Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 questions I just found out in June I have Chiari. I will see Dr. Oro in Oct. My questions are: Does anyone have bladder problems? My left wrisit hurts..gets numb, hurts, weak and at times freezes up. I am right handed so I never understood this. I am a pet groomer and I thought it was because of my job that my wrists hurt. But my left hurts more and I don't use it as much as my right. Is this a Chiari thing? Last question (tonight)I have noticed in the last few weeks that my eye sight is getting bad fuzzy and then is fine. It comes and goes. I don't feel great presure but when I blink it hurts...I know that doesn't make sence. Was wondering this is Chiari or do I need glasses. Thank You! Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 questions I just found out in June I have Chiari. I will see Dr. Oro in Oct. My questions are: Does anyone have bladder problems? My left wrisit hurts..gets numb, hurts, weak and at times freezes up. I am right handed so I never understood this. I am a pet groomer and I thought it was because of my job that my wrists hurt. But my left hurts more and I don't use it as much as my right. Is this a Chiari thing? Last question (tonight)I have noticed in the last few weeks that my eye sight is getting bad fuzzy and then is fine. It comes and goes. I don't feel great presure but when I blink it hurts...I know that doesn't make sence. Was wondering this is Chiari or do I need glasses. Thank You! Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 That is the same with me sometimes I have to every ten minutes other times its normal sometimes I cough and go a little and sometimes it don't matter.. I don't understand it.. Does any one have shakey legs at night just before I go to sleep they deside they need to shake and keep me awake. that is really annoying Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 That is the same with me sometimes I have to every ten minutes other times its normal sometimes I cough and go a little and sometimes it don't matter.. I don't understand it.. Does any one have shakey legs at night just before I go to sleep they deside they need to shake and keep me awake. that is really annoying Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Thanks Ms , I see the surgeon on Fri. Not sure what his plan is. I feel great all things considered. I still have the drain too besides the G-tube. So I do the tube feeds, plus throw some added protein to it. Helping me heal, plus I'm hungry now, so that helps a little. I hope I get to start eating soon. Deb Sellman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Thanks Ms , I see the surgeon on Fri. Not sure what his plan is. I feel great all things considered. I still have the drain too besides the G-tube. So I do the tube feeds, plus throw some added protein to it. Helping me heal, plus I'm hungry now, so that helps a little. I hope I get to start eating soon. Deb Sellman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Thanks Ms , I see the surgeon on Fri. Not sure what his plan is. I feel great all things considered. I still have the drain too besides the G-tube. So I do the tube feeds, plus throw some added protein to it. Helping me heal, plus I'm hungry now, so that helps a little. I hope I get to start eating soon. Deb Sellman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Debbi, You want to eat slowly to give your pouch the satiety feeling. It takes almost 20 mins for that to kick in. Nice slow bites, no water with meals. 30 mins before and 30 mins after. Even tho I just started to eat after 11 weeks. I stop before I get that full feeling. I took someone's recommendation to eat with a baby spoon. I just need a plate warmer cos my food gets cold before I'm half way done. LOL Are you doing protein shakes. increase those to over 60 grams and see what that does. I think some of the hints folks give is to use less water to mix it in. I know others do it before they eat 30 mins. before......... Deb in cleveland. Where in Ohio do you live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Debbi, You want to eat slowly to give your pouch the satiety feeling. It takes almost 20 mins for that to kick in. Nice slow bites, no water with meals. 30 mins before and 30 mins after. Even tho I just started to eat after 11 weeks. I stop before I get that full feeling. I took someone's recommendation to eat with a baby spoon. I just need a plate warmer cos my food gets cold before I'm half way done. LOL Are you doing protein shakes. increase those to over 60 grams and see what that does. I think some of the hints folks give is to use less water to mix it in. I know others do it before they eat 30 mins. before......... Deb in cleveland. Where in Ohio do you live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Debbi, You want to eat slowly to give your pouch the satiety feeling. It takes almost 20 mins for that to kick in. Nice slow bites, no water with meals. 30 mins before and 30 mins after. Even tho I just started to eat after 11 weeks. I stop before I get that full feeling. I took someone's recommendation to eat with a baby spoon. I just need a plate warmer cos my food gets cold before I'm half way done. LOL Are you doing protein shakes. increase those to over 60 grams and see what that does. I think some of the hints folks give is to use less water to mix it in. I know others do it before they eat 30 mins. before......... Deb in cleveland. Where in Ohio do you live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 thanks robert i never knew afib was around until i had my defib checked by medtronics,they do it every 3 months and it concerned the tech.dr.in the office wasnt concerned put me on coumidin and another cardio wants to to stop my heart and restart it.all i want is some energy to walk from 1 room to another.i am raising 2 of my grand children 12 and 11 it isnt easy when all you want to do is sleep.thanks for your input. robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Robyn, I have a defibrillator too. What type of medication are you taking? I recently changed medication from Sotalol to Tikosyn. The Sotalol was making me VERY tired all of the time. I still have AF on the Tikosyn, but I am not nearly as tired. You may want to check with your doctor to find out if the medication you are on is adding to your fatigue. Warning - the Tikosyn is very expensive. My insurance covers it, but you should check with your insurance before changing medication. PS - Raising two pre-teens sounds like an awful lot of stress. I am only 36 years old and I don't think I could take that much stress on top of my AF. > > thanks robert > i never knew afib was around until i had my defib checked by medtronics,they > do it every 3 months and it concerned the tech.dr.in the office wasnt > concerned put me on coumidin and another cardio wants to to stop my heart and > restart it.all i want is some energy to walk from 1 room to another.i am raising 2 > of my grand children 12 and 11 it isnt easy when all you want to do is > sleep.thanks for your input. > robyn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Robyn, I have a defibrillator too. What type of medication are you taking? I recently changed medication from Sotalol to Tikosyn. The Sotalol was making me VERY tired all of the time. I still have AF on the Tikosyn, but I am not nearly as tired. You may want to check with your doctor to find out if the medication you are on is adding to your fatigue. Warning - the Tikosyn is very expensive. My insurance covers it, but you should check with your insurance before changing medication. PS - Raising two pre-teens sounds like an awful lot of stress. I am only 36 years old and I don't think I could take that much stress on top of my AF. > > thanks robert > i never knew afib was around until i had my defib checked by medtronics,they > do it every 3 months and it concerned the tech.dr.in the office wasnt > concerned put me on coumidin and another cardio wants to to stop my heart and > restart it.all i want is some energy to walk from 1 room to another.i am raising 2 > of my grand children 12 and 11 it isnt easy when all you want to do is > sleep.thanks for your input. > robyn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others " feel " their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Hi Diane, Welcome to the group. As we always say, we are glad to have you but sad you had to find us. You have come to the right place though, to get a world of support and information regarding this awful disease we all suffer from. I can relate to all your feelings. It is hard to keep a positive attitude with this disease process and everyone of us on this group has fallen short of that at one time or another, but with the support and love here, we always bounce back. As far as how long anyone has, the times are all different. We don't come with an expiration date (I think that is one of the best things I have learned from this group). No one can say when we will die and when we won't except for God and he is the only one who knows. I don't have a husband for support and live alone, although I do have the support of my parents and children, even though they don't totally understand what I feel all the time. That is why I come here because every one of us here knows exactly how you feel and we can all relate to your feelings of depression, sadness, frustration, and even hate for this disease. You hang in there, though, and just take it one day at a time. Even one hour at a time if that is what you need to get through the day. You will have good days and bad days, but I can guarantee this -- As long as you stay with this group, you will have all the love, support, and friendship you could possibly want or need to get through this. If I can do anything just give a shout!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi Subject: questionsTo: Breathe-Support Date: Friday, October 24, 2008, 9:54 AM Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Hi Diane, Welcome to the group. As we always say, we are glad to have you but sad you had to find us. You have come to the right place though, to get a world of support and information regarding this awful disease we all suffer from. I can relate to all your feelings. It is hard to keep a positive attitude with this disease process and everyone of us on this group has fallen short of that at one time or another, but with the support and love here, we always bounce back. As far as how long anyone has, the times are all different. We don't come with an expiration date (I think that is one of the best things I have learned from this group). No one can say when we will die and when we won't except for God and he is the only one who knows. I don't have a husband for support and live alone, although I do have the support of my parents and children, even though they don't totally understand what I feel all the time. That is why I come here because every one of us here knows exactly how you feel and we can all relate to your feelings of depression, sadness, frustration, and even hate for this disease. You hang in there, though, and just take it one day at a time. Even one hour at a time if that is what you need to get through the day. You will have good days and bad days, but I can guarantee this -- As long as you stay with this group, you will have all the love, support, and friendship you could possibly want or need to get through this. If I can do anything just give a shout!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi Subject: questionsTo: Breathe-Support Date: Friday, October 24, 2008, 9:54 AM Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Diane, Welcome to Breathe-Support! As we always say around here, we're sorry that you had reason to look for the group but since you did, we're glad you found us. I think that pretty much all of us can indentify with your feelings and concerns. I will try to give you my take on your questions and I'm sure that other members will chime in with theirs. I see by your email address that you are somewhere in NY. Have you been to see a doctor at one of the university medical centers. Before I moved to North Carolina I was a patient of Dr. Simonelli at Columbia Presbyterian in NYC. It is very worthwhile to be evaluated at a facility like this, I learned a tremendous amount about my disease and my condition. As far as the natural progression of this disease, the honest answer is, it varies. What type of pulmonary fibrosis do you have? Do you know? You hear estimates of 3-5 years for IPF and 5-15 years for NSIP and so on and so on. It really depends on the type of fibrosis and many many other factors. We just lost a member (Joyce Dalton) who survived over 12 years with fibrosis and multiple other health problems. When you ask if we "feel" hardness in our lungs....well here's what I feel. I feel resistance when I inhale deeply. For example I can't yawn anymore and sneezing is difficult and tends to make me cough. Both of these things require that I inhale deeply and that is difficult because my lungs are losing elasticity. That's what I feel. Is that what you're talking about? I don't feel any pain in my lungs, others have said they have though. Doctors say there are no nerve cells in our lungs so that makes the sensation of pain unlikely. But we can definitely have pain in the surrounding tissue that is under strain so that can feel like lung pain. I'm so sorry you don't have alot of family support. Many of us go through this. It's difficult to feel isolated from ones family but that's what this diagnosis can do. I consider myself fortunate and blessed with my family but that doesn't mean they 'get it'. Because they most assuredly do not. They love me but have not a clue what it's like to live in a body with this disease. That's why this group of people have become so important to me. We are a whole bunch of people that understand in a way that our families just can't. Feel free to utilize the group in whatever way makes you most comfortable. Post to the group, go through the archives (there's a ton of information in there) and consider yourself at home. We're glad you're here! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 To: Breathe-Support Sent: Friday, October 24, 2008 10:54:06 AMSubject: questions Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Diane, Welcome to Breathe-Support! As we always say around here, we're sorry that you had reason to look for the group but since you did, we're glad you found us. I think that pretty much all of us can indentify with your feelings and concerns. I will try to give you my take on your questions and I'm sure that other members will chime in with theirs. I see by your email address that you are somewhere in NY. Have you been to see a doctor at one of the university medical centers. Before I moved to North Carolina I was a patient of Dr. Simonelli at Columbia Presbyterian in NYC. It is very worthwhile to be evaluated at a facility like this, I learned a tremendous amount about my disease and my condition. As far as the natural progression of this disease, the honest answer is, it varies. What type of pulmonary fibrosis do you have? Do you know? You hear estimates of 3-5 years for IPF and 5-15 years for NSIP and so on and so on. It really depends on the type of fibrosis and many many other factors. We just lost a member (Joyce Dalton) who survived over 12 years with fibrosis and multiple other health problems. When you ask if we "feel" hardness in our lungs....well here's what I feel. I feel resistance when I inhale deeply. For example I can't yawn anymore and sneezing is difficult and tends to make me cough. Both of these things require that I inhale deeply and that is difficult because my lungs are losing elasticity. That's what I feel. Is that what you're talking about? I don't feel any pain in my lungs, others have said they have though. Doctors say there are no nerve cells in our lungs so that makes the sensation of pain unlikely. But we can definitely have pain in the surrounding tissue that is under strain so that can feel like lung pain. I'm so sorry you don't have alot of family support. Many of us go through this. It's difficult to feel isolated from ones family but that's what this diagnosis can do. I consider myself fortunate and blessed with my family but that doesn't mean they 'get it'. Because they most assuredly do not. They love me but have not a clue what it's like to live in a body with this disease. That's why this group of people have become so important to me. We are a whole bunch of people that understand in a way that our families just can't. Feel free to utilize the group in whatever way makes you most comfortable. Post to the group, go through the archives (there's a ton of information in there) and consider yourself at home. We're glad you're here! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 To: Breathe-Support Sent: Friday, October 24, 2008 10:54:06 AMSubject: questions Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 > > Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others " feel " their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane > Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower! I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know. Mark pf 11/07 Raleigh, NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 I also have PM and my PF was diagnoses by VATs Aug of 2000 so you can still last a long time P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: questionsTo: Breathe-Support Date: Friday, October 24, 2008, 9:54 AM Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 I also have PM and my PF was diagnoses by VATs Aug of 2000 so you can still last a long time P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: questionsTo: Breathe-Support Date: Friday, October 24, 2008, 9:54 AM Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Thank you for the information, Beth. I've been wondering if things are getting worse, or if it's just that I'm more aware of these things than I was before I knew I had IPF. I am not presently on oxygen, and I've decided not to do the steriods at this time. I have another pulmonary function test scheduled in January, and I'll see what (if anything) has changed by then; I can always opt for the steriods then. I do not know what you mean by "stats of 95". Please explain, if you don't mind. Beth wrote: Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support Sent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
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