Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Beth; ME stubborn..Not a chance, lol.. So sorry you are having all this pain.. They think the imuran will help? I'm telling you i went from 1 diagnosis hypothyroidism years ago to 30 now..in 2 yrs.. they open the can of worms and all goes down the drain.. or for me is that hitting the 50's..lol Feel better sure the cold isn't helping this. Patti,nj > > > > > > > > Bev, My heart just breaks for you. First and most important... > > You > > > > are not going to die tomorrow.. > > > > You can still live a full life--just a little different. For > > your > > > > boat. take plenty of tanks, long hoses. > > > > As long as you can secure the tanks I don't see why you > couldn't > > do > > > > anything you want. > > > > > > > > The University would be THE place you want to go. IPF is a > > disease > > > > that needs a specialist in > > > > Pulmonary Fibrosis. There are many (over 200) different > > fibrosis' . > > > > There isn't a treatment for IPF. Some give prednisone and or > > imuran > > > > but they haven't been proven to help with this monster. The > side > > > > effects were not worth it for me. I wish I had known then what > I > > know > > > > now. > > > > > > > > I don't think you should worry about funerals right now. You > > have a > > > > lot of living to do. GO GIRL, LIVE. > > > > Here on this board we try to help each other with tips and > > > > encouragement. Anything you question ASK. > > > > There are no dumb questions. Someone will always be here to > help. > > > > > > > > I also have IPF. I was diagnosed almost five years ago. June > of > > 2004. > > > > Don't feel your alone in this fight. > > > > God Bless you with strength and peace. > > > > > > > > Love & Prayers, Peggy > > > > Florida, IPF/UIP 2004 > > > > > > > > " I believe that friends are quiet angels who lift us to our > feet, > > > > when our wings have trouble remembering how to fly. " > > > > > > > > > > > > > > Thank you. Your post does make me feel better. Where I live the > > > doctors are bad. I am going to a pulmonary specialist in > > Spokane,wa. > > > but the local doctors here failed to diagnose this with an > earlier > > > chest x-ray When I got bad enough to be put in the local > hospital > > they > > > said that it was curable and they thought that they had me cured. > > > Shows how much they know. Last year one of them failed to > diagnose > > a > > > perforated appendix. I was within two days of dying when I went > to > > > another doctor and was sent to Spokane for emergency surgery. So > my > > > lungs are very bad now. I still intend to live as much as I can > > for as > > > long as I can. What about the portable concentrators? My doctor > > said > > > that I should ask my oxygen provider about an Inogen machine. I > was > > > told that I can't have one of those for home use. Medicare won't > > pay > > > for them. He said that they cost $6,000. They are 4 thousand on > the > > > internet. I thought that when I sell my house I might be able to > > buy > > > one. I'm also curious about disability. I don't know what the > > > requirements are for that but I thought that I might get more > help > > > with medical expenses at least. I am just full of questions. Bev > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Beth; ME stubborn..Not a chance, lol.. So sorry you are having all this pain.. They think the imuran will help? I'm telling you i went from 1 diagnosis hypothyroidism years ago to 30 now..in 2 yrs.. they open the can of worms and all goes down the drain.. or for me is that hitting the 50's..lol Feel better sure the cold isn't helping this. Patti,nj > > > > > > > > Bev, My heart just breaks for you. First and most important... > > You > > > > are not going to die tomorrow.. > > > > You can still live a full life--just a little different. For > > your > > > > boat. take plenty of tanks, long hoses. > > > > As long as you can secure the tanks I don't see why you > couldn't > > do > > > > anything you want. > > > > > > > > The University would be THE place you want to go. IPF is a > > disease > > > > that needs a specialist in > > > > Pulmonary Fibrosis. There are many (over 200) different > > fibrosis' . > > > > There isn't a treatment for IPF. Some give prednisone and or > > imuran > > > > but they haven't been proven to help with this monster. The > side > > > > effects were not worth it for me. I wish I had known then what > I > > know > > > > now. > > > > > > > > I don't think you should worry about funerals right now. You > > have a > > > > lot of living to do. GO GIRL, LIVE. > > > > Here on this board we try to help each other with tips and > > > > encouragement. Anything you question ASK. > > > > There are no dumb questions. Someone will always be here to > help. > > > > > > > > I also have IPF. I was diagnosed almost five years ago. June > of > > 2004. > > > > Don't feel your alone in this fight. > > > > God Bless you with strength and peace. > > > > > > > > Love & Prayers, Peggy > > > > Florida, IPF/UIP 2004 > > > > > > > > " I believe that friends are quiet angels who lift us to our > feet, > > > > when our wings have trouble remembering how to fly. " > > > > > > > > > > > > > > Thank you. Your post does make me feel better. Where I live the > > > doctors are bad. I am going to a pulmonary specialist in > > Spokane,wa. > > > but the local doctors here failed to diagnose this with an > earlier > > > chest x-ray When I got bad enough to be put in the local > hospital > > they > > > said that it was curable and they thought that they had me cured. > > > Shows how much they know. Last year one of them failed to > diagnose > > a > > > perforated appendix. I was within two days of dying when I went > to > > > another doctor and was sent to Spokane for emergency surgery. So > my > > > lungs are very bad now. I still intend to live as much as I can > > for as > > > long as I can. What about the portable concentrators? My doctor > > said > > > that I should ask my oxygen provider about an Inogen machine. I > was > > > told that I can't have one of those for home use. Medicare won't > > pay > > > for them. He said that they cost $6,000. They are 4 thousand on > the > > > internet. I thought that when I sell my house I might be able to > > buy > > > one. I'm also curious about disability. I don't know what the > > > requirements are for that but I thought that I might get more > help > > > with medical expenses at least. I am just full of questions. Bev > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Patti, Back up a little bit....I'm not in pain. None at all actually. What I am having is weakness in both my shoulders and hips. Getting up from (God forbid) the floor or from a squat or even from a low chair has become more difficult and the same thing applies to doing anything that is dependent on my upper arms or shoulders. But nothing hurts. So far I haven't noticed any difference from the Imuran but I didn't expect to yet. My doctor will increase my dose pending the results of bloodwork I had done yesterday. So it's wait and see. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, February 3, 2009 11:35:49 PMSubject: Re: questions Beth; ME stubborn..Not a chance, lol.. So sorry you are having all this pain.. They think the imuran will help? I'm telling you i went from 1 diagnosis hypothyroidism years ago to 30 now..in 2 yrs.. they open the can of worms and all goes down the drain.. or for me is that hitting the 50's..lol Feel better sure the cold isn't helping this. Patti,nj> > > >> > > > Bev, My heart just breaks for you. First and most important... > > You > > > > are not going to die tomorrow..> > > > You can still live a full life--just a little different. For > > your > > > > boat. take plenty of tanks, long hoses.> > > > As long as you can secure the tanks I don't see why you > couldn't > > do > > > > anything you want.> > > > > > > > The University would be THE place you want to go. IPF is a > > disease > > > > that needs a specialist in> > > > Pulmonary Fibrosis. There are many (over 200) different > > fibrosis' .> > > > There isn't a treatment for IPF. Some give prednisone and or > > imuran > > > > but they haven't been proven to help with this monster. The > side > > > > effects were not worth it for me. I wish I had known then what > I > > know > > > > now.> > > > > > > > I don't think you should worry about funerals right now. You > > have a > > > > lot of living to do. GO GIRL, LIVE.> > > > Here on this board we try to help each other with tips and > > > > encouragement. Anything you question ASK.> > > > There are no dumb questions. Someone will always be here to > help.> > > > > > > > I also have IPF. I was diagnosed almost five years ago. June > of > > 2004. > > > > Don't feel your alone in this fight.> > > > God Bless you with strength and peace.> > > > > > > > Love & Prayers, Peggy> > > > Florida, IPF/UIP 2004> > > > > > > > "I believe that friends are quiet angels who lift us to our > feet,> > > > when our wings have trouble remembering how to fly."> > > > > > > > > > > > > > Thank you. Your post does make me feel better. Where I live the> > > doctors are bad. I am going to a pulmonary specialist in > > Spokane,wa.> > > but the local doctors here failed to diagnose this with an > earlier> > > chest x-ray When I got bad enough to be put in the local > hospital > > they> > > said that it was curable and they thought that they had me cured.> > > Shows how much they know. Last year one of them failed to > diagnose > > a> > > perforated appendix. I was within two days of dying when I went > to> > > another doctor and was sent to Spokane for emergency surgery. So > my> > > lungs are very bad now. I still intend to live as much as I can > > for as> > > long as I can. What about the portable concentrators? My doctor > > said> > > that I should ask my oxygen provider about an Inogen machine. I > was> > > told that I can't have one of those for home use. Medicare won't > > pay> > > for them. He said that they cost $6,000. They are 4 thousand on > the> > > internet. I thought that when I sell my house I might be able to > > buy> > > one. I'm also curious about disability. I don't know what the> > > requirements are for that but I thought that I might get more > help> > > with medical expenses at least. I am just full of questions. Bev> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Patti, Back up a little bit....I'm not in pain. None at all actually. What I am having is weakness in both my shoulders and hips. Getting up from (God forbid) the floor or from a squat or even from a low chair has become more difficult and the same thing applies to doing anything that is dependent on my upper arms or shoulders. But nothing hurts. So far I haven't noticed any difference from the Imuran but I didn't expect to yet. My doctor will increase my dose pending the results of bloodwork I had done yesterday. So it's wait and see. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, February 3, 2009 11:35:49 PMSubject: Re: questions Beth; ME stubborn..Not a chance, lol.. So sorry you are having all this pain.. They think the imuran will help? I'm telling you i went from 1 diagnosis hypothyroidism years ago to 30 now..in 2 yrs.. they open the can of worms and all goes down the drain.. or for me is that hitting the 50's..lol Feel better sure the cold isn't helping this. Patti,nj> > > >> > > > Bev, My heart just breaks for you. First and most important... > > You > > > > are not going to die tomorrow..> > > > You can still live a full life--just a little different. For > > your > > > > boat. take plenty of tanks, long hoses.> > > > As long as you can secure the tanks I don't see why you > couldn't > > do > > > > anything you want.> > > > > > > > The University would be THE place you want to go. IPF is a > > disease > > > > that needs a specialist in> > > > Pulmonary Fibrosis. There are many (over 200) different > > fibrosis' .> > > > There isn't a treatment for IPF. Some give prednisone and or > > imuran > > > > but they haven't been proven to help with this monster. The > side > > > > effects were not worth it for me. I wish I had known then what > I > > know > > > > now.> > > > > > > > I don't think you should worry about funerals right now. You > > have a > > > > lot of living to do. GO GIRL, LIVE.> > > > Here on this board we try to help each other with tips and > > > > encouragement. Anything you question ASK.> > > > There are no dumb questions. Someone will always be here to > help.> > > > > > > > I also have IPF. I was diagnosed almost five years ago. June > of > > 2004. > > > > Don't feel your alone in this fight.> > > > God Bless you with strength and peace.> > > > > > > > Love & Prayers, Peggy> > > > Florida, IPF/UIP 2004> > > > > > > > "I believe that friends are quiet angels who lift us to our > feet,> > > > when our wings have trouble remembering how to fly."> > > > > > > > > > > > > > Thank you. Your post does make me feel better. Where I live the> > > doctors are bad. I am going to a pulmonary specialist in > > Spokane,wa.> > > but the local doctors here failed to diagnose this with an > earlier> > > chest x-ray When I got bad enough to be put in the local > hospital > > they> > > said that it was curable and they thought that they had me cured.> > > Shows how much they know. Last year one of them failed to > diagnose > > a> > > perforated appendix. I was within two days of dying when I went > to> > > another doctor and was sent to Spokane for emergency surgery. So > my> > > lungs are very bad now. I still intend to live as much as I can > > for as> > > long as I can. What about the portable concentrators? My doctor > > said> > > that I should ask my oxygen provider about an Inogen machine. I > was> > > told that I can't have one of those for home use. Medicare won't > > pay> > > for them. He said that they cost $6,000. They are 4 thousand on > the> > > internet. I thought that when I sell my house I might be able to > > buy> > > one. I'm also curious about disability. I don't know what the> > > requirements are for that but I thought that I might get more > help> > > with medical expenses at least. I am just full of questions. Bev> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 Hi Everyone,I have a friend who wanted to inquire about 2 separate issues. The first is about whether or not there now exists a test or markers that help identify autism in a fetus. Someone said they heard that something recently was developed (maybe out of U of M) but they were not sure. Has anyone heard of this? As far as I know, there is no way to detect Autism prior to birth. and secondly... Does anyone know what the school policy is for kids acting out. Can they call parents to pick them up? I thought they were required to work it through with the children in school as picking a child up would only reinforce the behavior. Can anyone advise about the school's legal responsibility? I believe the child is a ese class. Thanks for all your help in advance. Quote Link to comment Share on other sites More sharing options...
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