Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Hi Dee: I am glad you joined the group but again sorry you have a need to. Each day is a struggle for each of us but this group helps us to not feel alone in this struggle. While we always have our heavenly Father to call on, it is nice to have humans to communicate with as well. I am 57, have Fibromyalgia, Chronic Pain Syndrome, Degenerative Joint Disease, Degenerative Disk Disease, DIP, Osteoarthritis, Rheumatoid Arthritis and two knees and my back that were injured in falls. Just to name a few of my health problems. I have been married almost 8 years (second marriage, first marriage was 30 years to an alcoholic). I have been disabled since 2002 after working as a nurse for over 20 years. I miss nursing so much and often feel very useless and after being a caregiver most of my life, it is hard to be on the receiving end of being taken care of. But, we all have to make adjustments in life and this is just another one of many I have had to face. Together we will get through this. Carolyndee-andy wrote: Hi Beth, Donna, Lynn A., Carolyn, Peggy, Gretel from Dee Thanks for the advise, I will follow it. Here's a little about me. I am 64 yrs old, married for 42 yrs. live in a 55 + retirement community in Southern Calif., native CA. I have breathed hard as far back as I can remember, been diagnosed with RA, fibromaylaga, pulmonary fibrosis (July of 2006), enlarged right side of heart, mitral valve leakage, lupus, bronchitis, have had kidney stones (surgery to remove them), gall bladder, ulcers, divaticolotis,(sp.), diabetic thanks to the steroids, been on Prednisone 4 yrs. straight. hospitalized twice last year for pneumonia. Other than that I'm in pretty good health. Yeah right. Got to keep a positive attitude otherwise this stuff will get you down and I'm not ready for that. Have trouble with leg and feet swelling, tired all the time, no energy, hands shake and seem to be getting worse, pain everywhere and anywhere but whenever anyone ask how am I doing, I say "great" or "good" and put a big smile on my face. I feel they really don't want to hear about my illnesses and it seems to help me to say that I'm ok. I find this group very informative and helpful. I get scared at times just like you guys do and prayer helps me through it. Nighttime is the worse for me. I recently had to go to 5 L and that was a mild set back but I'm over it now and ready to face a new day. My dr. is at UCLA and I really like him, my dr. from Kaiser sent me over there after telling me "there is nothing more I can do for you". That felt like someone dropped a bomb on me. The UCLA dr. is trying different autoimmune drugs to stop the progression of this disease and hopefully will be able to wean me off the steroids. I am having a problem with my liver from the new drugs and hopefully will be able to continue to take them and the liver will calm down. Because of all the positive comments from this wonderful group on Pulm. rehab I am going to start that next month. I too get very tired, got a housekeeper and now she is coming twice a month since it just tears me up to doing anything physical. Walking is the worse and carrying something just doubles it. My husband is my caretaker and he usually drops me off at the door whenever we go anywhere. Well, that's me in a nutshell. We will be communicating lots more. Take care and God bless each and everyone of you. P.S. I also have been wondering about the guy that was contemplating suicide. We never did hear back from him. Sure hope he had a change of heart. Bless everyone, Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 HI Dee,Where in Ca do you live? My dad also belongs to Kaiser and we were trying to get him seen at UCLA? Thanks for sharing your story with us. Cyndi (DAD PF12/05)dee-andy wrote: Hi Beth, Donna, Lynn A., Carolyn, Peggy, Gretel from Dee Thanks for the advise, I will follow it. Here's a little about me. I am 64 yrs old, married for 42 yrs. live in a 55 + retirement community in Southern Calif., native CA. I have breathed hard as far back as I can remember, been diagnosed with RA, fibromaylaga, pulmonary fibrosis (July of 2006), enlarged right side of heart, mitral valve leakage, lupus, bronchitis, have had kidney stones (surgery to remove them), gall bladder, ulcers, divaticolotis,(sp.), diabetic thanks to the steroids, been on Prednisone 4 yrs. straight. hospitalized twice last year for pneumonia. Other than that I'm in pretty good health. Yeah right. Got to keep a positive attitude otherwise this stuff will get you down and I'm not ready for that. Have trouble with leg and feet swelling, tired all the time, no energy, hands shake and seem to be getting worse, pain everywhere and anywhere but whenever anyone ask how am I doing, I say "great" or "good" and put a big smile on my face. I feel they really don't want to hear about my illnesses and it seems to help me to say that I'm ok. I find this group very informative and helpful. I get scared at times just like you guys do and prayer helps me through it. Nighttime is the worse for me. I recently had to go to 5 L and that was a mild set back but I'm over it now and ready to face a new day. My dr. is at UCLA and I really like him, my dr. from Kaiser sent me over there after telling me "there is nothing more I can do for you". That felt like someone dropped a bomb on me. The UCLA dr. is trying different autoimmune drugs to stop the progression of this disease and hopefully will be able to wean me off the steroids. I am having a problem with my liver from the new drugs and hopefully will be able to continue to take them and the liver will calm down. Because of all the positive comments from this wonderful group on Pulm. rehab I am going to start that next month. I too get very tired, got a housekeeper and now she is coming twice a month since it just tears me up to doing anything physical. Walking is the worse and carrying something just doubles it. My husband is my caretaker and he usually drops me off at the door whenever we go anywhere. Well, that's me in a nutshell. We will be communicating lots more. Take care and God bless each and everyone of you. P.S. I also have been wondering about the guy that was contemplating suicide. We never did hear back from him. Sure hope he had a change of heart. Bless everyone, Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Hi Cyndi, I live in Banning it's near Palm Springs. Have your Dad speak with the pulm dr. and insist on going over to UCLA. Hope it works. Dee Re: Profile HI Dee,Where in Ca do you live? My dad also belongs to Kaiser and we were trying to get him seen at UCLA? Thanks for sharing your story with us. Cyndi (DAD PF12/05)dee-andy <dee-andydc (DOT) rr.com> wrote: Hi Beth, Donna, Lynn A., Carolyn, Peggy, Gretel from Dee Thanks for the advise, I will follow it. Here's a little about me. I am 64 yrs old, married for 42 yrs. live in a 55 + retirement community in Southern Calif., native CA. I have breathed hard as far back as I can remember, been diagnosed with RA, fibromaylaga, pu smile on my face. I feel they really don't want to hear about my illnesses and it seems to help me to say that I'm ok. I find this group very informative and helpful. I get scared at times just like you guys do and prayer helps me through it. Nighttime is the worse for me. I recently had to go to 5 L and that was a mild set back but I'm over it now and ready to face a new day. My dr. is at UCLA and I really like him, my dr. from Kaiser sent me over there after telling me "there is nothing more I can do for you". That felt like someone dropped a bomb on me. The UCLA dr. is trying different autoimmune drugs to stop the progression of this disease and hopefully will be able to wean me off the steroids. I am having a problem with my liver from the new drugs and hopefully will be able to continue to take them and the liver will calm down. Because of all the positive comments from this wonderful group on Pulm. rehab I am going to start that next month. I too get very tired, got a housekeeper and now she is coming twice a month since it just tears me up to doing anything physical. Walking is the worse and carrying something just doubles it. My husband is my caretaker and he usually drops me off at the door whenever we go anywhere. Well, that's me in a nutshell. We will be communicating lots more. Take care and God bless each and everyone of you. P.S. I also have been wondering about the guy that was contemplating suicide. We never did hear back from him. Sure hope he had a change of heart. Bless everyone, Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 HI Dee,We live close to each other. My parents live in Rancho Cucamonga and my dad goes to a pulmonologist at UCLA. She has been very hard to convince to do anything at UCLA. We'll keep trying.Thanks,Cyndi (DAD PF 12/05)dee-andy wrote: Hi Cyndi, I live in Banning it's near Palm Springs. Have your Dad speak with the pulm dr. and insist on going over to UCLA. Hope it works. Dee Re: Profile HI Dee,Where in Ca do you live? My dad also belongs to Kaiser and we were trying to get him seen at UCLA? Thanks for sharing your story with us. Cyndi (DAD PF12/05)dee-andy <dee-andydc (DOT) rr.com> wrote: Hi Beth, Donna, Lynn A., Carolyn, Peggy, Gretel from Dee Thanks for the advise, I will follow it. Here's a little about me. I am 64 yrs old, married for 42 yrs. live in a 55 + retirement community in Southern Calif., native CA. I have breathed hard as far back as I can remember, been diagnosed with RA, fibromaylaga, pu smile on my face. I feel they really don't want to hear about my illnesses and it seems to help me to say that I'm ok. I find this group very informative and helpful. I get scared at times just like you guys do and prayer helps me through it. Nighttime is the worse for me. I recently had to go to 5 L and that was a mild set back but I'm over it now and ready to face a new day. My dr. is at UCLA and I really like him, my dr. from Kaiser sent me over there after telling me "there is nothing more I can do for you". That felt like someone dropped a bomb on me. The UCLA dr. is trying different autoimmune drugs to stop the progression of this disease and hopefully will be able to wean me off the steroids. I am having a problem with my liver from the new drugs and hopefully will be able to continue to take them and the liver will calm down. Because of all the positive comments from this wonderful group on Pulm. rehab I am going to start that next month. I too get very tired, got a housekeeper and now she is coming twice a month since it just tears me up to doing anything physical. Walking is the worse and carrying something just doubles it. My husband is my caretaker and he usually drops me off at the door whenever we go anywhere. Well, that's me in a nutshell. We will be communicating lots more. Take care and God bless each and everyone of you. P.S. I also have been wondering about the guy that was contemplating suicide. We never did hear back from him. Sure hope he had a change of heart. Bless everyone, Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Hi everyone I would love to talk to some more People with this horrible disease and those funny looking nails. I am a 53 year old female living in the good old sticks of Alabama. I was diaganosed with this pulmonary fibrosis a year ago. I smoked and loved every minute of it, from Territons to Marboros. I started in my teens. Always told everyone that got on me for it that we all have to go someday. Well I guess the someday is closer than I think. lol I have been married to the same guy for 35 years.[on bless me] He is not one that shows much sympathy. He started out showing some but now I am ready to kill him.[anyone know a good method? lol] He says I am faking. We have 2 sons and 2 precious grandkids.>> To help get the ball rolling, how about if we tell a little bit > about ourselves so we can get to know each other and what brought us > to this place. You can copy and paste into a new document and > answer the questions.> > Name?> > Age? (if you don't mind sharing)> > How has pf or ipf touched your life?> > If a patient, when were you diagnosed?> > Did you go through pulmonary rehab?> > Do you participate in a pf support group?> > Smoker?> > Grew up in a smoke filled environment?> > husband/wife?> > Children?> > Pets?> > Favorite Movie?> > Favorite Food?> > Favorite Holiday?> > Favorite Book?> > Favorite Author?> > What do you like to do in your spare time?> Quote Link to comment Share on other sites More sharing options...
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