Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 The foods from protein require a stomach for digestion. I have no stomach. Before revision, it was there, but I didn't have access to it. I do not want to be food dominated, so it would take eating nothing but protein foods to get about half of what I need. Yuck. I just get it with the pre-digested protein and eat healthy otherwise. I prefer veggies & stuff more, too. However, it wasn't entirely my choice. My doc insists on protein supps for life. But back in the olden days, it was soy. Yuck, ptui. We didn't find whey proteins til 1995. And we are very distal, so it is not optional for us. BUT then we noticed the side effects of whey protein. Decrease in appetite, lack of cravings, sensation of satisfaction--there were all kinds of other reasons to recommend this to others, as well. It's much easier to take in a sure 30g of pre-digested protein in 4 oz than it is to get 10% (I'm distal) of 6g in the single egg I can eat. I can drink protein all day and get as much protein as I want, less damage to the other organs as they work to process the food proteins. LOTS of reasons. Yes, whey is the #1 source of protein in bioavailability, technically. But also, chocolate is going to be WAY more BV to ME than meat. And FISH is not FOOD, so don't even go there! Thanks, www.vitalady.com For info on PayPal, click this link: https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com Re:New to the Group > > > > > > > > > In a message dated 10/28/01 3:13:59 AM Eastern Standard Time, > > > > > vitalady@... writes: > > > > > > > > > > << I'm 7 yrs post-op, still at goal wt. BUT very distal AND very anal > > > > about > > > > > protein & my other supps. I think that's all that stands between my > > 108 > > > > & > > > > > 262 again. > > > > > >> > > > > > , > > > > > If you wouldn't mind, as a 7 year veteran, could you say what you eat > > on a > > > > > normal day? > > > > > > > > > > I know every person is different and you have to see what works for > > you, > > > > but > > > > > I was just wondering, since you obviously are doing whatever it is > > right, > > > > > what you actually consume (food/supplement wise) during the day. > > > > > > > > > > Thanks so much. > > > > > > > > > > > > > > > Dr Schmidt HUMC > > > > > 1-10-00 298 > > > > > 10-28-01 178 > > > > > Panniculectomy/Breast Reduction 4-17-01 > > > > > > > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > > > > > > > > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 The foods from protein require a stomach for digestion. I have no stomach. Before revision, it was there, but I didn't have access to it. I do not want to be food dominated, so it would take eating nothing but protein foods to get about half of what I need. Yuck. I just get it with the pre-digested protein and eat healthy otherwise. I prefer veggies & stuff more, too. However, it wasn't entirely my choice. My doc insists on protein supps for life. But back in the olden days, it was soy. Yuck, ptui. We didn't find whey proteins til 1995. And we are very distal, so it is not optional for us. BUT then we noticed the side effects of whey protein. Decrease in appetite, lack of cravings, sensation of satisfaction--there were all kinds of other reasons to recommend this to others, as well. It's much easier to take in a sure 30g of pre-digested protein in 4 oz than it is to get 10% (I'm distal) of 6g in the single egg I can eat. I can drink protein all day and get as much protein as I want, less damage to the other organs as they work to process the food proteins. LOTS of reasons. Yes, whey is the #1 source of protein in bioavailability, technically. But also, chocolate is going to be WAY more BV to ME than meat. And FISH is not FOOD, so don't even go there! Thanks, www.vitalady.com For info on PayPal, click this link: https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com Re:New to the Group > > > > > > > > > In a message dated 10/28/01 3:13:59 AM Eastern Standard Time, > > > > > vitalady@... writes: > > > > > > > > > > << I'm 7 yrs post-op, still at goal wt. BUT very distal AND very anal > > > > about > > > > > protein & my other supps. I think that's all that stands between my > > 108 > > > > & > > > > > 262 again. > > > > > >> > > > > > , > > > > > If you wouldn't mind, as a 7 year veteran, could you say what you eat > > on a > > > > > normal day? > > > > > > > > > > I know every person is different and you have to see what works for > > you, > > > > but > > > > > I was just wondering, since you obviously are doing whatever it is > > right, > > > > > what you actually consume (food/supplement wise) during the day. > > > > > > > > > > Thanks so much. > > > > > > > > > > > > > > > Dr Schmidt HUMC > > > > > 1-10-00 298 > > > > > 10-28-01 178 > > > > > Panniculectomy/Breast Reduction 4-17-01 > > > > > > > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > > > > > > > > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2001 Report Share Posted December 26, 2001 Welcome to the group. I have been attached to this group for about three months now and have found answers to things I never thought I would. I also no longer feel alone. I hope this works for you even if it's just support. Marsha in Maine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2001 Report Share Posted December 26, 2001 You did not tell us your name, so I will call you Ms. Maier, welcome to the group. It is very frustrating to go to the doctor and have him tell you that he is unsure what to do for you. In this day of micro-brain surgery and total heart transplant, it is hard to imagine that we are forced to suffer with hives and angioedema. Please ask lots of questions, we all understand, we have been there and we have survived. Welcome!!!!!!!!!! Joan --- themaiers1 wrote: > I cannot believe I found this website. I have been > searching the net > for answers on how to get rid of my hives, but to no > avail. I > thought my doctors were quacks, but from reading > your postings my > doctors DO know what they are talking about. I am > hoping for lots of > support because my family has about had it with me. > I try to be > positive but it is hard to be when you feel so > uncomfortable. My > hives have gotten so bad at times that I have gone > through 2 Epi > Pens. Anyway thanks for letting me talk. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2001 Report Share Posted December 26, 2001 Welcome to the group!! What everyone has said so far, says it all! They are the best! more later, Ann " I get by with a little help from my friends. " _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hi ! Not sure if anyone has responded. But there is a family on this listserve, Carmen and her family, who live in Texas. Also, if you are a member of the MAGIC Foundation, they can hook you up with names, emails and phone #s of any RSS families in Texas (speaking of which, my database -- I am the volunteer div dir of MAGIC's RSS division-- shows two other RSS families in Las Vegas. I can hook you up with them as well). MAGIC also has a Financial Director, Tucker, who is AMAZING!!! She can help you figure out the path with Medicaid and growth hormone. Plus, as a member you can apply for financial aid to help cover any GH costs as well. Anyways, she is a great right hand to help figure out the insurance thing (on that note, for everyone coming to the convention, will be giving a presentation on the insurance topic with Gerri Puccio, who used to work for Caremark). > Hi, my name is , and my daughter has RSS. We've known since > she was three months, but was just officially diagnosed-she is now 5. We now > live in Las Vegas, but my husband is separating from the military soon and we > will all be moving back to our home state of Texas. The other day a nurse > told me that she might qualify for Medicaid there(no matter what kind of > insurance the family has), and I was wondering if anyone had information or > knowledge in that area? She is due to start growth hormones very shortly, > and I know that they can be costly. I'm also interested in meeting some > other families once we make home in Texas. Is anyone from the Dallas/Ft. > Worth are? > > Blas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Dear , Madison is 8 months and she has great insurance through my fiance but she also has medicaid. Your daughter is considered to have a syndrom even if it's slight. with any syndrom or life altering diagnosis ur child is intitled to a secondary insurance. you can apply and then u get to choose from a few different insurances. i'm not sure of other people's experiences with supplement insurance but in my experience ameria choice didn't cover as much RX as keystone mercy does. good luck and keep me posted. Chrissy mom of madison 8 months RSS blas1099@... wrote: Hi, my name is , and my daughter has RSS. We've known since she was three months, but was just officially diagnosed-she is now 5. We now live in Las Vegas, but my husband is separating from the military soon and we will all be moving back to our home state of Texas. The other day a nurse told me that she might qualify for Medicaid there(no matter what kind of insurance the family has), and I was wondering if anyone had information or knowledge in that area? She is due to start growth hormones very shortly, and I know that they can be costly. I'm also interested in meeting some other families once we make home in Texas. Is anyone from the Dallas/Ft. Worth are? Blas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Dear , Madison is 8 months and she has great insurance through my fiance but she also has medicaid. Your daughter is considered to have a syndrom even if it's slight. with any syndrom or life altering diagnosis ur child is intitled to a secondary insurance. you can apply and then u get to choose from a few different insurances. i'm not sure of other people's experiences with supplement insurance but in my experience ameria choice didn't cover as much RX as keystone mercy does. good luck and keep me posted. Chrissy mom of madison 8 months RSS blas1099@... wrote: Hi, my name is , and my daughter has RSS. We've known since she was three months, but was just officially diagnosed-she is now 5. We now live in Las Vegas, but my husband is separating from the military soon and we will all be moving back to our home state of Texas. The other day a nurse told me that she might qualify for Medicaid there(no matter what kind of insurance the family has), and I was wondering if anyone had information or knowledge in that area? She is due to start growth hormones very shortly, and I know that they can be costly. I'm also interested in meeting some other families once we make home in Texas. Is anyone from the Dallas/Ft. Worth are? Blas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Dear , Madison is 8 months and she has great insurance through my fiance but she also has medicaid. Your daughter is considered to have a syndrom even if it's slight. with any syndrom or life altering diagnosis ur child is intitled to a secondary insurance. you can apply and then u get to choose from a few different insurances. i'm not sure of other people's experiences with supplement insurance but in my experience ameria choice didn't cover as much RX as keystone mercy does. good luck and keep me posted. Chrissy mom of madison 8 months RSS blas1099@... wrote: Hi, my name is , and my daughter has RSS. We've known since she was three months, but was just officially diagnosed-she is now 5. We now live in Las Vegas, but my husband is separating from the military soon and we will all be moving back to our home state of Texas. The other day a nurse told me that she might qualify for Medicaid there(no matter what kind of insurance the family has), and I was wondering if anyone had information or knowledge in that area? She is due to start growth hormones very shortly, and I know that they can be costly. I'm also interested in meeting some other families once we make home in Texas. Is anyone from the Dallas/Ft. Worth are? Blas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 , Sorry I'm so behind on my emails! I live near Ft. Worth. My son is on Chips (Children's Health Insurance Plan) here in Texas. His medication goes through Medicaid and he just started gh 3 weeks ago. His name is Storm and he is 6 years and 8 months old. He seems bigger to me since he started Gh, but I don't know for sure as he has not been measured. He has however, gained a pound in those three weeks! We go to Cook's Children's for most of his medical needs for now. If you need any more info you can write me personally at stormalc@ itexas.net There is another new family on the list from near Dallas, we were trying to get together, but my life has gone crazy and I haven't been able to meet with her or call her. My husband and I work as house parents at Happy Hill Farm Children's home. (Between Granbury and Glen Rose) If you know where that is you know where we live. We have 4 girls graduating in May and I have been dealing with a lot of separation issues. It is hard to let go, especially when they don't belong to me and I may never see them again. Anyhow, let me know if you need anything, and once you come home, we should all get together! Carmen, mom to Paisley, 9, and Storm, RSS, 6 years 8 months, 36.5 pounds, 42? inches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 , Sorry I'm so behind on my emails! I live near Ft. Worth. My son is on Chips (Children's Health Insurance Plan) here in Texas. His medication goes through Medicaid and he just started gh 3 weeks ago. His name is Storm and he is 6 years and 8 months old. He seems bigger to me since he started Gh, but I don't know for sure as he has not been measured. He has however, gained a pound in those three weeks! We go to Cook's Children's for most of his medical needs for now. If you need any more info you can write me personally at stormalc@ itexas.net There is another new family on the list from near Dallas, we were trying to get together, but my life has gone crazy and I haven't been able to meet with her or call her. My husband and I work as house parents at Happy Hill Farm Children's home. (Between Granbury and Glen Rose) If you know where that is you know where we live. We have 4 girls graduating in May and I have been dealing with a lot of separation issues. It is hard to let go, especially when they don't belong to me and I may never see them again. Anyhow, let me know if you need anything, and once you come home, we should all get together! Carmen, mom to Paisley, 9, and Storm, RSS, 6 years 8 months, 36.5 pounds, 42? inches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 , Sorry I'm so behind on my emails! I live near Ft. Worth. My son is on Chips (Children's Health Insurance Plan) here in Texas. His medication goes through Medicaid and he just started gh 3 weeks ago. His name is Storm and he is 6 years and 8 months old. He seems bigger to me since he started Gh, but I don't know for sure as he has not been measured. He has however, gained a pound in those three weeks! We go to Cook's Children's for most of his medical needs for now. If you need any more info you can write me personally at stormalc@ itexas.net There is another new family on the list from near Dallas, we were trying to get together, but my life has gone crazy and I haven't been able to meet with her or call her. My husband and I work as house parents at Happy Hill Farm Children's home. (Between Granbury and Glen Rose) If you know where that is you know where we live. We have 4 girls graduating in May and I have been dealing with a lot of separation issues. It is hard to let go, especially when they don't belong to me and I may never see them again. Anyhow, let me know if you need anything, and once you come home, we should all get together! Carmen, mom to Paisley, 9, and Storm, RSS, 6 years 8 months, 36.5 pounds, 42? inches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 Carmen, Thanks for writing! I would definitely love to meet with you and your family when we get to Texas. I just got the application for Chips in the mail, and I am just waiting until I get a few minutes to fill it out. It feels so good to know that there are other children in this world who are like my daughter, . She was 4 lb. 12 oz at birth (full term), and now at 5 weighs 21 lb.. She is constantly getting comments about being so petite and small. People stop me to tell me that she looks like a little baby doll. It's hilarious to see her running next to her 15 month old sister (non RSS) who is only a few inches shorter and a good 5 lb. heavier. Well, just thought that I would say hi. Hope to meet with you soon. I'll let you know when we get to Texas! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 Thanks so much for the info. That sounds great! Do you know how or where can I apply? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Jackie, You did not say where you live. That could help in our advising you on where to take your daughter. Also, have you checked the MAGIC Foundation website? It's at www.magicfoundation.org. There is a lot of info about RSS there and that may help you. From my point of view, as an educator and a mom of a child with RSS, it seems like your daughter needs a good physical and psychological work-up. Has she been evaluated by the child study team in your school district? Have you had an independent psychologist or psychiatrist or neurologist do an evaluation? It appears that you need a plan of action and some strong guidance to help you through this. If you would like to, email me privately at magicrss@ hotmail.com. And you can also contact the RSS Division Director, Salem, at magicrss@ mindspring.com. We both can try to help. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2003 Report Share Posted February 13, 2003 Hi ! Welcome to the " group " ! If you go back through the messages, you'll find a lot of us have written about their experiences throughout this process. Look for posts mentioning something about x days post-op or something like that. You'll find a lot of great information in those posts that can answer a lot of the questions you may have, plus they may bring up questions that you hadn't even thought about. Granted, there are 50 some thousand posts, so I wouldn't go back to the beginning, but I'd go back over several weeks or months to get a flavor of what's going on. Jeff > Hello- > I recently found out I need to have orthognathic surgery on my > lower jaw to alleviate the TMJ pain I've been having for a couple of > years. I was very excited to come across this group while doing a > bit of research on the internet. Although my surgeon has explained > the procedure that will be performed, I would like to know more about > it from people who have actually experienced it. I have never had > surgery in my life and the thought of this surgery has me a little > freaked out. Can someone share with me their experience (hopefully > good)and give me some good advice? > > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hello all, I am new to this group. My sister in law was just diagnosed with Neurosarcoidosis, and I would like to know what we can do for her. Apparently it is progressing quite quickly and I would like to know what we can expect and what to do. Im now researching this (how I came about you all). Is there a support group here in South Carolina (Myrtle Beach area)? Thank you and God Bless. Kurt Hi Kurt, I have had neursar for six years. The best thing I can tell you is to just be supportive of her. She would love a meal once in a while. Sometimes it is hard to cook because you are just too tired and feel so bad, and meals are great to get. House work will be hard for her also. Just be there when she needs you and try to understand that she is going through a lot. It is no fun what we go through, it changes your life completely. How is she doing? Can she walk and do for herself? I live in NC and we don't have a support group. I love Myrtle Beach and wish I felt like getting there more. I can't even walk out to the beach anymore and I love the ocean. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hello all, I am new to this group. My sister in law was just diagnosed with Neurosarcoidosis, and I would like to know what we can do for her. Apparently it is progressing quite quickly and I would like to know what we can expect and what to do. Im now researching this (how I came about you all). Is there a support group here in South Carolina (Myrtle Beach area)? Thank you and God Bless. Kurt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 --- iiii@... wrote: > In a message dated 5/31/2005 6:09:03 PM Eastern > Daylight Time, > kurtloch@... writes: > > Hello all, I am new to this group. My sister in > law was just diagnosed > > with Neurosarcoidosis, and I would like to know > what we can do for > > her. Apparently it is progressing quite quickly > and I would like to > > know what we can expect and what to do. > > Im now researching this (how I came about you > all). > > Is there a support group here in South Carolina > (Myrtle Beach area)? > > Thank you and God Bless. > > > > Kurt > > > > > Hi Kurt, > I have had neursar for six years. The best thing I > can tell you is to just > be supportive of her. She would love a meal once in > a while. Sometimes it is > hard to cook because you are just too tired and feel > so bad, and meals are great > to get. House work will be hard for her also. Just > be there when she needs > you and try to understand that she is going through > a lot. It is no fun what we > go through, it changes your life completely. How is > she doing? Can she walk > and do for herself? I live in NC and we don't have a > support group. I love > Myrtle Beach and wish I felt like getting there > more. I can't even walk out to the > beach anymore and I love the ocean. > Take care, > > , I lived in Chapel Hill for almost 24 years bfor moving to Seattle. I I was wondering where in NC u are living. I dont know if u know this but the Univ hospital in Chapel Hill is doing research on sarcoids and they were looking for volunteers. Take Care- __________________________________ Discover Yahoo! Use Yahoo! to plan a weekend, have fun online and more. Check it out! http://discover.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
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