Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Hi Jan, How is Jerry doing today? Please don't feel like a second-class citizen because you haven't caught on to all the terminology. There is a whole lot to absorb... I think some of us must qualify for a few university course credits by now! Certainly the caregivers could teach a course in nursing I'm sure. I've been reading about this stuff since 1994 so I'm able to absorb and make sense of new things I read much faster than someone new to these disorders. Bring on your cheat sheet and we'll fill in the blanks. Hugs, Pam Knowledge & Confusion > Pam- Thank you for all the information. I must say as someone new to > the site I feel I have received more information in two weeks than I > have in 4 years. However, confusion often sets in because the > initials to all the diseases, syndromes, medical terms, etc. are very > confusing. Guess I could use a cheat sheet. At times it can seem > that everyone else knows the lingo but I don't. I also need extra > hours to read all of this but I am slowly making my way through it > and beginning to establish a point of reference in which to read from > one article to the next article. I hope others new to the site will > stay with it even if the info may be confusing and know that everyone > is great about giving explanations. Thanks again to everyone for > their patience and love. > Jan > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Hi Jan, How is Jerry doing today? Please don't feel like a second-class citizen because you haven't caught on to all the terminology. There is a whole lot to absorb... I think some of us must qualify for a few university course credits by now! Certainly the caregivers could teach a course in nursing I'm sure. I've been reading about this stuff since 1994 so I'm able to absorb and make sense of new things I read much faster than someone new to these disorders. Bring on your cheat sheet and we'll fill in the blanks. Hugs, Pam Knowledge & Confusion > Pam- Thank you for all the information. I must say as someone new to > the site I feel I have received more information in two weeks than I > have in 4 years. However, confusion often sets in because the > initials to all the diseases, syndromes, medical terms, etc. are very > confusing. Guess I could use a cheat sheet. At times it can seem > that everyone else knows the lingo but I don't. I also need extra > hours to read all of this but I am slowly making my way through it > and beginning to establish a point of reference in which to read from > one article to the next article. I hope others new to the site will > stay with it even if the info may be confusing and know that everyone > is great about giving explanations. Thanks again to everyone for > their patience and love. > Jan > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Thanks for all your help dealing with Jerry's recent illness. The fever has finally broken and I can see a change already. He is once again eating and drinking (a little). We were to our PCP yesterday because his breathing did not sound right to me and the dreaded on- call weekend was approaching. They did a chest x-ray which was negative (thank goodness) but his breathe sounds are diminished (don't know why)and his oxygen level is too low. So, we returned home and he is wearing his oxygen during the day as well as night. He is not able to help himself getting up and I am thankful that I have a young man who comes in to give us a hand during the day or I don't know what I'd do. (our 17 yr. old son) has been helpful in the evenings. I think this set back was very depressing for Jerry. Now, if our insurance company can get their act together we may get some additional equipment, like maybe a slideboard, so I can take care of him myself. This summer our 17 yr old goes to Embry- Riddle to get his pilot's license and will be gone for 8 wks. I will really miss all his help. Pam, I do plan on making a cheat sheet. There are way too many initials for me to figure out or to remember. Thank you for all the great info. Jan > Hi Jan, How is Jerry doing today? Please don't feel like a second- class > citizen because you haven't caught on to all the terminology. There is a > whole lot to absorb... I think some of us must qualify for a few university > course credits by now! Certainly the caregivers could teach a course in > nursing I'm sure. I've been reading about this stuff since 1994 so I'm able > to absorb and make sense of new things I read much faster than someone new > to these disorders. > > Bring on your cheat sheet and we'll fill in the blanks. > > Hugs, > Pam > > > Knowledge & Confusion > > > > Pam- Thank you for all the information. I must say as someone new to > > the site I feel I have received more information in two weeks than I > > have in 4 years. However, confusion often sets in because the > > initials to all the diseases, syndromes, medical terms, etc. are very > > confusing. Guess I could use a cheat sheet. At times it can seem > > that everyone else knows the lingo but I don't. I also need extra > > hours to read all of this but I am slowly making my way through it > > and beginning to establish a point of reference in which to read from > > one article to the next article. I hope others new to the site will > > stay with it even if the info may be confusing and know that everyone > > is great about giving explanations. Thanks again to everyone for > > their patience and love. > > Jan > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Thanks for all your help dealing with Jerry's recent illness. The fever has finally broken and I can see a change already. He is once again eating and drinking (a little). We were to our PCP yesterday because his breathing did not sound right to me and the dreaded on- call weekend was approaching. They did a chest x-ray which was negative (thank goodness) but his breathe sounds are diminished (don't know why)and his oxygen level is too low. So, we returned home and he is wearing his oxygen during the day as well as night. He is not able to help himself getting up and I am thankful that I have a young man who comes in to give us a hand during the day or I don't know what I'd do. (our 17 yr. old son) has been helpful in the evenings. I think this set back was very depressing for Jerry. Now, if our insurance company can get their act together we may get some additional equipment, like maybe a slideboard, so I can take care of him myself. This summer our 17 yr old goes to Embry- Riddle to get his pilot's license and will be gone for 8 wks. I will really miss all his help. Pam, I do plan on making a cheat sheet. There are way too many initials for me to figure out or to remember. Thank you for all the great info. Jan > Hi Jan, How is Jerry doing today? Please don't feel like a second- class > citizen because you haven't caught on to all the terminology. There is a > whole lot to absorb... I think some of us must qualify for a few university > course credits by now! Certainly the caregivers could teach a course in > nursing I'm sure. I've been reading about this stuff since 1994 so I'm able > to absorb and make sense of new things I read much faster than someone new > to these disorders. > > Bring on your cheat sheet and we'll fill in the blanks. > > Hugs, > Pam > > > Knowledge & Confusion > > > > Pam- Thank you for all the information. I must say as someone new to > > the site I feel I have received more information in two weeks than I > > have in 4 years. However, confusion often sets in because the > > initials to all the diseases, syndromes, medical terms, etc. are very > > confusing. Guess I could use a cheat sheet. At times it can seem > > that everyone else knows the lingo but I don't. I also need extra > > hours to read all of this but I am slowly making my way through it > > and beginning to establish a point of reference in which to read from > > one article to the next article. I hope others new to the site will > > stay with it even if the info may be confusing and know that everyone > > is great about giving explanations. Thanks again to everyone for > > their patience and love. > > Jan > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Thanks for all your help dealing with Jerry's recent illness. The fever has finally broken and I can see a change already. He is once again eating and drinking (a little). We were to our PCP yesterday because his breathing did not sound right to me and the dreaded on- call weekend was approaching. They did a chest x-ray which was negative (thank goodness) but his breathe sounds are diminished (don't know why)and his oxygen level is too low. So, we returned home and he is wearing his oxygen during the day as well as night. He is not able to help himself getting up and I am thankful that I have a young man who comes in to give us a hand during the day or I don't know what I'd do. (our 17 yr. old son) has been helpful in the evenings. I think this set back was very depressing for Jerry. Now, if our insurance company can get their act together we may get some additional equipment, like maybe a slideboard, so I can take care of him myself. This summer our 17 yr old goes to Embry- Riddle to get his pilot's license and will be gone for 8 wks. I will really miss all his help. Pam, I do plan on making a cheat sheet. There are way too many initials for me to figure out or to remember. Thank you for all the great info. Jan > Hi Jan, How is Jerry doing today? Please don't feel like a second- class > citizen because you haven't caught on to all the terminology. There is a > whole lot to absorb... I think some of us must qualify for a few university > course credits by now! Certainly the caregivers could teach a course in > nursing I'm sure. I've been reading about this stuff since 1994 so I'm able > to absorb and make sense of new things I read much faster than someone new > to these disorders. > > Bring on your cheat sheet and we'll fill in the blanks. > > Hugs, > Pam > > > Knowledge & Confusion > > > > Pam- Thank you for all the information. I must say as someone new to > > the site I feel I have received more information in two weeks than I > > have in 4 years. However, confusion often sets in because the > > initials to all the diseases, syndromes, medical terms, etc. are very > > confusing. Guess I could use a cheat sheet. At times it can seem > > that everyone else knows the lingo but I don't. I also need extra > > hours to read all of this but I am slowly making my way through it > > and beginning to establish a point of reference in which to read from > > one article to the next article. I hope others new to the site will > > stay with it even if the info may be confusing and know that everyone > > is great about giving explanations. Thanks again to everyone for > > their patience and love. > > Jan > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 jan, i have been on for around seven mos and still have problems with all the different initials and terms, i feel medically backwards at times. my dr talks to me in laymans term and it took me almost 5 mos to know that my " crab walk " was called ataxia. so don't feel alone wanda __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 " Crabwalk " , I like that, frankly I wondered about ataxia myself, presumed it meant a drunken stagger, I like crabwalk better. Now if someone could give me the proper name for that stiffness (not spasms), feels like my muscles are on too tight (mostly after I've been still for a bit.) At Friday 5/17/02 11:22 PM, you wrote: jan, i have been on for around seven mos and still have problems with all the different initials and terms, i feel medically backwards at times. my dr talks to me in laymans term and it took me almost 5 mos to know that my " crab walk " was called ataxia. so don't feel alone wanda __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Jan, I am so glad to hear that Jerry is doing better! Prayer does work! As far as the intials I think you do wonderfully. I still have a hard time with it. I also have a hard time understanding alot of the technology. I am so thankful we have so many on here that are so willing to help. I know that you will miss your son for the 8 week period but know that you are glad that he has the opportunity. It is amazing how the older we get how time flies so much faster. Counting on that he will be home tomorrow. At least that is how fast my time flies! (Grins) God bless, Belinda > > Hi Jan, How is Jerry doing today? Please don't feel like a second- > class > > citizen because you haven't caught on to all the terminology. > There is a > > whole lot to absorb... I think some of us must qualify for a few > university > > course credits by now! Certainly the caregivers could teach a > course in > > nursing I'm sure. I've been reading about this stuff since 1994 so > I'm able > > to absorb and make sense of new things I read much faster than > someone new > > to these disorders. > > > > Bring on your cheat sheet and we'll fill in the blanks. > > > > Hugs, > > Pam > > > > > > Knowledge & Confusion > > > > > > > Pam- Thank you for all the information. I must say as someone > new to > > > the site I feel I have received more information in two weeks > than I > > > have in 4 years. However, confusion often sets in because the > > > initials to all the diseases, syndromes, medical terms, etc. are > very > > > confusing. Guess I could use a cheat sheet. At times it can seem > > > that everyone else knows the lingo but I don't. I also need extra > > > hours to read all of this but I am slowly making my way through it > > > and beginning to establish a point of reference in which to read > from > > > one article to the next article. I hope others new to the site > will > > > stay with it even if the info may be confusing and know that > everyone > > > is great about giving explanations. Thanks again to everyone for > > > their patience and love. > > > Jan > > > > > > > > > If you do not wish to belong to shydrager, you may > > > unsubscribe by sending a blank email to > > > > > > shydrager-unsubscribe@y... > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Jan, I am so glad to hear that Jerry is doing better! Prayer does work! As far as the intials I think you do wonderfully. I still have a hard time with it. I also have a hard time understanding alot of the technology. I am so thankful we have so many on here that are so willing to help. I know that you will miss your son for the 8 week period but know that you are glad that he has the opportunity. It is amazing how the older we get how time flies so much faster. Counting on that he will be home tomorrow. At least that is how fast my time flies! (Grins) God bless, Belinda > > Hi Jan, How is Jerry doing today? Please don't feel like a second- > class > > citizen because you haven't caught on to all the terminology. > There is a > > whole lot to absorb... I think some of us must qualify for a few > university > > course credits by now! Certainly the caregivers could teach a > course in > > nursing I'm sure. I've been reading about this stuff since 1994 so > I'm able > > to absorb and make sense of new things I read much faster than > someone new > > to these disorders. > > > > Bring on your cheat sheet and we'll fill in the blanks. > > > > Hugs, > > Pam > > > > > > Knowledge & Confusion > > > > > > > Pam- Thank you for all the information. I must say as someone > new to > > > the site I feel I have received more information in two weeks > than I > > > have in 4 years. However, confusion often sets in because the > > > initials to all the diseases, syndromes, medical terms, etc. are > very > > > confusing. Guess I could use a cheat sheet. At times it can seem > > > that everyone else knows the lingo but I don't. I also need extra > > > hours to read all of this but I am slowly making my way through it > > > and beginning to establish a point of reference in which to read > from > > > one article to the next article. I hope others new to the site > will > > > stay with it even if the info may be confusing and know that > everyone > > > is great about giving explanations. Thanks again to everyone for > > > their patience and love. > > > Jan > > > > > > > > > If you do not wish to belong to shydrager, you may > > > unsubscribe by sending a blank email to > > > > > > shydrager-unsubscribe@y... > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Aletta Just a short note to say how much I liked your web page(is that the correct title?) you are truly talented I bet you can even sing to ! Me , I don`t have a single talent but lots of blessings so can`t complain! I also feel like my muscles are too tight ,I wondered if the correct word is dystonia but I think that implies increased tone... which could be part of what I feel ....I also get muscle spasm but that feels different again...Maybe we could make up a word Myoshrink??? Speaking of shrinks my MD is getting uneasy about my taking sleeping meds for so long (12 months) and is starting to make suggestions that I see a specialist...read shrink....I remember you posting about your problems with Docs and sleep meds can you remind me what you did? I really don`t feel the need to see a psychiatrist .I freely admit to being dependent on my sleep meds and feel really annoyed that she can`t understand that it`s a physical brain thing not a psychological problem! Oh well will carry on resisting for now ! Love Marg Manson Aletta Mes wrote: "Crabwalk", I like that, frankly I wondered about ataxia myself, presumed it meant a drunken stagger, I like crabwalk better. Now if someone could give me the proper name for that stiffness (not spasms), feels like my muscles are on too tight (mostly after I've been still for a bit.)At Friday 5/17/02 11:22 PM, you wrote: jan, i have been on for around seven mos and still haveproblems with all the different initials and terms, ifeel medically backwards at times. my dr talks to mein laymans term and it took me almost 5 mos to knowthat my "crab walk" was called ataxia. so don't feelalonewanda__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Aletta Just a short note to say how much I liked your web page(is that the correct title?) you are truly talented I bet you can even sing to ! Me , I don`t have a single talent but lots of blessings so can`t complain! I also feel like my muscles are too tight ,I wondered if the correct word is dystonia but I think that implies increased tone... which could be part of what I feel ....I also get muscle spasm but that feels different again...Maybe we could make up a word Myoshrink??? Speaking of shrinks my MD is getting uneasy about my taking sleeping meds for so long (12 months) and is starting to make suggestions that I see a specialist...read shrink....I remember you posting about your problems with Docs and sleep meds can you remind me what you did? I really don`t feel the need to see a psychiatrist .I freely admit to being dependent on my sleep meds and feel really annoyed that she can`t understand that it`s a physical brain thing not a psychological problem! Oh well will carry on resisting for now ! Love Marg Manson Aletta Mes wrote: "Crabwalk", I like that, frankly I wondered about ataxia myself, presumed it meant a drunken stagger, I like crabwalk better. Now if someone could give me the proper name for that stiffness (not spasms), feels like my muscles are on too tight (mostly after I've been still for a bit.)At Friday 5/17/02 11:22 PM, you wrote: jan, i have been on for around seven mos and still haveproblems with all the different initials and terms, ifeel medically backwards at times. my dr talks to mein laymans term and it took me almost 5 mos to knowthat my "crab walk" was called ataxia. so don't feelalonewanda__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Get a shrink, that's what I have done all along. He's even written to my other doctors (in writing is important) that I have no psychiatric problems. It was he who put me on sleep meds. Shrinks have more experiencee and understand the difference between addiction and dependance. I'm a total waste of life when I am sleep deprived. As it is I get by on the four to six hours the meds give me, without I am continually awake. With all these truly odd symptoms plaguing us, it is good to have someone to take your frights and confusion to, if only to put yourself at ease that you are not losing your mind, only some brain cells. He's also been very helpful allowing me to adjust to what life beomes (smaller and smaller) when you are disabled, the anger, guilt etc. If you have the choice go to someone with an analytical rather than a pharmaceutical approach. Given that you live in BC you likely won't even get to see one for a year or more. For the record I have now been on sleeping pills (Halcion) for about three years, with no increase in dosage needed, that hardly constitutes addiction. I don't sing, my mother was an opera singer, her criticism was painful. Well, that's not entirely true, but I would have to be fairly drunk, or very sure I was alone. Everyone is talented at something, most people never have the luxury of time to develop it - that's a hint sister, you now have the time to find your muse. At Sunday 5/19/02 09:07 PM, you wrote: Aletta Just a short note to say how much I liked your web page(is that the correct title?) you are truly talented I bet you can even sing to ! Me , I don`t have a single talent but lots of blessings so can`t complain! I also feel like my muscles are too tight ,I wondered if the correct word is dystonia but I think that implies increased tone... which could be part of what I feel ....I also get muscle spasm but that feels different again...Maybe we could make up a word Myoshrink??? Speaking of shrinks my MD is getting uneasy about my taking sleeping meds for so long (12 months) and is starting to make suggestions that I see a specialist...read shrink....I remember you posting about your problems with Docs and sleep meds can you remind me what you did? I really don`t feel the need to see a psychiatrist .I freely admit to being dependent on my sleep meds and feel really annoyed that she can`t understand that it`s a physical brain thing not a psychological problem! Oh well will carry on resisting for now ! Love Marg Manson aletta mes vancouver, bc Canada web: http://aletta.0catch.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Get a shrink, that's what I have done all along. He's even written to my other doctors (in writing is important) that I have no psychiatric problems. It was he who put me on sleep meds. Shrinks have more experiencee and understand the difference between addiction and dependance. I'm a total waste of life when I am sleep deprived. As it is I get by on the four to six hours the meds give me, without I am continually awake. With all these truly odd symptoms plaguing us, it is good to have someone to take your frights and confusion to, if only to put yourself at ease that you are not losing your mind, only some brain cells. He's also been very helpful allowing me to adjust to what life beomes (smaller and smaller) when you are disabled, the anger, guilt etc. If you have the choice go to someone with an analytical rather than a pharmaceutical approach. Given that you live in BC you likely won't even get to see one for a year or more. For the record I have now been on sleeping pills (Halcion) for about three years, with no increase in dosage needed, that hardly constitutes addiction. I don't sing, my mother was an opera singer, her criticism was painful. Well, that's not entirely true, but I would have to be fairly drunk, or very sure I was alone. Everyone is talented at something, most people never have the luxury of time to develop it - that's a hint sister, you now have the time to find your muse. At Sunday 5/19/02 09:07 PM, you wrote: Aletta Just a short note to say how much I liked your web page(is that the correct title?) you are truly talented I bet you can even sing to ! Me , I don`t have a single talent but lots of blessings so can`t complain! I also feel like my muscles are too tight ,I wondered if the correct word is dystonia but I think that implies increased tone... which could be part of what I feel ....I also get muscle spasm but that feels different again...Maybe we could make up a word Myoshrink??? Speaking of shrinks my MD is getting uneasy about my taking sleeping meds for so long (12 months) and is starting to make suggestions that I see a specialist...read shrink....I remember you posting about your problems with Docs and sleep meds can you remind me what you did? I really don`t feel the need to see a psychiatrist .I freely admit to being dependent on my sleep meds and feel really annoyed that she can`t understand that it`s a physical brain thing not a psychological problem! Oh well will carry on resisting for now ! Love Marg Manson aletta mes vancouver, bc Canada web: http://aletta.0catch.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Get a shrink, that's what I have done all along. He's even written to my other doctors (in writing is important) that I have no psychiatric problems. It was he who put me on sleep meds. Shrinks have more experiencee and understand the difference between addiction and dependance. I'm a total waste of life when I am sleep deprived. As it is I get by on the four to six hours the meds give me, without I am continually awake. With all these truly odd symptoms plaguing us, it is good to have someone to take your frights and confusion to, if only to put yourself at ease that you are not losing your mind, only some brain cells. He's also been very helpful allowing me to adjust to what life beomes (smaller and smaller) when you are disabled, the anger, guilt etc. If you have the choice go to someone with an analytical rather than a pharmaceutical approach. Given that you live in BC you likely won't even get to see one for a year or more. For the record I have now been on sleeping pills (Halcion) for about three years, with no increase in dosage needed, that hardly constitutes addiction. I don't sing, my mother was an opera singer, her criticism was painful. Well, that's not entirely true, but I would have to be fairly drunk, or very sure I was alone. Everyone is talented at something, most people never have the luxury of time to develop it - that's a hint sister, you now have the time to find your muse. At Sunday 5/19/02 09:07 PM, you wrote: Aletta Just a short note to say how much I liked your web page(is that the correct title?) you are truly talented I bet you can even sing to ! Me , I don`t have a single talent but lots of blessings so can`t complain! I also feel like my muscles are too tight ,I wondered if the correct word is dystonia but I think that implies increased tone... which could be part of what I feel ....I also get muscle spasm but that feels different again...Maybe we could make up a word Myoshrink??? Speaking of shrinks my MD is getting uneasy about my taking sleeping meds for so long (12 months) and is starting to make suggestions that I see a specialist...read shrink....I remember you posting about your problems with Docs and sleep meds can you remind me what you did? I really don`t feel the need to see a psychiatrist .I freely admit to being dependent on my sleep meds and feel really annoyed that she can`t understand that it`s a physical brain thing not a psychological problem! Oh well will carry on resisting for now ! Love Marg Manson aletta mes vancouver, bc Canada web: http://aletta.0catch.com Quote Link to comment Share on other sites More sharing options...
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