Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Sher, Give yourself a little time and take time to be sad! It is o.k. to grieve about the loss of health. Then get mad....GET REAL MAD...and get busy. Use that energy to motivate yourself to search and orgainize your records. You have a right to every medical report. You have a right to information. Don't allow anyone to treat you like you don't matter or to incinuate that you are too dumb to understand what they are saying or not saying. There are loads of information about oxygen and testing and treatment right here on this sight. Websites that has sent out are great. Do not let a small thing like oxygen usage keep you at home. I have been toting this stuff for years. Inconvenient, yet.....heavy and cumbersome, yes....but a blessing that allows me to stay as active as possible. I forget I have it on my face. The more that you do, the better you will feel about life. I remember the early days and the prednisone tremors. I know your fears and sadness. Please let us help you with any question that you have. We all are dealing or have dealt with the same problems...we fight the same "monster".... you can help us too. Lots of hugs, Joyce >> Hi group...I don't know if I'm sad or mad! So many of you deal with so much more than I, in my 'mild' stage of ipf but my rehab visit yesterday was so frustrating. The only place I seem to get to 'the truth' is here on this board.> I inquired about purple nail beds...clubbing of fingers (some toe nails looking strange too). Oxygen is being ordered for me...I know nothing about oxygen use or the many different ways of receiving it. The one gal I talk with seems to Poo-poo my questions and I'm pretty assertive! I don't know if she is trying to be always positive or if she really is as impatient as she acts.> I wonder why there isn't some little pamphlet that can be given to pf patients as to 'what to expect' so everything isn't such a shock! I didn't know 'clubbing fingers'...I learned that here. So on and so on. When I inquired, "What> more happens as this disease progresses?", she was vague. I am now at my second month of finding out I have ipf. I don't know what to expect....is there a "usual" progression of "symptoms"? I know we don't all progress at the same time but are there body changes that we all go through? It's hard for me to imagine me going to the store or where ever with 02. I read the posts of those of you using 02 and I learn it isn't easy for you.> I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. > Thank you all for your posts. I read them nearly every day even if I do not respond. Hugs. Sher ipf 5-06> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Joyce...everything you say, I "know". It is so good to read the words. I think I'm expecting too much of myself too quickly. I'm scared and I don't do fear well when I have no control over what scares me. Acceptance is what I need to work on and right now I'm not accepting. I will. I will. I will. I think I can, I think I can, I think I can. I have already started the organizing of my records, letters, preferences, etc. The key word is 'started'...I haven't gotten back to it yet. I've just shut down for now. My usual stiff upper lip is quivering a bit. Because of my shortness of breath my wonderful husband has a bigger load. Bless his heart. He is more than willing, does anything with no complaints but he just turned 76! He's running out of gas too. I am at this moment reminded: I can do all things through Christ who strengthens me! So I guess I will stop banging my spoon on my highchair and be grateful for what I have. Thanks for reading my woes. It does help to vent! Without the venting I get blocked with negativity. Hugs. Sher Re: Sad or Mad??? Sher, Give yourself a little time and take time to be sad! It is o.k. to grieve about the loss of health. Then get mad....GET REAL MAD...and get busy. Use that energy to motivate yourself to search and orgainize your records. You have a right to every medical report. You have a right to information. Don't allow anyone to treat you like you don't matter or to incinuate that you are too dumb to understand what they are saying or not saying. There are loads of information about oxygen and testing and treatment right here on this sight. Websites that has sent out are great. Do not let a small thing like oxygen usage keep you at home. I have been toting this stuff for years. Inconvenient, yet.....heavy and cumbersome, yes....but a blessing that allows me to stay as active as possible. I forget I have it on my face. The more that you do, the better you will feel about life. I remember the early days and the prednisone tremors. I know your fears and sadness. Please let us help you with any question that you have. We all are dealing or have dealt with the same problems...we fight the same "monster".... you can help us too. Lots of hugs, Joyce >> Hi group...I don't know if I'm sad or mad! So many of you deal with so much more than I, in my 'mild' stage of ipf but my rehab visit yesterday was so frustrating. The only place I seem to get to 'the truth' is here on this board.> I inquired about purple nail beds...clubbing of fingers (some toe nails looking strange too). Oxygen is being ordered for me...I know nothing about oxygen use or the many different ways of receiving it. The one gal I talk with seems to Poo-poo my questions and I'm pretty assertive! I don't know if she is trying to be always positive or if she really is as impatient as she acts.> I wonder why there isn't some little pamphlet that can be given to pf patients as to 'what to expect' so everything isn't such a shock! I didn't know 'clubbing fingers'...I learned that here. So on and so on. When I inquired, "What> more happens as this disease progresses?", she was vague. I am now at my second month of finding out I have ipf. I don't know what to expect....is there a "usual" progression of "symptoms"? I know we don't all progress at the same time but are there body changes that we all go through? It's hard for me to imagine me going to the store or where ever with 02. I read the posts of those of you using 02 and I learn it isn't easy for you.> I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. > Thank you all for your posts. I read them nearly every day even if I do not respond. Hugs. Sher ipf 5-06> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Hi Sher Here is a little light reading on O2 http://searcht.netscape.com/ns/boomframe.jsp?query=OXYGEN+CONCENTRATORS & page=1 & offset=0 & result_url=redir%3Fsrc%3Dwebsearch%26requestId%3Df9d2aeff0e2089be%26clickedItemRank%3D7%26userQuery%3DOXYGEN%2BCONCENTRATORS%26clickedItemURN%3Dhttp%253A%252F%252Fwww.lungusa.org%252Fsite%252Fpp.asp%253Fc%253DdvLUK9O0E%2526b%253D35697%26invocationType%3D-%26fromPage%3DNSBoom%26amp%3BampTest%3D1 & remove_url=http%3A%2F%2Fwww.lungusa.org%2Fsite%2Fpp.asp%253Fc%253DdvLUK9O0E%2526b%253D35 697 http://www.nlhep.org/resources/Prescrb-Hm-Oxygen/home-oxygen-options-4.html http://library2.nationaljewish.org/MSU/11n6MSU_Oxygen.html Here is some heavy reading on IPF http://www.fightipf.com/wt/page/index http://www.coalitionforpf.org/AboutUs/resources.asp P UIP 8/00 http://ajrccm.atsjournals.org/cgi/content/full/161/2/646?maxtoshow= & HITS=10 & hits=10 & RESULTFORMAT= & titleabstract=idiopathic+pulmonary+fibrosis+international+consensus+statement & searchid=QID_NOT_SET & stored_search= & FIRSTINDEX=0 & journalcode=ajrccm#SEC10 Sher K Bauman wrote: Hi group...I don't know if I'm sad or mad! So many of you deal with so much more than I, in my 'mild' stage of ipf but my rehab visit yesterday was so frustrating. The only place I seem to get to 'the truth' is here on this board. I inquired about purple nail beds...clubbing of fingers (some toe nails looking strange too). Oxygen is being ordered for me...I know nothing about oxygen use or the many different ways of receiving it. The one gal I talk with seems to Poo-poo my questions and I'm pretty assertive! I don't know if she is trying to be always positive or if she really is as impatient as she acts. I wonder why there isn't some little pamphlet that can be given to pf patients as to 'what to expect' so everything isn't such a shock! I didn't know 'clubbing fingers'...I learned that here. So on and so on. When I inquired, "What more happens as this disease progresses?", she was vague. I am now at my second month of finding out I have ipf. I don't know what to expect....is there a "usual" progression of "symptoms"? I know we don't all progress at the same time but are there body changes that we all go through? It's hard for me to imagine me going to the store or where ever with 02. I read the posts of those of you using 02 and I learn it isn't easy for you. I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. Thank you all for your posts. I read them nearly every day even if I do not respond. Hugs. Sher ipf 5-06 How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 MY, MY, MY, What a smart Queen we have. Peggy 09/04 ipf Sher, Give yourself a little time and take time to be sad! It is o.k. to grieve about the loss of health. Then get mad....GET REAL MAD...and get busy. Use that energy to motivate yourself to search and orgainize your records. You have a right to every medical report. You have a right to information. Don't allow anyone to treat you like you don't matter or to incinuate that you are too dumb to understand what they are saying or not saying. There are loads of information about oxygen and testing and treatment right here on this sight. Websites that has sent out are great. Do not let a small thing like oxygen usage keep you at home. I have been toting this stuff for years. Inconvenient, yet.....heavy and cumbersome, yes....but a blessing that allows me to stay as active as possible. I forget I have it on my face. The more that you do, the better you will feel about life. I remember the early days and the prednisone tremors. I know your fears and sadness. Please let us help you with any question that you have. We all are dealing or have dealt with the same problems...we fight the same " monster " .... you can help us too. Lots of hugs, Joyce > > Hi group...I don't know if I'm sad or mad! So many of you deal with so much more than I, in my 'mild' stage of ipf but my rehab visit yesterday was so frustrating. The only place I seem to get to 'the truth' is here on this board. > I inquired about purple nail beds...clubbing of fingers (some toe nails looking strange too). Oxygen is being ordered for me...I know nothing about oxygen use or the many different ways of receiving it. The one gal I talk with seems to Poo-poo my questions and I'm pretty assertive! I don't know if she is trying to be always positive or if she really is as impatient as she acts. > I wonder why there isn't some little pamphlet that can be given to pf patients as to 'what to expect' so everything isn't such a shock! I didn't know 'clubbing fingers'...I learned that here. So on and so on. Wh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Sher, I can relate to you completely!!! I remember the day I posted those same words on this site. "I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. " The outpouring of compassion and information I recieved in HnP still amazes me. I was so shut down & numbing myself with as much food as possible. Please know you are not alone. The mixed feelings, disapointment & frustration with the medical system. Feeling overwhelmed by the questions you have about something so important as How to use oxygen? How much to use? Little , if any written info on the process. Vauge and evasive answers to your questions. It's now almost two months later and I can't believe how much I've learned in just 60 days!!! It gets better, different, although sometimes it feels like my life is perched on a prespice (is that the right word/ - for on the edge/). I think I'm "getting it" though, as much as one can. LOL! #1 Give up the control!!! Thats been one of the hardest and biggest lessons. I have had to "Let Go and Let God!!!" #2 "Don't believe everything you think", You know what I mean? Watch out for negative thinking. #3 Don't take it personally. Yes, my Pul Spec is a total "buttmunch", but he treats everyone that way. That's who he is. Please don't let these folks shut you down for too long though, it's a good defense mech for a while, but those that love you will miss you. And you'll miss out too. Please also cut your self some slack, in this "stage" of the disease or that "stage', it's all difficult. It's all relative. When your hurting , your hurting and you have as much of a right to gripe as any one else. Do take care. I hope you don't mind such a long reply. Your post just brought tears to my eyes. LynnA >> Hi group...I don't know if I'm sad or mad! So many of you deal with so much more than I, in my 'mild' stage of ipf but my rehab visit yesterday was so frustrating. The only place I seem to get to 'the truth' is here on this board.> I inquired about purple nail beds...clubbing of fingers (some toe nails looking strange too). Oxygen is being ordered for me...I know nothing about oxygen use or the many different ways of receiving it. The one gal I talk with seems to Poo-poo my questions and I'm pretty assertive! I don't know if she is trying to be always positive or if she really is as impatient as she acts.> I wonder why there isn't some little pamphlet that can be given to pf patients as to 'what to expect' so everything isn't such a shock! I didn't know 'clubbing fingers'...I learned that here. So on and so on. When I inquired, "What> more happens as this disease progresses?", she was vague. I am now at my second month of finding out I have ipf. I don't know what to expect....is there a "usual" progression of "symptoms"? I know we don't all progress at the same time but are there body changes that we all go through? It's hard for me to imagine me going to the store or where ever with 02. I read the posts of those of you using 02 and I learn it isn't easy for you.> I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. > Thank you all for your posts. I read them nearly every day even if I do not respond. Hugs. Sher ipf 5-06> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Sher I have been reading the posts all morning and I just want to tell you " I understand " I wish I could say something to make it better for you. Just know we are here for you. I am really to tired today to think straight. So you take care and I'll talk to ya later. Love & Hugs God Bless and comfort you...Peggy 09/04 ipf Hi group...I don't know if I'm sad or mad! So many of you deal with so much more than I, in my 'mild' stage of ipf but my rehab visit yesterday was so frustrating. The only place I seem to get to 'the truth' is here on this board. I inquired about purple nail beds...clubbing of fingers (some toe nails looking strange too). Oxygen is being ordered for me...I know nothing about oxygen use or the many different ways of receiving it. The one gal I talk with seems to Poo-poo my questions and I'm pretty assertive! I don't know if she is trying to be always positive or if she really is as impatient as she acts. I wonder why there isn't some little pamphlet that can be given to pf patients as to 'what to expect' so everything isn't such a shock! I didn't know 'clubbing fingers'...I learned that here. So on and so on. When I inquired, " What more happens as this disease progresses? " , she was vague. I am now at my second month of finding out I have ipf. I don't know what to expect....is there a " usual " progression of " symptoms " ? I know we don't all progress at the same time but are there body changes that we all go through? It's hard for me to imagine me going to the store or where ever with 02. I read the posts of those of you using 02 and I learn it isn't easy for you. I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. Thank you all for your posts. I read them nearly every day even if I do not respond. Hugs. Sher ipf 5-06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Lynn! Thanks so very much for your reply. My eyes hung on every word. I'm so grateful for those of you who respond to me. I know you do understand. I have temporarily forgotten to Let Go and Let God. That used to be my motto! That, and "The way it is is the way it is". I think I'm getting back on track today. Joyce helped so much too and posted web sites I will keep for reference. What I resist is Drs who do not tell us what we need to know. What about all those who don't know of this board? For instance; I will no doubt have a blood gas (?) done soon...I know now to have the site numbed first! This board told me, not the PT or the Dr. Again, thanks for understanding. I know this disease is hard for all of us. I find it difficult in my personal life because I am a "survivor". I have survived more than my share of heartache and abuse and chaos and chronic health conditions (these are facts...not whining). Now I can't "survive" this experience! None of my acquired strengths will change this. I can't "fight back" in a typical way. I will process my way through this...but I need to remember, 'The way it is is the way it is' and right now, I'm doing the best I can. With much affection to you Lynn...and all of you. Sher ipf 5-06 Re: Sad or Mad??? Sher, I can relate to you completely!!! I remember the day I posted those same words on this site. "I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. " The outpouring of compassion and information I recieved in HnP still amazes me. I was so shut down & numbing myself with as much food as possible. Please know you are not alone. The mixed feelings, disapointment & frustration with the medical system. Feeling overwhelmed by the questions you have about something so important as How to use oxygen? How much to use? Little , if any written info on the process. Vauge and evasive answers to your questions. It's now almost two months later and I can't believe how much I've learned in just 60 days!!! It gets better, different, although sometimes it feels like my life is perched on a prespice (is that the right word/ - for on the edge/). I think I'm "getting it" though, as much as one can. LOL! #1 Give up the control!!! Thats been one of the hardest and biggest lessons. I have had to "Let Go and Let God!!!" #2 "Don't believe everything you think", You know what I mean? Watch out for negative thinking. #3 Don't take it personally. Yes, my Pul Spec is a total "buttmunch", but he treats everyone that way. That's who he is. Please don't let these folks shut you down for too long though, it's a good defense mech for a while, but those that love you will miss you. And you'll miss out too. Please also cut your self some slack, in this "stage" of the disease or that "stage', it's all difficult. It's all relative. When your hurting , your hurting and you have as much of a right to gripe as any one else. Do take care. I hope you don't mind such a long reply. Your post just brought tears to my eyes. LynnA >> Hi group...I don't know if I'm sad or mad! So many of you deal with so much more than I, in my 'mild' stage of ipf but my rehab visit yesterday was so frustrating. The only place I seem to get to 'the truth' is here on this board.> I inquired about purple nail beds...clubbing of fingers (some toe nails looking strange too). Oxygen is being ordered for me...I know nothing about oxygen use or the many different ways of receiving it. The one gal I talk with seems to Poo-poo my questions and I'm pretty assertive! I don't know if she is trying to be always positive or if she really is as impatient as she acts.> I wonder why there isn't some little pamphlet that can be given to pf patients as to 'what to expect' so everything isn't such a shock! I didn't know 'clubbing fingers'...I learned that here. So on and so on. When I inquired, "What> more happens as this disease progresses?", she was vague. I am now at my second month of finding out I have ipf. I don't know what to expect....is there a "usual" progression of "symptoms"? I know we don't all progress at the same time but are there body changes that we all go through? It's hard for me to imagine me going to the store or where ever with 02. I read the posts of those of you using 02 and I learn it isn't easy for you.> I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. > Thank you all for your posts. I read them nearly every day even if I do not respond. Hugs. Sher ipf 5-06> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 , thanks for the info!! I will keep for reference. This is the sort of thing I was talking about...INFORMATION. Hang on it, I'm sure there will be new ones coming along regularly. Bless you. Sher ipf 5-06 Re: Sad or Mad??? Hi Sher Here is a little light reading on O2 http://searcht.netscape.com/ns/boomframe.jsp?query=OXYGEN+CONCENTRATORS & page=1 & offset=0 & result_url=redir%3Fsrc%3Dwebsearch%26requestId%3Df9d2aeff0e2089be%26clickedItemRank%3D7%26userQuery%3DOXYGEN%2BCONCENTRATORS%26clickedItemURN%3Dhttp%253A%252F%252Fwww.lungusa.org%252Fsite%252Fpp.asp%253Fc%253DdvLUK9O0E%2526b%253D35697%26invocationType%3D-%26fromPage%3DNSBoom%26amp%3BampTest%3D1 & remove_url=http%3A%2F%2Fwww.lungusa.org%2Fsite%2Fpp.asp%253Fc%253DdvLUK9O0E%2526b%253D35 697 http://www.nlhep.org/resources/Prescrb-Hm-Oxygen/home-oxygen-options-4.html http://library2.nationaljewish.org/MSU/11n6MSU_Oxygen.html Here is some heavy reading on IPF http://www.fightipf.com/wt/page/index http://www.coalitionforpf.org/AboutUs/resources.asp P UIP 8/00 http://ajrccm.atsjournals.org/cgi/content/full/161/2/646?maxtoshow= & HITS=10 & hits=10 & RESULTFORMAT= & titleabstract=idiopathic+pulmonary+fibrosis+international+consensus+statement & searchid=QID_NOT_SET & stored_search= & FIRSTINDEX=0 & journalcode=ajrccm#SEC10 Sher K Bauman wrote: Hi group...I don't know if I'm sad or mad! So many of you deal with so much more than I, in my 'mild' stage of ipf but my rehab visit yesterday was so frustrating. The only place I seem to get to 'the truth' is here on this board. I inquired about purple nail beds...clubbing of fingers (some toe nails looking strange too). Oxygen is being ordered for me...I know nothing about oxygen use or the many different ways of receiving it. The one gal I talk with seems to Poo-poo my questions and I'm pretty assertive! I don't know if she is trying to be always positive or if she really is as impatient as she acts. I wonder why there isn't some little pamphlet that can be given to pf patients as to 'what to expect' so everything isn't such a shock! I didn't know 'clubbing fingers'...I learned that here. So on and so on. When I inquired, "What more happens as this disease progresses?", she was vague. I am now at my second month of finding out I have ipf. I don't know what to expect....is there a "usual" progression of "symptoms"? I know we don't all progress at the same time but are there body changes that we all go through? It's hard for me to imagine me going to the store or where ever with 02. I read the posts of those of you using 02 and I learn it isn't easy for you. I'm such a take charge person, organized and detail oriented and now I feel totally out of control. Like I'm looking for a light switch in a dark room with which I am not familiar. I've just shut down. Thank you all for your posts. I read them nearly every day even if I do not respond. Hugs. Sher ipf 5-06 How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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