Guest guest Posted February 13, 1999 Report Share Posted February 13, 1999 where is the photo site? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 1999 Report Share Posted February 13, 1999 where is the photo site? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 1999 Report Share Posted February 13, 1999 Photo address is http://welcome.to/cyberphotos - check it out, and send a picture! ne, 59, Lawrenceville, NJ On Sat, 13 Feb 1999 09:57:13 -0500 (EST) FFBUD@... (DORMAN LAYCOX) writes: >From: FFBUD@... (DORMAN LAYCOX) > >where is the photo site? > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 1999 Report Share Posted February 13, 1999 Photo address is http://welcome.to/cyberphotos - check it out, and send a picture! ne, 59, Lawrenceville, NJ On Sat, 13 Feb 1999 09:57:13 -0500 (EST) FFBUD@... (DORMAN LAYCOX) writes: >From: FFBUD@... (DORMAN LAYCOX) > >where is the photo site? > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Hej Rose Marie- Min mormors familje kommer från Hallands lan och Småland. Min svensk är inte så mycket bra! To Betty- I am from NW PA near DuBois on I-80. In the mountains! Glad to meet you! Marc, I take Evening Primrose Oil, Vitamin C, Potassium, a multi, Iron, and for herbs, and a Colon Cleansing concoction which I think is important for body strength and to keep everything happy inside. I think it has dandelion and milk thistle in it. I do drink alot of water as well. I notice if I eat too much sugar, my fatigue becomes worse, and I feel worse. I only have a weight problem because I eat too much chocolate and french fries! Really, I only weigh 123, but it is IMPERATIVE for me to keep as much weight off my legs as possible. Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Hej Rose Marie- Min mormors familje kommer från Hallands lan och Småland. Min svensk är inte så mycket bra! To Betty- I am from NW PA near DuBois on I-80. In the mountains! Glad to meet you! Marc, I take Evening Primrose Oil, Vitamin C, Potassium, a multi, Iron, and for herbs, and a Colon Cleansing concoction which I think is important for body strength and to keep everything happy inside. I think it has dandelion and milk thistle in it. I do drink alot of water as well. I notice if I eat too much sugar, my fatigue becomes worse, and I feel worse. I only have a weight problem because I eat too much chocolate and french fries! Really, I only weigh 123, but it is IMPERATIVE for me to keep as much weight off my legs as possible. Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Hej Rose Marie- Min mormors familje kommer från Hallands lan och Småland. Min svensk är inte så mycket bra! To Betty- I am from NW PA near DuBois on I-80. In the mountains! Glad to meet you! Marc, I take Evening Primrose Oil, Vitamin C, Potassium, a multi, Iron, and for herbs, and a Colon Cleansing concoction which I think is important for body strength and to keep everything happy inside. I think it has dandelion and milk thistle in it. I do drink alot of water as well. I notice if I eat too much sugar, my fatigue becomes worse, and I feel worse. I only have a weight problem because I eat too much chocolate and french fries! Really, I only weigh 123, but it is IMPERATIVE for me to keep as much weight off my legs as possible. Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Thank you, Rhonda, for your quick response about the vits and herbs. I am not clear if these supplements, herbal and otherwise, are directly related to CMT or to good health in general. I do take vitamin E regularly and have in the past taken vitamin C regularly (have been slacking) and do generally take astragulus and ginseng (panax) and some bee products. The astragulus boosts my immune system, as does the ginseng and bee 'stuff' and gives me a bit of extra energy. I do have lots of herbal and sort of heal yourself books, so I can look the things you listed up, but since I am kinda lazy, not to mention busy doing the stuff of the day, perhaps you can tell me if and how the evening primrose oil, angelica and potassium are helpful to you. I have been trying triphala which is a colon cleansing concoction made of - I believe - three fruits. Have you, or anyone else, heard of this. Lately, however, I have been incorporating acidophilus for a healthy colon. I don't know if digestive problems are something that is common with CMT, but my mom, who most likely had the disease but was never diagnosed, died of colon cancer. The doctor told her that this cancer is familial and that us kids should beware. Probably no connection, but there have been other digestive problems in my family and so I was curious. Regarding the vitamin C, are you familiar with 'The Anatomy of An Illness' written by Norman Cousins? He became very ill and to combat it took extremely large doses of vitamin C (injections). It seemed to help him. He also used laughter as a medicine, watching comedies which would caused him to laugh. The book is largely about the placebo effect - how one can take something like a sugar tablet and believe that it is going to work, and it does. Mind over matter and all that. Reading his book opened many doors for me. I have read a number of books on the part positive, successful thinking plays in healing (if anyone is interested, I've got lots of titles). This is an area I am really interested in. In fact, a few years ago I went to hear the Daly Lama and others, including Herbert Benson ('The 5 Minute Relaxation Response'... book?) on the part the mind plays in healing diseases. And creating them. A while back someone - I believe it was Kathleen, if not forgive my forgetfulness - asked my why I would want to investigate genetics, etc and what I was hoping for by doing so, if I had my diagnosis. My answer to that is, we only know a little - even the doctors - about this human experience and especially nerves. There is ALWAYS hope. I do have it in my heart and I believe that it is essential that I try to keep that alive. It is not necessarily a cure that I hope for but a richer life. If I am in chronic pain, which I have been for certain seasons, my ability to appreciate the richness is diminished. If nothing else, I want to not only pass the genetics on to my kids, but also the hope and the hunger for a better understanding. I guess I saw my family close their eyes to the realities of this disease (when I was young) and to the possibilities that are available in the midst of CMT. I am done closing my eyes and want to check out all the options. It is empowering. One thing I have seen through my involvement with people with chronic diseases - from AIDS to alcoholism to CMT - is that one feels powerless. And although we may ultimately be powerless over the presence of this disease in our lives, there are aspects which we do have power over. Realizing this and embracing the possibilities is sort of invigorating. Again, it's about renewing the sense of hope. And if nothing else comes from it, is one great adventure! Sorry, if I have rambled on, spewing words that are not useful. I suppose I am the sort who listens, reading, gathers ideas, and then finally responds...at some length and with some passion. Forgive me. I do appreciate everyone's helpful and thoughtful words. Honestly. Anyway, y'all have a nice day! Peace, Marc Re: Digest Number 125 > > > Hej Rose Marie- Min mormors familje kommer från Hallands lan och > Småland. Min svensk är inte så mycket bra! > To Betty- I am from NW PA near DuBois on I-80. In the mountains! Glad > to meet you! > Marc, I take Evening Primrose Oil, Vitamin C, Potassium, a multi, Iron, > and for herbs, and a Colon Cleansing concoction which I think > is important for body strength and to keep everything happy inside. I > think it has dandelion and milk thistle in it. I do drink alot of water > as well. I notice if I eat too much sugar, my fatigue becomes worse, > and I feel worse. I only have a weight problem because I eat too much > chocolate and french fries! Really, I only weigh 123, but it is > IMPERATIVE for me to keep as much weight off my legs as possible. > > Rhonda > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Thank you, Rhonda, for your quick response about the vits and herbs. I am not clear if these supplements, herbal and otherwise, are directly related to CMT or to good health in general. I do take vitamin E regularly and have in the past taken vitamin C regularly (have been slacking) and do generally take astragulus and ginseng (panax) and some bee products. The astragulus boosts my immune system, as does the ginseng and bee 'stuff' and gives me a bit of extra energy. I do have lots of herbal and sort of heal yourself books, so I can look the things you listed up, but since I am kinda lazy, not to mention busy doing the stuff of the day, perhaps you can tell me if and how the evening primrose oil, angelica and potassium are helpful to you. I have been trying triphala which is a colon cleansing concoction made of - I believe - three fruits. Have you, or anyone else, heard of this. Lately, however, I have been incorporating acidophilus for a healthy colon. I don't know if digestive problems are something that is common with CMT, but my mom, who most likely had the disease but was never diagnosed, died of colon cancer. The doctor told her that this cancer is familial and that us kids should beware. Probably no connection, but there have been other digestive problems in my family and so I was curious. Regarding the vitamin C, are you familiar with 'The Anatomy of An Illness' written by Norman Cousins? He became very ill and to combat it took extremely large doses of vitamin C (injections). It seemed to help him. He also used laughter as a medicine, watching comedies which would caused him to laugh. The book is largely about the placebo effect - how one can take something like a sugar tablet and believe that it is going to work, and it does. Mind over matter and all that. Reading his book opened many doors for me. I have read a number of books on the part positive, successful thinking plays in healing (if anyone is interested, I've got lots of titles). This is an area I am really interested in. In fact, a few years ago I went to hear the Daly Lama and others, including Herbert Benson ('The 5 Minute Relaxation Response'... book?) on the part the mind plays in healing diseases. And creating them. A while back someone - I believe it was Kathleen, if not forgive my forgetfulness - asked my why I would want to investigate genetics, etc and what I was hoping for by doing so, if I had my diagnosis. My answer to that is, we only know a little - even the doctors - about this human experience and especially nerves. There is ALWAYS hope. I do have it in my heart and I believe that it is essential that I try to keep that alive. It is not necessarily a cure that I hope for but a richer life. If I am in chronic pain, which I have been for certain seasons, my ability to appreciate the richness is diminished. If nothing else, I want to not only pass the genetics on to my kids, but also the hope and the hunger for a better understanding. I guess I saw my family close their eyes to the realities of this disease (when I was young) and to the possibilities that are available in the midst of CMT. I am done closing my eyes and want to check out all the options. It is empowering. One thing I have seen through my involvement with people with chronic diseases - from AIDS to alcoholism to CMT - is that one feels powerless. And although we may ultimately be powerless over the presence of this disease in our lives, there are aspects which we do have power over. Realizing this and embracing the possibilities is sort of invigorating. Again, it's about renewing the sense of hope. And if nothing else comes from it, is one great adventure! Sorry, if I have rambled on, spewing words that are not useful. I suppose I am the sort who listens, reading, gathers ideas, and then finally responds...at some length and with some passion. Forgive me. I do appreciate everyone's helpful and thoughtful words. Honestly. Anyway, y'all have a nice day! Peace, Marc Re: Digest Number 125 > > > Hej Rose Marie- Min mormors familje kommer från Hallands lan och > Småland. Min svensk är inte så mycket bra! > To Betty- I am from NW PA near DuBois on I-80. In the mountains! Glad > to meet you! > Marc, I take Evening Primrose Oil, Vitamin C, Potassium, a multi, Iron, > and for herbs, and a Colon Cleansing concoction which I think > is important for body strength and to keep everything happy inside. I > think it has dandelion and milk thistle in it. I do drink alot of water > as well. I notice if I eat too much sugar, my fatigue becomes worse, > and I feel worse. I only have a weight problem because I eat too much > chocolate and french fries! Really, I only weigh 123, but it is > IMPERATIVE for me to keep as much weight off my legs as possible. > > Rhonda > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Thank you, Rhonda, for your quick response about the vits and herbs. I am not clear if these supplements, herbal and otherwise, are directly related to CMT or to good health in general. I do take vitamin E regularly and have in the past taken vitamin C regularly (have been slacking) and do generally take astragulus and ginseng (panax) and some bee products. The astragulus boosts my immune system, as does the ginseng and bee 'stuff' and gives me a bit of extra energy. I do have lots of herbal and sort of heal yourself books, so I can look the things you listed up, but since I am kinda lazy, not to mention busy doing the stuff of the day, perhaps you can tell me if and how the evening primrose oil, angelica and potassium are helpful to you. I have been trying triphala which is a colon cleansing concoction made of - I believe - three fruits. Have you, or anyone else, heard of this. Lately, however, I have been incorporating acidophilus for a healthy colon. I don't know if digestive problems are something that is common with CMT, but my mom, who most likely had the disease but was never diagnosed, died of colon cancer. The doctor told her that this cancer is familial and that us kids should beware. Probably no connection, but there have been other digestive problems in my family and so I was curious. Regarding the vitamin C, are you familiar with 'The Anatomy of An Illness' written by Norman Cousins? He became very ill and to combat it took extremely large doses of vitamin C (injections). It seemed to help him. He also used laughter as a medicine, watching comedies which would caused him to laugh. The book is largely about the placebo effect - how one can take something like a sugar tablet and believe that it is going to work, and it does. Mind over matter and all that. Reading his book opened many doors for me. I have read a number of books on the part positive, successful thinking plays in healing (if anyone is interested, I've got lots of titles). This is an area I am really interested in. In fact, a few years ago I went to hear the Daly Lama and others, including Herbert Benson ('The 5 Minute Relaxation Response'... book?) on the part the mind plays in healing diseases. And creating them. A while back someone - I believe it was Kathleen, if not forgive my forgetfulness - asked my why I would want to investigate genetics, etc and what I was hoping for by doing so, if I had my diagnosis. My answer to that is, we only know a little - even the doctors - about this human experience and especially nerves. There is ALWAYS hope. I do have it in my heart and I believe that it is essential that I try to keep that alive. It is not necessarily a cure that I hope for but a richer life. If I am in chronic pain, which I have been for certain seasons, my ability to appreciate the richness is diminished. If nothing else, I want to not only pass the genetics on to my kids, but also the hope and the hunger for a better understanding. I guess I saw my family close their eyes to the realities of this disease (when I was young) and to the possibilities that are available in the midst of CMT. I am done closing my eyes and want to check out all the options. It is empowering. One thing I have seen through my involvement with people with chronic diseases - from AIDS to alcoholism to CMT - is that one feels powerless. And although we may ultimately be powerless over the presence of this disease in our lives, there are aspects which we do have power over. Realizing this and embracing the possibilities is sort of invigorating. Again, it's about renewing the sense of hope. And if nothing else comes from it, is one great adventure! Sorry, if I have rambled on, spewing words that are not useful. I suppose I am the sort who listens, reading, gathers ideas, and then finally responds...at some length and with some passion. Forgive me. I do appreciate everyone's helpful and thoughtful words. Honestly. Anyway, y'all have a nice day! Peace, Marc Re: Digest Number 125 > > > Hej Rose Marie- Min mormors familje kommer från Hallands lan och > Småland. Min svensk är inte så mycket bra! > To Betty- I am from NW PA near DuBois on I-80. In the mountains! Glad > to meet you! > Marc, I take Evening Primrose Oil, Vitamin C, Potassium, a multi, Iron, > and for herbs, and a Colon Cleansing concoction which I think > is important for body strength and to keep everything happy inside. I > think it has dandelion and milk thistle in it. I do drink alot of water > as well. I notice if I eat too much sugar, my fatigue becomes worse, > and I feel worse. I only have a weight problem because I eat too much > chocolate and french fries! Really, I only weigh 123, but it is > IMPERATIVE for me to keep as much weight off my legs as possible. > > Rhonda > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 What a wonderful letter Marc. You know I don't think anybody on this list ever feels that they have wasted their time by reading anybody's posts. They are so unique and each and everybody's opinions and thoughts touch us differently. Thanks Marc for brightening my day! Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 In a message dated 1/17/0 10:36:14 PM, you wrote: < > Hi, this is Martha, replying to multiple messages! Dom, I love what your surgeon said about 'if it doesn't hurt, don't touch it'!!! Barbara, I live in the N. Va. / Washington area. I agree with many of the things you said in your reply to me. Somehow in a disease with this many variations, a dr. not open to options besides her own specialty should be avoided. And to not know that CP presents a whole different rash of options......amazing. To me the most alarming thing is the devascularization of the foot during surgery. Many of you are talking about medication for pains, chronic and sharp pains.....are these something that got worse or happened due to surgery? The burning nerves etc??? We went for the second PT visit, had 4 people there learning the proper technique to position his foot to neutral and stretch the muscles. Larry thinks he is in seventh heaven, attention and things that feel good.....not to mention and elevator massage bed.... Gretchen, on todays 127 digest, there were no messages on the end of it for me to read...just ended at the end of the list like the first day! Thanks again for all the info and help! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Well, I'm glad. I guess that's why we are all here. M Re: Digest Number 125 > From: Buchie54@... > > What a wonderful letter Marc. You know I don't think anybody on this list > ever feels that they have wasted their time by reading anybody's posts. They > are so unique and each and everybody's opinions and thoughts touch us > differently. Thanks Marc for brightening my day! > Betty > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 >>>Turns out my baby girl is allergic to BEEF! Haven't seen any postings for that so I thought I would share that one with y'all. I almost fell off my chair when the allergist called me at work to give me the results. He said it was very interesting because he's never had a patient with a beef allergy. Last thing I want to be to the medical community is " interesting " . Anyways...off to get lunch ready for daycare tomorrow and then off to bed! Just thought I'd share this with you all. Everyone take care! Missy Oakdale, MN<<< Hi Missy At SoyAllergyUnited (yahoo group for soy allergies) there is a mom whose son is allergic to beef. pookas00@...> " pookas00@...> > -Mom to: > Colby-3 yrs-EE,soy, rice, corn, beef > Hunter -2 yrs-allergies yet unknown, eczema Regards, Ronèl Ps. Regarding the homeopathic remedy Apis: it's made from the honeybee, and is usually recommended for mild allergic reactions, 1M is a dosage (quite strong; nor really suitable for the home prescriber unless you know what you're doing) (Mild being the operative word: when we still considered homeopathy we didn't yet know that Christiaan was anaphalactic) Pps. We now carry around an adrenalin injection for Christiaan (6 -anaphalactic to peanuts, tree nuts and soy). It is such a rare allergy here, that even the paed isn't really up to speed (he is excellent, otherwise, and he is reading up as much as we are). I have read about an adrenalin inhaler - anyone know how effective it is? Also read about a Phenergan pill - anyone? We're not keen on sending the injection to school (mainly because the adrenalin comes seperately and you still have to measure off the 3ml he has to get - more than that can apparently kill him, so wouldn't want to take that chance with a panicky teacher!) Ppps. Came across something interesting yesterday: Vitamin E is derived from soy! (Iow no multi-vitamin sups for him!) Pppps. What are Sloppy Jo's?! LOL sounds, erm, well, sloppy... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Hi! Are Epi Pens unavailable where you live? That way the dosage is premeasured. Sloppy Jo's are well... Ground beef in a tomato type sauce. Not Chile and not quite spaghetti sauce, lol. you spoon it on a bun and eat it like a hamburger. Mine comes out of a can ::::blush::::: Smiles, Duran ~*~Cherry Bubbins~*~ simply...charming! http://members.ebay.com/aboutme/durandl@.../ http://heritagesewing.com/CherryBubbins.html http://www.picturetrail.com/gallery/view?p=6 & uid=483966 & We're not keen on sending the injection to school(mainly because the adrenalin comes seperately and you still have to measureoff the 3ml he has to get - more than that can apparently kill him, sowouldn't want to take that chance with a panicky teacher!)Pppps. What are Sloppy Jo's?! LOL sounds, erm, well, sloppy... Quote Link to comment Share on other sites More sharing options...
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