Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 i also remember someone telling me a small fan ,and they were right ,right after surgery i was still hot and sweating even with a little air just to have it on my face would have been good. -J wrote: > > I agree with the lip balm. It was the first thing I > wanted. Also, I took my own pillow which I liked much > better than the one provided by the hospital. It also > helps to have some hand creme and maybe some Noxema > face cream. > > The hospital I was in did not have a good selection of > low sugar juices, so my SO brought me in sugar free > koolaide when I was able to drink. > > I was in for 5 days and could not shower till day 5. > Till then you do the sponge bath thang. I would say > that when you can shower varies according to your > surgeon and of course YOU. Best of luck, Pam.. I am > going into three weeks post-op and have no regrets. > > Jana > > > > > > Pam wrote: > > > Well, I've been moved up from March 6 to February 27 > to February 24. > > This is when I'm planning to show up--hope the > surgeon does, > > also! LOL I'm soooo ready! I'm hoping to get > answers to a couple > > of questions. > > > > Is there anything SPECIAL I should take to the > hospital? (Besides > > the usual toothpaste, deo, etc.) > > > > I'll be in the hospital for 4 days--will I be able > to shower while > > there? (Good Lord, I hope so!) > > > > I know these are silly questions, but I've never > really been in the > > hospital except for 1 day several years ago for > Meniere's disease, > > and as far as surgery goes I've only had an > exploratory laparoscopic > > procedure done about 15 years ago. BOY, AM I GONNA > BE IN FOR A > > TREAT! LOL > > > > Thanks for the help! > > > ===== > > Jay > > " Life is fleeting, like a bubble in a stream... " > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 I read a little tidbit in a cooking light of all places about lip balm. They say to use the vaseline type, instead of the wax type as the wax dehydrates your lips and the vaseline holds the moisture in. So that's what I used. Now my sister-in-law got me this great stuff from bath and body works, in warm vanilla sugar, and that stuff isn't waxy like chap stick. But to be honest the vaseline lip therapy is the best. You can take that to the bank as this chick hasn't had anything by mouth to eat or drink since Dec 14th, boo hoo. But, hey I'm down 13 more lbs making a grand total of 63 in the past 2 months since my surgery. Love, Deb Sellman Apply Dogs logic to life: eat well,be loved, get petted,sleep a lot, dream of a leash free world! make the difference in the life of someone with cancer, volunteer or sign them up for chemoangels, you'll be glad you did www.chemoangels.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Dear Deb and , Thanks for reminding me , what our Deb is experiencing right now. I know all of our " experiences " are different but I'm sure this has been difficult for you, Deb. I admire your courage, your sense of humor and upbeat attitude during all of this. ::Big Sis Hugs from Virginia:: Love, Trace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 the more attempts at losing and gaining weight over and over the better the chance of insurance covering the surgery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 Barbara - The more weight loss attempts you've tried and failed will help show why you need the surgery. As for protein drinks, drinking 5-6 a day will help you not eat as much, but pre-op you still will eat some food. But our in Sacremento lost a bunch of weight before her surgery and her surgeon praised her for having such great tissues to cut into. So it's a good thing, just don't think you're going to totally stop eating. You should especially make sure to eat your fruits and veggies along with all those protein drinks. Hope I've helped. Jeanne in WI Age 39 Open RNY - 5/21/02 Dr. Chua 5'7 " - 314/218/150-175 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 Barb our own here lost a lot of weight as a preop just adding protein drinks several months preop RE: Questions > Hi, everyone. > > I am still several months prior to consultation with the surgeon. However, I have 2 questions: will my previous history losing weight (you know the drill) on programs and then putting it back on help or hurt my insurance chances? My history does show I can lose weight, just not keep it off (sound familiar?) I'm wondering if I'd be better off not revealing all of the attempts, but maybe 6 or 7? Any thoughts? I have Independence Blue Cross/Blue Shield Personal Choice. > > My second question is about protein drinks. I have been eating out of control for about 3 months and want to stop. Would the protein drinks help me now? Can I live on 5 or 6 a day and nothing else? Is that recommended? > > Thanks very much for the input. > > Barbara in Philadelphia > > > > To Subscribe to 's monthly FREE Newsletter send an email to GBCookbook-subscribe@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 , in a nut shell, I am a mess, almost 4 months po and have never felt full or gotten sick or anything. Surgeon has run tests (upper gi, endoscopy and gastro emptying test) turns out, I am ok, small pouch, stoma ok, etc... still don't know why I don't feel full. I had lost up to 56 lbs by Feb 6, now it is Feb 24 and I am still at a 55-56 lb weight loss, have not lost a lb in almost a month. So, I am asking you, what would be your recommendation for a diet for me. I used to do 30 g of protein a day, now I am up to 60(increased it to 60 two days ago). I have ordered your Pure Whey Stack, but that has not arrived yet, so I am drinking Designer Whey right now. At any rate, I don't mind eating regular food, especially since nothing bothers me (yes, I can eat steak, pork chops, etc). I can eat pretty fast too, I don't feel a thing. Do you know why it is important to eat slowly? In specifics, I need help, I want to lose, I want to be obedient, I just don t quite know what direction to take. Do I eat 5-6 times a day, or 3 times a day? Is 60 g of protein enough or should I be drinking up to 120g (a website I found tells you according to your weight and activity level you should be at so many g of protein a day, mine is 120 (and that is at a moderate exercise level such as walking))? How many oz should I be consuming at each meal? How should I space my meals? I know your answers/support/encouragement will not only benefit me, but might also benefit others out there struggling with some of the same issues. I don't really trust my surgeon's diet, he wants me to eat 6 times a day, only 4 TBS of food at each meal, no protein shakes, and drink carnation instant breakfast instead. I don't have a nutritionist. I am thankful my surgeon has ordered the tests, I kinda wish he had found something wrong. I do have a small hiatal hernia, but not big enough to operate on. So, now it is just up to me,,, I have to eat right, and exercise, and hope for the best. Sugar does not make me dump, so I have to watch my carb intake too, I find it feeding upon itself, if I have some potatoe, then, I need a few bites of crackers, then I need to grab a cookie or two,, it is a neverending battle. I have attempted a few times to mix up a tiny bit of shake and drink it instead of reaching for the cookies. Thanks for your input and help, I sure do appreciate it.. I am desperate. Debbi in Ohio wrote: You can get by with several shakes a day, but I'd rather se you do a meal or two of fruit/veggies and a good grain. With butter, dressing. You need the fats. Along WITH the protein shakes Thanks, Vitalady, Inc. T www.vitalady.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Dear Barbara in Philly, I don't think revealing your unsuccessful WL attempts is a bad thing as far as your insurance company is concerned. Some insurance companies require members to have tried/failed with other diets or programs. The protein drinks help to curb sweet/carb cravings for me. I drink 2-3 a day and I can really, really tell if I'm not getting enough protein from my shakes. Solid protein -- eggs, cheese, chicken, fish, etc., is MUCH harder to digest and I never know just how much protein I will be able to absorb from food I eat. Protein shakes are predigested, whey isolate protein, sugar free or very low in sugar and " designed " for maxim absorption. Have you visited Mom at <A HREF= " http://www.vitalady.com/ " >Vitalady.com - Protein Supplements, Vitamins & Minerals, and Safe Snacks!</A> ? My favorite proteins are Champion Nutrition's Pure Whey Stack and ProScore 100, in chocolate. I've tried SciFit, Isopure, ProBlend 55 and a few others. The PWS and the PS100 taste the best to me. Take good care and God bless you richly. Love, Trace in Va. Beach, VA Dr. Schechner, Va. Beach, VA Open RNY -- 9/5/02 Height -- 5' 9 1/2 " Starting weight -- 351.2 Current weight -- 255 Minus -- 96.2 pounds gone! Gal. 2:20 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 Hi Debbie, >>I hate that they weigh in the evening << I weigh in the morning, but I have my coffee before I go, as much as I have time for. (It's on a Saturday). I am sure that adds weight, but as long as I'm consistent, I think I'm fine. So you should be fine, I think, all things being equal. There are people at my meeting who go in the bathroom and put shorts on, etc. but I am not willing to go to those lengths. Based on the conversations at the meeting, it sounds like most of the people there do drink the water. I'm sure that's not always true, just like everything else. C in MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2005 Report Share Posted April 16, 2005 Hi , Very sorry to hear you are getting worse faster than your wife thinks you should be. At the risk of harping on about it, if progression really concerns you then you should try LDN (low dose naltrexone) which has been mentioned on here plenty of times in the last year or more. It is probably the only thing out there that may stop progression. As well as a few PLSers like myself using it with good results I also know people with ALS who are taking it and it has even significantly slowed or stopped their progression. In many cases it has actually improved some symptoms (which is a nice bonus!!). Eller wrote: > The next question is that my wife says Im getting worse faster than I > should be.I started started noticing a problem in 1999 with my walking > but coudnt find a Dr. to tell me what was wrong.I finally found one in > 2003 and after the usual test told me I had PLS at the end of 2003 and > had me quit work.I didnt get officially Dx until march 2004.Im still > walking with my cane and walker but get tired easily.I think Im doing > pretty good but my wife says Im going to fast for PLS.What do yall > think? > Your Friend; -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2005 Report Share Posted April 16, 2005 Hi , Very sorry to hear you are getting worse faster than your wife thinks you should be. At the risk of harping on about it, if progression really concerns you then you should try LDN (low dose naltrexone) which has been mentioned on here plenty of times in the last year or more. It is probably the only thing out there that may stop progression. As well as a few PLSers like myself using it with good results I also know people with ALS who are taking it and it has even significantly slowed or stopped their progression. In many cases it has actually improved some symptoms (which is a nice bonus!!). Eller wrote: > The next question is that my wife says Im getting worse faster than I > should be.I started started noticing a problem in 1999 with my walking > but coudnt find a Dr. to tell me what was wrong.I finally found one in > 2003 and after the usual test told me I had PLS at the end of 2003 and > had me quit work.I didnt get officially Dx until march 2004.Im still > walking with my cane and walker but get tired easily.I think Im doing > pretty good but my wife says Im going to fast for PLS.What do yall > think? > Your Friend; -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2005 Report Share Posted April 16, 2005 Hi and , I forgot to mention my neuro started me on LDN 3.0mg., I'm hoping to slow down or stop my progression........Jeannie/nj Re: Questions > > Hi , > > Very sorry to hear you are getting worse faster than your wife thinks > you should be. At the risk of harping on about it, if progression > really concerns you then you should try LDN (low dose naltrexone) which > has been mentioned on here plenty of times in the last year or more. It > is probably the only thing out there that may stop progression. As well > as a few PLSers like myself using it with good results I also know > people with ALS who are taking it and it has even significantly slowed > or stopped their progression. In many cases it has actually improved > some symptoms (which is a nice bonus!!). > > > > Eller wrote: > > > The next question is that my wife says Im getting worse faster than I > > should be.I started started noticing a problem in 1999 with my walking > > but coudnt find a Dr. to tell me what was wrong.I finally found one in > > 2003 and after the usual test told me I had PLS at the end of 2003 and > > had me quit work.I didnt get officially Dx until march 2004.Im still > > walking with my cane and walker but get tired easily.I think Im doing > > pretty good but my wife says Im going to fast for PLS.What do yall > > think? > > Your Friend; > > -- > > . > ,-._|\ Covington > / Oz \ > \_,--.x/ > v > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2005 Report Share Posted April 16, 2005 Hi and , I forgot to mention my neuro started me on LDN 3.0mg., I'm hoping to slow down or stop my progression........Jeannie/nj Re: Questions > > Hi , > > Very sorry to hear you are getting worse faster than your wife thinks > you should be. At the risk of harping on about it, if progression > really concerns you then you should try LDN (low dose naltrexone) which > has been mentioned on here plenty of times in the last year or more. It > is probably the only thing out there that may stop progression. As well > as a few PLSers like myself using it with good results I also know > people with ALS who are taking it and it has even significantly slowed > or stopped their progression. In many cases it has actually improved > some symptoms (which is a nice bonus!!). > > > > Eller wrote: > > > The next question is that my wife says Im getting worse faster than I > > should be.I started started noticing a problem in 1999 with my walking > > but coudnt find a Dr. to tell me what was wrong.I finally found one in > > 2003 and after the usual test told me I had PLS at the end of 2003 and > > had me quit work.I didnt get officially Dx until march 2004.Im still > > walking with my cane and walker but get tired easily.I think Im doing > > pretty good but my wife says Im going to fast for PLS.What do yall > > think? > > Your Friend; > > -- > > . > ,-._|\ Covington > / Oz \ > \_,--.x/ > v > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2005 Report Share Posted April 16, 2005 Hi and , I forgot to mention my neuro started me on LDN 3.0mg., I'm hoping to slow down or stop my progression........Jeannie/nj Re: Questions > > Hi , > > Very sorry to hear you are getting worse faster than your wife thinks > you should be. At the risk of harping on about it, if progression > really concerns you then you should try LDN (low dose naltrexone) which > has been mentioned on here plenty of times in the last year or more. It > is probably the only thing out there that may stop progression. As well > as a few PLSers like myself using it with good results I also know > people with ALS who are taking it and it has even significantly slowed > or stopped their progression. In many cases it has actually improved > some symptoms (which is a nice bonus!!). > > > > Eller wrote: > > > The next question is that my wife says Im getting worse faster than I > > should be.I started started noticing a problem in 1999 with my walking > > but coudnt find a Dr. to tell me what was wrong.I finally found one in > > 2003 and after the usual test told me I had PLS at the end of 2003 and > > had me quit work.I didnt get officially Dx until march 2004.Im still > > walking with my cane and walker but get tired easily.I think Im doing > > pretty good but my wife says Im going to fast for PLS.What do yall > > think? > > Your Friend; > > -- > > . > ,-._|\ Covington > / Oz \ > \_,--.x/ > v > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 Jeannie, Good that you haven't had any problems due to the filler, although that only happens in a very small number of cases. I only mentioned it in case you weren't on the lowdosenaltrexone Yahoo group and weren't aware of the possibility. As a matter of interest what filler has the pharmacist used? I am only concerned that you have noticed no change. If that means even no extra stiffness or slight insomnia as most people have for a few days at first then I wonder whether the pharmacist has used a slow release filler (which calcium carbonate can become if packed too tightly) and destroyed the effectiveness of the LDN. If no change only means no improvement then please don't be concerned as the primary aim of LDN is to slow/stop progression - any actual improvements are considered a bonus. If the filler is OK and you already don't have any issues with stiffness or insomnia then based on what I have read from other people I would think you could go to 4.5mg fairly soon. I stuck to 3.0mg for 3 months as my capsules were all 3.0mg. The jury is out on whether there is too much inaccuracy involved in trying to halve a capsule to get 1.5mg so that you can take a 3.0mg and half another to get your 4.5mg total, because even if you can split the contents of a capsule in half precisely you don't know how well mixed through the filler the naltrexone is. Therefore I waited to go to 4.5mg until I got my second lot made up and had them made up in 1.5mg capsules so that I could take 3 to get 4.5mg but drop back to 2 for 3.0mg if 4.5mg made me too stiff or something. It didn't, so now I just get 4.5mg capsules. However, if you have 3.0mg capsules and want to try to get to 4.5mg soon then there is one way to do it fairly accurately and that is just to empty the contents of a 3.0mg capsule in a known volume of (preferably distilled but doesn't really matter) water in a small, shakeable container. Shake the container and drink exactly half the known volume to get 1.5mg then take another 3.0mg capsule. Voila! :-) Milk thistle is also known as St 's Thistle (botanical name Silybum marianum as it is also referred to in many herb products). See http://www.globalherbalsupplies.com/herb_information/st_marys_thistle.htm for info on it. Any good health food shop should have heaps of products with it in. For about 5 or 6 years I have been taking one over here called Liv-Pro in which that is the major component and could explain why given I have PLS and also use LDN I don't suffer from much stiffness. In fact I am probably less stiff now on LDN than I was before it because it seems to have helped me use my muscles better. Jeanne Young wrote: > Thanks for the info. So far , its been about a week, no nausea,no > changes yet, how long should you wait before moving up to 4.5mg? I > started > getting these strong muscle spasms in my legs about 6 weeks ago. > After I've > been sitting in my power chair, or any chair, even my lift chair, both > legs > will straighten out as far as they can, toes turn down as tight as > they can, > the muscles go up the back of my legs all the way to my waist, pulling me > to the edge of the chair, trying to pull me right out of the chair. It > happened when I was at the neuro's office, he said it was spasticity, > really > bad, the extensor muscles. He increased my Baclofen from 30mg. to > 50mg. per > day. He said if that doesn't help to let him know and he would prescribe > Zanaflex. I think these spasms are happening more this week. I think > they > are the cause of my low back pain at nite as soon as I lie down it > starts, > I do not get the spasms while I'm asleep, but the only way I can sleep > is to > sit up with alot of pillows. I started to try lowdosenaltrexone last year > when everyone was jumping on the bandwagon and I discussed it with my > neuro, > we decided to wait and see how others responded to it, and then things > quieted down, didn't hear much more about around here. Anyone that > did try > it said they couldn't tell any difference. The next thing I heard was > they > haven't progressed, but I have. So I told my neuro this and said ok, lets > try it. I'm glad you think my neuro is good, I think he is, but > after all > the stories I've heard about other neuros, I'm cautious. Also, where > would > I find this milk thistle? I've never heard of it, but if it would > help with > these spasms/stiffness I might give it a try. Thanks again.....Jeannie/nj -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Robyn, There are people, like you, that are unaware of being in afib. That has always amazed me. I always knew immediately when I went into afib. Try to imagine a bunch of fish flopping around in your chest. I'm not exactly sure why some feel it and others don't. Intensity? Heart rate? I have not heard of Dr. Young but CC is a top-notch facility. One of the best in the country. robert/nsr in nyc > > how do you know you are in a fib? they tell me i am in constant afib but i > dont feel it.i do feel exhausted,and every once in awhile i feel like my heart > is being squeezed.i have an app at cleveland clinic on nov 2 nd with james b > young,they say he is the best but i have no idea about these people.any help > would be appreciated > robyn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 i have never heard of the meds you guys are talking about,which is probably just as well i take so many, coreg 2 x daily.... diovan 2 x plavix 1x alltace 2x antera 1x lasix 80 mg as many as 6 a day(never have taken this many,i think they are nuts) coumidin 5 mg 1 x digoxin 1 x folgard 2x levoxyl 1x clonazepam 1x zyrtec 1 x cimetiaine 1x hydroxyzine 3x magnesium oxide 3x metformin 2x.............you ought to see what they have taken me off of robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 i have never heard of the meds you guys are talking about,which is probably just as well i take so many, coreg 2 x daily.... diovan 2 x plavix 1x alltace 2x antera 1x lasix 80 mg as many as 6 a day(never have taken this many,i think they are nuts) coumidin 5 mg 1 x digoxin 1 x folgard 2x levoxyl 1x clonazepam 1x zyrtec 1 x cimetiaine 1x hydroxyzine 3x magnesium oxide 3x metformin 2x.............you ought to see what they have taken me off of robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 i have never heard of the meds you guys are talking about,which is probably just as well i take so many, coreg 2 x daily.... diovan 2 x plavix 1x alltace 2x antera 1x lasix 80 mg as many as 6 a day(never have taken this many,i think they are nuts) coumidin 5 mg 1 x digoxin 1 x folgard 2x levoxyl 1x clonazepam 1x zyrtec 1 x cimetiaine 1x hydroxyzine 3x magnesium oxide 3x metformin 2x.............you ought to see what they have taken me off of robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 I was wondering if anyone has had liver problems becuase of their celiacs and also wondering, and this is kind of gross, but bear with me......Is is common with celiacs to have a bm just 1/2 to an hour after you eat??? Stools are yellow. Very strange. I appreciate any help! Zanna <>< http://groups.yahoo.com/group/Art_on_A_Budget/ My daily rantings! www.zannasstory.blogspot.com My picture trail: www.picturetrail.com/xanadoodles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 Hi Zanna, I, too, have liver problems. Actually, it was because of my liver problems that puzzled my dr. Due to my health issues and my blood work results, they started running more and more tests. I don't know the answer to your other questions. But, I've heard it's normal for people to use the restroom 1/2 to an hour after they've eaten. I don't think that's necessarily Celiac related. About the color, it could be because of the foods you've eaten. I'm sorry I can't be of more help. CherylZanna wrote: I was wondering if anyone has had liver problems becuase of their celiacs and also wondering, and this is kind of gross, but bear with me......Is is common with celiacs to have a bm just 1/2 to an hour after you eat??? Stools are yellow. Very strange.I appreciate any help! Zanna <><http://groups.yahoo.com/group/Art_on_A_Budget/My daily rantings!www.zannasstory.blogspot.comMy picture trail: www.picturetrail.com/xanadoodles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 I recommend finding a very good nutritionist who is expert in celiac to help you navigate this one. You’ll really need to monitor carefully. I don’t know why you would avoid the biopsy while pregnant, except maybe for the anesthetic. I don’t know if that’s a big problem. Are your blood tests positive? If they’re clear, you might as well skip the endo and try the diet. If you see symptoms clearing up right away, your path is clear! Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of lynxigirl2005 Sent: Friday, June 09, 2006 1:18 PM To: SillyYaks Subject: questions I am in the process of being diagnosed with celiac. My mother had it and I have a ton of symptoms. I have some questions though. I have rcently been diagnosed type 1 diabetic. Are any of you type 1? How do you, or do you adjust your insulin for the increase in carbs since celiacs use more carb flours? My other question is that my biopsy is scheduled for the 16th and 3 days ago found out that I am pregnant. I am scared not the have the biopsy because I've been so sick and need the celiac diagnosis to figure out what is going on with me. How will all of this affect each other????? Tara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 I've heard that it was pretty common for people with CD to have liver problems. Also with people with gluten sensitivities as well. Personally, I never had any serious problems with my liver, but every time the doctors did blood work, my liver enzymes were always slightly elevated until I had been off of gluten for a few weeks. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Diane Sad you need us, but glad you found us. When I was first diagnosed in March 2006, i thought i had one year left. I like to garden, but wouldn't plant anything that would take a long time to bloom, since i didn't know if i would be here to see the flowers. I'm still here and still planting. Although i did make the garden in the front of my house easy care, just in case i have a transplant and can't work in the garden. I hope your doctor recommends pulmonary rehab. Learning about the diseases and staying in shape are very important aspects of dealing with this disease.Pink Joyce IPF 3/06 Pennsylvania Subject: questionsTo: Breathe-Support Date: Friday, October 24, 2008, 10:54 AM Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Diane Sad you need us, but glad you found us. When I was first diagnosed in March 2006, i thought i had one year left. I like to garden, but wouldn't plant anything that would take a long time to bloom, since i didn't know if i would be here to see the flowers. I'm still here and still planting. Although i did make the garden in the front of my house easy care, just in case i have a transplant and can't work in the garden. I hope your doctor recommends pulmonary rehab. Learning about the diseases and staying in shape are very important aspects of dealing with this disease.Pink Joyce IPF 3/06 Pennsylvania Subject: questionsTo: Breathe-Support Date: Friday, October 24, 2008, 10:54 AM Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane Quote Link to comment Share on other sites More sharing options...
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