Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Hi Dawn! My first AI disease was rheumatoid arthritis, and it began when I was 15. The rest of them have piled on over the years, and the PF was diagnosed one month after I turned 39. My belief is that I had the PF at least 3 years before diagnosis, but was told I had allergies. I haven't been tested for the JO-1 antibody, but will be this week. As for the fluids.....girl, you will HAVE to get used to water!!! LOL!!! It's vital for our bodies to be hydrated, and those sodas and coffee are not the answer. I have a hard time myself remembering to drink the proper fluids. The water does so much for our bodies, flushing toxins, etc., and the more you do RIGHT for your body the better it can fight this disease. The exercise is another " hard " area, because of our lung capacity. I don't have a rehab close enough to me (I live out in the country) so I walk on our property as I can. I was prescribed portable oxygen to help me with this because I also need to lose about 50 pounds to help my lungs and my knees. Your Pulmo will go over this more with you, but you will have to ask about it specifically or they tend to forget. The more you exercise your lungs the more they can expand and get the oxygen into your bloodstream. It will also aid in preventing pulmonary hypertension, which is a bad thing to have, as some on this board can attest to. If they prescribe oxygen to you, USE IT. Don't be ashamed to be seen in public with it. Who cares what anyone else thinks when your health is at stake? You asked in another post about wearing a mask. If you're put on immuno-suppressants, as many are, then it would be advisable to wear one in public, especially in the winter months. And use lots of Purell or any hand sanitizer. I keep one in my purse and one in each vehicle. I stay out of malls, and don't go to movies very often, but I'm no longer on any meds for my diseases, so my immune system is doing better as far as colds and such go. When family members are ill they stay away from me, far, far away..... If my hubby gets sick he uses every precaution we can think of to keep me healthy. Hair spray? Pam? hmmmmm, I hadn't given any thought to it. I only use hairspray on occasion, and don't do much cooking, so I will leave that question up to someone wiser than myself. You also asked about starting treatments early versus waiting a while. My recommendation here is that you need to first research and learn as much as you can about the meds they will prescribe. There are risks and side-effects to all the drugs, so be aware of that before you begin any. If they mention Cytoxan, just know that it is a chemo drug and will make you sterile. And you have to drink a ton of water with it because it can cause bladder cancer. My Pulmo's have all told me there is no cure, and the drugs are iffy as to whether or not they help. In my own case, they harmed more than they helped and didn't stop the progression, but that is MY own personal experience with them. I can't say for certain that I wouldn't try something again if my disease progresses more. Ok, enough for one post I think! LOL! You'll find that I can go on and on, and I want you to have time to absorb what I've written. My very best advice to you is to learn as much as you can about what you're facing, and to always ask the Doc's as many questions as you can think of to ask. The best question regarding meds is to ask if they would personally take it themselves or prescribe it to their Mom or Wife, or child. You will be in my prayers Dawn. And ask me anything you want to, and also any of the board members. We're all here to fight this thing and support each other in any way we can. Hugs and hugs from Texas! Babs > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on > > > Thursday...however have been experiencing strong symptoms and > > begging > > > the Dr's. to take me seriously for the past 5 months. I live in an > > > extremely small town in N.B., Canada, so to get scheduled for tests > > > and procedures, it seems like you have to wait an eternity! > > *sigh* I > > > have a very complicated medical history and so I at least know that > > my > > > PF is NOT the IPF variety, as I know mine is related to my > > autoimmune > > > disease. In 2001, when I was 28, I was diagnosed with the > > autoimmune > > > disease, Polymyositis and I also tested positive for the anti JO-1 > > > antibody. Apparently this antibody means that you have a very high > > > chance at getting an ILD. I was also diagnosed with Sjogrens > > Syndrome > > > and Raynauds Phenomenon during this time. Immediately prior to > > > getting diagnosed with the above, I had 2 blood clots in my left leg > > > and 3 blood clots in my lungs, therefore, I am now taking Warfarin > > for > > > life. I've also had Asthma since childhood. That's my medical > > history > > > in a nutshell. Over the past 5 months, I haven't been able to > > breathe > > > doing the simplest of tasks, such as bathing (that's the worst!), > > > getting dressed or changed, and sometimes even brushing my teeth or > > > washing my face. I have this intense burning in my chest when I > > > inhale and it just about kills me to yawn, because of that burning > > > sensation (all my Dr.'s would do is lecture me about GERD when I > > > talked to them about this but I knew it had nothing to do with GERD > > > since my GERD is very well controlled. It was finally a CT Scan > > that > > > I had done 2 weeks ago that apparently confirmed my PF diagnosis and > > > apparently I am at the " early stage " . I have seen my Pulmonologist > > > once previous to having my CT Scan done and I will see him again > > but I > > > am waiting to have a 2nd set of Pulmonary Function test performed > > > (along with blood gases), as well as an Echocardiogram done. When > > my > > > GP told me my diagnosis on Thursday, she basically told me the news > > as > > > if she were diagnosing me with the common cold. It was very matter > > of > > > fact (and dare I say chipper?) and she sent me out the door. Of > > > course I didn't know what it was she was talking about so I was > > > absolutely fine then and there but once I got home and did some > > > research and let the news register, I got REALLY upset at the way > > she > > > told me. We've had an awesome relationship over the past 15 years > > and > > > I just can't believe that she wouldn't have more sympathy than > > that!!? > > > To be perfectly honest, I'm feeling quite hopeless. Is this as bad > > as > > > I think it is?? I know you all are in the same boat as I am and > > > probably have had to deal with all the ugliness this disease brings > > > for far too long and I'm so sorry I had to find you this way!! > > > However, I desperately need your support right now and all the > > advice > > > that you have to offer. Thankyou! > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 The University of New Brunswick is studying PF and you might ask your Dr if there is any benefit in contacting them or maybe your Dr can on your behalf. I am receiving Chinese Medicine treatment from a very caring TCM Dr and they have had some success with PF so I think - why not? Have any other people tried TCM and, if so, was there any success for them. Markham Canada > > > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on > > > > Thursday...however have been experiencing strong symptoms and > > > begging > > > > the Dr's. to take me seriously for the past 5 months. I live in an > > > > extremely small town in N.B., Canada, so to get scheduled for tests > > > > and procedures, it seems like you have to wait an eternity! > > > *sigh* I > > > > have a very complicated medical history and so I at least know that > > > my > > > > PF is NOT the IPF variety, as I know mine is related to my > > > autoimmune > > > > disease. In 2001, when I was 28, I was diagnosed with the > > > autoimmune > > > > disease, Polymyositis and I also tested positive for the anti JO-1 > > > > antibody. Apparently this antibody means that you have a very high > > > > chance at getting an ILD. I was also diagnosed with Sjogrens > > > Syndrome > > > > and Raynauds Phenomenon during this time. Immediately prior to > > > > getting diagnosed with the above, I had 2 blood clots in my left leg > > > > and 3 blood clots in my lungs, therefore, I am now taking Warfarin > > > for > > > > life. I've also had Asthma since childhood. That's my medical > > > history > > > > in a nutshell. Over the past 5 months, I haven't been able to > > > breathe > > > > doing the simplest of tasks, such as bathing (that's the worst!), > > > > getting dressed or changed, and sometimes even brushing my teeth or > > > > washing my face. I have this intense burning in my chest when I > > > > inhale and it just about kills me to yawn, because of that burning > > > > sensation (all my Dr.'s would do is lecture me about GERD when I > > > > talked to them about this but I knew it had nothing to do with GERD > > > > since my GERD is very well controlled. It was finally a CT Scan > > > that > > > > I had done 2 weeks ago that apparently confirmed my PF diagnosis and > > > > apparently I am at the " early stage " . I have seen my Pulmonologist > > > > once previous to having my CT Scan done and I will see him again > > > but I > > > > am waiting to have a 2nd set of Pulmonary Function test performed > > > > (along with blood gases), as well as an Echocardiogram done. When > > > my > > > > GP told me my diagnosis on Thursday, she basically told me the news > > > as > > > > if she were diagnosing me with the common cold. It was very matter > > > of > > > > fact (and dare I say chipper?) and she sent me out the door. Of > > > > course I didn't know what it was she was talking about so I was > > > > absolutely fine then and there but once I got home and did some > > > > research and let the news register, I got REALLY upset at the way > > > she > > > > told me. We've had an awesome relationship over the past 15 years > > > and > > > > I just can't believe that she wouldn't have more sympathy than > > > that!!? > > > > To be perfectly honest, I'm feeling quite hopeless. Is this as bad > > > as > > > > I think it is?? I know you all are in the same boat as I am and > > > > probably have had to deal with all the ugliness this disease brings > > > > for far too long and I'm so sorry I had to find you this way!! > > > > However, I desperately need your support right now and all the > > > advice > > > > that you have to offer. Thankyou! > > > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Translation please - what is a TCM??? in Oz > > > > >> > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF> on> > > > > Thursday...however have been experiencing strong symptoms and> > > > begging> > > > > the Dr's. to take me seriously for the past 5 months. I live in> an> > > > > extremely small town in N.B., Canada, so to get scheduled for> tests> > > > > and procedures, it seems like you have to wait an eternity!> > > > *sigh* I> > > > > have a very complicated medical history and so I at least know> that> > > > my> > > > > PF is NOT the IPF variety, as I know mine is related to my> > > > autoimmune> > > > > disease. In 2001, when I was 28, I was diagnosed with the> > > > autoimmune> > > > > disease, Polymyositis and I also tested positive for the anti> JO-1> > > > > antibody. Apparently this antibody means that you have a very> high> > > > > chance at getting an ILD. I was also diagnosed with Sjogrens> > > > Syndrome> > > > > and Raynauds Phenomenon during this time. Immediately prior to> > > > > getting diagnosed with the above, I had 2 blood clots in my left> leg> > > > > and 3 blood clots in my lungs, therefore, I am now taking> Warfarin> > > > for> > > > > life. I've also had Asthma since childhood. That's my medical> > > > history> > > > > in a nutshell. Over the past 5 months, I haven't been able to> > > > breathe> > > > > doing the simplest of tasks, such as bathing (that's the> worst!),> > > > > getting dressed or changed, and sometimes even brushing my teeth> or> > > > > washing my face. I have this intense burning in my chest when I> > > > > inhale and it just about kills me to yawn, because of that> burning> > > > > sensation (all my Dr.'s would do is lecture me about GERD when I> > > > > talked to them about this but I knew it had nothing to do with> GERD> > > > > since my GERD is very well controlled. It was finally a CT Scan> > > > that> > > > > I had done 2 weeks ago that apparently confirmed my PF diagnosis> and> > > > > apparently I am at the "early stage". I have seen my> Pulmonologist> > > > > once previous to having my CT Scan done and I will see him again> > > > but I> > > > > am waiting to have a 2nd set of Pulmonary Function test> performed> > > > > (along with blood gases), as well as an Echocardiogram done. > When> > > > my> > > > > GP told me my diagnosis on Thursday, she basically told me the> news> > > > as> > > > > if she were diagnosing me with the common cold. It was very> matter> > > > of> > > > > fact (and dare I say chipper?) and she sent me out the door. Of> > > > > course I didn't know what it was she was talking about so I was> > > > > absolutely fine then and there but once I got home and did some> > > > > research and let the news register, I got REALLY upset at the> way> > > > she> > > > > told me. We've had an awesome relationship over the past 15> years> > > > and> > > > > I just can't believe that she wouldn't have more sympathy than> > > > that!!?> > > > > To be perfectly honest, I'm feeling quite hopeless. Is this as> bad> > > > as> > > > > I think it is?? I know you all are in the same boat as I am and> > > > > probably have had to deal with all the ugliness this disease> brings> > > > > for far too long and I'm so sorry I had to find you this way!!> > > > > However, I desperately need your support right now and all the> > > > advice> > > > > that you have to offer. Thankyou!> > > > >> > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Traditional Chinese Medicine. > > > > > > > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with > PF > > on > > > > > > Thursday...however have been experiencing strong symptoms and > > > > > begging > > > > > > the Dr's. to take me seriously for the past 5 months. I live > in > > an > > > > > > extremely small town in N.B., Canada, so to get scheduled for > > tests > > > > > > and procedures, it seems like you have to wait an eternity! > > > > > *sigh* I > > > > > > have a very complicated medical history and so I at least know > > that > > > > > my > > > > > > PF is NOT the IPF variety, as I know mine is related to my > > > > > autoimmune > > > > > > disease. In 2001, when I was 28, I was diagnosed with the > > > > > autoimmune > > > > > > disease, Polymyositis and I also tested positive for the anti > > JO-1 > > > > > > antibody. Apparently this antibody means that you have a very > > high > > > > > > chance at getting an ILD. I was also diagnosed with Sjogrens > > > > > Syndrome > > > > > > and Raynauds Phenomenon during this time. Immediately prior > to > > > > > > getting diagnosed with the above, I had 2 blood clots in my > left > > leg > > > > > > and 3 blood clots in my lungs, therefore, I am now taking > > Warfarin > > > > > for > > > > > > life. I've also had Asthma since childhood. That's my medical > > > > > history > > > > > > in a nutshell. Over the past 5 months, I haven't been able to > > > > > breathe > > > > > > doing the simplest of tasks, such as bathing (that's the > > worst!), > > > > > > getting dressed or changed, and sometimes even brushing my > teeth > > or > > > > > > washing my face. I have this intense burning in my chest when > I > > > > > > inhale and it just about kills me to yawn, because of that > > burning > > > > > > sensation (all my Dr.'s would do is lecture me about GERD when > I > > > > > > talked to them about this but I knew it had nothing to do with > > GERD > > > > > > since my GERD is very well controlled. It was finally a CT > Scan > > > > > that > > > > > > I had done 2 weeks ago that apparently confirmed my PF > diagnosis > > and > > > > > > apparently I am at the " early stage " . I have seen my > > Pulmonologist > > > > > > once previous to having my CT Scan done and I will see him > again > > > > > but I > > > > > > am waiting to have a 2nd set of Pulmonary Function test > > performed > > > > > > (along with blood gases), as well as an Echocardiogram done. > > When > > > > > my > > > > > > GP told me my diagnosis on Thursday, she basically told me the > > news > > > > > as > > > > > > if she were diagnosing me with the common cold. It was very > > matter > > > > > of > > > > > > fact (and dare I say chipper?) and she sent me out the door. > Of > > > > > > course I didn't know what it was she was talking about so I > was > > > > > > absolutely fine then and there but once I got home and did > some > > > > > > research and let the news register, I got REALLY upset at the > > way > > > > > she > > > > > > told me. We've had an awesome relationship over the past 15 > > years > > > > > and > > > > > > I just can't believe that she wouldn't have more sympathy than > > > > > that!!? > > > > > > To be perfectly honest, I'm feeling quite hopeless. Is this > as > > bad > > > > > as > > > > > > I think it is?? I know you all are in the same boat as I am > and > > > > > > probably have had to deal with all the ugliness this disease > > brings > > > > > > for far too long and I'm so sorry I had to find you this way!! > > > > > > However, I desperately need your support right now and all the > > > > > advice > > > > > > that you have to offer. Thankyou! > > > > > > > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9 > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Aaah.....TA BWBB, GIO PS No I haven' tried any TCM....I don't approve of the killing of wildlife to procure some ingredients used in TCM > > > > > > >> > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed > with> > PF> > > on> > > > > > > Thursday...however have been experiencing strong symptoms > and> > > > > > begging> > > > > > > the Dr's. to take me seriously for the past 5 months. I > live> > in> > > an> > > > > > > extremely small town in N.B., Canada, so to get scheduled > for> > > tests> > > > > > > and procedures, it seems like you have to wait an > eternity!> > > > > > *sigh* I> > > > > > > have a very complicated medical history and so I at least > know> > > that> > > > > > my> > > > > > > PF is NOT the IPF variety, as I know mine is related to my> > > > > > autoimmune> > > > > > > disease. In 2001, when I was 28, I was diagnosed with the> > > > > > autoimmune> > > > > > > disease, Polymyositis and I also tested positive for the > anti> > > JO-1> > > > > > > antibody. Apparently this antibody means that you have a > very> > > high> > > > > > > chance at getting an ILD. I was also diagnosed with > Sjogrens> > > > > > Syndrome> > > > > > > and Raynauds Phenomenon during this time. Immediately > prior> > to> > > > > > > getting diagnosed with the above, I had 2 blood clots in > my> > left> > > leg> > > > > > > and 3 blood clots in my lungs, therefore, I am now taking> > > Warfarin> > > > > > for> > > > > > > life. I've also had Asthma since childhood. That's my > medical> > > > > > history> > > > > > > in a nutshell. Over the past 5 months, I haven't been > able to> > > > > > breathe> > > > > > > doing the simplest of tasks, such as bathing (that's the> > > worst!),> > > > > > > getting dressed or changed, and sometimes even brushing my> > teeth> > > or> > > > > > > washing my face. I have this intense burning in my chest > when> > I> > > > > > > inhale and it just about kills me to yawn, because of that> > > burning> > > > > > > sensation (all my Dr.'s would do is lecture me about GERD > when> > I> > > > > > > talked to them about this but I knew it had nothing to do > with> > > GERD> > > > > > > since my GERD is very well controlled. It was finally a > CT> > Scan> > > > > > that> > > > > > > I had done 2 weeks ago that apparently confirmed my PF> > diagnosis> > > and> > > > > > > apparently I am at the "early stage". I have seen my> > > Pulmonologist> > > > > > > once previous to having my CT Scan done and I will see him> > again> > > > > > but I> > > > > > > am waiting to have a 2nd set of Pulmonary Function test> > > performed> > > > > > > (along with blood gases), as well as an Echocardiogram > done.> > > When> > > > > > my> > > > > > > GP told me my diagnosis on Thursday, she basically told > me the> > > news> > > > > > as> > > > > > > if she were diagnosing me with the common cold. It was > very> > > matter> > > > > > of> > > > > > > fact (and dare I say chipper?) and she sent me out the > door. > > Of> > > > > > > course I didn't know what it was she was talking about so > I> > was> > > > > > > absolutely fine then and there but once I got home and did> > some> > > > > > > research and let the news register, I got REALLY upset at > the> > > way> > > > > > she> > > > > > > told me. We've had an awesome relationship over the past > 15> > > years> > > > > > and> > > > > > > I just can't believe that she wouldn't have more sympathy > than> > > > > > that!!?> > > > > > > To be perfectly honest, I'm feeling quite hopeless. Is > this> > as> > > bad> > > > > > as> > > > > > > I think it is?? I know you all are in the same boat as I > am> > and> > > > > > > probably have had to deal with all the ugliness this > disease> > > brings> > > > > > > for far too long and I'm so sorry I had to find you this > way!!> > > > > > > However, I desperately need your support right now and > all the> > > > > > advice> > > > > > > that you have to offer. Thankyou!> > > > > > >> > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Dawn, my AI diseases appear to be genetic, or at least the tendency towards them. My Mom died nearly 14 years ago from complications of Scleroderma. My older brother died 8 years ago from Wegner's Granulamatosis. My older sister has Lupus, and another brother has Psoriasis. I'm the only one with all the multiples though. We think it came down through my Mom's side as the brothers and sisters all have different Dads. And there are hints of AI in older relatives who passed before there was much knowledge about AI diseases, but their sypmtoms that were reported all point to AI diseases. The other thought is that since we lived in the Sacramento Valley in California that all the pesticides and such could have contributed. I tend to lean towards it being familial however. I was told the RA would have me in a wheelchair by age 21, but here I am at 47 and still on my feet, but just barely...LOL! My prognosis from having these diseases was that I should pass before I reached 45, and then of course the PF was supposed to have already done me in, but I keep on ticking. One of the major concerns is that Lupus can cause strokes, and in fact I've had 3 TIA's, maybe more. I just live each day though, thankful to be blessed to still be here and still be able to have hope. Each disease has just kinda layered on, and in fact what I have is called Overlapping Disease by the rheumatologists. I see the Rheumy tomorrow for more tests, so will ask about the JO-1 antibody which I think is just a blood test. Maybe you could try some of the flavored waters, like Propel, to at least get better hydration, and then slowly learn to " like " water again.....keeping my fingers crossed that you at least give it a try! Hugs! Babs in Texas > > > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on > > > > Thursday...however have been experiencing strong symptoms and > > > begging > > > > the Dr's. to take me seriously for the past 5 months. I live in an > > > > extremely small town in N.B., Canada, so to get scheduled for > tests > > > > and procedures, it seems like you have to wait an eternity! > > > *sigh* I > > > > have a very complicated medical history and so I at least know > that > > > my > > > > PF is NOT the IPF variety, as I know mine is related to my > > > autoimmune > > > > disease. In 2001, when I was 28, I was diagnosed with the > > > autoimmune > > > > disease, Polymyositis and I also tested positive for the anti JO-1 > > > > antibody. Apparently this antibody means that you have a very high > > > > chance at getting an ILD. I was also diagnosed with Sjogrens > > > Syndrome > > > > and Raynauds Phenomenon during this time. Immediately prior to > > > > getting diagnosed with the above, I had 2 blood clots in my left > leg > > > > and 3 blood clots in my lungs, therefore, I am now taking Warfarin > > > > for > > > > life. I've also had Asthma since childhood. That's my medical > > > history > > > > in a nutshell. Over the past 5 months, I haven't been able to > > > breathe > > > > doing the simplest of tasks, such as bathing (that's the worst!), > > > > getting dressed or changed, and sometimes even brushing my teeth > or > > > > washing my face. I have this intense burning in my chest when I > > > > inhale and it just about kills me to yawn, because of that burning > > > > sensation (all my Dr.'s would do is lecture me about GERD when I > > > > talked to them about this but I knew it had nothing to do with > GERD > > > > since my GERD is very well controlled. It was finally a CT Scan > > > that > > > > I had done 2 weeks ago that apparently confirmed my PF diagnosis > and > > > > apparently I am at the " early stage " . I have seen my Pulmonologist > > > > once previous to having my CT Scan done and I will see him again > > > but I > > > > am waiting to have a 2nd set of Pulmonary Function test performed > > > > (along with blood gases), as well as an Echocardiogram done. When > > > my > > > > GP told me my diagnosis on Thursday, she basically told me the > news > > > as > > > > if she were diagnosing me with the common cold. It was very matter > > > > of > > > > fact (and dare I say chipper?) and she sent me out the door. Of > > > > course I didn't know what it was she was talking about so I was > > > > absolutely fine then and there but once I got home and did some > > > > research and let the news register, I got REALLY upset at the way > > > she > > > > told me. We've had an awesome relationship over the past 15 years > > > and > > > > I just can't believe that she wouldn't have more sympathy than > > > that!!? > > > > To be perfectly honest, I'm feeling quite hopeless. Is this as bad > > > > as > > > > I think it is?? I know you all are in the same boat as I am and > > > > probably have had to deal with all the ugliness this disease > brings > > > > for far too long and I'm so sorry I had to find you this way!! > > > > However, I desperately need your support right now and all the > > > advice > > > > that you have to offer. Thankyou! > > > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 It also includes Accupuncture, Massage, Herbs, Nutrition, Qigong, and others. It isn't just the treatment but the theory and approach. TCM theory asserts that processes of the human body are interrelated and in constant interaction with the environment. TCM practitioners believe signs of disharmony help them to understand, treat and prevent illness and disease. > > > > > > > > > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed > with > > PF > > > on > > > > > > > Thursday...however have been experiencing strong symptoms > and > > > > > > begging > > > > > > > the Dr's. to take me seriously for the past 5 months. I > live > > in > > > an > > > > > > > extremely small town in N.B., Canada, so to get scheduled > for > > > tests > > > > > > > and procedures, it seems like you have to wait an > eternity! > > > > > > *sigh* I > > > > > > > have a very complicated medical history and so I at least > know > > > that > > > > > > my > > > > > > > PF is NOT the IPF variety, as I know mine is related to my > > > > > > autoimmune > > > > > > > disease. In 2001, when I was 28, I was diagnosed with the > > > > > > autoimmune > > > > > > > disease, Polymyositis and I also tested positive for the > anti > > > JO-1 > > > > > > > antibody. Apparently this antibody means that you have a > very > > > high > > > > > > > chance at getting an ILD. I was also diagnosed with > Sjogrens > > > > > > Syndrome > > > > > > > and Raynauds Phenomenon during this time. Immediately > prior > > to > > > > > > > getting diagnosed with the above, I had 2 blood clots in > my > > left > > > leg > > > > > > > and 3 blood clots in my lungs, therefore, I am now taking > > > Warfarin > > > > > > for > > > > > > > life. I've also had Asthma since childhood. That's my > medical > > > > > > history > > > > > > > in a nutshell. Over the past 5 months, I haven't been > able to > > > > > > breathe > > > > > > > doing the simplest of tasks, such as bathing (that's the > > > worst!), > > > > > > > getting dressed or changed, and sometimes even brushing my > > teeth > > > or > > > > > > > washing my face. I have this intense burning in my chest > when > > I > > > > > > > inhale and it just about kills me to yawn, because of that > > > burning > > > > > > > sensation (all my Dr.'s would do is lecture me about GERD > when > > I > > > > > > > talked to them about this but I knew it had nothing to do > with > > > GERD > > > > > > > since my GERD is very well controlled. It was finally a > CT > > Scan > > > > > > that > > > > > > > I had done 2 weeks ago that apparently confirmed my PF > > diagnosis > > > and > > > > > > > apparently I am at the " early stage " . I have seen my > > > Pulmonologist > > > > > > > once previous to having my CT Scan done and I will see him > > again > > > > > > but I > > > > > > > am waiting to have a 2nd set of Pulmonary Function test > > > performed > > > > > > > (along with blood gases), as well as an Echocardiogram > done. > > > When > > > > > > my > > > > > > > GP told me my diagnosis on Thursday, she basically told > me the > > > news > > > > > > as > > > > > > > if she were diagnosing me with the common cold. It was > very > > > matter > > > > > > of > > > > > > > fact (and dare I say chipper?) and she sent me out the > door. > > Of > > > > > > > course I didn't know what it was she was talking about so > I > > was > > > > > > > absolutely fine then and there but once I got home and did > > some > > > > > > > research and let the news register, I got REALLY upset at > the > > > way > > > > > > she > > > > > > > told me. We've had an awesome relationship over the past > 15 > > > years > > > > > > and > > > > > > > I just can't believe that she wouldn't have more sympathy > than > > > > > > that!!? > > > > > > > To be perfectly honest, I'm feeling quite hopeless. Is > this > > as > > > bad > > > > > > as > > > > > > > I think it is?? I know you all are in the same boat as I > am > > and > > > > > > > probably have had to deal with all the ugliness this > disease > > > brings > > > > > > > for far too long and I'm so sorry I had to find you this > way!! > > > > > > > However, I desperately need your support right now and > all the > > > > > > advice > > > > > > > that you have to offer. Thankyou! > > > > > > > > > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9 > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Dear Dawn, No they're quite different...Homoeopathy uses distilled 'essence' of substances usually flowers/herbs etc..based on old OLD medicine from Britian. While TCM also used parts of plants it also uses parts of the animal kingdom in it's medicine which is also old, OLD medicine. Western Medicine is comparatively new & chemically derived, however it does mimic or chemically synthesise many of the old plant kingdom ingredients. Oh for the day when all modalities are recognised for the benefits they bring & mixed n' matched in one Medical Practice. in Oz > > > > > > >> > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed > with> > PF> > > on> > > > > > > Thursday...however have been experiencing strong symptoms > and> > > > > > begging> > > > > > > the Dr's. to take me seriously for the past 5 months. I > live> > in> > > an> > > > > > > extremely small town in N.B., Canada, so to get scheduled > for> > > tests> > > > > > > and procedures, it seems like you have to wait an > eternity!> > > > > > *sigh* I> > > > > > > have a very complicated medical history and so I at least > know> > > that> > > > > > my> > > > > > > PF is NOT the IPF variety, as I know mine is related to my> > > > > > autoimmune> > > > > > > disease. In 2001, when I was 28, I was diagnosed with the> > > > > > autoimmune> > > > > > > disease, Polymyositis and I also tested positive for the > anti> > > JO-1> > > > > > > antibody. Apparently this antibody means that you have a > very> > > high> > > > > > > chance at getting an ILD. I was also diagnosed with > Sjogrens> > > > > > Syndrome> > > > > > > and Raynauds Phenomenon during this time. Immediately > prior> > to> > > > > > > getting diagnosed with the above, I had 2 blood clots in > my> > left> > > leg> > > > > > > and 3 blood clots in my lungs, therefore, I am now taking> > > Warfarin> > > > > > for> > > > > > > life. I've also had Asthma since childhood. That's my > medical> > > > > > history> > > > > > > in a nutshell. Over the past 5 months, I haven't been > able to> > > > > > breathe> > > > > > > doing the simplest of tasks, such as bathing (that's the> > > worst!),> > > > > > > getting dressed or changed, and sometimes even brushing my> > teeth> > > or> > > > > > > washing my face. I have this intense burning in my chest > when> > I> > > > > > > inhale and it just about kills me to yawn, because of that> > > burning> > > > > > > sensation (all my Dr.'s would do is lecture me about GERD > when> > I> > > > > > > talked to them about this but I knew it had nothing to do > with> > > GERD> > > > > > > since my GERD is very well controlled. It was finally a > CT> > Scan> > > > > > that> > > > > > > I had done 2 weeks ago that apparently confirmed my PF> > diagnosis> > > and> > > > > > > apparently I am at the "early stage". I have seen my> > > Pulmonologist> > > > > > > once previous to having my CT Scan done and I will see him> > again> > > > > > but I> > > > > > > am waiting to have a 2nd set of Pulmonary Function test> > > performed> > > > > > > (along with blood gases), as well as an Echocardiogram > done.> > > When> > > > > > my> > > > > > > GP told me my diagnosis on Thursday, she basically told > me the> > > news> > > > > > as> > > > > > > if she were diagnosing me with the common cold. It was > very> > > matter> > > > > > of> > > > > > > fact (and dare I say chipper?) and she sent me out the > door. > > Of> > > > > > > course I didn't know what it was she was talking about so > I> > was> > > > > > > absolutely fine then and there but once I got home and did> > some> > > > > > > research and let the news register, I got REALLY upset at > the> > > way> > > > > > she> > > > > > > told me. We've had an awesome relationship over the past > 15> > > years> > > > > > and> > > > > > > I just can't believe that she wouldn't have more sympathy > than> > > > > > that!!?> > > > > > > To be perfectly honest, I'm feeling quite hopeless. Is > this> > as> > > bad> > > > > > as> > > > > > > I think it is?? I know you all are in the same boat as I > am> > and> > > > > > > probably have had to deal with all the ugliness this > disease> > > brings> > > > > > > for far too long and I'm so sorry I had to find you this > way!!> > > > > > > However, I desperately need your support right now and > all the> > > > > > advice> > > > > > > that you have to offer. Thankyou!> > > > > > >> > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Dear Dawn, Another idea to help you raise your water consumption....choose a really beautiful glass, one that seems precious to your eye...that becomes your Water Only Glass......I also find keeping water chilled in my fridge makes it a whole lot more palatable....adding a slice of Lime or Lemon makes it seem downright sophisticated! My water uptake has increased heaps since I turned it into an ART Form!!!!! Cheers, in Oz > > > > >> > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with > PF on> > > > > Thursday...however have been experiencing strong symptoms and > > > > begging> > > > > the Dr's. to take me seriously for the past 5 months. I live > in an> > > > > extremely small town in N.B., Canada, so to get scheduled for> > tests> > > > > and procedures, it seems like you have to wait an eternity! > > > > *sigh* I> > > > > have a very complicated medical history and so I at least know> > that > > > > my> > > > > PF is NOT the IPF variety, as I know mine is related to my > > > > autoimmune> > > > > disease. In 2001, when I was 28, I was diagnosed with the > > > > autoimmune> > > > > disease, Polymyositis and I also tested positive for the anti > JO-1> > > > > antibody. Apparently this antibody means that you have a very > high> > > > > chance at getting an ILD. I was also diagnosed with Sjogrens > > > > Syndrome> > > > > and Raynauds Phenomenon during this time. Immediately prior to> > > > > getting diagnosed with the above, I had 2 blood clots in my > left> > leg> > > > > and 3 blood clots in my lungs, therefore, I am now taking > Warfarin> > > > > > for> > > > > life. I've also had Asthma since childhood. That's my medical > > > > history> > > > > in a nutshell. Over the past 5 months, I haven't been able to > > > > breathe> > > > > doing the simplest of tasks, such as bathing (that's the > worst!),> > > > > getting dressed or changed, and sometimes even brushing my > teeth> > or> > > > > washing my face. I have this intense burning in my chest when > I> > > > > inhale and it just about kills me to yawn, because of that > burning> > > > > sensation (all my Dr.'s would do is lecture me about GERD > when I> > > > > talked to them about this but I knew it had nothing to do with> > GERD> > > > > since my GERD is very well controlled. It was finally a CT > Scan > > > > that> > > > > I had done 2 weeks ago that apparently confirmed my PF > diagnosis> > and> > > > > apparently I am at the "early stage". I have seen my > Pulmonologist> > > > > once previous to having my CT Scan done and I will see him > again > > > > but I> > > > > am waiting to have a 2nd set of Pulmonary Function test > performed> > > > > (along with blood gases), as well as an Echocardiogram done. > When > > > > my> > > > > GP told me my diagnosis on Thursday, she basically told me the> > news > > > > as> > > > > if she were diagnosing me with the common cold. It was very > matter> > > > > > of> > > > > fact (and dare I say chipper?) and she sent me out the door. > Of> > > > > course I didn't know what it was she was talking about so I > was> > > > > absolutely fine then and there but once I got home and did > some> > > > > research and let the news register, I got REALLY upset at the > way > > > > she> > > > > told me. We've had an awesome relationship over the past 15 > years > > > > and> > > > > I just can't believe that she wouldn't have more sympathy > than > > > > that!!?> > > > > To be perfectly honest, I'm feeling quite hopeless. Is this > as bad> > > > > > as> > > > > I think it is?? I know you all are in the same boat as I am > and> > > > > probably have had to deal with all the ugliness this disease> > brings> > > > > for far too long and I'm so sorry I had to find you this > way!! > > > > > However, I desperately need your support right now and all > the > > > > advice> > > > > that you have to offer. Thankyou!> > > > > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Dawn, it could be that yours is caused by the environment. Or it could very well be a latent gene that was hiding and waiting for just the right trigger to become active. I'm sure they asked you all the questions about working around asbestos, etc. My Rheumy today told me that I had hit the lottery on the AI diseases. He wants me to have new knees put in but I convinced him that I need to lose weight first and see if that helps. When he tested my right knee he said it gave him the heebie-jeebies...LOL! Thanks for the kudos. I'm not sure if I'm a fighter or just a stubborn old gal. Or possibly I'm just not a quitter. I try to remain optimistic in the face of it all. Doc said that he thinks there WILL be a cure in my lifetime, so I have to stick around to find out. Keep us posted on the tests, and you know I'll be praying for you that the Echo shows no abnormalities. I'm so sorry you lost your parents so young. I was young too, with both of mine, and it still hurts to not have them around. My Mom was the greatest, EVER. And my Dad was a funny and gentle man. I try to live my life so that they will be proud of me. I think you're doing great Dawn. Keep asking the questions, keep searching, and continue to hang out here. This PF may be trying to get it's hooks into us but we have to hang tough and stay as healthy as possible. Yup, drink your water girl!!! Hugs! Babs in Texas > > > > > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with > PF on > > > > > Thursday...however have been experiencing strong symptoms and > > > > begging > > > > > the Dr's. to take me seriously for the past 5 months. I live > in an > > > > > extremely small town in N.B., Canada, so to get scheduled for > > tests > > > > > and procedures, it seems like you have to wait an eternity! > > > > *sigh* I > > > > > have a very complicated medical history and so I at least know > > that > > > > my > > > > > PF is NOT the IPF variety, as I know mine is related to my > > > > autoimmune > > > > > disease. In 2001, when I was 28, I was diagnosed with the > > > > autoimmune > > > > > disease, Polymyositis and I also tested positive for the anti > JO-1 > > > > > antibody. Apparently this antibody means that you have a very > high > > > > > chance at getting an ILD. I was also diagnosed with Sjogrens > > > > Syndrome > > > > > and Raynauds Phenomenon during this time. Immediately prior to > > > > > getting diagnosed with the above, I had 2 blood clots in my > left > > leg > > > > > and 3 blood clots in my lungs, therefore, I am now taking > Warfarin > > > > > > for > > > > > life. I've also had Asthma since childhood. That's my medical > > > > history > > > > > in a nutshell. Over the past 5 months, I haven't been able to > > > > breathe > > > > > doing the simplest of tasks, such as bathing (that's the > worst!), > > > > > getting dressed or changed, and sometimes even brushing my > teeth > > or > > > > > washing my face. I have this intense burning in my chest when > I > > > > > inhale and it just about kills me to yawn, because of that > burning > > > > > sensation (all my Dr.'s would do is lecture me about GERD > when I > > > > > talked to them about this but I knew it had nothing to do with > > GERD > > > > > since my GERD is very well controlled. It was finally a CT > Scan > > > > that > > > > > I had done 2 weeks ago that apparently confirmed my PF > diagnosis > > and > > > > > apparently I am at the " early stage " . I have seen my > Pulmonologist > > > > > once previous to having my CT Scan done and I will see him > again > > > > but I > > > > > am waiting to have a 2nd set of Pulmonary Function test > performed > > > > > (along with blood gases), as well as an Echocardiogram done. > When > > > > my > > > > > GP told me my diagnosis on Thursday, she basically told me the > > news > > > > as > > > > > if she were diagnosing me with the common cold. It was very > matter > > > > > > of > > > > > fact (and dare I say chipper?) and she sent me out the door. > Of > > > > > course I didn't know what it was she was talking about so I > was > > > > > absolutely fine then and there but once I got home and did > some > > > > > research and let the news register, I got REALLY upset at the > way > > > > she > > > > > told me. We've had an awesome relationship over the past 15 > years > > > > and > > > > > I just can't believe that she wouldn't have more sympathy > than > > > > that!!? > > > > > To be perfectly honest, I'm feeling quite hopeless. Is this > as bad > > > > > > as > > > > > I think it is?? I know you all are in the same boat as I am > and > > > > > probably have had to deal with all the ugliness this disease > > brings > > > > > for far too long and I'm so sorry I had to find you this > way!! > > > > > However, I desperately need your support right now and all > the > > > > advice > > > > > that you have to offer. Thankyou! > > > > > > > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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