Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Sorry I've been AWOL. I got soooooo behind on the posts (was receiving them via email), that I'm afraid I just had to delete them all and will just have to start reading them here on the site. Yikes! You all are chatty 's!!! LOL!! I haven't been feeling well at all this past weekend...very weak and short of breath, along with a terrible migraine (do any of you suffer from migraines and could these be caused by not getting enough oxygen??) My appointment with my new Rheumy is tomorrow (yeah!) and since my GP forwarded all test results to him (including my most recent CT Scan and PFT results), I'm REALLY hoping he goes over the results with me and explains the PF diagnosis, since my GP didn't. I realize he isn't a Pulmo., but do you think this is a reasonable request? My hubby asked me if I would like him to take the day off work tomorrow so he could go with me (it's about an hour and a half away) and I told him it wasn't necessary, however, the more I think about it, I'm thinking perhaps I should have him go, because if the Rheumy does in fact go over my PF diagnosis, it could be very upsetting to me (as much as I know all about it and have read all the statistics, etc....I'm thinking it will be different hearing it face to face!) and I may need him for the emotional support. What do you all think?? I'll just feel terrible for having him take a day off work if he doesn't even go over my PF DX., however, the receptionist did mention something about him giving me a 2nd opinion (and I know I don't need a 2nd opinion on my Polymyositis, since I've been living with that for the past 6 years!)...so she MUST have meant the PF, right?? I must admit that I'm a bit discouraged. As I was mentioning to my hubby the other night, my GP sent me out of her office after my PF DX. without scheduling another appt. with me or anything (what the heck???) or telling me when I would be seeing my Pulmo. (I'm just assuming we're waiting for the Echo.) and right now I'm just feeling lost in never, never land. I'm going to ask the new Rheumy tomorrow about referring me to Diane 's excellent Pulmo. and hopefully he'll be able to do that. I just don't know how I go about finding out if I qualify for oxygen at home, or anything at this stage in the game. I'm feeling very lost and hopeless right now, simply because I don't KNOW anything!! It's like my GP dumped this on my lap, said " here ya go...now live a normal life....see ya whenever! " and expects me not to ask any questions. It's just so unlike her!! I don't know. I'm sorry. I'm sure I'll feel much better about things tomorrow after seeing the Rheumy (I HOPE!!!), but right now, not so much!!! Thanks for listening. I appreciate it! Hugs, Dawn in N.B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Insist of your rheumy explaining things. Get copies of everything. Ask about the connection between autoimmune and PF. You are in charge and make sure they know it. You have a right to information and education and to get your questions answered. Take a list of questions and make notes. Always good to have another with you listening to grasp what you might miss. > > Sorry I've been AWOL. I got soooooo behind on the posts (was > receiving them via email), that I'm afraid I just had to delete them > all and will just have to start reading them here on the site. Yikes! > You all are chatty 's!!! LOL!! I haven't been feeling well at > all this past weekend...very weak and short of breath, along with a > terrible migraine (do any of you suffer from migraines and could these > be caused by not getting enough oxygen??) > > My appointment with my new Rheumy is tomorrow (yeah!) and since my GP > forwarded all test results to him (including my most recent CT Scan > and PFT results), I'm REALLY hoping he goes over the results with me > and explains the PF diagnosis, since my GP didn't. I realize he isn't > a Pulmo., but do you think this is a reasonable request? My hubby > asked me if I would like him to take the day off work tomorrow so he > could go with me (it's about an hour and a half away) and I told him > it wasn't necessary, however, the more I think about it, I'm thinking > perhaps I should have him go, because if the Rheumy does in fact go > over my PF diagnosis, it could be very upsetting to me (as much as I > know all about it and have read all the statistics, etc....I'm > thinking it will be different hearing it face to face!) and I may need > him for the emotional support. What do you all think?? I'll just > feel terrible for having him take a day off work if he doesn't even go > over my PF DX., however, the receptionist did mention something about > him giving me a 2nd opinion (and I know I don't need a 2nd opinion on > my Polymyositis, since I've been living with that for the past 6 > years!)...so she MUST have meant the PF, right?? > > I must admit that I'm a bit discouraged. As I was mentioning to my > hubby the other night, my GP sent me out of her office after my PF DX. > without scheduling another appt. with me or anything (what the > heck???) or telling me when I would be seeing my Pulmo. (I'm just > assuming we're waiting for the Echo.) and right now I'm just feeling > lost in never, never land. I'm going to ask the new Rheumy tomorrow > about referring me to Diane 's excellent Pulmo. and hopefully > he'll be able to do that. I just don't know how I go about finding > out if I qualify for oxygen at home, or anything at this stage in the > game. I'm feeling very lost and hopeless right now, simply because I > don't KNOW anything!! It's like my GP dumped this on my lap, said > " here ya go...now live a normal life....see ya whenever! " and expects > me not to ask any questions. It's just so unlike her!! I don't know. > I'm sorry. I'm sure I'll feel much better about things tomorrow > after seeing the Rheumy (I HOPE!!!), but right now, not so much!!! > > Thanks for listening. I appreciate it! > > Hugs, > Dawn in N.B. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Yes, that's what I was thinking...even if the 'new' Rheumy wasn't intending on explaining things, I was going to ask anyway, since my GP didn't give me any details! I am going to try to grow a spine between now and then (ha!) and ask for copies of my CT Scan and PFT results...not that they'll make a lick of sense to me, but at least I'll have copies to compare future tests with, I guess. And yes, I think I will ask hubby to come with me. As much as we will miss the days' pay, I will feel better having him there with me and I wouldn't want to be upset and drive home in that condition. Thanks again, Dawn in N.B. > > > > Sorry I've been AWOL. I got soooooo behind on the posts (was > > receiving them via email), that I'm afraid I just had to delete them > > all and will just have to start reading them here on the site. > Yikes! > > You all are chatty 's!!! LOL!! I haven't been feeling well > at > > all this past weekend...very weak and short of breath, along with a > > terrible migraine (do any of you suffer from migraines and could > these > > be caused by not getting enough oxygen??) > > > > My appointment with my new Rheumy is tomorrow (yeah!) and since my > GP > > forwarded all test results to him (including my most recent CT Scan > > and PFT results), I'm REALLY hoping he goes over the results with me > > and explains the PF diagnosis, since my GP didn't. I realize he > isn't > > a Pulmo., but do you think this is a reasonable request? My hubby > > asked me if I would like him to take the day off work tomorrow so he > > could go with me (it's about an hour and a half away) and I told him > > it wasn't necessary, however, the more I think about it, I'm > thinking > > perhaps I should have him go, because if the Rheumy does in fact go > > over my PF diagnosis, it could be very upsetting to me (as much as I > > know all about it and have read all the statistics, etc....I'm > > thinking it will be different hearing it face to face!) and I may > need > > him for the emotional support. What do you all think?? I'll just > > feel terrible for having him take a day off work if he doesn't even > go > > over my PF DX., however, the receptionist did mention something > about > > him giving me a 2nd opinion (and I know I don't need a 2nd opinion > on > > my Polymyositis, since I've been living with that for the past 6 > > years!)...so she MUST have meant the PF, right?? > > > > I must admit that I'm a bit discouraged. As I was mentioning to my > > hubby the other night, my GP sent me out of her office after my PF > DX. > > without scheduling another appt. with me or anything (what the > > heck???) or telling me when I would be seeing my Pulmo. (I'm just > > assuming we're waiting for the Echo.) and right now I'm just feeling > > lost in never, never land. I'm going to ask the new Rheumy tomorrow > > about referring me to Diane 's excellent Pulmo. and hopefully > > he'll be able to do that. I just don't know how I go about finding > > out if I qualify for oxygen at home, or anything at this stage in > the > > game. I'm feeling very lost and hopeless right now, simply because > I > > don't KNOW anything!! It's like my GP dumped this on my lap, said > > " here ya go...now live a normal life....see ya whenever! " and > expects > > me not to ask any questions. It's just so unlike her!! I don't > know. > > I'm sorry. I'm sure I'll feel much better about things tomorrow > > after seeing the Rheumy (I HOPE!!!), but right now, not so much!!! > > > > Thanks for listening. I appreciate it! > > > > Hugs, > > Dawn in N.B. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Definitely make a list. It will ensure that you don't forget something that you wanted to ask. I agree with having someone else there with you too as they'll pick up on different things. I hope it all goes well, don't forget to let us know Love Ze xx> >> > Sorry I've been AWOL. I got soooooo behind on the posts (was> > receiving them via email), that I'm afraid I just had to delete them> > all and will just have to start reading them here on the site. > Yikes!> > You all are chatty 's!!! LOL!! I haven't been feeling well > at> > all this past weekend...very weak and short of breath, along with a> > terrible migraine (do any of you suffer from migraines and could > these> > be caused by not getting enough oxygen??)> > > > My appointment with my new Rheumy is tomorrow (yeah!) and since my > GP> > forwarded all test results to him (including my most recent CT Scan> > and PFT results), I'm REALLY hoping he goes over the results with me> > and explains the PF diagnosis, since my GP didn't. I realize he > isn't> > a Pulmo., but do you think this is a reasonable request? My hubby> > asked me if I would like him to take the day off work tomorrow so he> > could go with me (it's about an hour and a half away) and I told him> > it wasn't necessary, however, the more I think about it, I'm > thinking> > perhaps I should have him go, because if the Rheumy does in fact go> > over my PF diagnosis, it could be very upsetting to me (as much as I> > know all about it and have read all the statistics, etc....I'm> > thinking it will be different hearing it face to face!) and I may > need> > him for the emotional support. What do you all think?? I'll just> > feel terrible for having him take a day off work if he doesn't even > go> > over my PF DX., however, the receptionist did mention something > about> > him giving me a 2nd opinion (and I know I don't need a 2nd opinion > on> > my Polymyositis, since I've been living with that for the past 6> > years!)...so she MUST have meant the PF, right??> > > > I must admit that I'm a bit discouraged. As I was mentioning to my> > hubby the other night, my GP sent me out of her office after my PF > DX.> > without scheduling another appt. with me or anything (what the> > heck???) or telling me when I would be seeing my Pulmo. (I'm just> > assuming we're waiting for the Echo.) and right now I'm just feeling> > lost in never, never land. I'm going to ask the new Rheumy tomorrow> > about referring me to Diane 's excellent Pulmo. and hopefully> > he'll be able to do that. I just don't know how I go about finding> > out if I qualify for oxygen at home, or anything at this stage in > the> > game. I'm feeling very lost and hopeless right now, simply because > I> > don't KNOW anything!! It's like my GP dumped this on my lap, said> > "here ya go...now live a normal life....see ya whenever!" and > expects> > me not to ask any questions. It's just so unlike her!! I don't > know.> > I'm sorry. I'm sure I'll feel much better about things tomorrow> > after seeing the Rheumy (I HOPE!!!), but right now, not so much!!! > > > > Thanks for listening. I appreciate it!> > > > Hugs,> > Dawn in N.B.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Thanks Ze. Only one problem with having my hubby there as the 2nd person....he's awful at forgetting things that people has said (like directions, etc....I have to go with him when he asks, so I'LL be the one to remember! LOL!), however, I will bring a notepad and write things that the Dr. is saying. Just having him there with me will bring me great comfort though! And they say women are the scatterbrains!!! LOL! Sorry Bruce! ) Dawn > > > > > > Sorry I've been AWOL. I got soooooo behind on the posts (was > > > receiving them via email), that I'm afraid I just had to delete them > > > all and will just have to start reading them here on the site. > > Yikes! > > > You all are chatty 's!!! LOL!! I haven't been feeling well > > at > > > all this past weekend...very weak and short of breath, along with a > > > terrible migraine (do any of you suffer from migraines and could > > these > > > be caused by not getting enough oxygen??) > > > > > > My appointment with my new Rheumy is tomorrow (yeah!) and since my > > GP > > > forwarded all test results to him (including my most recent CT Scan > > > and PFT results), I'm REALLY hoping he goes over the results with me > > > and explains the PF diagnosis, since my GP didn't. I realize he > > isn't > > > a Pulmo., but do you think this is a reasonable request? My hubby > > > asked me if I would like him to take the day off work tomorrow so he > > > could go with me (it's about an hour and a half away) and I told him > > > it wasn't necessary, however, the more I think about it, I'm > > thinking > > > perhaps I should have him go, because if the Rheumy does in fact go > > > over my PF diagnosis, it could be very upsetting to me (as much as I > > > know all about it and have read all the statistics, etc....I'm > > > thinking it will be different hearing it face to face!) and I may > > need > > > him for the emotional support. What do you all think?? I'll just > > > feel terrible for having him take a day off work if he doesn't even > > go > > > over my PF DX., however, the receptionist did mention something > > about > > > him giving me a 2nd opinion (and I know I don't need a 2nd opinion > > on > > > my Polymyositis, since I've been living with that for the past 6 > > > years!)...so she MUST have meant the PF, right?? > > > > > > I must admit that I'm a bit discouraged. As I was mentioning to my > > > hubby the other night, my GP sent me out of her office after my PF > > DX. > > > without scheduling another appt. with me or anything (what the > > > heck???) or telling me when I would be seeing my Pulmo. (I'm just > > > assuming we're waiting for the Echo.) and right now I'm just feeling > > > lost in never, never land. I'm going to ask the new Rheumy tomorrow > > > about referring me to Diane 's excellent Pulmo. and hopefully > > > he'll be able to do that. I just don't know how I go about finding > > > out if I qualify for oxygen at home, or anything at this stage in > > the > > > game. I'm feeling very lost and hopeless right now, simply because > > I > > > don't KNOW anything!! It's like my GP dumped this on my lap, said > > > " here ya go...now live a normal life....see ya whenever! " and > > expects > > > me not to ask any questions. It's just so unlike her!! I don't > > know. > > > I'm sorry. I'm sure I'll feel much better about things tomorrow > > > after seeing the Rheumy (I HOPE!!!), but right now, not so much!!! > > > > > > Thanks for listening. I appreciate it! > > > > > > Hugs, > > > Dawn in N.B. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Dawn, I think you are on the right track by taking your husband. It is important that he be involved from the beginning so to speak. I don't know your husband but if mine offers like that it is usually because he wants to or at least thinks he should. I always take a list but sometimes just use it as a prop, I can make a list and then add on ask for test results. It not only reminds me but it lets me ask in a matter of fact way, just another item on my list. Many of my doctors when seeing a list will ask me at the end if I have any more questions. This seems to happen more often with a list than without. Good luck! Kathie NSIP '96 > > > > > > Sorry I've been AWOL. I got soooooo behind on the posts (was > > > receiving them via email), that I'm afraid I just had to delete them > > > all and will just have to start reading them here on the site. > > Yikes! > > > You all are chatty 's!!! LOL!! I haven't been feeling well > > at > > > all this past weekend...very weak and short of breath, along with a > > > terrible migraine (do any of you suffer from migraines and could > > these > > > be caused by not getting enough oxygen??) > > > > > > My appointment with my new Rheumy is tomorrow (yeah!) and since my > > GP > > > forwarded all test results to him (including my most recent CT Scan > > > and PFT results), I'm REALLY hoping he goes over the results with me > > > and explains the PF diagnosis, since my GP didn't. I realize he > > isn't > > > a Pulmo., but do you think this is a reasonable request? My hubby > > > asked me if I would like him to take the day off work tomorrow so he > > > could go with me (it's about an hour and a half away) and I told him > > > it wasn't necessary, however, the more I think about it, I'm > > thinking > > > perhaps I should have him go, because if the Rheumy does in fact go > > > over my PF diagnosis, it could be very upsetting to me (as much as I > > > know all about it and have read all the statistics, etc....I'm > > > thinking it will be different hearing it face to face!) and I may > > need > > > him for the emotional support. What do you all think?? I'll just > > > feel terrible for having him take a day off work if he doesn't even > > go > > > over my PF DX., however, the receptionist did mention something > > about > > > him giving me a 2nd opinion (and I know I don't need a 2nd opinion > > on > > > my Polymyositis, since I've been living with that for the past 6 > > > years!)...so she MUST have meant the PF, right?? > > > > > > I must admit that I'm a bit discouraged. As I was mentioning to my > > > hubby the other night, my GP sent me out of her office after my PF > > DX. > > > without scheduling another appt. with me or anything (what the > > > heck???) or telling me when I would be seeing my Pulmo. (I'm just > > > assuming we're waiting for the Echo.) and right now I'm just feeling > > > lost in never, never land. I'm going to ask the new Rheumy tomorrow > > > about referring me to Diane 's excellent Pulmo. and hopefully > > > he'll be able to do that. I just don't know how I go about finding > > > out if I qualify for oxygen at home, or anything at this stage in > > the > > > game. I'm feeling very lost and hopeless right now, simply because > > I > > > don't KNOW anything!! It's like my GP dumped this on my lap, said > > > " here ya go...now live a normal life....see ya whenever! " and > > expects > > > me not to ask any questions. It's just so unlike her!! I don't > > know. > > > I'm sorry. I'm sure I'll feel much better about things tomorrow > > > after seeing the Rheumy (I HOPE!!!), but right now, not so much!!! > > > > > > Thanks for listening. I appreciate it! > > > > > > Hugs, > > > Dawn in N.B. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Ha at women being the scatterbrains, Rob came with me last time I saw my chest physician and he can remember the chatty bit before we got down to business and that's about it! Love Ze xx > > > >> > > > Sorry I've been AWOL. I got soooooo behind on the posts (was> > > > receiving them via email), that I'm afraid I just had to delete them> > > > all and will just have to start reading them here on the site.> > > Yikes!> > > > You all are chatty 's!!! LOL!! I haven't been feeling well> > > at> > > > all this past weekend...very weak and short of breath, along with a> > > > terrible migraine (do any of you suffer from migraines and could> > > these> > > > be caused by not getting enough oxygen??)> > > >> > > > My appointment with my new Rheumy is tomorrow (yeah!) and since my> > > GP> > > > forwarded all test results to him (including my most recent CT Scan> > > > and PFT results), I'm REALLY hoping he goes over the results with me> > > > and explains the PF diagnosis, since my GP didn't. I realize he> > > isn't> > > > a Pulmo., but do you think this is a reasonable request? My hubby> > > > asked me if I would like him to take the day off work tomorrow so he> > > > could go with me (it's about an hour and a half away) and I told him> > > > it wasn't necessary, however, the more I think about it, I'm> > > thinking> > > > perhaps I should have him go, because if the Rheumy does in fact go> > > > over my PF diagnosis, it could be very upsetting to me (as much as I> > > > know all about it and have read all the statistics, etc....I'm> > > > thinking it will be different hearing it face to face!) and I may> > > need> > > > him for the emotional support. What do you all think?? I'll just> > > > feel terrible for having him take a day off work if he doesn't even> > > go> > > > over my PF DX., however, the receptionist did mention something> > > about> > > > him giving me a 2nd opinion (and I know I don't need a 2nd opinion> > > on> > > > my Polymyositis, since I've been living with that for the past 6> > > > years!)...so she MUST have meant the PF, right??> > > >> > > > I must admit that I'm a bit discouraged. As I was mentioning to my> > > > hubby the other night, my GP sent me out of her office after my PF> > > DX.> > > > without scheduling another appt. with me or anything (what the> > > > heck???) or telling me when I would be seeing my Pulmo. (I'm just> > > > assuming we're waiting for the Echo.) and right now I'm just feeling> > > > lost in never, never land. I'm going to ask the new Rheumy tomorrow> > > > about referring me to Diane 's excellent Pulmo. and hopefully> > > > he'll be able to do that. I just don't know how I go about finding> > > > out if I qualify for oxygen at home, or anything at this stage in> > > the> > > > game. I'm feeling very lost and hopeless right now, simply because> > > I> > > > don't KNOW anything!! It's like my GP dumped this on my lap, said> > > > "here ya go...now live a normal life....see ya whenever!" and> > > expects> > > > me not to ask any questions. It's just so unlike her!! I don't> > > know.> > > > I'm sorry. I'm sure I'll feel much better about things tomorrow> > > > after seeing the Rheumy (I HOPE!!!), but right now, not so much!!!> > > >> > > > Thanks for listening. I appreciate it!> > > >> > > > Hugs,> > > > Dawn in N.B.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Mind you, joking aside he was able to put his mind at rest for a few things as well. He was able to ask some questions of my doc that increased his understanding. I do think some of it was a bit of a shock for him as he was hoping that the doc was going to say that it wasn't as bad as I'd been making out and that I'll get better. It made it more real for him iyswim, but it's made it easier too. Love Ze xx> > > > >> > > > > Sorry I've been AWOL. I got soooooo behind on the posts (was> > > > > receiving them via email), that I'm afraid I just had to delete> them> > > > > all and will just have to start reading them here on the site.> > > > Yikes!> > > > > You all are chatty 's!!! LOL!! I haven't been feeling well> > > > at> > > > > all this past weekend...very weak and short of breath, along> with a> > > > > terrible migraine (do any of you suffer from migraines and could> > > > these> > > > > be caused by not getting enough oxygen??)> > > > >> > > > > My appointment with my new Rheumy is tomorrow (yeah!) and since> my> > > > GP> > > > > forwarded all test results to him (including my most recent CT> Scan> > > > > and PFT results), I'm REALLY hoping he goes over the results> with me> > > > > and explains the PF diagnosis, since my GP didn't. I realize he> > > > isn't> > > > > a Pulmo., but do you think this is a reasonable request? My> hubby> > > > > asked me if I would like him to take the day off work tomorrow> so he> > > > > could go with me (it's about an hour and a half away) and I told> him> > > > > it wasn't necessary, however, the more I think about it, I'm> > > > thinking> > > > > perhaps I should have him go, because if the Rheumy does in fact> go> > > > > over my PF diagnosis, it could be very upsetting to me (as much> as I> > > > > know all about it and have read all the statistics, etc....I'm> > > > > thinking it will be different hearing it face to face!) and I> may> > > > need> > > > > him for the emotional support. What do you all think?? I'll just> > > > > feel terrible for having him take a day off work if he doesn't> even> > > > go> > > > > over my PF DX., however, the receptionist did mention something> > > > about> > > > > him giving me a 2nd opinion (and I know I don't need a 2nd> opinion> > > > on> > > > > my Polymyositis, since I've been living with that for the past 6> > > > > years!)...so she MUST have meant the PF, right??> > > > >> > > > > I must admit that I'm a bit discouraged. As I was mentioning to> my> > > > > hubby the other night, my GP sent me out of her office after my> PF> > > > DX.> > > > > without scheduling another appt. with me or anything (what the> > > > > heck???) or telling me when I would be seeing my Pulmo. (I'm> just> > > > > assuming we're waiting for the Echo.) and right now I'm just> feeling> > > > > lost in never, never land. I'm going to ask the new Rheumy> tomorrow> > > > > about referring me to Diane 's excellent Pulmo. and> hopefully> > > > > he'll be able to do that. I just don't know how I go about> finding> > > > > out if I qualify for oxygen at home, or anything at this stage> in> > > > the> > > > > game. I'm feeling very lost and hopeless right now, simply> because> > > > I> > > > > don't KNOW anything!! It's like my GP dumped this on my lap,> said> > > > > "here ya go...now live a normal life....see ya whenever!" and> > > > expects> > > > > me not to ask any questions. It's just so unlike her!! I don't> > > > know.> > > > > I'm sorry. I'm sure I'll feel much better about things tomorrow> > > > > after seeing the Rheumy (I HOPE!!!), but right now, not so> much!!!> > > > >> > > > > Thanks for listening. I appreciate it!> > > > >> > > > > Hugs,> > > > > Dawn in N.B.> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I really believe knowledge, understanding, and communication are so important in all this. Fortunately for me, (ex-wife, closest friend) did grasp it all quickly. A couple of friends had some denial. One just had to say " you'll get better " and i had to make it clear that no I won't. Otherwise so hard to communicate plus one day she'd have to face all the shock at once instead of adjusting to it over time. I feel for those of you with spouses, close friends, and children who are struggling to deal with it. > > > > > > > > > > > > Sorry I've been AWOL. I got soooooo behind on the posts (was > > > > > > receiving them via email), that I'm afraid I just had to > delete > > them > > > > > > all and will just have to start reading them here on the site. > > > > > Yikes! > > > > > > You all are chatty 's!!! LOL!! I haven't been feeling > well > > > > > at > > > > > > all this past weekend...very weak and short of breath, along > > with a > > > > > > terrible migraine (do any of you suffer from migraines and > could > > > > > these > > > > > > be caused by not getting enough oxygen??) > > > > > > > > > > > > My appointment with my new Rheumy is tomorrow (yeah!) and > since > > my > > > > > GP > > > > > > forwarded all test results to him (including my most recent CT > > Scan > > > > > > and PFT results), I'm REALLY hoping he goes over the results > > with me > > > > > > and explains the PF diagnosis, since my GP didn't. I realize > he > > > > > isn't > > > > > > a Pulmo., but do you think this is a reasonable request? My > > hubby > > > > > > asked me if I would like him to take the day off work tomorrow > > so he > > > > > > could go with me (it's about an hour and a half away) and I > told > > him > > > > > > it wasn't necessary, however, the more I think about it, I'm > > > > > thinking > > > > > > perhaps I should have him go, because if the Rheumy does in > fact > > go > > > > > > over my PF diagnosis, it could be very upsetting to me (as > much > > as I > > > > > > know all about it and have read all the statistics, etc....I'm > > > > > > thinking it will be different hearing it face to face!) and I > > may > > > > > need > > > > > > him for the emotional support. What do you all think?? I'll > just > > > > > > feel terrible for having him take a day off work if he doesn't > > even > > > > > go > > > > > > over my PF DX., however, the receptionist did mention > something > > > > > about > > > > > > him giving me a 2nd opinion (and I know I don't need a 2nd > > opinion > > > > > on > > > > > > my Polymyositis, since I've been living with that for the past > 6 > > > > > > years!)...so she MUST have meant the PF, right?? > > > > > > > > > > > > I must admit that I'm a bit discouraged. As I was mentioning > to > > my > > > > > > hubby the other night, my GP sent me out of her office after > my > > PF > > > > > DX. > > > > > > without scheduling another appt. with me or anything (what the > > > > > > heck???) or telling me when I would be seeing my Pulmo. (I'm > > just > > > > > > assuming we're waiting for the Echo.) and right now I'm just > > feeling > > > > > > lost in never, never land. I'm going to ask the new Rheumy > > tomorrow > > > > > > about referring me to Diane 's excellent Pulmo. and > > hopefully > > > > > > he'll be able to do that. I just don't know how I go about > > finding > > > > > > out if I qualify for oxygen at home, or anything at this stage > > in > > > > > the > > > > > > game. I'm feeling very lost and hopeless right now, simply > > because > > > > > I > > > > > > don't KNOW anything!! It's like my GP dumped this on my lap, > > said > > > > > > " here ya go...now live a normal life....see ya whenever! " and > > > > > expects > > > > > > me not to ask any questions. It's just so unlike her!! I don't > > > > > know. > > > > > > I'm sorry. I'm sure I'll feel much better about things > tomorrow > > > > > > after seeing the Rheumy (I HOPE!!!), but right now, not so > > much!!! > > > > > > > > > > > > Thanks for listening. I appreciate it! > > > > > > > > > > > > Hugs, > > > > > > Dawn in N.B. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I think it's hard for my family because they have went through all of this beforeand not to long ago at that so it's still fresh in their mindI really believe knowledge, understanding, and communication are so important in all this. Fortunately for me, (ex-wife, closest friend) did grasp it all quickly. A couple of friends had some denial. One just had to say "you'll get better" and i had to make it clear that no I won't. Otherwise so hard to communicate plus one day she'd have to face all the shock at once instead of adjusting to it over time. I feel for those of you with spouses, close friends, and children who are struggling to deal with it.> > > > > >> > > > > > Sorry I've been AWOL. I got soooooo behind on the posts (was> > > > > > receiving them via email), that I'm afraid I just had to> delete> > them> > > > > > all and will just have to start reading them here on the site.> > > > > Yikes!> > > > > > You all are chatty 's!!! LOL!! I haven't been feeling> well> > > > > at> > > > > > all this past weekend...very weak and short of breath, along> > with a> > > > > > terrible migraine (do any of you suffer from migraines and> could> > > > > these> > > > > > be caused by not getting enough oxygen??)> > > > > >> > > > > > My appointment with my new Rheumy is tomorrow (yeah!) and> since> > my> > > > > GP> > > > > > forwarded all test results to him (including my most recent CT> > Scan> > > > > > and PFT results), I'm REALLY hoping he goes over the results> > with me> > > > > > and explains the PF diagnosis, since my GP didn't. I realize> he> > > > > isn't> > > > > > a Pulmo., but do you think this is a reasonable request? My> > hubby> > > > > > asked me if I would like him to take the day off work tomorrow> > so he> > > > > > could go with me (it's about an hour and a half away) and I> told> > him> > > > > > it wasn't necessary, however, the more I think about it, I'm> > > > > thinking> > > > > > perhaps I should have him go, because if the Rheumy does in> fact> > go> > > > > > over my PF diagnosis, it could be very upsetting to me (as> much> > as I> > > > > > know all about it and have read all the statistics, etc....I'm> > > > > > thinking it will be different hearing it face to face!) and I> > may> > > > > need> > > > > > him for the emotional support. What do you all think?? I'll> just> > > > > > feel terrible for having him take a day off work if he doesn't> > even> > > > > go> > > > > > over my PF DX., however, the receptionist did mention> something> > > > > about> > > > > > him giving me a 2nd opinion (and I know I don't need a 2nd> > opinion> > > > > on> > > > > > my Polymyositis, since I've been living with that for the past> 6> > > > > > years!)...so she MUST have meant the PF, right??> > > > > >> > > > > > I must admit that I'm a bit discouraged. As I was mentioning> to> > my> > > > > > hubby the other night, my GP sent me out of her office after> my> > PF> > > > > DX.> > > > > > without scheduling another appt. with me or anything (what the> > > > > > heck???) or telling me when I would be seeing my Pulmo. (I'm> > just> > > > > > assuming we're waiting for the Echo.) and right now I'm just> > feeling> > > > > > lost in never, never land. I'm going to ask the new Rheumy> > tomorrow> > > > > > about referring me to Diane 's excellent Pulmo. and> > hopefully> > > > > > he'll be able to do that. I just don't know how I go about> > finding> > > > > > out if I qualify for oxygen at home, or anything at this stage> > in> > > > > the> > > > > > game. I'm feeling very lost and hopeless right now, simply> > because> > > > > I> > > > > > don't KNOW anything!! It's like my GP dumped this on my lap,> > said> > > > > > "here ya go...now live a normal life....see ya whenever!" and> > > > > expects> > > > > > me not to ask any questions. It's just so unlike her!! I don't> > > > > know.> > > > > > I'm sorry. I'm sure I'll feel much better about things> tomorrow> > > > > > after seeing the Rheumy (I HOPE!!!), but right now, not so> > much!!!> > > > > >> > > > > > Thanks for listening. I appreciate it!> > > > > >> > > > > > Hugs,> > > > > > Dawn in N.B.> > > > > >> > > > >> > > >> > >> >> brett bowserbrett@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I cannot even imagine how it is for your family. I'd only hope somehow it could pull you all even closer together. I know its got to be horrifying for your younger brother now. I hope that ultimately the entire family can come together in this battle. > > > > > > > > > > > > > > > > Sorry I've been AWOL. I got soooooo behind on the posts > > (was > > > > > > > > receiving them via email), that I'm afraid I just had to > > > delete > > > > them > > > > > > > > all and will just have to start reading them here on the > > site. > > > > > > > Yikes! > > > > > > > > You all are chatty 's!!! LOL!! I haven't been feeling > > > well > > > > > > > at > > > > > > > > all this past weekend...very weak and short of breath, > > along > > > > with a > > > > > > > > terrible migraine (do any of you suffer from migraines and > > > could > > > > > > > these > > > > > > > > be caused by not getting enough oxygen??) > > > > > > > > > > > > > > > > My appointment with my new Rheumy is tomorrow (yeah!) and > > > since > > > > my > > > > > > > GP > > > > > > > > forwarded all test results to him (including my most > > recent CT > > > > Scan > > > > > > > > and PFT results), I'm REALLY hoping he goes over the > > results > > > > with me > > > > > > > > and explains the PF diagnosis, since my GP didn't. I > > realize > > > he > > > > > > > isn't > > > > > > > > a Pulmo., but do you think this is a reasonable request? > > My > > > > hubby > > > > > > > > asked me if I would like him to take the day off work > > tomorrow > > > > so he > > > > > > > > could go with me (it's about an hour and a half away) and > > I > > > told > > > > him > > > > > > > > it wasn't necessary, however, the more I think about it, > > I'm > > > > > > > thinking > > > > > > > > perhaps I should have him go, because if the Rheumy does > > in > > > fact > > > > go > > > > > > > > over my PF diagnosis, it could be very upsetting to me (as > > > much > > > > as I > > > > > > > > know all about it and have read all the statistics, > > etc....I'm > > > > > > > > thinking it will be different hearing it face to face!) > > and I > > > > may > > > > > > > need > > > > > > > > him for the emotional support. What do you all think?? > > I'll > > > just > > > > > > > > feel terrible for having him take a day off work if he > > doesn't > > > > even > > > > > > > go > > > > > > > > over my PF DX., however, the receptionist did mention > > > something > > > > > > > about > > > > > > > > him giving me a 2nd opinion (and I know I don't need a 2nd > > > > opinion > > > > > > > on > > > > > > > > my Polymyositis, since I've been living with that for the > > past > > > 6 > > > > > > > > years!)...so she MUST have meant the PF, right?? > > > > > > > > > > > > > > > > I must admit that I'm a bit discouraged. As I was > > mentioning > > > to > > > > my > > > > > > > > hubby the other night, my GP sent me out of her office > > after > > > my > > > > PF > > > > > > > DX. > > > > > > > > without scheduling another appt. with me or anything > > (what the > > > > > > > > heck???) or telling me when I would be seeing my Pulmo. > > (I'm > > > > just > > > > > > > > assuming we're waiting for the Echo.) and right now I'm > > just > > > > feeling > > > > > > > > lost in never, never land. I'm going to ask the new Rheumy > > > > tomorrow > > > > > > > > about referring me to Diane 's excellent Pulmo. and > > > > hopefully > > > > > > > > he'll be able to do that. I just don't know how I go about > > > > finding > > > > > > > > out if I qualify for oxygen at home, or anything at this > > stage > > > > in > > > > > > > the > > > > > > > > game. I'm feeling very lost and hopeless right now, simply > > > > because > > > > > > > I > > > > > > > > don't KNOW anything!! It's like my GP dumped this on my > > lap, > > > > said > > > > > > > > " here ya go...now live a normal life....see ya whenever! " > > and > > > > > > > expects > > > > > > > > me not to ask any questions. It's just so unlike her!! I > > don't > > > > > > > know. > > > > > > > > I'm sorry. I'm sure I'll feel much better about things > > > tomorrow > > > > > > > > after seeing the Rheumy (I HOPE!!!), but right now, not so > > > > much!!! > > > > > > > > > > > > > > > > Thanks for listening. I appreciate it! > > > > > > > > > > > > > > > > Hugs, > > > > > > > > Dawn in N.B. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > brett bowser > brett@... > Quote Link to comment Share on other sites More sharing options...
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