Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Hi Becki, We were all getting quite worried about you. I’m sorry to hear you are not much better. A little advice from someone who’s been there. Forget presents, forget Christmas. Just get better – your family and friends will understand, and if they don’t, they’re not worth the effort anyway. Last year I was in hospital for my daughter’s 25th birthday – a milestone. Earlier in the year I’d organised a surprise 50th for hubby. Two days beforehand I was rushed to hospital by ambulance. The party had to be cancelled at the last minute, although I really wanted to go ahead. (I think it was a relief for hubby, to be honest). Things can be deferred (like celebrations for birthdays and Christmas), your health is more important. I have friends who actually celebrate Christmas in January. That way they buy everything cheap in the New Year sales. Plus they get to shop in peace and quiet. Personally, I think they’ve gotten it right! Becki, look after yourself, and I hope your hubby gets better real soon – he’s probably worrying about you as well. Cheryl Cheryl Australian Author and Freelance Journalist Registered Business: ABN 97 864 868 214 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Email: write_cheryl@... Website: www.cheryl-wright.com Writer2Writer website: www.writer2writer.com *Check out our new contest! Free ezine for writers: http://writertowriter.subto.us/subscribe.html Privacy statement: I will never, ever, (even under torture, threat of eating seafood or having my chocolate supply revoked) give-away, sell or divulge your details. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Coming soon (in pdf format) " Think Outside the Square: Writing Publishable (short) Stories " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 Becki; Hi, I hope you're feeling bit better by the time you read this. While I don't know the extend of your illness this time or the demands being made upon you. I agree whole heartily with what Cheryl is telling you. Like her, I've been there, done that and probably have too many T-shirts to burn. Quite simply, and as cold hearted as this may be or sound. If you don't do it(take care of yourself that is) no body else will. I found this out the hard way, unfortunately many times in my life. And I know what family and social pressures are! My Mom, even up to her dying day (she took herself off the oxygen shortly before she died) was the queen of "I want and I want it now!" You know having had bronchiectasis all my life, (I'm now 39) but never knowing or fully understanding what it was until 14 years ago. I can honestly say, that I don't always think is not that people don't care as so much as they don't understand or in some cases want to understand. I mean after all there isn't much public information being put out about bronchiectasis and many in the medical field considered it such a rarity that is doesn't even warrant any kind of official forum. Which is very, very maddening. I mean it took me nearly eight years to finally get a disabled status from Social Security and I actually had to take matters into my own hands by digging up all my hospital and doctor records and then appear before a federal judge along with my lawyer from legal aide just to get that. And I still have to go back every so often to have this status reviewed and maintained. And sometimes the people around you can be the worst, because they don't see you (or at least in my case) as being limited. After all you look normal. You can move on two legs and get around on two legs. You have use of your arms and hands. You're eyesight may be good or slightly off but you can take of that and your brain and mind functions. Why can't you do this and that?! So what if you cough more than most people, breath a little harder than the next guy, have trouble sleeping cause you're constantly waking up due to a coughing spell, keep getting infections, turn into a semi-walking medicine closet just to get through the day without sounding or looking like you're bringing you're insides up! Let's not talk about what you gotta do if you have continuous problems with sinuses or allergies too. The rant goes on, but until people, especially family either educated themselves or go through the things most bronchiectasis suffers go though personally. They never will understand. I remember a friend of ours telling my 73 year old mother, who was claustrophobic and would always take stairs whenever possible, no matter what, when she complained to her about me not taking the stairs with her one day, that she (my Mom) was still stronger with one good lung (cancer was stage 3 in her right lung) than I was with both of mine. Whether or not she believed it, I'll never know. But I didn't start taking the stairs with her either. I guess what all this is trying to say, is you really got to look out for yourself regardless. Christmas and all that stuff is just a holiday. It will happen regardless of what you do and don't do. Take that from someone who's done both. If it has faith meaning to you or your family, that will happen regardless anyway and God knows whats in your heart and how sincere it is. So I'm sure he wouldn't mind your seat being empty in a pew somewhere. After all, you'd wouldn't be able to be there anyway if your in the hospital or dead somewhere. Now would you? As to all the Christmas commercialism? That can happen anytime, any place and sometimes, quite honesty the best thing in the world is to not "do" anything for Christmas. Especially if you aren't up to it or you're heart isn't really truly there. It will come around again. So, in all of this I mean to say--and I should probably follow my own advice here--take care of yourself first and foremost. The heck with what you should or shouldn't be doing as deemed by other people. Unless of course they're going to step in and take care of you themselves when you no longer can. Otherwise it's all on you. Or look at it this way, if you don't or can't be allowed to take care of yourself first, how are you going to be able to tend to and do all the things being demanded of you? In any case, take care, get better and raise hell with anybody whose says otherwise. They all scurry away thinking you've gone insane by the time you get done. And sometimes that's the best damn thing in the world! Many blessings and Merry Christmas Nayrnn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 You did an excellent job on explaining the consequences of our disease. I printed it and I'm going to hand it out to friends and family, so they'll understand it more fully (I hope). > >Reply-To: bronchiectasis >To: bronchiectasis >Subject: Re: Becki >Date: Fri, 19 Dec 2003 22:46:00 -0800 (PST) > >Becki; > >Hi, I hope you're feeling bit better by the time you read this. While I >don't know the extend of your illness this time or the demands being made >upon you. I agree whole heartily with what Cheryl is telling you. Like her, >I've been there, done that and probably have too many T-shirts to burn. > >Quite simply, and as cold hearted as this may be or sound. If you don't do >it(take care of yourself that is) no body else will. I found this out the >hard way, unfortunately many times in my life. And I know what family and >social pressures are! My Mom, even up to her dying day (she took herself >off the oxygen shortly before she died) was the queen of " I want and I want >it now! " > >You know having had bronchiectasis all my life, (I'm now 39) but never >knowing or fully understanding what it was until 14 years ago. I can >honestly say, that I don't always think is not that people don't care as so >much as they don't understand or in some cases want to understand. I mean >after all there isn't much public information being put out about >bronchiectasis and many in the medical field considered it such a rarity >that is doesn't even warrant any kind of official forum. Which is very, >very maddening. > >I mean it took me nearly eight years to finally get a disabled status from >Social Security and I actually had to take matters into my own hands by >digging up all my hospital and doctor records and then appear before a >federal judge along with my lawyer from legal aide just to get that. And I >still have to go back every so often to have this status reviewed and >maintained. > >And sometimes the people around you can be the worst, because they don't >see you (or at least in my case) as being limited. After all you look >normal. You can move on two legs and get around on two legs. You have use >of your arms and hands. You're eyesight may be good or slightly off but you >can take of that and your brain and mind functions. Why can't you do this >and that?! So what if you cough more than most people, breath a little >harder than the next guy, have trouble sleeping cause you're constantly >waking up due to a coughing spell, keep getting infections, turn into a >semi-walking medicine closet just to get through the day without sounding >or looking like you're bringing you're insides up! Let's not talk about >what you gotta do if you have continuous problems with sinuses or allergies >too. The rant goes on, but until people, especially family either educated >themselves or go through the things most bronchiectasis suffers go though >personally. They never will understand. I > remember a friend of ours telling my 73 year old mother, who was >claustrophobic and would always take stairs whenever possible, no matter >what, when she complained to her about me not taking the stairs with her >one day, that she (my Mom) was still stronger with one good lung (cancer >was stage 3 in her right lung) than I was with both of mine. Whether or not >she believed it, I'll never know. But I didn't start taking the stairs with >her either. > >I guess what all this is trying to say, is you really got to look out for >yourself regardless. Christmas and all that stuff is just a holiday. It >will happen regardless of what you do and don't do. Take that from someone >who's done both. If it has faith meaning to you or your family, that will >happen regardless anyway and God knows whats in your heart and how sincere >it is. So I'm sure he wouldn't mind your seat being empty in a pew >somewhere. After all, you'd wouldn't be able to be there anyway if your in >the hospital or dead somewhere. Now would you? As to all the Christmas >commercialism? That can happen anytime, any place and sometimes, quite >honesty the best thing in the world is to not " do " anything for Christmas. >Especially if you aren't up to it or you're heart isn't really truly there. >It will come around again. > >So, in all of this I mean to say--and I should probably follow my own >advice here--take care of yourself first and foremost. The heck with what >you should or shouldn't be doing as deemed by other people. Unless of >course they're going to step in and take care of you themselves when you no >longer can. Otherwise it's all on you. Or look at it this way, if you don't >or can't be allowed to take care of yourself first, how are you going to be >able to tend to and do all the things being demanded of you? > >In any case, take care, get better and raise hell with anybody whose says >otherwise. They all scurry away thinking you've gone insane by the time you >get done. And sometimes that's the best damn thing in the world! > >Many blessings and Merry Christmas > >Nayrnn _________________________________________________________________ Worried about inbox overload? Get MSN Extra Storage now! http://join.msn.com/?PAGE=features/es Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Nayrnn, I am going to print your email and place it by the computer so maybe my husband will read it. He thinks his constipation is a BIG problem. Then, he says to me, "You have been sick all your life." I am going to take your advice and start thinking of Norma's health needs for a change. You said it LOUD AND CLEAR. I am going to take your advice. Thanks a million, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Karin, I am glad you appreciate your supportive spouse. When I first went to the pulmonary doctor's office to learn how to do postural drainage, the respiratory therapist said, "Where is your partner?" I said, "You mean my husband?" He has never gone to any doctor's appointments even when I had breast cancer in 1989. So tell your spouse "Thank You from Norma." Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 We who have a supportive spouse and support our spouse are among the luckiest people in the world. My hubby and I have been married 52-1/2 years and no one could have been more loved or cared for than I. I have always been there when the chips were down for him and by golly he has done the same for me. I just took all of this for granted and thought it was normal for years but I no longer do that. We have always let the other know how much we love & appreciate each other like with a card dropped here or there, or a note in the lunch bag, etc. I really feel bad when I hear about a marriage partner who is not sympathetic such as you describe Norma. It must be very hard to live in that type of condition. My prayers are with you and I hope things will change - God does work miracles you know. In the meantime just remember that your family here loves you, cares and understands what you are going thru.................................................................Nona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Nona, You are all a wonderful support group. The first thing I do when I come home is to check my emails. You are like family and better than some of those. Through Alanon I am trying to learn to live one day at a time. Also my s Minister at my church as been a source of support. You are all the best anyone could ever hope to have as support. Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2004 Report Share Posted February 8, 2004 well miss becki, i'm sorry you have a cough but at least we know you're alive......where have you been......we've all been very worried about you. jenniferMissGooberGirl@... wrote: Hey I woke up with a cough this morning and my lungs feel super twitchy and hurt. We went out to Oliver Garden tonight for a Valentine Dinner. Brad works on Valentines Day.UGHHHHhhhhhhhhhhhhHHHHHHHHHhhhhhhhhhhhhI hate coughing and puking...so is my lifeBeckiListed for Lungs 1/14/04 at Mayo Clinic ville,Fla.YOUR FAVORITE LilGooberGirlYOUNGLUNG EMAIL SUPPORT LISTwww.topica.com/lists/younglungPediatric Interstitial Lung Disease Societyhttp://groups.yahoo.com/group/InterstitialLung_Kids/ Post your free ad now! Yahoo! Canada Personals Quote Link to comment Share on other sites More sharing options...
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