Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 I want to thank you for that page and info. I and my sister wee talking about that tonight and we are both just thankful to be healthy and not that we intend to be skinny at all. JUST HEALTHY is fine with us. Sharon Lee Carlisle/Mistklady Ü Post-op August 11, 2000 post 343- present 190- 1st goal 160 <A HREF= " http://www.geocities.com/tricia_810/mgb/mgbpics.html " >http://www.geocities\ ..com/tricia_810/mgb/mgbpics.html</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 That was the most honest and amazing thing I have read in regards to WLS. My goal weight is 180. How I came up with that number is by taking the weight I figured was about my ideal weight (not the ins. charts because they are too low in my opinion) and I guessed that to be healthy and average, for my body, I should weigh about 160. But by the ins. charts, which is where they get their numbers, I was close to 200lbs overweight. I figured that 70% of my excess weight was around 140lbs...so if I lost that, that would put me at 182lb. And maybe I've been fat too long, but 180 was a lot healthier than 322, so that became my goal. At 180 before, I thought myself huge. But I was active and had good health. So that number represents all I dream of for me....not some hot babe, just simply a woman who can get from point a to point b without huffing and puffing, to go to my daughter's school and not have all the other kids make fun of me to her later, hurting her...to make love to my husband and not feel so inhibited. I believe those things will happen for me. I am doing, to the best of my ability, all I can to ensure they do. If I only get close, heck that would work too! Because I am already so much healthier and happier that I have NO RIGHT to complain. Some of my friends worry worry worry about every bump in the road. Heck, I was over 300lbs for quite a while. If it takes me 2 years to get below 200, well it won't be the happiest news of my life, but I didn't sign up for miracles, just a tool that allows them to happen when I apply it to my life. AND I HAVE THOSE MIRACLES already. Mother said the only difference between problems and opportunities are in how we look at them. I have always kept that with me. I forget it, but it comes back to me when I need it most. Sure I can say " Hey, I have so much more to lose. Dang, it might not happen " or I can say, " I'm already half way there> My gosh it was EASY. That tool gave me the discipline I needed. Now I can do all the things I said I would do if I could. " And do them. Each day is a gift. I have been blessed by a sense of health I never dreamed I'd ever see again. Some days, heck, I don't appreciate it one bit. I forget how far I've come, and how easy it was to make the trek. I keep a MIRACLE stone I bought right after surgery in my coin pocket. It helps me to stop and think that I AM A MIRACLE and not because I'm smart, pretty, nice, have good posture or don't bite my nails. Because I didnt' deserve ANY of it. It was a gift. All I did was ask for it, and reach out and accept it in my life. I've reached the halfway point. Where I go from here, it's up to me and my efforts. But how I got here? It was a GIFT. Expectations? I expect I'll forget this when I hit a plateau. When I am tired and feeling defeated. When I CRAVE MORE MORE MORE as I am very capable of doing. And it is then that Mother 's words will come back to me, whispering the truth in my sometimes dense ear: It's all in how you see it. I hope I see it clearly. Flo, thanks for always helping us see the truth. Yes, we have an awesome tool inside of our bodies that works when we use it properly and combine it with good habits. But we also have an added bonus: Someone like you to keep our heads on straight. You are another tool that makes us MGBers have the best toolbox around! Thank you so much, in Ark 3-08 322-245 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 Hi Gang: It's amazing to me that some of us expect to be thin and at goal when we have surgery. Because we are not promised this by Dr. Rutledge or by any other surgeons that I am aware of. We are promised a tool which will help us lose weight. We have all failed at every other method but surgery...at least we've failed at keeping weight off long term. So perhaps we need to talk about adjusting our expectations. (There's a saying in Al-Anon that " expectations are premeditated resentments). I think it's true here. If we expect to be thin because we've had surgery, we're setting ourselves up for disappointment and resentment. Because we haven't been told we can EXPECT to be thin. We've been promised a tool to help us get there. Here's a few excerpts from wls sites: From: http://www.thinnertimes.com/Expectations.htm Weight Loss Expectations Most studies suggest that patients lose about 2/3 to 3/4 of their excess weight over the first two years. Longer term studies have shown that on average patients keep off at least 1/2 of the excess over 5 to 15 years. Thus there is often some weight regain after the first two years, but patients are much less obese even long after surgery. The weight change for a large group of patients from Dr. Callery's practice are shown on the outcomes graph From: http://www.drrossfox.com/gastrby.html In our series, the results are very impressive. At five years, the average weight loss is 89% of the excess. This means that our average GBP patient is at normal or near-normal weight five years are the surgery. From the Alvarado Site: Weight loss is excellent, averaging 80% of excess body weight after one year, and maintained at 80% for four years following surgery (for as long as the operation has been done this way). http://www.surgery.wisc.edu/patient/patient_obesity.html#Results You will lose weight rapidly after surgery (up to 6 pounds per week at first), and continue to do so for 18 to 24 months. At that time, your weight will begin to level out, most likely stabilizing at about 20 to 40 percent above your ideal body weight. In the 2 to 5 years following surgery, it is common to regain some lost weight, but few patients ever regain it all. Of course, your diet and activity level after surgery will have an effect on how much weight you ultimately lose. http://www.georgetownsurgical.com/faq.html Q: How much weight can I expect to lose with gastric bypass surgery? A: Most patients will lose 50-70% of their excess body weight; some patients can lose more. The gastric bypass operation will limit the amount of food you take in, decrease the amount of calories consumed and make it so that you eat less but still feel satisfied. However, the gastric bypass operation will not do two very important things. It cannot make you exercise nor will it make you choose healthy foods to consume. If you exercise and eat healthy foods, your weight loss bariatric surgery can be significantly greater. Though the gastric bypass operation rarely gets people to their ideal body weight, most patients get within 30-40 pounds. Then Flo says: I have not found one site or Dr. that promises that we will definately reach our goal weight. I have not found one Dr. or site that says we won't regain. All stress it is a tool. All stress the importance of life change. So how is it we do expect to all get to our goal weight? Look at these excerpts....all admit that we probably won't get to ideal body weight. Maybe it's time we all accepted this fact. Maybe it's time we all figure that we're not going to be at goal...and should we make it there...it's gravy. Seems to me we can expect to get rid of most of our co-morbids. Seems to me we can expect to lose half to three quarters of our excess weight. Anything more than that appears to be gravy. We're gonna have plateaus. We're going to stop losing. We may even have regains to some degree. Every site says we WILL have regains at some point. Anything we get from surgery is better than we had before surgery. Oh, and by the way, we are human so it's certainly ok to whine about whatever we want to whine about. As long as we don't do a bunch of negative self-talking (to ourselves). Talking negatively in our heads is not healthy for us! I'm so glad to have all of you to share this journey with. It's exciting...and at times scarey. Just the reality that I may someday put ANY of this flab back on is chilling to me. I don't wanna. And yet at times I'm powerless to change my eating habits in any way except quantity. I think looking at these sites I see what they're saying in a whole new way. A way in which I don't want to see them...but it's real and it's all there to read. This is a TOOL not a panacea. There's no promise to get to goal; there's no promise to stay there. We're promised help as we've never had it before. Nothing more. Sigh Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Flo, thanks! Once again, you have straighten out my thinking and got me started in the right direction again. I think you have done that for me, simply with your postings, maybe 10 times since my surgery last August! Thanks! I have finally broken my plateau, I have lost another 5 lbs. The first in several months! Hallaleuhyaaaaaaa! I don't know what did it.I suspect it was reading the positive posts here and applying everything I read. Of course, now I'll never know what exactly did the trick, but " positive thinking " had a lot to do with it in my opinion. Thanks to all of you who responded and read my discouraged posts inthe past few months. Dinah in Ala mgb 081601 291/236 > Hi Gang: > It's amazing to me that some of us expect to be thin and at goal when we have surgery. Because we are not promised this by Dr. Rutledge or by any other surgeons that I am aware of. We are promised a tool which will help us lose weight. We have all failed at every other method but surgery...at least we've failed at keeping weight off long term. So perhaps we need to talk about adjusting our expectations. (There's a saying in Al-Anon that " expectations are premeditated resentments). I think it's true here. If we expect to be thin because we've had surgery, we're setting ourselves up for disappointment and resentment. Because we haven't been told we can EXPECT to be thin. We've been promised a tool to help us get there. > > Here's a few excerpts from wls sites: > > From: http://www.thinnertimes.com/Expectations.htm > Weight Loss Expectations > > Most studies suggest that patients lose about 2/3 to 3/4 of their excess weight over the first two years. Longer term studies have shown that on average patients keep off at least 1/2 of the excess over 5 to 15 years. Thus there is often some weight regain after the first two years, but patients are much less obese even long after surgery. The weight change for a large group of patients from Dr. Callery's practice are shown on the outcomes graph > > From: http://www.drrossfox.com/gastrby.html > > > In our series, the results are very impressive. At five years, the average weight loss is 89% of the excess. This means that our average GBP patient is at normal or near-normal weight five years are the surgery. > > From the Alvarado Site: > > Weight loss is excellent, averaging 80% of excess body weight after one year, and maintained at 80% for four years following surgery (for as long as the operation has been done this way). > > http://www.surgery.wisc.edu/patient/patient_obesity.html#Results > You will lose weight rapidly after surgery (up to 6 pounds per week at first), and continue to do so for 18 to 24 months. At that time, your weight will begin to level out, most likely stabilizing at about 20 to 40 percent above your ideal body weight. > In the 2 to 5 years following surgery, it is common to regain some lost weight, but few patients ever regain it all. Of course, your diet and activity level after surgery will have an effect on how much weight you ultimately lose. > > http://www.georgetownsurgical.com/faq.html > > Q: How much weight can I expect to lose with gastric bypass surgery? > A: Most patients will lose 50-70% of their excess body weight; some patients can lose more. The gastric bypass operation will limit the amount of food you take in, decrease the amount of calories consumed and make it so that you eat less but still feel satisfied. However, the gastric bypass operation will not do two very important things. It cannot make you exercise nor will it make you choose healthy foods to consume. If you exercise and eat healthy foods, your weight loss bariatric surgery can be significantly greater. Though the gastric bypass operation rarely gets people to their ideal body weight, most patients get within 30-40 pounds. > > Then Flo says: > > I have not found one site or Dr. that promises that we will definately reach our goal weight. I have not found one Dr. or site that says we won't regain. All stress it is a tool. All stress the importance of life change. So how is it we do expect to all get to our goal weight? Look at these excerpts....all admit that we probably won't get to ideal body weight. > > Maybe it's time we all accepted this fact. Maybe it's time we all figure that we're not going to be at goal...and should we make it there...it's gravy. > > Seems to me we can expect to get rid of most of our co-morbids. Seems to me we can expect to lose half to three quarters of our excess weight. Anything more than that appears to be gravy. > > We're gonna have plateaus. We're going to stop losing. We may even have regains to some degree. Every site says we WILL have regains at some point. Anything we get from surgery is better than we had before surgery. > > Oh, and by the way, we are human so it's certainly ok to whine about whatever we want to whine about. As long as we don't do a bunch of negative self-talking (to ourselves). Talking negatively in our heads is not healthy for us! > > I'm so glad to have all of you to share this journey with. It's exciting...and at times scarey. Just the reality that I may someday put ANY of this flab back on is chilling to me. I don't wanna. And yet at times I'm powerless to change my eating habits in any way except quantity. > > I think looking at these sites I see what they're saying in a whole new way. A way in which I don't want to see them...but it's real and it's all there to read. This is a TOOL not a panacea. There's no promise to get to goal; there's no promise to stay there. We're promised help as we've never had it before. Nothing more. > > Sigh > > Flo > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Flo, That is so well written and just the voice of calm we needed to hear! I hope to meet you at the picnic and tell you how wonderful you are! I have always looked carefully at just these statistics and have always known that this surgery offered me no guarantee. I originally thought that if I could get back to my lowest weight as an adult (which I obtained VERY briefly - much like Oprah - right before I got pregnant 7 years ago) I would be happy. Well, I have passed that and now I want more of course. I think I want more because I know that I can have it if I work for it! I have been a member of WW for years and I still attend weekly meetings. I don't journal every day but if I have more than a couple of weeks where I don't lose anything or not much I get my journal back out. Some of you may think that sounds too close to the " dieting " that all of us failed at before. However, I use it as a tool to keep my food habits in line. I believe with everything in me that if I continue with WW I will get to my goal weight because from a scientific standpoint if I stay within my points range consistently (which I do believe it or not even with my small stomach) there is no reason why I shouldn't reach my goal and more importantly using the tools that I have (what I have learned and my MGB) to stay there! I have recently joined Curves too (and my father and his future wife may be opening one which would be wonderful!) and that will help even more. I have never been considered a " fast loser " and have been " average " all along. Some weeks I lose well, some weeks I don't. WW says you should only expect to lose 1-2 pounds MAX per week (hear that Cheryl so you are doing fine!) and if I do that consistently I will be happy. The good news is that with the MGB staying with the program is no longer a struggle. As for the fact that pretty consistently studies will tell you to expect to lose 80% of your excess body weight. I went into this with about 150 pounds of excess weight - isn't that an awful thing to write down! Well, I have now lost about 60% of it and only have about 30 pounds to go to get to 80%. That would leave me with about another 20 to my goal. Will I get all the way to my goal - I don't know. Will I get close - I believe so! Guys we have to take control over our lives. We did take control over part by making the decision to have the surgery. We now just have to control the rest which is strictly up to us! WE CAN DO THIS! in GA re: Re: Expectations > Hi Gang: > It's amazing to me that some of us expect to be thin and at goal when we have surgery. Because we are not promised this by Dr. Rutledge or by any other surgeons that I am aware of. We are promised a tool which will help us lose weight. We have all failed at every other method but surgery...at least we've failed at keeping weight off long term. So perhaps we need to talk about adjusting our expectations. (There's a saying in Al-Anon that " expectations are premeditated resentments). I think it's true here. If we expect to be thin because we've had surgery, we're setting ourselves up for disappointment and resentment. Because we haven't been told we can EXPECT to be thin. We've been promised a tool to help us get there. > > Here's a few excerpts from wls sites: > > From: http://www.thinnertimes.com/Expectations.htm > Weight Loss Expectations > > Most studies suggest that patients lose about 2/3 to 3/4 of their excess weight over the first two years. Longer term studies have shown that on average patients keep off at least 1/2 of the excess over 5 to 15 years. Thus there is often some weight regain after the first two years, but patients are much less obese even long after surgery. The weight change for a large group of patients from Dr. Callery's practice are shown on the outcomes graph > > From: http://www.drrossfox.com/gastrby.html > > > In our series, the results are very impressive. At five years, the average weight loss is 89% of the excess. This means that our average GBP patient is at normal or near-normal weight five years are the surgery. > > From the Alvarado Site: > > Weight loss is excellent, averaging 80% of excess body weight after one year, and maintained at 80% for four years following surgery (for as long as the operation has been done this way). > > http://www.surgery.wisc.edu/patient/patient_obesity.html#Results > You will lose weight rapidly after surgery (up to 6 pounds per week at first), and continue to do so for 18 to 24 months. At that time, your weight will begin to level out, most likely stabilizing at about 20 to 40 percent above your ideal body weight. > In the 2 to 5 years following surgery, it is common to regain some lost weight, but few patients ever regain it all. Of course, your diet and activity level after surgery will have an effect on how much weight you ultimately lose. > > http://www.georgetownsurgical.com/faq.html > > Q: How much weight can I expect to lose with gastric bypass surgery? > A: Most patients will lose 50-70% of their excess body weight; some patients can lose more. The gastric bypass operation will limit the amount of food you take in, decrease the amount of calories consumed and make it so that you eat less but still feel satisfied. However, the gastric bypass operation will not do two very important things. It cannot make you exercise nor will it make you choose healthy foods to consume. If you exercise and eat healthy foods, your weight loss bariatric surgery can be significantly greater. Though the gastric bypass operation rarely gets people to their ideal body weight, most patients get within 30-40 pounds. > > Then Flo says: > > I have not found one site or Dr. that promises that we will definately reach our goal weight. I have not found one Dr. or site that says we won't regain. All stress it is a tool. All stress the importance of life change. So how is it we do expect to all get to our goal weight? Look at these excerpts....all admit that we probably won't get to ideal body weight. > > Maybe it's time we all accepted this fact. Maybe it's time we all figure that we're not going to be at goal...and should we make it there...it's gravy. > > Seems to me we can expect to get rid of most of our co-morbids. Seems to me we can expect to lose half to three quarters of our excess weight. Anything more than that appears to be gravy. > > We're gonna have plateaus. We're going to stop losing. We may even have regains to some degree. Every site says we WILL have regains at some point. Anything we get from surgery is better than we had before surgery. > > Oh, and by the way, we are human so it's certainly ok to whine about whatever we want to whine about. As long as we don't do a bunch of negative self-talking (to ourselves). Talking negatively in our heads is not healthy for us! > > I'm so glad to have all of you to share this journey with. It's exciting...and at times scarey. Just the reality that I may someday put ANY of this flab back on is chilling to me. I don't wanna. And yet at times I'm powerless to change my eating habits in any way except quantity. > > I think looking at these sites I see what they're saying in a whole new way. A way in which I don't want to see them...but it's real and it's all there to read. This is a TOOL not a panacea. There's no promise to get to goal; there's no promise to stay there. We're promised help as we've never had it before. Nothing more. > > Sigh > > Flo > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Good for you, Flo! Dr. R has always stressed this. That is probably why he endorsed the Dean Ornish diet for us after this surgery. It is so easy for a while that we just get to thinking we don't have to do anything to attain the results we want. I have started a six-week high protein " diet " at Curves and the first week have dropped 5 lbs. so am hopeful that I can continue to lose if I am careful with what I eat. I have been on a plateau for months. I have also been doing Curves for 5 weeks now in addition to the water aerobics. I am going to try to maximize my " tool " in this coming year. At least " dieting " is easier, and I have found a program that I can live with. There is very little discipline needed, for me at least, with the Curves program, and they give you a life long plan to maintain that involves " dieting " two days a month. I also think that Weight Watchers is a good life-long plan. I really do believe that we can adjust more easily to what was very difficult prior to surgery. My 2 cent worth. Pat re: Re: Expectations Hi Gang: It's amazing to me that some of us expect to be thin and at goal when we have surgery. Because we are not promised this by Dr. Rutledge or by any other surgeons that I am aware of. We are promised a tool which will help us lose weight. We have all failed at every other method but surgery...at least we've failed at keeping weight off long term. So perhaps we need to talk about adjusting our expectations. (There's a saying in Al-Anon that " expectations are premeditated resentments). I think it's true here. If we expect to be thin because we've had surgery, we're setting ourselves up for disappointment and resentment. Because we haven't been told we can EXPECT to be thin. We've been promised a tool to help us get there. Here's a few excerpts from wls sites: From: http://www.thinnertimes.com/Expectations.htm Weight Loss Expectations Most studies suggest that patients lose about 2/3 to 3/4 of their excess weight over the first two years. Longer term studies have shown that on average patients keep off at least 1/2 of the excess over 5 to 15 years. Thus there is often some weight regain after the first two years, but patients are much less obese even long after surgery. The weight change for a large group of patients from Dr. Callery's practice are shown on the outcomes graph From: http://www.drrossfox.com/gastrby.html In our series, the results are very impressive. At five years, the average weight loss is 89% of the excess. This means that our average GBP patient is at normal or near-normal weight five years are the surgery. From the Alvarado Site: Weight loss is excellent, averaging 80% of excess body weight after one year, and maintained at 80% for four years following surgery (for as long as the operation has been done this way). http://www.surgery.wisc.edu/patient/patient_obesity.html#Results You will lose weight rapidly after surgery (up to 6 pounds per week at first), and continue to do so for 18 to 24 months. At that time, your weight will begin to level out, most likely stabilizing at about 20 to 40 percent above your ideal body weight. In the 2 to 5 years following surgery, it is common to regain some lost weight, but few patients ever regain it all. Of course, your diet and activity level after surgery will have an effect on how much weight you ultimately lose. http://www.georgetownsurgical.com/faq.html Q: How much weight can I expect to lose with gastric bypass surgery? A: Most patients will lose 50-70% of their excess body weight; some patients can lose more. The gastric bypass operation will limit the amount of food you take in, decrease the amount of calories consumed and make it so that you eat less but still feel satisfied. However, the gastric bypass operation will not do two very important things. It cannot make you exercise nor will it make you choose healthy foods to consume. If you exercise and eat healthy foods, your weight loss bariatric surgery can be significantly greater. Though the gastric bypass operation rarely gets people to their ideal body weight, most patients get within 30-40 pounds. Then Flo says: I have not found one site or Dr. that promises that we will definately reach our goal weight. I have not found one Dr. or site that says we won't regain. All stress it is a tool. All stress the importance of life change. So how is it we do expect to all get to our goal weight? Look at these excerpts....all admit that we probably won't get to ideal body weight. Maybe it's time we all accepted this fact. Maybe it's time we all figure that we're not going to be at goal...and should we make it there...it's gravy. Seems to me we can expect to get rid of most of our co-morbids. Seems to me we can expect to lose half to three quarters of our excess weight. Anything more than that appears to be gravy. We're gonna have plateaus. We're going to stop losing. We may even have regains to some degree. Every site says we WILL have regains at some point. Anything we get from surgery is better than we had before surgery. Oh, and by the way, we are human so it's certainly ok to whine about whatever we want to whine about. As long as we don't do a bunch of negative self-talking (to ourselves). Talking negatively in our heads is not healthy for us! I'm so glad to have all of you to share this journey with. It's exciting...and at times scarey. Just the reality that I may someday put ANY of this flab back on is chilling to me. I don't wanna. And yet at times I'm powerless to change my eating habits in any way except quantity. I think looking at these sites I see what they're saying in a whole new way. A way in which I don't want to see them...but it's real and it's all there to read. This is a TOOL not a panacea. There's no promise to get to goal; there's no promise to stay there. We're promised help as we've never had it before. Nothing more. Sigh Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Amen Sister Flo! No one ever promised me a rose garden... I remember in clinic, Dr. R said he " hopes " that the end result is that we never have to diet again... and he said he " hopes " we achieve the desired weight loss. But I was never, at any time, made any guarantees on losing a certain amount of weight, or told that I didn't need to make healthy food choices, or that I didn't need to exercise regularly. Before this surgery, I was worrying about not living past age 40. If my weight loss stops prematurely, I'll be extremely disappointed... and yes, I worry about that every day. My heart goes out to those who haven't lost all they want to lose, and feel they have somehow been failed by the surgery. I'm trying to avoid that mindset from the front end. I'm already 71 lb lighter than I was less than 4 months ago... and I know I am healthier, feel better, look better, and function at a higher level. I'm trying really hard to focus on rejoicing for what I am getting, and not putting too much pressure on myself to meet a certain expectation. I am alive, I am healthier, I am looking better, and I am much less likely of dying a young death. Thank God for miracles, even if I am still chubby when all is said and done. (KY) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 <<. I really do believe that we can adjust more easily to what was very difficult prior to surgery. My 2 cent worth. Pat>>> Exactly how I feel Pat. I feel that now the goal is obtainable. At 384, it was hopeless to me. At 196, getting to 160-170 is do-able. SO, the surgery has done what it should for me and I have to realize that I have to work at it also. NOW, I have the stamina and mental attitude (which I truly believe is the most important factor) to eat more sensibly and exercise, to lose some more weight. At 384, exercise was just not possible to any extent. NOW, I can do it. BUT the secret is, " I CAN DO IT " . I am in control of what effort I put into this. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Flo, Thanks so much for the reality check. I knew this when i was researching WLS and the idea of getting half to 3/4 of this killer load off of me was almost inconcievable this time last year. Since fall, I have not be reminded of this truth and have seen enough people reach goal that it became very frustrating thinking I am failing at not moving any faster and sitting at these plateaus. Keep us in line:) Laurie 9/20/00 319/220 (up and down the same last 5 lbs over and over the past 8 weeks!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 That's a neat idea. I'm going to save this! Christie *Momi* of Sara 9, Sabaa 6, Alia 5, Hana 3 mos (DS/Complete AV Canal Defect scheduled to be repaired July 31st) and Lily the cat!!! On Mon, 8 Jul 2002 01:35:13 EDT RSYOSH@... writes: > In a message dated 7/7/02 9:29:23 AM Pacific Daylight Time, > sbntwong@... writes: > > > > Hi, I have always (I thought) had high expectations of tims > abilities, while > > allowing for the reality that he has significant difficulties > learning. I > > was talking with a friend today about his new teacher and how she > started > > off in his first week by sending home 10 new spellings. I left it > that > > week anticipating the need to go in the following week to say > thanks for > > the expectations but really 10 weekly is beyond tims capability. > I thought > > they tested on a monday giving him a full week to learn them, but > they send > > the words out on monday for a friday test. Anyway, that first > week he got > > 8 right, he repeated the two wrong ones in his next list of 10 and > again > > got 8 the next week. This week he got all 10 correct including > night, time > > and home, all non phonetic words. I am so impressed with him. At > his last > > school he got about 3-5 words every 2-3 weeks and he got a lot of > those > > wrong week after week. But here he practices spellings every > morning at > > school and also at home. I don't know yet whether he has retained > these > > spellings! expectations really do affect performance. > > > > sue wong > > > > Thanks for both your encouraging words regarding getting my daughter > to > read..and this story! > > I've decided that we've been expecting too little from my daughter > as well. > Both myself and the school have been trying to get her to recognize > one sight > word at a time, and slowly build her sight vocab. It's been slow > and > erractic. > > Instead I've decided to take a much more aggresive approach... I've > > constructing sentences using file cards (one word per file card). > Every > activity we do I'm constructing sentences, and practicing touch the > words and > reciting the sentences. Then I pick several words within the > sentence and > ask her to find them. If she has trouble (picks the wrong word or > hesitates) > I show her and then ask again, so she can be immediately successful. > > SOmetimes I scramble the words and help her put them back in the > right order. > > Examples of sentences from today: > (when we went swimming) > > Let's go to the pool > Let's go swimming > Let's go swimming at the pool > > (when we got back) > We went to the pool > We went swimming > We went swimming at the pool > > (while sitting in the bathtub and looking at the cat box) > Kitty's poop is in the kitty's potty (this one is now tacked up on > the wall > over the cat box!) > > I'm not waiting for her to be totally proficient on a sentence > before > introducing new sentences. I want her to get a feel for how > universal > reading (and writing) are. Every time an event comes up I create a > sentence > about it. I'm starting write a lot of words at her request. > > Already (in just a few days doing this) she is picking up words she > has not > been able to memorize before, like " the " . Nouns were Ok in the > past, but > articles and prepositions have been a problem (hard to visualize > them > conceptually!) But now that I'm using whole sentences, and she can > SEE the > function of those words, it'sstarting to click. It's very exciting! > > Anyway... > > I'm seeing more and more how using those typical babystep building > blocks to > measure our kids can do them a great disservice. the bigger the > picture, the > more they see the pragmatics, the more they love the process. I'm > not even > having to bribe her with Goldfish and M & M's anymore! > > - Becky > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 What is an RIBb test? Lyra > Your story makes me feel like crying. First of all, the > Western Blot and ELISA are useless for diagnosing Lyme > disease. Flipping a coin would give you as reliable a > result. If you want to find out if you have Lyme disease, > have the RIBb test run -- a doctor will have to order it, > and insurance will not cover it ($200): Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Lyra wrote: What is an RIBb test? Hi Lyra, This test uses labelled antibodies which are specific for the Lyme spirochete. UV light makes the antibodies glow green if they have attached to a Lyme spirochete or a group of spirochetes (an " L body " for eaxmple). The RIBb is a direct test for the presence of Lyme, as opposed to the Western Blot and ELISA which try to find antibodies which have been generated by the body in response to the presence of the spirochete, (or as the result of some " autoimmune disease " ). Jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Thanks for the info...do you know what labs would perform the test? Lyra > > What is an RIBb test? > > Hi Lyra, > > This test uses labelled antibodies which are > specific for the Lyme spirochete. UV light > makes the antibodies glow green if they have > attached to a Lyme spirochete or a group of > spirochetes (an " L body " for eaxmple). > > The RIBb is a direct test for the presence of Lyme, as > opposed to the Western Blot and ELISA which try to find > antibodies which have been generated by the body > in response to the presence of the spirochete, > (or as the result of some " autoimmune disease " ). > > Jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2002 Report Share Posted July 20, 2002 Lyra wrote: ....do you know what labs would perform the test? Hi Lyra, As far as I know, only the Bowen Lab does the RIBb test -- a doctor will have to order it, and insurance will not cover it ($200): JoAnn Whitaker, M.D. Bowen Research and Training Institute, Inc. P.O. Box 627 Palm Harbor, Florida 34682 Tel: 727-937-9077 Fax: 727-942-9687 http://www.bowen.org/research/research_lyme_cuba.html mailto:bowanresearch@... Jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 I'm so sorry to hear that Christian is having a bad week. I think that the tapering is really hard, especially around the 5mg range (in my experience). We cut the taper to smaller increments with a bit longer in between, which seemed to help. But we also increased the mtx to 20 mg subcutaneous (from 15 oral). I personally think that this is what did the trick. It's hard to know what to push for sometimes, and to be the one who is having to be "on top of it" all the time. I know some kids on the list have had trouble with that dose, but Christian is older and bigger than a lot of them, which may be a factor in one's ability to tolerate it. Teddy is also on Voltaren in addition to the mtx -- is on any NSAIDs? With regard to expectations, this is something we've really had to come to terms with. As you know, the contact sports were nixed, but other sports were not. Teddy played majors baseball and did fairly intense swimming once the jra got under control. That was starting around March of last year (diagnosed that Nov). Granted that he has poly, and that may be a totally different situation than systemic. But he's had a lot of success in sports since his diagnosis; he even made junior olympics in swimming this winter. We did make some big mistakes though, that all could learn from. He was playing and swimming just like everyone else and not doing anything extra. What he should have been doing was protecting his joints by doing more stretching etc than everyone else, before practice and at home. Because we got complacent (as parents) and thought he was back to normal, we didn't push on that at all . It was really dumb, because he injured his shoulder and has had to be in PT for the last 2 months. The PT told us that he has to learn to "read" his body and act accordingly, using stretching, heat and ice etc. There are often days with aches and pains, but these things usually take care of it. This has been the hard part, to get a 12 year old to think in that way. I guess my point is that if you can readjust to sports that aren't hard on the joints, there is no reason to have lowered expectations, once you are over this initial hideous phase. Try not to get discouraged, it will get better. My thoughts and prayers are with you. hh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 , n is 15 with systemic jra. She is doing okay now after a bad flare in January and February where she had to go back on the prednisone. She is now on 5mg and I hope to reduce her 1/2 mg a week. She is in school full time and on the track team. When she is doing well, she is near normal. She does not have the energy of her younger sister who is 13. Until n goes into remission, she does have a chronic disease and there are symptoms. She requires more sleep and when she does have a busy day she suffers a bit more, but it is not a terrible suffering. When I go out and garden in the Spring I get sore and am a bit more tired the next day. That is kind of how n is. I don't panic(usually) and have learned to ignore it some. That might sound harsh, but I can't get into every ache she has 24 hours a day, or I wouldn't survive. I don't know if I am making sense, but one has to gently let go a bit. That doesn't mean that there aren't times that I am overwhelmed with worry about her. Those times are just less often now after five years. After five years though I can tell when she is tired and needs to go to bed, and I will insist on it. I never have to put her 13 year old sister to bed. (n, 15, systemic) Expectations I'm struggling to figure out what is acceptable and expected "aches" and what should be reported and not acceptable , especially for those is the tapering process. I guess what I'm trying to ask is "Can I expect my son to return to his activty level prior to the JRA with no pain or do we need to expect that he will always have limitations, increased pain/fatigue especially after activty? The Doc said he would anticipate increased tiredness or aches after activity but it shouldn't be to the level that it interfers with life. To me, anything less than what Christian was prior to the JRA is interferring with life, am I never going to see him back to what he was and if that's the case I would like to know so that I can readjust my expectations. I sometimes wonder if I'm living in "la la land" and expecting him to do everything he used to with no pain and it's becoming frustrating for me and him. I remember being told that the prednisone would take all the pain away (not from our recent Doc) and that once the MTX kicked in, Christian would be great. OK, I'm still waiting. Ladies, give me the real take...I'm ready to hear it. How long does it take? Should I be advocating for an adjustment in the MTX? UGH. UGH....says it all.Thanks (Christian 12 yrs old, systemic 12/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Hi , I think you just asked the million dollar question.I will never forget the rheumy saying the pred is just until the MTX kicks in. was at 25mg at 3yrs old and still couldn't get off the pred,couldn't get below 9mg without fever and rash.Due to unavailability of Enbrel they went ahead and maxed him out on Plaquenil.Tried that for 6 months and still nothing.It was always the same thing.Flare and back to high doses pred then rapidly tapering 3 mg a week pred until another flare.Added Enbrel finaly to the 25mg MTX and 200mg Plaquenil and that done the trick.No more pred,Ibuprofin or Plaquenil.Tapering the MTX every other month,with 15 doses to go. has had no arthritis symptoms for 16 months but he can still overdo it.If he plays to hard he gets muscle pains in his legs but always gone by morning. Alot has to do with what you are comfortable with.Once I found this list and what doses others were taking I wasn't as scared of the drugs.I always told s rheumy that I wanted to increase the MTX and for him to do whatever it took to get him back.Up whatever and add whatever.I think they feel more comfortable knowing that the mom has done her research and has some knowledge and comes to them and questions them.Before this list the rheumy would do what he wanted and I would just agree and leave thinking it will never get better. was treated more aggressively once I started questioning things. Hugs and prayers for Christian Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Thanks for your insight. Maybe things are challenging for Christian because I don't think he's technically still in the " onset " period. I look forward to getting out of this phase. Thanks > , n is 15 with systemic jra. She is doing okay now after a bad flare in January and February where she had to go back on the prednisone. She is now on 5mg and I hope to reduce her 1/2 mg a week. She is in school full time and on the track team. When she is doing well, she is near normal. She does not have the energy of her younger sister who is 13. Until n goes into remission, she does have a chronic disease and there are symptoms. She requires more sleep and when she does have a busy day she suffers a bit more, but it is not a terrible suffering. When I go out and garden in the Spring I get sore and am a bit more tired the next day. That is kind of how n is. I don't panic(usually) and have learned to ignore it some. That might sound harsh, but I can't get into every ache she has 24 hours a day, or I wouldn't survive. I don't know if I am making sense, but one has to gently let go a bit. That doesn't mean that there aren't times that I am overwhelmed with worry about her. Those times are just less often now after five years. After five years though I can tell when she is tired and needs to go to bed, and I will insist on it. I never have to put her 13 year old sister to bed. (n, 15, systemic) > Expectations > > > I'm struggling to figure out what is acceptable and expected " aches " > and what should be reported and not acceptable , especially for > those is the tapering process. I guess what I'm trying to ask > is " Can I expect my son to return to his activty level prior to the > JRA with no pain or do we need to expect that he will always have > limitations, increased pain/fatigue especially after activty? The > Doc said he would anticipate increased tiredness or aches after > activity but it shouldn't be to the level that it interfers with > life. To me, anything less than what Christian was prior to the JRA > is interferring with life, am I never going to see him back to what > he was and if that's the case I would like to know so that I can > readjust my expectations. I sometimes wonder if I'm living in " la > la land " and expecting him to do everything he used to with no pain > and it's becoming frustrating for me and him. I remember being told > that the prednisone would take all the pain away (not from our > recent Doc) and that once the MTX kicked in, Christian would be > great. OK, I'm still waiting. Ladies, give me the real take...I'm > ready to hear it. How long does it take? Should I be advocating > for an adjustment in the MTX? UGH. UGH....says it all. > > Thanks > (Christian 12 yrs old, systemic 12/03) > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 , If you are going to err, then err on the side of cynical. I think its the smart way to look at things because you are not as likely to fall for something that may be stretched too far. And what you said to me doesnt border on brand wars. *---* *---* *---* *---* *---* A conscience is what hurts when all your other parts feel so good. -- & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 , I also think cynicism has its place. There have been way too many times in my life where I've blindly (forgive the pun) followed others without taking a closer look at the facts. Knowledge is power, so that's what I arm myself with. So far, so good. It's much better than ignorance and less expensive too. <grin> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2009 Report Share Posted October 28, 2009 Dear Folks and fellow travelers: At this stage of life, and with a clear MS DX to deal with, I try more than ever to eschew expectation. But, in the wake of discovering LDN, beginning taking it, and reading all the anecdotal evidence from all over the western world, I can't help but get a little hyped at the prospect of regaining some semblance of my prior mobility. Yet, that has not happened thus far. To be sure, improvement is discernible in ways difficult to put into words, and probably the greatest benefit is an unseen one, that of possibly halting progressive decline, again something to be profoundly grateful for. Of course, I am not complaining either, as I am blessed with remaining ability to drive, work, and function, all without pain, even though with greater effort needed in all those areas. My question, directed to the long term users of LDN specifically for MS, is whether those folks have seen improvement in mobility? Again, I stress, I am not at all complaining. Nor am I entertaining any overt expectations. I am simply interested in hearing, (or reading) of long term LDN/MS user's improvement, if any. As always, my sincerest and heartfelt thanks for any replies. Dave in Pa. olddad68@... -------------------------------------------------------------------- myhosting.com - Premium Microsoft® Windows® and Linux web and application hosting - http://link.myhosting.com/myhosting Quote Link to comment Share on other sites More sharing options...
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