Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Caro, Hi I just wanted to let you know what I use. I use organic Flax Seed Oil (USDA) only. It has a seal on it. Not only is it good for constipation but it is rich in Omega-3. I sprinkle some on my veggies with Organic Olive Oil. No problem. This is what I use for me ! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000 Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too. Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too. Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I heard that, Irene. I have had several nights with no sleep, too. Am on a much higher fiber diet this week and am hoping it will work. I didn't like the Lactaid, either. YUK!! I have filled my fridge with fruit and things that I can grab and eat on the go, as it is too hot to cook!! Even with the air on. My apartment is upstairs, so the heat rises. Is going to be an awfully hot summer. I so wish they would hurry up and open our pool. They have started cleaning it, but that is as far as they got. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: STEPHEN R WILSON <svwilsonmsn (DOT) com>Subject: RE: Hi allTo: Breathe-Support@ yahoogroups. comDate: Friday, June 6, 2008, 8:58 PM Hi Caro, I have the constipation controlled with dried plums and over the counter dulcolax. I only have problem now when on antibiotics. Oops forgot i take aricept(for Alzheimers) which also helps the constipation problem. Bruising- yes seems like I stumble into a mattress and it bruises. Some times I am black and blue from bumping unknown objects. The full dose Requip has controlled my rls and leg pain. I am still looking for a better anti depressant so am dissapointed the cymbalta isn't helping you yet. All in all life is better right now if the sun would just shine again. I'm sure things will be better for you too. Steve 60 from WA IPF 2006 Parkinsons 2008 Alzheimers 2008 From: "carowade4444" <carowade4444@ yahoo.com>Reply-To: Breathe-Support@ yahoogroups. comTo: Breathe-Support@ yahoogroups. comSubject: Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000 Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too. Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too. Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro Looking for the perfect gift? Give the gift of Flickr! Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Caro...We're burning from the heat. Even with the A/C on. All the Best with the High fiber diet. Our pools, open after June 23rd, when all schools are closed...even the one we have here outdoor pool, in my building. I think they should change the rule. I wouldn't be able to go in because of the PICC Line. I can sit on the edge of the pool and just wet my legs. when there's not a lot of people. IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000 Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too. Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too. Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro Looking for the perfect gift? Give the gift of Flickr! Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I would do just that. Stick my feet in and go ahead on!! Don't let this disease stop you from doing anything. Live life to the fullest!! That is what I am trying to do!! Hope you have a good night!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: STEPHEN R WILSON <svwilsonmsn (DOT) com>Subject: RE: Hi allTo: Breathe-Support@ yahoogroups. comDate: Friday, June 6, 2008, 8:58 PM Hi Caro, I have the constipation controlled with dried plums and over the counter dulcolax. I only have problem now when on antibiotics. Oops forgot i take aricept(for Alzheimers) which also helps the constipation problem. Bruising- yes seems like I stumble into a mattress and it bruises. Some times I am black and blue from bumping unknown objects. The full dose Requip has controlled my rls and leg pain. I am still looking for a better anti depressant so am dissapointed the cymbalta isn't helping you yet. All in all life is better right now if the sun would just shine again. I'm sure things will be better for you too. Steve 60 from WA IPF 2006 Parkinsons 2008 Alzheimers 2008 From: "carowade4444" <carowade4444@ yahoo.com>Reply-To: Breathe-Support@ yahoogroups. comTo: Breathe-Support@ yahoogroups. comSubject: Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000 Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too. Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too. Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro Looking for the perfect gift? Give the gift of Flickr! Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Caro, What a coincidence. I am 47 as well. I have had a permanent headache now for 15 years. It use to get a lot worse. couldn't work for about 5 because of it and my back. I get migraines, not much I can do just rest and talk myself threw it. Do you know how you got all that? Sorry to be nosy. You got sick so young. Did you go threw the Hurricanes over there? God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Re: Birmingham Hi all, I just had a pacemaker install in my chest because my pulse wasdown 30to 40 and sometime stop altogether it's been 4 days now and feelbetter already. Take care all of you. Guy IPF 03> >> > Hi All,> >> > Sorry I haven't posted in a few days again, but I am back from> > Birmingham. Still don't know anything definite other than the> > diagnosis I already have of UIP. First when I got there, they did> > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > even feel it, but not this time. She had to pry (her words)). Then> > I had to do PFTs, which showed 57% lung function, compared to the68%> > I had in December. Next, I visited with the doc. Actually there> > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > the Assistant Professor). His name was Dr. , very nice guy.> > He took down all my history and said he thinks I may have pulmonary> > hypertension (which would explain the rapid heart rate). He did exam> > and then goes to discuss with Dr. de Andrade, who comes back in and> > again, very nice guy. He explains that it is very rare in a woman> > under the age of 50 to have pulmonary fibrosis and since I have been> > sick for 6 years already, even more rare, not unheard of, just rare.> > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > he thinks there is an underlying disease causing the PF, so I get> > blood work (10 tubes of blood) for various autoimmune diseases. He> > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > which also there is no cure). Dr. did a heart exam and looked> > at the veins in my neck before talking to Dr. de Andrade who decided> > I needed another chest CT (my last one was in February 2008), so I> > had that done (without contrast thank God!!) and also that I needed> > an ultrasound of my heart to check for blood flow to the heart and> > for any blockages to the valves. All in all, he said if I don't hear> > from them in a week, to call them to get the results. Other than> > that, he didn't change any of my medications, except to decrease the> > prednisone even further to 10 mg a day. He said he wants me to get> > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > told him I had gained 20 pounds since being on them starting in> > January, and told him I have moon faces and he agreed. He said they> > want me lean and healthy and I did not need to be on that for sure.> > Any weight gain is out of the question, he said. He told me I have> > to keep moving. He told me to eat lean proteins, fruits, and veggies> > and no snacks. He PROMISED me the weight will come off. He said he> > expects me to lose 10 pounds rather quickly. I sure hope he is> > right, because I am miserable and I told him so, too!! He said there> > are no real medications to treat PF, and I knew that, but he said> > when I come back, I can decide either to go with the Imuran and N-> > Acetyl-Cysteine (NAC), which is all the best they know at this point> > to give patients with PF, or I can try an experimental drug(clinical> > trial), which I don't know what the side effects will be, but I am> > kinda leaning towards doing anyway, because I feel like even if it> > doesn't help me, it may help some other person with this stupid> > disease on down the road and it would be worth it. As for lung> > transplant, I don't yet qualify because my sats are not low enough> > and I am not on oxygen yet. Note that I said "YET." He said the key> > to prolonging oxygen use as long as possible is to stay as activeand> > healthy as possible and that is what I am going to try and do.> > (my grandson) is here with me this summer, and he really> > helps to keep me motivated and I think I need that right now. Also> > the docs were really glad to know that I am in pulmonary rehab and> > that I am going to stay in the Wellness Program when I get done with> > the rehab program. All in all, even though I did get some not so> > good news, I feel like I got some good news, also, so until nextweek> > or whenever I get the results, I am just trying to keep my self in> > exercise and health mode the best I can and keep going.> >> > So that was my Birmingham visit. My parents went with me and we> > really had a nice trip. I don't know what I would do without them.> > They have been my rock through all of this. Thank God for my Mama> > and Daddy!!> >> > I hope you all have a great week and now that I am back I hope to be> > able to keep up with posts better and write more than I have been. I> > do reads all the posts and think of each and every one of you> > everyday. You are my air family and you are my rock, as well. Don't> > know what I would do without you guys, either!! I love you all!!> >> > Have a great day!!> >> > Caro> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Actually we only got the wind from Hurricane Katrina. No major damage anywhere near what New Orleans got. We get mostly tornadoes here and that is bad enough. Usually during hurricane season we get more tornadoes than usual. Guess they will be coming soon. I don't have any idea how I got sick so young. I feel like I still have a whole life left to live and it is being cut short and that makes me angry sometimes, sad sometimes, and then thankful sometimes that I even have another day to have any kind of emotion. The doctor in Birmingham told me that he thinks my fibrosis was caused from untreated gastroesophageal reflux disease. My doctor 10 years ago diagnosed me with acid reflux and never treated it and the doc in Birmingham said that over the years the pH in a normal person is pH 7 and in a person with acid reflux, it is a pH of 2 and when you have reflux the acid goes straight into your lungs, so, therefore, being untreated I developed fibrosis. That was one of his theories. The other one is that I have scleroderma and that is what caused it and if so, I have probably had it for years undiagnosed. I looked it up on the Internet and scleroderma is nicknamed "the disease that turns people to stone." Oh, how lucky I am!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: dragonflymcs <dragonflymcs@ yahoo.com>Subject: Re: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 9:07 PM Caro, Wow seems you have been threw alot, If you do not mind how old are you now? God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Re: Birmingham Hi all, I just had a pacemaker install in my chest because my pulse wasdown 30to 40 and sometime stop altogether it's been 4 days now and feelbetter already. Take care all of you. Guy IPF 03> >> > Hi All,> >> > Sorry I haven't posted in a few days again, but I am back from> > Birmingham. Still don't know anything definite other than the> > diagnosis I already have of UIP. First when I got there, they did> > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > even feel it, but not this time. She had to pry (her words)). Then> > I had to do PFTs, which showed 57% lung function, compared to the68%> > I had in December. Next, I visited with the doc. Actually there> > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > the Assistant Professor). His name was Dr. , very nice guy.> > He took down all my history and said he thinks I may have pulmonary> > hypertension (which would explain the rapid heart rate). He did exam> > and then goes to discuss with Dr. de Andrade, who comes back in and> > again, very nice guy. He explains that it is very rare in a woman> > under the age of 50 to have pulmonary fibrosis and since I have been> > sick for 6 years already, even more rare, not unheard of, just rare.> > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > he thinks there is an underlying disease causing the PF, so I get> > blood work (10 tubes of blood) for various autoimmune diseases. He> > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > which also there is no cure). Dr. did a heart exam and looked> > at the veins in my neck before talking to Dr. de Andrade who decided> > I needed another chest CT (my last one was in February 2008), so I> > had that done (without contrast thank God!!) and also that I needed> > an ultrasound of my heart to check for blood flow to the heart and> > for any blockages to the valves. All in all, he said if I don't hear> > from them in a week, to call them to get the results. Other than> > that, he didn't change any of my medications, except to decrease the> > prednisone even further to 10 mg a day. He said he wants me to get> > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > told him I had gained 20 pounds since being on them starting in> > January, and told him I have moon faces and he agreed. He said they> > want me lean and healthy and I did not need to be on that for sure.> > Any weight gain is out of the question, he said. He told me I have> > to keep moving. He told me to eat lean proteins, fruits, and veggies> > and no snacks. He PROMISED me the weight will come off. He said he> > expects me to lose 10 pounds rather quickly. I sure hope he is> > right, because I am miserable and I told him so, too!! He said there> > are no real medications to treat PF, and I knew that, but he said> > when I come back, I can decide either to go with the Imuran and N-> > Acetyl-Cysteine (NAC), which is all the best they know at this point> > to give patients with PF, or I can try an experimental drug(clinical> > trial), which I don't know what the side effects will be, but I am> > kinda leaning towards doing anyway, because I feel like even if it> > doesn't help me, it may help some other person with this stupid> > disease on down the road and it would be worth it. As for lung> > transplant, I don't yet qualify because my sats are not low enough> > and I am not on oxygen yet. Note that I said "YET." He said the key> > to prolonging oxygen use as long as possible is to stay as activeand> > healthy as possible and that is what I am going to try and do.> > (my grandson) is here with me this summer, and he really> > helps to keep me motivated and I think I need that right now. Also> > the docs were really glad to know that I am in pulmonary rehab and> > that I am going to stay in the Wellness Program when I get done with> > the rehab program. All in all, even though I did get some not so> > good news, I feel like I got some good news, also, so until nextweek> > or whenever I get the results, I am just trying to keep my self in> > exercise and health mode the best I can and keep going.> >> > So that was my Birmingham visit. My parents went with me and we> > really had a nice trip. I don't know what I would do without them.> > They have been my rock through all of this. Thank God for my Mama> > and Daddy!!> >> > I hope you all have a great week and now that I am back I hope to be> > able to keep up with posts better and write more than I have been. I> > do reads all the posts and think of each and every one of you> > everyday. You are my air family and you are my rock, as well. Don't> > know what I would do without you guys, either!! I love you all!!> >> > Have a great day!!> >> > Caro> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Caro, I feel like you sometimes. Angry, but we go on. I try the humor to get me threw and then I vent about other things that make me sick on a page I have. I read and read and learned and learned that that is never ending. I pray you do not get any tornadoes ! No absolutely not. Sorry about the scleroderma, at least you still have a sense of humor about things. It is the best cure, a laugh, a smile, I wish for you to get many of those every day. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Re: Birmingham Hi all, I just had a pacemaker install in my chest because my pulse wasdown 30to 40 and sometime stop altogether it's been 4 days now and feelbetter already. Take care all of you. Guy IPF 03> >> > Hi All,> >> > Sorry I haven't posted in a few days again, but I am back from> > Birmingham. Still don't know anything definite other than the> > diagnosis I already have of UIP. First when I got there, they did> > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > even feel it, but not this time. She had to pry (her words)). Then> > I had to do PFTs, which showed 57% lung function, compared to the68%> > I had in December. Next, I visited with the doc. Actually there> > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > the Assistant Professor). His name was Dr. , very nice guy.> > He took down all my history and said he thinks I may have pulmonary> > hypertension (which would explain the rapid heart rate). He did exam> > and then goes to discuss with Dr. de Andrade, who comes back in and> > again, very nice guy. He explains that it is very rare in a woman> > under the age of 50 to have pulmonary fibrosis and since I have been> > sick for 6 years already, even more rare, not unheard of, just rare.> > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > he thinks there is an underlying disease causing the PF, so I get> > blood work (10 tubes of blood) for various autoimmune diseases. He> > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > which also there is no cure). Dr. did a heart exam and looked> > at the veins in my neck before talking to Dr. de Andrade who decided> > I needed another chest CT (my last one was in February 2008), so I> > had that done (without contrast thank God!!) and also that I needed> > an ultrasound of my heart to check for blood flow to the heart and> > for any blockages to the valves. All in all, he said if I don't hear> > from them in a week, to call them to get the results. Other than> > that, he didn't change any of my medications, except to decrease the> > prednisone even further to 10 mg a day. He said he wants me to get> > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > told him I had gained 20 pounds since being on them starting in> > January, and told him I have moon faces and he agreed. He said they> > want me lean and healthy and I did not need to be on that for sure.> > Any weight gain is out of the question, he said. He told me I have> > to keep moving. He told me to eat lean proteins, fruits, and veggies> > and no snacks. He PROMISED me the weight will come off. He said he> > expects me to lose 10 pounds rather quickly. I sure hope he is> > right, because I am miserable and I told him so, too!! He said there> > are no real medications to treat PF, and I knew that, but he said> > when I come back, I can decide either to go with the Imuran and N-> > Acetyl-Cysteine (NAC), which is all the best they know at this point> > to give patients with PF, or I can try an experimental drug(clinical> > trial), which I don't know what the side effects will be, but I am> > kinda leaning towards doing anyway, because I feel like even if it> > doesn't help me, it may help some other person with this stupid> > disease on down the road and it would be worth it. As for lung> > transplant, I don't yet qualify because my sats are not low enough> > and I am not on oxygen yet. Note that I said "YET." He said the key> > to prolonging oxygen use as long as possible is to stay as activeand> > healthy as possible and that is what I am going to try and do.> > (my grandson) is here with me this summer, and he really> > helps to keep me motivated and I think I need that right now. Also> > the docs were really glad to know that I am in pulmonary rehab and> > that I am going to stay in the Wellness Program when I get done with> > the rehab program. All in all, even though I did get some not so> > good news, I feel like I got some good news, also, so until nextweek> > or whenever I get the results, I am just trying to keep my self in> > exercise and health mode the best I can and keep going.> >> > So that was my Birmingham visit. My parents went with me and we> > really had a nice trip. I don't know what I would do without them.> > They have been my rock through all of this. Thank God for my Mama> > and Daddy!!> >> > I hope you all have a great week and now that I am back I hope to be> > able to keep up with posts better and write more than I have been. I> > do reads all the posts and think of each and every one of you> > everyday. You are my air family and you are my rock, as well. Don't> > know what I would do without you guys, either!! I love you all!!> >> > Have a great day!!> >> > Caro> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Hi Babs, It is nice to hear that someone has had scleroderma for years, though I don't know for certain that is what I have, but he seemed pretty sure. Sometimes, especially in the cold winter months, my fingers will swell really bad, then bust open on the fingertips, and then take weeks and sometimes months to heal and in the process of healing they turn into the thick hard calluses. They get so bad sometimes, I can barely do my job typing all day. Bad thing is when they first start to bust open and bleed, the typing only makes it bigger and I usually have to type with Band-Aids on my fingers which is awful!! I have been doing that for the last 5 years at least every winter. I just laid it off to age and cold weather, but now after reading the "stone" part, I am beginning to wonder if he didn't hit the nail on the head with this diagnosis. Has that ever happened to you with the scleroderma? The doc also told me it attacks your major organs, i.e., lungs, kidneys, heart, liver, and brain. Heck, you can't get a transplant for everything!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: CaroTo: Breathe-Support Date: Friday, June 20, 2008, 9:38 PM Caro, I too have scleroderma but it hasn't really begun to affect myskin yet, though I've felt a little tightening on my face in the pastyear. I've had scleroderma for a great many years now, and they thinkit is the likely cause of my PF as well.I had GERD that was caused by arthritis meds, and it totally burnt outmy reflux so I'm on Prevacid for life. My esophagus strictures and Ihave to go have it stretched every few years so I can swallow. Scleroderma is certainly not a picnic, but I wanted to reassure youthat it doesn't necessarily mean your skin will turn to stoneimmediately. It's affecting our internal organs so may not do muchdamage to the outer appearance. We can pray for that anyway!I'm also 47. :)Hugs!Babs in TexasDX with PF due to lupus/scleroderma/ rheumatoid arthritis in November1999. Also have raynaud's, sjogren's, crohn's and dermatamyositis. > > >> > > Hi All,> > >> > > Sorry I haven't posted in a few days again, but I am back from> > > Birmingham. Still don't know anything definite other than the> > > diagnosis I already have of UIP. First when I got there, they did> > > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > > even feel it, but not this time. She had to pry (her words)). Then> > > I had to do PFTs, which showed 57% lung function, compared to the> 68%> > > I had in December. Next, I visited with the doc. Actually there> > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > > the Assistant Professor). His name was Dr. , very nice guy.> > > He took down all my history and said he thinks I may have pulmonary> > > hypertension (which would explain the rapid heart rate). He did exam> > > and then goes to discuss with Dr. de Andrade, who comes back in and> > > again, very nice guy. He explains that it is very rare in a woman> > > under the age of 50 to have pulmonary fibrosis and since I have been> > > sick for 6 years already, even more rare, not unheard of, just rare.> > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > > he thinks there is an underlying disease causing the PF, so I get> > > blood work (10 tubes of blood) for various autoimmune diseases. He> > > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > > which also there is no cure). Dr.. did a heart exam andlooked> > > at the veins in my neck before talking to Dr. de Andrade who decided> > > I needed another chest CT (my last one was in February 2008), so I> > > had that done (without contrast thank God!!) and also that I needed> > > an ultrasound of my heart to check for blood flow to the heart and> > > for any blockages to the valves. All in all, he said if I don't hear> > > from them in a week, to call them to get the results. Other than> > > that, he didn't change any of my medications, except to decrease the> > > prednisone even further to 10 mg a day. He said he wants me to get> > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > told him I had gained 20 pounds since being on them starting in> > > January, and told him I have moon faces and he agreed.. He said they> > > want me lean and healthy and I did not need to be on that for sure.> > > Any weight gain is out of the question, he said. He told me I have> > > to keep moving. He told me to eat lean proteins, fruits, and veggies> > > and no snacks. He PROMISED me the weight will come off. He said he> > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > right, because I am miserable and I told him so, too!! He said there> > > are no real medications to treat PF, and I knew that, but he said> > > when I come back, I can decide either to go with the Imuran and N-> > > Acetyl-Cysteine (NAC), which is all the best they know at this point> > > to give patients with PF, or I can try an experimental drug> (clinical> > > trial), which I don't know what the side effects will be, but I am> > > kinda leaning towards doing anyway, because I feel like even if it> > > doesn't help me, it may help some other person with this stupid> > > disease on down the road and it would be worth it. As for lung> > > transplant, I don't yet qualify because my sats are not low enough> > > and I am not on oxygen yet. Note that I said "YET." He said the key> > > to prolonging oxygen use as long as possible is to stay as active> and> > > healthy as possible and that is what I am going to try and do.> > > (my grandson) is here with me this summer, and he really> > > helps to keep me motivated and I think I need that right now. Also> > > the docs were really glad to know that I am in pulmonary rehab and> > > that I am going to stay in the Wellness Program when I get done with> > > the rehab program. All in all, even though I did get some not so> > > good news, I feel like I got some good news, also, so until next> week> > > or whenever I get the results, I am just trying to keep my self in> > > exercise and health mode the best I can and keep going.> > >> > > So that was my Birmingham visit. My parents went with me and we> > > really had a nice trip. I don't know what I would do without them.> > > They have been my rock through all of this. Thank God for my Mama> > > and Daddy!!> > >> > > I hope you all have a great week and now that I am back I hope to be> > > able to keep up with posts better and write more than I have been. I> > > do reads all the posts and think of each and every one of you> > > everyday. You are my air family and you are my rock, as well. Don't> > > know what I would do without you guys, either!! I love you all!!> > >> > > Have a great day!!> > >> > > Caro> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Hi Irene, How are you? Actually the fiber diet is going pretty well. I haven't tried the Colace yet, but I was going to give it a couple of weeks and see how it goes. I hope things are going well with you. I am sorry to hear you have drug induced lupus. That is really so unfair!! If you need anything, please let me know. Hugs to you, Irene!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Barbara <babsyphrett@ yahoo.com>Subject: Re: CaroTo: Breathe-Support@ yahoogroups. comDate: Friday, June 20, 2008, 9:38 PM Caro, I too have scleroderma but it hasn't really begun to affect myskin yet, though I've felt a little tightening on my face in the pastyear. I've had scleroderma for a great many years now, and they thinkit is the likely cause of my PF as well.I had GERD that was caused by arthritis meds, and it totally burnt outmy reflux so I'm on Prevacid for life. My esophagus strictures and Ihave to go have it stretched every few years so I can swallow. Scleroderma is certainly not a picnic, but I wanted to reassure youthat it doesn't necessarily mean your skin will turn to stoneimmediately. It's affecting our internal organs so may not do muchdamage to the outer appearance. We can pray for that anyway!I'm also 47. :)Hugs!Babs in TexasDX with PF due to lupus/scleroderma/ rheumatoid arthritis in November1999. Also have raynaud's, sjogren's, crohn's and dermatamyositis. > > >> > > Hi All,> > >> > > Sorry I haven't posted in a few days again, but I am back from> > > Birmingham. Still don't know anything definite other than the> > > diagnosis I already have of UIP. First when I got there, they did> > > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > > even feel it, but not this time. She had to pry (her words)). Then> > > I had to do PFTs, which showed 57% lung function, compared to the> 68%> > > I had in December. Next, I visited with the doc. Actually there> > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > > the Assistant Professor). His name was Dr. , very nice guy.> > > He took down all my history and said he thinks I may have pulmonary> > > hypertension (which would explain the rapid heart rate). He did exam> > > and then goes to discuss with Dr. de Andrade, who comes back in and> > > again, very nice guy. He explains that it is very rare in a woman> > > under the age of 50 to have pulmonary fibrosis and since I have been> > > sick for 6 years already, even more rare, not unheard of, just rare.> > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > > he thinks there is an underlying disease causing the PF, so I get> > > blood work (10 tubes of blood) for various autoimmune diseases. He> > > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > > which also there is no cure). Dr.. did a heart exam andlooked> > > at the veins in my neck before talking to Dr. de Andrade who decided> > > I needed another chest CT (my last one was in February 2008), so I> > > had that done (without contrast thank God!!) and also that I needed> > > an ultrasound of my heart to check for blood flow to the heart and> > > for any blockages to the valves. All in all, he said if I don't hear> > > from them in a week, to call them to get the results. Other than> > > that, he didn't change any of my medications, except to decrease the> > > prednisone even further to 10 mg a day. He said he wants me to get> > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > told him I had gained 20 pounds since being on them starting in> > > January, and told him I have moon faces and he agreed.. He said they> > > want me lean and healthy and I did not need to be on that for sure.> > > Any weight gain is out of the question, he said. He told me I have> > > to keep moving. He told me to eat lean proteins, fruits, and veggies> > > and no snacks. He PROMISED me the weight will come off. He said he> > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > right, because I am miserable and I told him so, too!! He said there> > > are no real medications to treat PF, and I knew that, but he said> > > when I come back, I can decide either to go with the Imuran and N-> > > Acetyl-Cysteine (NAC), which is all the best they know at this point> > > to give patients with PF, or I can try an experimental drug> (clinical> > > trial), which I don't know what the side effects will be, but I am> > > kinda leaning towards doing anyway, because I feel like even if it> > > doesn't help me, it may help some other person with this stupid> > > disease on down the road and it would be worth it. As for lung> > > transplant, I don't yet qualify because my sats are not low enough> > > and I am not on oxygen yet. Note that I said "YET." He said the key> > > to prolonging oxygen use as long as possible is to stay as active> and> > > healthy as possible and that is what I am going to try and do.> > > (my grandson) is here with me this summer, and he really> > > helps to keep me motivated and I think I need that right now. Also> > > the docs were really glad to know that I am in pulmonary rehab and> > > that I am going to stay in the Wellness Program when I get done with> > > the rehab program. All in all, even though I did get some not so> > > good news, I feel like I got some good news, also, so until next> week> > > or whenever I get the results, I am just trying to keep my self in> > > exercise and health mode the best I can and keep going.> > >> > > So that was my Birmingham visit. My parents went with me and we> > > really had a nice trip. I don't know what I would do without them.> > > They have been my rock through all of this. Thank God for my Mama> > > and Daddy!!> > >> > > I hope you all have a great week and now that I am back I hope to be> > > able to keep up with posts better and write more than I have been. I> > > do reads all the posts and think of each and every one of you> > > everyday. You are my air family and you are my rock, as well. Don't> > > know what I would do without you guys, either!! I love you all!!> > >> > > Have a great day!!> > >> > > Caro> > >> >> Instant message from any web browser! Try the new Yahoo! Canada Messenger for the Web BETA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 God Bless !!Hi caro, Glad to hear you are Good despite the posibility of having yet another disease. Keep your spirit up high and may you have many many more gooddays !! With no 02 !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Birmingham Hi all,Well, finally got a call today from Dr. de Andrade from University of Alabama at Birmingham. The results are in. Ultrasound of my heart was okay. GREAT!! Chest CT showed that he thought my disease is not as advanced as he thought from reading the CT report from my December CT; however, he did not have my previous CT from December to compare with, so I am bringing it to my next visit to see how fast I am progressing. Next came the blood work. Here we go. He said the main thing I want to talk to you about is the blood work. Okay, I am ready. Something is wrong, because the doctor himself called me instead of the nurse. I have never had that happen!! Anyhoo --basically my blood test for Sjogren's antibodies came back positive. So, I don't have scleroderma but I probably do have Sjogren's. At least that would explain why I have PF. He said he doesn't want to base a diagnosis on just a blood test, so he wants me to have 2 other tests within the next month or so. One is I have to go to an eye doctor and have a test to see how much tears my tear ducts are producing. The other is I have to go to an oral surgeon and get a biopsy on my salivary glands to see how much saliva I am producing. He said a dry mouth is a symptom of Sjogren's. I always have a dry mouth. Have had one as long as I can remember. When I told my mom and dad what the doc said, my daddy told me they had to take me to the doc when I was a baby because my tear ducts were "stopped up" and whatever they did to my eyes, my tears shot across the room and he cried whatever they did to me. The doc told me that Tonya, the nurse, will call me tomorrow or Monday and give me an appointment to go and get the tests done and have a definite diagnosis. He wants to up my Imuran from 100 mg a day to 150 mg a day to be taken in the mornings instead of twice a day and he wants to continue to decrease my prednisone to 5 mg and within the next few months I will totaly be off of it. I told him I had lost 7 pounds and he said for me to stay healthy, keep exercising, and keep losing weight. The downside is that the I don't qualify for clinical trials if I have Sjogren's. The clinical trials are for IPF and if I have Sjogren's then that is the cause for the UIP which the biopsy showed in January. BUT -- he did say the the Imuran at 150 mg a day should slow down the disease progress significantly so for that I AM ALL FOR IT!! Anything to slow down the use for oxygen or the need for a lung transplant I am all for it!! So, overall, I am really pleased with the report. Even if it means I more than likely have another disease, he said the medication can slow down the progress, so I am happy. Am I wrong to be so excited? Any hope these days is a good thing to me. At least I kinda sorta know what has been going on with me all this time.If anyone else has a chance to go to one of the 13 facilities that deal with this particular disease PF, definitely GO!! You can't go wrong. Especially if you can go to Birmingham, I would totally recommend it! They are the best!! Wow!! To have a doctor call me personally, I feel SO SPECIAL!! Just totally made my day!!Hope you all have a good night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Thanks Mayleen!! I am planning to do just that (for today anyway!!). Am having a much better today so far. I hope all is well with you, too.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: CaroTo: Breathe-Support Date: Thursday, June 26, 2008, 11:59 PM God Bless !!Hi caro, Glad to hear you are Good despite the posibility of having yet another disease. Keep your spirit up high and may you have many many more gooddays !! With no 02 !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Birmingham Hi all,Well, finally got a call today from Dr. de Andrade from University of Alabama at Birmingham. The results are in. Ultrasound of my heart was okay. GREAT!! Chest CT showed that he thought my disease is not as advanced as he thought from reading the CT report from my December CT; however, he did not have my previous CT from December to compare with, so I am bringing it to my next visit to see how fast I am progressing. Next came the blood work. Here we go. He said the main thing I want to talk to you about is the blood work. Okay, I am ready. Something is wrong, because the doctor himself called me instead of the nurse. I have never had that happen!! Anyhoo --basically my blood test for Sjogren's antibodies came back positive. So, I don't have scleroderma but I probably do have Sjogren's. At least that would explain why I have PF. He said he doesn't want to base a diagnosis on just a blood test, so he wants me to have 2 other tests within the next month or so. One is I have to go to an eye doctor and have a test to see how much tears my tear ducts are producing. The other is I have to go to an oral surgeon and get a biopsy on my salivary glands to see how much saliva I am producing. He said a dry mouth is a symptom of Sjogren's. I always have a dry mouth. Have had one as long as I can remember. When I told my mom and dad what the doc said, my daddy told me they had to take me to the doc when I was a baby because my tear ducts were "stopped up" and whatever they did to my eyes, my tears shot across the room and he cried whatever they did to me. The doc told me that Tonya, the nurse, will call me tomorrow or Monday and give me an appointment to go and get the tests done and have a definite diagnosis. He wants to up my Imuran from 100 mg a day to 150 mg a day to be taken in the mornings instead of twice a day and he wants to continue to decrease my prednisone to 5 mg and within the next few months I will totaly be off of it. I told him I had lost 7 pounds and he said for me to stay healthy, keep exercising, and keep losing weight. The downside is that the I don't qualify for clinical trials if I have Sjogren's. The clinical trials are for IPF and if I have Sjogren's then that is the cause for the UIP which the biopsy showed in January. BUT -- he did say the the Imuran at 150 mg a day should slow down the disease progress significantly so for that I AM ALL FOR IT!! Anything to slow down the use for oxygen or the need for a lung transplant I am all for it!! So, overall, I am really pleased with the report. Even if it means I more than likely have another disease, he said the medication can slow down the progress, so I am happy. Am I wrong to be so excited? Any hope these days is a good thing to me. At least I kinda sorta know what has been going on with me all this time.If anyone else has a chance to go to one of the 13 facilities that deal with this particular disease PF, definitely GO!! You can't go wrong. Especially if you can go to Birmingham, I would totally recommend it! They are the best!! Wow!! To have a doctor call me personally, I feel SO SPECIAL!! Just totally made my day!!Hope you all have a good night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 My Pleasure Caro, take good care !! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Birmingham Hi all,Well, finally got a call today from Dr. de Andrade from University of Alabama at Birmingham. The results are in. Ultrasound of my heart was okay. GREAT!! Chest CT showed that he thought my disease is not as advanced as he thought from reading the CT report from my December CT; however, he did not have my previous CT from December to compare with, so I am bringing it to my next visit to see how fast I am progressing. Next came the blood work. Here we go. He said the main thing I want to talk to you about is the blood work. Okay, I am ready. Something is wrong, because the doctor himself called me instead of the nurse. I have never had that happen!! Anyhoo --basically my blood test for Sjogren's antibodies came back positive. So, I don't have scleroderma but I probably do have Sjogren's. At least that would explain why I have PF. He said he doesn't want to base a diagnosis on just a blood test, so he wants me to have 2 other tests within the next month or so. One is I have to go to an eye doctor and have a test to see how much tears my tear ducts are producing. The other is I have to go to an oral surgeon and get a biopsy on my salivary glands to see how much saliva I am producing. He said a dry mouth is a symptom of Sjogren's. I always have a dry mouth. Have had one as long as I can remember. When I told my mom and dad what the doc said, my daddy told me they had to take me to the doc when I was a baby because my tear ducts were "stopped up" and whatever they did to my eyes, my tears shot across the room and he cried whatever they did to me. The doc told me that Tonya, the nurse, will call me tomorrow or Monday and give me an appointment to go and get the tests done and have a definite diagnosis. He wants to up my Imuran from 100 mg a day to 150 mg a day to be taken in the mornings instead of twice a day and he wants to continue to decrease my prednisone to 5 mg and within the next few months I will totaly be off of it. I told him I had lost 7 pounds and he said for me to stay healthy, keep exercising, and keep losing weight. The downside is that the I don't qualify for clinical trials if I have Sjogren's. The clinical trials are for IPF and if I have Sjogren's then that is the cause for the UIP which the biopsy showed in January. BUT -- he did say the the Imuran at 150 mg a day should slow down the disease progress significantly so for that I AM ALL FOR IT!! Anything to slow down the use for oxygen or the need for a lung transplant I am all for it!! So, overall, I am really pleased with the report. Even if it means I more than likely have another disease, he said the medication can slow down the progress, so I am happy. Am I wrong to be so excited? Any hope these days is a good thing to me. At least I kinda sorta know what has been going on with me all this time.If anyone else has a chance to go to one of the 13 facilities that deal with this particular disease PF, definitely GO!! You can't go wrong. Especially if you can go to Birmingham, I would totally recommend it! They are the best!! Wow!! To have a doctor call me personally, I feel SO SPECIAL!! Just totally made my day!!Hope you all have a good night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Caro, I'm so glad that your biopsy is done and you're on the road to recovery. It's a miserable procedure (but you know that already, don't you?). When have they told you to expect the final results? I'm sure you feel you probably already know the results. And in a weird way it would almost be a relief to know what caused the fibrosis wouldn't it? I know that's kind of what I've been going through with my probable diagnosis of "undifferentiated connective tissue disease" or maybe "polymyositis" or maybe "dermatomyositis" or some other bizaare thing. LOL Anyway, I'm glad it's over and hope you're feeling like your self soon! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Thanks MB!! Yeah, I guess in a strange kind of way it would be nice to know what caused the fibrosis, even though that is not going to change the prognosis. It would still be nice to know. At least I would know it wasn't something I did!! If that makes any sense!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: CaroTo: Breathe-Support Date: Sunday, July 6, 2008, 11:13 AM Caro, I'm so glad that your biopsy is done and you're on the road to recovery. It's a miserable procedure (but you know that already, don't you?). When have they told you to expect the final results? I'm sure you feel you probably already know the results. And in a weird way it would almost be a relief to know what caused the fibrosis wouldn't it? I know that's kind of what I've been going through with my probable diagnosis of "undifferentiated connective tissue disease" or maybe "polymyositis" or maybe "dermatomyositis" or some other bizaare thing. LOL Anyway, I'm glad it's over and hope you're feeling like your self soon! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Steve, I totally understand what you're getting at. I just have this drive to understand what's happening to me and why if possible. I've always felt that information is power and that even if a piece of information isn't useful at this moment it might become useful in the future. And if it's not useful for me, then maybe it will be useful for someone else whether it's a random stranger or my own son. If I leave this life sooner than I want to, I want to leave knowing I have as complete a picture of my illness as possible if nothing else for the sake of those who will come after me. It's on this very issue that I realize how different I am from my own mother. Now don't get me wrong, I love my mother. Love her more than I can say. About 6 months after I was diagnosed with my lung disease, my Mom started having numbness and weakness in her feet and lower legs. She was suddenly very unsteady on her feet. She reluctantly went to the doctor, they did some bloodwork, did an EMG (electromyogram) to test the electrical impulses of her muscles etc. The bloodwork was inconclusive but the EMG was markedly abnormal. They tentatively diagnosed her with polymyositis but they wanted to then do a muscle biopsy to confirm. She refused. She doesn't want to know. After Dr. on started talking to me about the possibilty that I had a connective tissue disease (such as polymyositis). I tentatively approached my Mom again about having a muscle biopsy to confirm her diagnosis as it could help shed light on my condition and be important information for the rest of my siblings not to mention her 12 grandchildren. I felt she should probably also have at least a 6 minute walk if not a full pft to assess the condition of her lungs for her own sake. She flat out refuses to even consider it. She just doesn't want to know. In watching her it reminds me how powerful denial is...."if I don't think about it, don't know about it, it's not happening." So very very frustrating! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive CaroTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 11:13 AM Caro, I'm so glad that your biopsy is done and you're on the road to recovery. It's a miserable procedure (but you know that already, don't you?). When have they told you to expect the final results? I'm sure you feel you probably already know the results. And in a weird way it would almost be a relief to know what caused the fibrosis wouldn't it? I know that's kind of what I've been going through with my probable diagnosis of "undifferentiated connective tissue disease" or maybe "polymyositis" or maybe "dermatomyositis" or some other bizaare thing. LOL Anyway, I'm glad it's over and hope you're feeling like your self soon! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
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