Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Caro, I hated wearing it. To me it was a sign of weakness. It told everyone that I were sick!! That is nobody's business, I thought. That is like telling your personal business to strangers, I thought. Well, it didn't take me too long to get over myself, only 8 - 10 years. lol The only thing I really noticed is I got more smiles from strangers. That was about it. I've gotten questions through the years about smoking (I didn't) but the truth is it really isn't all about me and as soon as I'm out of sight they have forgotten me. There is a saying from 12 steps something about it being none of my business what others think about me. So wear it proudly and breathe deeply. Hugs, Kathie WA NSIP '96, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Caro, Hi! I just want you to know that Don struggled with that big time. He still does a little. However, he didn't want to stay at home either. So he knew he felt better on the O2, so I guess he bit the bullet. One day we were in Lowe's and he saw a fairly young couple and he was on O2. He was carrying around a little thing and Don just hated the big BOA and he stopped him and asked him about it. After that, he didn't struggle as much. He saw that he wasn't alone. You'll be able to do when it is time. Hang in there. Surprised? Me giving advice. You can tell me I had better heed my own advice. LOL k IllinoisSher Bauman wrote: Caro.....Oh my goodness yes I was self-conscious about the O2...still feel a 'little' awkward but not much. O2 helps so much that I don't care anymore. You will wonder about people 'looking at you' for awhile but it passes. Honest it does. When you get ready for your 'coming out party' let me know....there are different bags you can use for the O2 cylinder and you'll go through the O2 on your shoulder and carrying a purse and pretty soon it's too much so you will start putting 'purse-stuff' in the O2 bag.......anyway, let me know. LLBean carries a great back bag that works for the cylinders. I named it the BOA (bag of air) bag. Lots of us have one. What is the real reason you do not want anyone to know you are ill, do you know? Think about it. Babble all you want, you might even come up with some answers! lol Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Caro/MB/WaltTo: Breathe-Support@ yahoogroups. comDate: Thursday, May 1, 2008, 12:30 PM Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Caro, Admitting sickness is not admitting weakness. At times, for me, it feels that way. The loss of health can be very depressing, especially for the strong. I thought I would die of embarrassment, having to go out with 02, but now it is just part of me. I hated the thought of a walker or a wheelchair, now I am so thankful for the things that keep me mobile. Not getting to drive has been the worst. That is a great loss of independance. I pray that your spirit stays strong and that you will cope with the changes as they come. If you need help for the emotional upheaval, don't hesitate to seek professional help. We are all here for you, too. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Thank you so much Joyce. That means so much especially coming from you when you have so much on your plate already. I feel like a wuss compared to what you have been through to even complain at all. You are such a strong lady. I may need to consider psychological help before this thing is over. I did it a few years ago when my youngest son was having a drug problem and it really helped a lot. Thank God he overcame it and is now holding down a steady job and actually has his own place. That was a really tough time, but this is totally different. This is something I have no control over and it is all me. I know I can hang in there, but just don't know how I will right now. I am probably going to be buggin the crap outa everybody!! I love you all so much.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Caro/MB/WaltTo: Breathe-Support Date: Sunday, May 4, 2008, 4:51 AM Caro, Admitting sickness is not admitting weakness. At times, for me, it feels that way. The loss of health can be very depressing, especially for the strong. I thought I would die of embarrassment, having to go out with 02, but now it is just part of me. I hated the thought of a walker or a wheelchair, now I am so thankful for the things that keep me mobile. Not getting to drive has been the worst. That is a great loss of independance. I pray that your spirit stays strong and that you will cope with the changes as they come. If you need help for the emotional upheaval, don't hesitate to seek professional help. We are all here for you, too. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 I don't really know the real reason I don't want people to know. I guess I don't want them looking at me like they feel sorry for me or something. You know, like you poor thing, you are gonna die. I guess I shouldn't feel that way. It would probably be more helpful if I had more support around here. There are really nice people who live here in the apartments and I know they would understand to a point, but I get so much "I understand but I don't" from my family members, I just didn't want to deal with it from everyone else when they are not around. Does this make any sense at all? Not sure if it even makes sense to me.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Sher Bauman <bofuswbcable (DOT) net>Subject: Caro/MB/WaltTo: Breathe-Support@ yahoogroups. comDate: Thursday, May 1, 2008, 12:30 PM Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Thanks Kathie. I needed that. I absolutely love you all.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Caro/MB/WaltTo: Breathe-Support Date: Saturday, May 3, 2008, 8:55 PM Caro,I hated wearing it. To me it was a sign of weakness. It told everyone that I were sick!! That is nobody's business, I thought. That is like telling your personal business to strangers, I thought. Well, it didn't take me too long to get over myself, only 8 - 10 years. lol The only thing I really noticed is I got more smiles from strangers. That was about it. I've gotten questions through the years about smoking (I didn't) but the truth is it really isn't all about me and as soon as I'm out of sight they have forgotten me. There is a saying from 12 steps something about it being none of my business what others think about me. So wear it proudly and breathe deeply.Hugs,Kathie WANSIP '96, etc. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Thanks MB. That is really encouraging. I know it is just going to be another speed bump I am going to cross with this disease and I am really anxious about dealing with it, but I will make it (don't really have a choice now do I? LOL!!) somehow and I know it will be from the help of this group that I get through it. I will let you all know when my "coming out party" arrives and we can all celebrate!! But, I am still scared to death!! LOL!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Sher Bauman <bofuswbcable (DOT) net>Subject: Caro/MB/WaltTo: Breathe-Support@ yahoogroups. comDate: Thursday, May 1, 2008, 12:30 PM Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Caro, Just bug us all you want. For me this place has been better than therapy. At least here people understand. I mean really understand. Those who have not progressed still live with the dread. I never think that the complaints of those less sick than I am are unimportant. When I was just diagnosed, it was serious business. When I was in active disease mode, it was serious business, when I was stable it was serious business.........it is all serious. Your information that you relay to us during your journey will help someone. It is amazing that most of us learn more here than anywhere else. And, we learn from complainers just like you and me! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Caro...I'm usually answering posts a day late 'cause I sign off so early.... I think we each have 'something' that is harder to deal w/than other things. As I said, I had a hard time with this 'public' thing too and know there are others. Your feelings aren't up for debate and no one else has to agree, by gum! So there. lol. For me, living in an apt. complex, I see my neighbors regularly. I just told everybody what I'm dealing with and at least I feel more relaxed. It's stressful avoiding and/or not being open w/people I see every day.....may not be so with you Caro. I smile at people who 'look' and I talk to the little kids who 'stare'....works for me, may not be so with you. When you're ready you'll come out of the closet, so to speak. lol. I really do find people more understanding if they are given a chance. I'm sorry your family members have disappointed you. You say you are "scared to death"...if you can identify of what you are scared then you can work on it. If you want to. Do you think what you're really dealing with is a little denial??? I relate to that. Even at my age, I stayed in denial for a long while. How old are you Caro? Sometimes age plays a part. Now I know you didn't ask for my advice. You lucky girl....you get it anyway...that's what Mamas do. lol. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Caro/MB/WaltTo: Breathe-Support@ yahoogroups. comDate: Thursday, May 1, 2008, 12:30 PM Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Well, I am 47. Still have half a life to live I thought. Maybe I am in denial. You might have something there, Mama Sher!! I wouldn't really say I am disappointed in my family, as such, just wish they understood a little more. Guess you can't really understand unless you have to deal with it everyday. You might be right about the neighbors, too. They really are nice people. You couldn't ask for better neighbors. We don't have any children living here that I know of, at least I never see any, except grandkids to visit. I guess once I get on O2, they will know anyway, right? Can't hide it then for sure!! LOL!! Yes, I am lucky to get advice and I appreciate you very much!!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Sher Bauman <bofuswbcable (DOT) net>Subject: Caro/MB/WaltTo: Breathe-Support@ yahoogroups. comDate: Thursday, May 1, 2008, 12:30 PM Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Thanks Joyce. I hope you are right cuz if I could help just 1 person deal with this crappy disease any better I would be glad. I am hoping tomorrow they will call me for Pulmonary Rehab appointment. At least I can get that under way. I just noticed something today while carrying a bag of canned goods up the stairs. I find myself holding my breath when I have to have a lot of exertion like climbing the stairs. Didn't even notice it until today that I was even doing it. Don't even know why I do it. Maybe subconsciously I think it will get me to the top!! LOL!! Go figure!! I am crazy!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Caro/MB/WaltTo: Breathe-Support Date: Sunday, May 4, 2008, 2:30 PM Caro, Just bug us all you want. For me this place has been better than therapy. At least here people understand. I mean really understand. Those who have not progressed still live with the dread. I never think that the complaints of those less sick than I am are unimportant. When I was just diagnosed, it was serious business. When I was in active disease mode, it was serious business, when I was stable it was serious business.... .....it is all serious. Your information that you relay to us during your journey will help someone. It is amazing that most of us learn more here than anywhere else. And, we learn from complainers just like you and me! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Caro...come to think of it, I don't remember anything of you personally....are you married, kids? You've sure had your own set of plates in the air haven't you. Hard to balance with all that stuff going on. How are you doing on your new gym? Are you glad you bought it? You'll be ok Caro. Maybe not healthy, but ok. So many care and will help when you need it. It is said so often on board, "We get it" and we do. Families often don't. My one girl doesn't. She is sure that positive thinking is going to change things. Keep on keepin' on......... hugs. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Caro/MB/WaltTo: Breathe-Support@ yahoogroups. comDate: Thursday, May 1, 2008, 12:30 PM Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Caro, One of the things I learned in rehab is to blow out when I step up a stair. Breathe in on the stair, then blow out as you go up. Does that make sense? Anyway, stairs is one of the first things I had to give up. So....... you probably should be thinking of moving to a first floor apartment, etc. I think rehab is going to be so good for you. It will really let you know where you stand as far as 02 needs are concerned. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Caro It makes sense and is a personal choice but I think you underestimate how kind people can be without them treating you as if you were dying. You will find that most like to be educated and then, if they see you are comfortable, they will be. In San we had tshirts and it led to questions and answers. I've explained to friends but also to strangers from desk clerks in hotels to the manager of my favorite convenience store. I don't seek people to explain it to but do share the information with those who I believe are genuinely interested. I don't present it as tragic or horrible or to feel sorry for me but as conversation and knowledge. I've found people who don't want to know generally don't ask but those who do or who open the door are sincere. I've also found they go back to treating you just as they did before. It hasn't changed the dynamics for me. Perhaps San is even a good example. We certainly didn't talk about the disease even among ourselves all the time. We enjoyed every topic any friends gathering would. On the cruise through Riverwalk we weren't PF'ers, we were just a group on a boat. At Ben and Jerry's, we were just people excited by ice cream....oh my, I found the magic word to get Jane excited....I saw Baskin and Robbins and mentioned it....she was ready....but we passed for the moment and then I saw Ben and Jerry's and we were there. Now Eddie didn't exactly resist. I know we were absolutely the loudest bunch in the hotel. We were all having fun even when getting a bit tired. I think of my friends here who all know the nature of my disease. Yes, they ask how I'm feeling but I ask how they are feeling. It doesn't go further than that unless one or the other of us has something new in terms of our health or how we're doing on a given day. I have one friend who often has friends in and out and I know the first time they were there the nature of my disease didn't come up. The second time it did because they were sincere in wanting to know more. However, we then went back to other topics and they didn't treat me any different. I mentioned hotel desk clerks and there is one in particular who was so incredibly nice in Litchfield, Illinois. Well, it was natural because as she helped me with my oxygen it came up her grandfather had been on oxygen. So, she was interested. I could see in her face that by having her assist me, I'd actually done her a favor. The time will come when you're comfortable with your disease...not happy to have it, but more comfortable. Then you'll find others can be too. I think I'm friendlier now and more open and surely finding others that way. In San my other new friend is the guy who helped me up with my oxygen and baggage and then out, Arthur. Now he liked his tip but he was a nice guy too. He didn't make me feel like I was sick or dying but just someone who couldn't lift a 100 pound reservoir and we just talked along the way. Snyder TX is now well educated. If they can handle it, so can the rest of the world. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Thanks Bruce. You are right. I think I have just been having a woe is me moment for the last couple of days. I feel much better today and my insight and outlook are a lot better on things (at least so far!! LOL!!). I have much to be thankful for even with this disease and that is what I am focusing on. I think in time I will try and reach out to people more and I know they will be more understanding that I can imagine. Your story is truly an inspiration to me. Thanks so much. I really needed that. Hope you have a wonderful day!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Caro/MB/WaltTo: Breathe-Support Date: Monday, May 5, 2008, 12:09 AM CaroIt makes sense and is a personal choice but I think you underestimatehow kind people can be without them treating you as if you were dying.You will find that most like to be educated and then, if they see youare comfortable, they will be. In San we had tshirts and it ledto questions and answers. I've explained to friends but also tostrangers from desk clerks in hotels to the manager of my favoriteconvenience store. I don't seek people to explain it to but do share theinformation with those who I believe are genuinely interested. I don'tpresent it as tragic or horrible or to feel sorry for me but asconversation and knowledge. I've found people who don't want to knowgenerally don't ask but those who do or who open the door are sincere.I've also found they go back to treating you just as they did before. Ithasn't changed the dynamics for me.Perhaps San is even a good example. We certainly didn't talkabout the disease even among ourselves all the time. We enjoyed everytopic any friends gathering would. On the cruise through Riverwalk weweren't PF'ers, we were just a group on a boat. At Ben and Jerry's, wewere just people excited by ice cream....oh my, I found the magic wordto get Jane excited....I saw Baskin and Robbins and mentioned it....shewas ready....but we passed for the moment and then I saw Ben and Jerry'sand we were there. Now Eddie didn't exactly resist.I know we were absolutely the loudest bunch in the hotel. We were allhaving fun even when getting a bit tired. I think of my friends here whoall know the nature of my disease. Yes, they ask how I'm feeling but Iask how they are feeling. It doesn't go further than that unless one orthe other of us has something new in terms of our health or how we'redoing on a given day. I have one friend who often has friends in and outand I know the first time they were there the nature of my diseasedidn't come up. The second time it did because they were sincere inwanting to know more. However, we then went back to other topics andthey didn't treat me any different. I mentioned hotel desk clerks andthere is one in particular who was so incredibly nice in Litchfield,Illinois. Well, it was natural because as she helped me with my oxygenit came up her grandfather had been on oxygen. So, she was interested. Icould see in her face that by having her assist me, I'd actually doneher a favor.The time will come when you're comfortable with your disease...not happyto have it, but more comfortable. Then you'll find others can be too. Ithink I'm friendlier now and more open and surely finding others thatway. In San my other new friend is the guy who helped me up withmy oxygen and baggage and then out, Arthur. Now he liked his tip but hewas a nice guy too. He didn't make me feel like I was sick or dying butjust someone who couldn't lift a 100 pound reservoir and we just talkedalong the way.Snyder TX is now well educated. If they can handle it, so can the restof the world. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 My lease is up the end of August and I was thinking of trying to find a house for rent or else trying to move downstairs. I hate the thought of having to move all this stuff again, but I think I am going to be on that level with you and the stairs will be the first thing to go.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Caro/MB/WaltTo: Breathe-Support Date: Sunday, May 4, 2008, 8:34 PM Caro, One of the things I learned in rehab is to blow out when I step up a stair. Breathe in on the stair, then blow out as you go up. Does that make sense? Anyway, stairs is one of the first things I had to give up. So....... you probably should be thinking of moving to a first floor apartment, etc. I think rehab is going to be so good for you. It will really let you know where you stand as far as 02 needs are concerned. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 No, I am not married. Was actually divorced in 1995. Have had a 'boyfriend' since 2001 but he lives an hour away now and I see him every month or so. We have sort of a strange relationship, I guess. I talk to him everyday on the phone and he is my best friend, but I don't think we will ever get married. We tried living together last year and we made it for 8 months and I guess we found we got along better without the day to day routine or something. I have 3 kids, all grown, 2 boys and 1 girl. Oldest son is 30, youngest son is 21, and daughter is 26. I have 3 grandsons by my daughter, ages 9, 5, and 3. I really need to post some pics!! My grandsons are the love of my life!! I spoil them rotten. Sometimes they are what keeps me going I think. My mom and dad are both alive and kickin still. My dad is 70 and my mom is 64. They have been married for 48 years. Guess it does work sometimes, huh? My dad is very active. I couldn't keep up with him if I tried. I guess that is where I get my "have to get up and hit the floor running thing" every morning. Always trying to be busy doing something. I can't stand just sitting and doing nothing. Guess that is why I am having such a tough time dealing with this disease. My 2 sons are not married. I am beginning to wonder if my oldest will ever get married. He doesn't have a girlfriend and he is a workaholic, but he loves his job and he gets to travel a lot and that is what he likes, and I am proud of him. My youngest son has a girlfriend and they live together. She is the sweetest person you would ever want to meet and she keeps him out of trouble!! That is the best part. He had such a hard time only a little over a year ago when he got messed up with drugs, but so far nearly a year and a half and he is doing great. I am so proud of him, too. My daughter is very, very mom dependent and I think she will take it harder than any of my kids when I finally do kick the bucket. She calls me everyday 3 to 4 times a day, we go shopping together, and things like that. She lives closer, too, but we have always pretty much done things together that I didn't do with the boys. Guess it is a girl thing!! It seems like when your boys grow up, they go their own way and do their own thing, but she seems to stick with me more than they do. Not that I think the boys love me any less, they just show it differently, and that is okay. I know they all love me. The oldest son and my daughter and her husband and the kids are coming for Mother's Day and we are supposed to have a big cookout and I think that will be fun. I am really looking forward to it. Oh yeah, I could have given names, I guess!! DUH!! Will is the oldest son, Summer is my daughter, is her husband, Brent is my youngest son, is my boyfriend, and the grandkids are from oldest to youngest, , Zak, and Kaden. P. S. - The Total Gym is working out so far. I just need to make more time to get on it. Went out to lunch yesterday with my mom and dad at Capn D's and I kinda sorta blew the healthy eating thing!! Oh, well. It's not gonna kill me. I will just try and get back on track today!! Well, that is about it for my personal stuff -- I will try and get on tonight and post some pics. Thanks so much for asking, Sher. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Sher Bauman <bofuswbcable (DOT) net>Subject: Caro/MB/WaltTo: Breathe-Support@ yahoogroups. comDate: Thursday, May 1, 2008, 12:30 PM Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Caro Steps I was one month into my lease....and oh so lucky when the person right below me gave their notice. Yes, it was costly and a pain but I was able to do it when I was as healthy as I'll ever be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 I am thinking of checking with the landlord and put my name on the list ahead of time. Maybe I will get lucky. Caro Subject: Re: Caro/MB/WaltTo: Breathe-Support Date: Monday, May 5, 2008, 11:43 AM CaroStepsI was one month into my lease....and oh so lucky when the person rightbelow me gave their notice. Yes, it was costly and a pain but I was ableto do it when I was as healthy as I'll ever be. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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