make sense not to boil. I also have had problems with moisture in the tube, I will try that next time. Margo In cfparents@y..., " Keslar " wrote: > > > > > it would probably be wise to not boil because the plastic will crack. hot > water and non-lemon detergent is fine and maybe twice a week use 1 part > vinigar to 4 parts hot water and let them soak for about an hour then rinse > thoroughly. those of you that have had problems with moisture in the tubing, > run the compressor with only the hose attached. the air passing through will > dry the tube. > > mom to jeremiah 3wcf and brenna 7 wocf > > > >From: " Margo " > >Reply-To: cfparents@y... > >To: cfparents@y... > >Subject: Good Morning > >Date: Sun, 27 Oct 2002 15:05:42 -0000 > > > >It is cold but the sun is out this morning, looks like a beautiful > >day. > > > >What I was wondering is, those of you who use nebulizer's, how do > >you clean yours? I was told after every use to either boil or clean > >in hot water and mild detergent. I just want to make sure I am doing > >it right. > > > >Thanks, Margo > > > > > _________________________________________________________________ > Unlimited Internet access for only $21.95/month. Try MSN! > http://resourcecenter.msn.com/access/plans/2monthsfree.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 ---Thanks , I remember them saying some thing about the vinegar when she was first diagnosed a yr ago. That does make sense not to boil. I also have had problems with moisture in the tube, I will try that next time. Margo In cfparents@y..., " Keslar " wrote: > > > > > it would probably be wise to not boil because the plastic will crack. hot > water and non-lemon detergent is fine and maybe twice a week use 1 part > vinigar to 4 parts hot water and let them soak for about an hour then rinse > thoroughly. those of you that have had problems with moisture in the tubing, > run the compressor with only the hose attached. the air passing through will > dry the tube. > > mom to jeremiah 3wcf and brenna 7 wocf > > > >From: " Margo " > >Reply-To: cfparents@y... > >To: cfparents@y... > >Subject: Good Morning > >Date: Sun, 27 Oct 2002 15:05:42 -0000 > > > >It is cold but the sun is out this morning, looks like a beautiful > >day. > > > >What I was wondering is, those of you who use nebulizer's, how do > >you clean yours? I was told after every use to either boil or clean > >in hot water and mild detergent. I just want to make sure I am doing > >it right. > > > >Thanks, Margo > > > > > _________________________________________________________________ > Unlimited Internet access for only $21.95/month. Try MSN! > http://resourcecenter.msn.com/access/plans/2monthsfree.asp Quote Link to comment Share on other sites More sharing options...
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