Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 Yes please don't dehydrate. seeing lauren, almost everyone on the list lately doing this scares me bad, knowing what alana's been through. you risk kidney stones later. Nick alrt@... wrote: >oh, my, lori. i understand the dilemma only too well, but my stone-riddled kidneys cringed at this. i recommend that folks restricting fluids get checked now and then for kidney stones and bladder cancer. i have big regrets about my own fluid restriction. wish i had at least swallowed my ego and wore incontinence underpants before i got so sick. > >i am grateful chuck and i are able to decide whether he does my care or not. i strikes me that when people say " primary " care provider it often seems to mean " only " care provider. people seem to make it work well on this list. in my work i've seen very few relationships survive under such circumstances. hats off! > >if only our government would not cut us off of basic care for being married and pay workers a decent wage so we could find good ones and keep them. > >alana > >Subject: Re: Re: PCA'S--managing our life w/ and without them--Lori >Date: Mon, 24 Oct 2005 02:52:34 +0000 > > >Maybe 12 to 16 ozs a day. Pretty bad, huh? > >L > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 I used to drink...i don¹t know...maybe 16 oz a day tops when I lived with my parents and it was a major ordeal to get someone to take me to the bathroom. Then when I moved out my husband kind of forced me to pee more often, which in turn made me think I could drink more and things got slightly more normal. However it wasn¹t until some SMA friends and I did a test study of the effects of a certain supplement on SMA that I learned how important water is. With this supplement, you had to drink a TON of water, I forget the actual amount but it was over 60 oz a day. So I started drinking! at the end of our test we found that several people got stronger (I did) but many more others did not. When we looked at the details we realized the people who drank the 60 + oz of water got stronger and those who did not or could not up their fluids did not experience additional strength. June Price had the idea that maybe it was the water and not the supplement so we did a water test and sure enough just by drinking 60 + oz a day we all got noticeably stronger and had more energy and endurance. The only problem was I got addicted and now if I don¹t get 80 oz a day I feel horrible and weak!! (note this is just water, other liquids didn¹t work the same.) On 10/23/05 11:48 PM, " Nick Dupree " <nickdupree@...> wrote: > Yes please don't dehydrate. seeing lauren, almost everyone on the list > lately doing this scares me bad, knowing what alana's been through. > > you risk kidney stones later. > > Nick > > alrt@... wrote: > >> >oh, my, lori. i understand the dilemma only too well, but my stone-riddled >> kidneys cringed at this. i recommend that folks restricting fluids get >> checked now and then for kidney stones and bladder cancer. i have big >> regrets about my own fluid restriction. wish i had at least swallowed my ego >> and wore incontinence underpants before i got so sick. >> > >> >i am grateful chuck and i are able to decide whether he does my care or not. >> i strikes me that when people say " primary " care provider it often seems to >> mean " only " care provider. people seem to make it work well on this list. >> in my work i've seen very few relationships survive under such circumstances. >> hats off! >> > >> >if only our government would not cut us off of basic care for being married >> and pay workers a decent wage so we could find good ones and keep them. >> > >> >alana >> > >> >Subject: Re: Re: PCA'S--managing our life w/ and without >> them--Lori >> >Date: Mon, 24 Oct 2005 02:52:34 +0000 >> > >> > >> >Maybe 12 to 16 ozs a day. Pretty bad, huh? >> > >> >L >> > >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Okay, I have the same bathroom problem. Once, I actually held it in for over 16 hours, while on our trip to Poland. Even though my mom got me those depends underpants/adult-diapers, I refused to pee into it. I could not let myself lose my pride, I felt I would lose my dignity and I'd become like an infant, and if anyone found out, they'd laugh at me. When I began my internship, I was having severe stomach pain, and it lasted for 3 years, and the doctors told me I was fine, so they just put me down as having chronic pain. I finally figured out why the pain was so horrid. It was all from anxiety. As soon as my doctor put me on a medication for anxiety/depression was when I finally was able to function. It was like night and day. For those 3 years, my family doctor first assumed that the SMA was progressing and that I was dying. While I was lying in the hospital, in pain, she said this: " Maggie, you need to face the fact that your disease is progressing, " and later that day she told me: " Its just gas pain, suck it up! " Then she decided to put me in some sort of detox because she thought I was a pain-killer addict. She sent 4 psychologists to see me, and 2 psychiatrists. They all said the same thing, you have stress because you have pain that cannot be explained. And all this time, it was the opposite. My pain was caused by stress. My parents then took me to Mayo clinic, and my doctor gave me methadone for the pain. I took one pill and thought I was losing my mind. Mayo didn't help either. I changed doctors and hospitals. I truly HATE that doctor. But I hate her most for what she said to my mom. My mom is an RN and used to work at the doctors office, and one day, out of the blue, she said to my mom, " I feel so sorry for you , you're going to have to live through the death of both of your children. " I found this to be beyond cruel. My mom said that only God knows when each one of us will die, it takes one second for an accident to happen. Anyway, to get back to the bladder topic. While at my internship, the stomach pain was still a mystery and I sometimes had to take 2 vicodins every 4 hours, sometimes I would end-up taking 8-10 a day. So I would eventually ruin my liver too. It was then that I put my health first, and my pride aside. I wore those adult diapers. I didn't want the added strain on my kidneys to add to my stomach pain. I had horrible kidney pain so often. I would hold my urine all day, ever since I was in elementary school, so now, its pretty large. :-) It was hard, so hard for me to use those diapers, but I reached a point in my life and enough maturity, to realize that I need this, and it doesn't change who I am. When I told my friends, they said they assumed I use something, since they would spend all day with me, without me going to the bathroom. Everyone is supportive of this, they don't put me down, they still love me for me, and couldn't care less about the diapers. :-) Telling a man about this is the hardest for me. Yet to my surprise, they don't care either. Who knew?! *LOL* ~Meg. ( My Blog = <http://meg77.blogspot.com/> http://meg77.blogspot.com ) " Life is not what happens to you, But how you react to it... For what caused you react will surely pass, But how you continue to react, Can only be passed by you. " _____ From: [mailto: ] On Behalf Of Nick Dupree Sent: Sunday, October 23, 2005 11:48 PM Subject: Re: Re: restricting fluids Yes please don't dehydrate. seeing lauren, almost everyone on the list lately doing this scares me bad, knowing what alana's been through. you risk kidney stones later. Nick alrt@... wrote: >oh, my, lori. i understand the dilemma only too well, but my stone-riddled kidneys cringed at this. i recommend that folks restricting fluids get checked now and then for kidney stones and bladder cancer. i have big regrets about my own fluid restriction. wish i had at least swallowed my ego and wore incontinence underpants before i got so sick. > >i am grateful chuck and i are able to decide whether he does my care or not. i strikes me that when people say " primary " care provider it often seems to mean " only " care provider. people seem to make it work well on this list. in my work i've seen very few relationships survive under such circumstances. hats off! > >if only our government would not cut us off of basic care for being married and pay workers a decent wage so we could find good ones and keep them. > >alana > >Subject: Re: Re: PCA'S--managing our life w/ and without them--Lori >Date: Mon, 24 Oct 2005 02:52:34 +0000 > > >Maybe 12 to 16 ozs a day. Pretty bad, huh? > >L > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 I’ll have to try that 60+ oz. of water thing, maybe I’ll have more energy. Sometimes, I feel worn out, just by getting out of bed. *LOL* And I HATE water. Ick!!! :-) ~Meg. ( My Blog = <http://meg77.blogspot.com/> http://meg77.blogspot.com ) " Life is not what happens to you, But how you react to it... For what caused you react will surely pass, But how you continue to react, Can only be passed by you. " _____ From: [mailto: ] On Behalf Of Sent: Monday, October 24, 2005 12:30 AM Subject: Re: Re: restricting fluids I used to drink...i don¹t know...maybe 16 oz a day tops when I lived with my parents and it was a major ordeal to get someone to take me to the bathroom. Then when I moved out my husband kind of forced me to pee more often, which in turn made me think I could drink more and things got slightly more normal. However it wasn¹t until some SMA friends and I did a test study of the effects of a certain supplement on SMA that I learned how important water is. With this supplement, you had to drink a TON of water, I forget the actual amount but it was over 60 oz a day. So I started drinking! at the end of our test we found that several people got stronger (I did) but many more others did not. When we looked at the details we realized the people who drank the 60 + oz of water got stronger and those who did not or could not up their fluids did not experience additional strength. June Price had the idea that maybe it was the water and not the supplement so we did a water test and sure enough just by drinking 60 + oz a day we all got noticeably stronger and had more energy and endurance. The only problem was I got addicted and now if I don¹t get 80 oz a day I feel horrible and weak!! (note this is just water, other liquids didn¹t work the same.) On 10/23/05 11:48 PM, " Nick Dupree " <nickdupree@...> wrote: > Yes please don't dehydrate. seeing lauren, almost everyone on the list > lately doing this scares me bad, knowing what alana's been through. > > you risk kidney stones later. > > Nick > > alrt@... wrote: > >> >oh, my, lori. i understand the dilemma only too well, but my stone-riddled >> kidneys cringed at this. i recommend that folks restricting fluids get >> checked now and then for kidney stones and bladder cancer. i have big >> regrets about my own fluid restriction. wish i had at least swallowed my ego >> and wore incontinence underpants before i got so sick. >> > >> >i am grateful chuck and i are able to decide whether he does my care or not. >> i strikes me that when people say " primary " care provider it often seems to >> mean " only " care provider. people seem to make it work well on this list. >> in my work i've seen very few relationships survive under such circumstances. >> hats off! >> > >> >if only our government would not cut us off of basic care for being married >> and pay workers a decent wage so we could find good ones and keep them. >> > >> >alana >> > >> >Subject: Re: Re: PCA'S--managing our life w/ and without >> them--Lori >> >Date: Mon, 24 Oct 2005 02:52:34 +0000 >> > >> > >> >Maybe 12 to 16 ozs a day. Pretty bad, huh? >> > >> >L >> > >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 I don't think there anything to be ashame of using diapers or underpants..I am sure there many of us with physical disability that have to use these...Let them laught,I for sure don't care.... > > Okay, I have the same bathroom problem. Once, I actually held it in for > over 16 hours, while on our trip to Poland. Even though my mom got me those > depends underpants/adult-diapers, I refused to pee into it. I could not let > myself lose my pride, I felt I would lose my dignity and I'd become like an > infant, and if anyone found out, they'd laugh at me. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 ok, told myself to restrict my posting because I'm always the oddball view, but here I go again with an even more odd one. Has anyone ever tried the special devices / female urinals / whatever you want to call them that June Price featured in Living SMArt? Getting out there into the world requires creativity. Of course every person and schedule is different. My special homemade method, however weird it might be to everyone else, gives me the freedom not to worry about fluid. Still don't make the 60 ounces, though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Meg, Do you still have chronic pain though? You said you didn't want the additional kidney/bladder pain so I wasn't sure if your pain has now subsided after the rx for anxiety. I also have unknown chronic abdominal pain. There are many theories like my severe scoliosis, slow motility, progression of SMA, etc but no confirmed dx. I am on a very high dose of fentonyl duragesic patches and oxycodone for breakthrough for yrs and have taken some sort of narc since 99. I can't even tell you the amount of times I've been admitted to the hosp (CHOP) for pain management since 99. They have checked my kidneys and they seem fine, eventho I too held my urine for hrs most of my life. The only result of doing this is a stretched bladder that can hold over 1000 cc of urine. So, I still do not pee much during the day. I try to drink as much as I can, but eating and drinking, or a large volume in my stomach, add to the pain. I'm intrigued by your statement that stress and anxiety cause or add to your pain. Are you saying anxiety is the cause or it adds and increases your pain? I agree anxiety, stress, and state of mind can affect pain levels, but I am not sure it can be the sole cause...at least for me. I do take anxiety meds and have since the horrible pain started. I'm sorry to hear you have gone through the " it's all in your mind " dx and called a pain killer addict from drs about pain. I truly hate Drs who tell their pts its all in their heads. I have so many friends that have been also told their chronic pain is in their heads, and nurses who believe you are addicted when you ask them for your med 15 mins before your q4 pain med is due, when we all know it takes them an eternity to get the med from the med room to your room b/c they either need the narc key from another nurse, or other pts needs, emergencies, or they forget they got it in the 1st place b/c they are sidetracked. After those experiences wouldn't you be paranoid you might not get your scheduled pain med? Hosp nurses still do not understand the difference btw chronic pain and acute pain, and since they can't see it on a monitor, they do not believe its a valid part of an assessment and important to remedy when out of control. Sorry for the rant, I'll get off my soap box. I am interested in your response about anxiety being the sole cause of pain tho, unless I misunderstood. Thanks, Kimi In a message dated 10/24/2005 11:44:37 A.M. Eastern Daylight Time, pink-tulip@... writes: Anyway, to get back to the bladder topic. While at my internship, the stomach pain was still a mystery and I sometimes had to take 2 vicodins every 4 hours, sometimes I would end-up taking 8-10 a day. So I would eventually ruin my liver too. It was then that I put my health first, and my pride aside. I wore those adult diapers. I didn't want the added strain on my kidneys to add to my stomach pain. I had horrible kidney pain so often. I would hold my urine all day, ever since I was in elementary school, so now, its pretty large. :-) It was hard, so hard for me to use those diapers, but I reached a point in my life and enough maturity, to realize that I need this, and it doesn't change who I am. When I told my friends, they said they assumed I use something, since they would spend all day with me, without me going to the bathroom. Everyone is supportive of this, they don't put me down, they still love me for me, and couldn't care less about the diapers. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 I've had success with the freshette device for women. My undergraduate years I restricted fluids a lot until I heard about the freshette and bought one. It enabled me to use a restroom away from home. At the time I was transferring by myself if at my apartment, but would have trouble in public places so this device was great! I could drink as I wanted and urinated as needed. Unfortunately, the last year of my life has seen a HUGE progression in my SMA and I am no longer as independent as before. The freshette requires a semi-stand position or an awkwardly close position similar to nearly hovering over the toilet. I'm not able to semi-stand anymore, nor am I able to get my clothes on or off by myself. I am, however, still able to get into a position that enables me to use the freshette when I'm home alone and need to go to the bathroom. In public I'm without a restroom all day. At home I can go if I wear a dress/skirt without panties. Furthermore, I cannot remain in the necessary position for too long and become exhausted from the task. So I typically will not fully relieve my bladder when I am alone using the freshette, but it's better than not going at all when there is no other option available. <3 Kendra > > ok, told myself to restrict my posting because I'm always the oddball > view, but here I go again with an even more odd one. > > Has anyone ever tried the special devices / female urinals / whatever > you want to call them that June Price featured in Living SMArt? > Getting out there into the world requires creativity. Of course every > person and schedule is different. My special homemade method, however > weird it might be to everyone else, gives me the freedom not to worry > about fluid. Still don't make the 60 ounces, though. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 In a message dated 10/24/2005 2:06:34 PM Eastern Standard Time, cenlared@... writes: Still don't make the 60 ounces, though. Just wanted to point out that, depending on your weight, 60 oz can be way too much/little. After 28-30 oz, my urine is clear - a good, hydated color is a very pale yellow. (pays way too much attention to pee) Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 - she's two! http://www.babiesonline.com/babies/o/oliviathegreat/ A new addition to arrive November 28th, 2005- it's a boy! http://babiesonline.com/babies/m/mama20305/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 What is your method? I'm curious, as I'd certainly love to be able to go when I need to. Blessings, Holly > > From: " cenlared " <cenlared@...> > Date: 2005/10/24 Mon PM 04:05:44 GST > > Subject: Re: restricting fluids > > ok, told myself to restrict my posting because I'm always the oddball > view, but here I go again with an even more odd one. > > Has anyone ever tried the special devices / female urinals / whatever > you want to call them that June Price featured in Living SMArt? > Getting out there into the world requires creativity. Of course every > person and schedule is different. My special homemade method, however > weird it might be to everyone else, gives me the freedom not to worry > about fluid. Still don't make the 60 ounces, though. > > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 In a message dated 10/24/2005 6:41:46 P.M. Eastern Daylight Time, those2@... writes: Heheh...I hate water too! Coke and 7-Up are much more tasty! Lori I hate water too, but have you tried fruit2O? I like the strawberry one, and its noncarbonated so its actually water just flavored! So now I drink more " water. " Kimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 In a message dated 10/24/2005 6:58:31 P.M. Eastern Daylight Time, those2@... writes: I cannot use any special devices, urinals, etc. I have almost zero hand/arm function. I've wondered about getting the mic button (I think that's what it's called) but even than I could not do the clothing management required. If I were home all day and naked then that would probably be the solution. L I think you mean the suprapubic cath. The mic key is a feeding tube button. Kimi PS Yes being naked would solve a lot of problems, and I'm sure the men in our lives would love to come home to that ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 In a message dated 10/24/2005 7:09:53 P.M. Eastern Daylight Time, pink-tulip@... writes: But if it means having more strength or energy, it will be worth drinking icky water and soiling my clothes. :-) But Meg, if you are soiled all the time from peeing your brains out, how will you be able to go do things w/ur new regained strength except change your diaper all the time! j/k Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Oh, and Kimi, I was on oxycodone, oxicontin, fentanyl, demarol, Tylenol 3, and methadone. I detoxed myself from those because they didn't help the pain much, but got shortness of breath and panic attacks. ~Meg. ( My Blog = <http://meg77.blogspot.com/> http://meg77.blogspot.com ) " Life is not what happens to you, But how you react to it... For what caused you react will surely pass, But how you continue to react, Can only be passed by you. " _____ From: [mailto: ] On Behalf Of Ksmile96@... Sent: Monday, October 24, 2005 5:06 PM Subject: Re: Re: restricting fluids Meg, Do you still have chronic pain though? You said you didn't want the additional kidney/bladder pain so I wasn't sure if your pain has now subsided after the rx for anxiety. I also have unknown chronic abdominal pain. There are many theories like my severe scoliosis, slow motility, progression of SMA, etc but no confirmed dx. I am on a very high dose of fentonyl duragesic patches and oxycodone for breakthrough for yrs and have taken some sort of narc since 99. I can't even tell you the amount of times I've been admitted to the hosp (CHOP) for pain management since 99. They have checked my kidneys and they seem fine, eventho I too held my urine for hrs most of my life. The only result of doing this is a stretched bladder that can hold over 1000 cc of urine. So, I still do not pee much during the day. I try to drink as much as I can, but eating and drinking, or a large volume in my stomach, add to the pain. I'm intrigued by your statement that stress and anxiety cause or add to your pain. Are you saying anxiety is the cause or it adds and increases your pain? I agree anxiety, stress, and state of mind can affect pain levels, but I am not sure it can be the sole cause...at least for me. I do take anxiety meds and have since the horrible pain started. I'm sorry to hear you have gone through the " it's all in your mind " dx and called a pain killer addict from drs about pain. I truly hate Drs who tell their pts its all in their heads. I have so many friends that have been also told their chronic pain is in their heads, and nurses who believe you are addicted when you ask them for your med 15 mins before your q4 pain med is due, when we all know it takes them an eternity to get the med from the med room to your room b/c they either need the narc key from another nurse, or other pts needs, emergencies, or they forget they got it in the 1st place b/c they are sidetracked. After those experiences wouldn't you be paranoid you might not get your scheduled pain med? Hosp nurses still do not understand the difference btw chronic pain and acute pain, and since they can't see it on a monitor, they do not believe its a valid part of an assessment and important to remedy when out of control. Sorry for the rant, I'll get off my soap box. I am interested in your response about anxiety being the sole cause of pain tho, unless I misunderstood. Thanks, Kimi In a message dated 10/24/2005 11:44:37 A.M. Eastern Daylight Time, pink-tulip@... writes: Anyway, to get back to the bladder topic. While at my internship, the stomach pain was still a mystery and I sometimes had to take 2 vicodins every 4 hours, sometimes I would end-up taking 8-10 a day. So I would eventually ruin my liver too. It was then that I put my health first, and my pride aside. I wore those adult diapers. I didn't want the added strain on my kidneys to add to my stomach pain. I had horrible kidney pain so often. I would hold my urine all day, ever since I was in elementary school, so now, its pretty large. :-) It was hard, so hard for me to use those diapers, but I reached a point in my life and enough maturity, to realize that I need this, and it doesn't change who I am. When I told my friends, they said they assumed I use something, since they would spend all day with me, without me going to the bathroom. Everyone is supportive of this, they don't put me down, they still love me for me, and couldn't care less about the diapers. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Ughh, that is a lot of suffering to go through! I think it's especially bad when health professionals try to minimize it. I hope things are much better now. The thing that worries me about diapers is the possibility that it will get too saturated and leak. Also, I would be concerned about an oder? Do you or anyone else have comments about these issues? Thank you. L Pink-Tulip wrote: > Anyway, to get back to the bladder topic. While at my internship, the > stomach pain was still a mystery and I sometimes had to take 2 vicodins > every 4 hours, sometimes I would end-up taking 8-10 a day. So I would > eventually ruin my liver too. It was then that I put my health first, and > my pride aside. I wore those adult diapers. I didn't want the added > strain > on my kidneys to add to my stomach pain. I had horrible kidney pain so > often. I would hold my urine all day, ever since I was in elementary > school, so now, its pretty large. :-) It was hard, so hard for me to use > those diapers, but I reached a point in my life and enough maturity, to > realize that I need this, and it doesn't change who I am. When I told my > friends, they said they assumed I use something, since they would > spend all > day with me, without me going to the bathroom. Everyone is supportive of > this, they don't put me down, they still love me for me, and couldn't care > less about the diapers. :-) > > > > Telling a man about this is the hardest for me. Yet to my surprise, they > don't care either. Who knew?! *LOL* > > > > ~Meg. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Heheh...I hate water too! Coke and 7-Up are much more tasty! Lori Pink-Tulip wrote: > I’ll have to try that 60+ oz. of water thing, maybe I’ll have more energy. > Sometimes, I feel worn out, just by getting out of bed. *LOL* > > > > And I HATE water. Ick!!! :-) > > > > ~Meg. > > ( My Blog = <http://meg77.blogspot.com/> http://meg77.blogspot.com ) > > > > " Life is not what happens to you, > > But how you react to it... > > For what caused you react will surely pass, > > But how you continue to react, > > Can only be passed by you. " > > > > _____ > > From: [mailto: ] On > Behalf Of > Sent: Monday, October 24, 2005 12:30 AM > > Subject: Re: Re: restricting fluids > > > > I used to drink...i don¹t know...maybe 16 oz a day tops when I lived > with my > parents and it was a major ordeal to get someone to take me to the > bathroom. > Then when I moved out my husband kind of forced me to pee more often, > which > in turn made me think I could drink more and things got slightly more > normal. However it wasn¹t until some SMA friends and I did a test study of > the effects of a certain supplement on SMA that I learned how important > water is. With this supplement, you had to drink a TON of water, I forget > the actual amount but it was over 60 oz a day. So I started drinking! at > the end of our test we found that several people got stronger (I did) but > many more others did not. When we looked at the details we realized the > people who drank the 60 + oz of water got stronger and those who did > not or > could not up their fluids did not experience additional strength. June > Price had the idea that maybe it was the water and not the supplement > so we > did a water test and sure enough just by drinking 60 + oz a day we all got > noticeably stronger and had more energy and endurance. The only > problem was > I got addicted and now if I don¹t get 80 oz a day I feel horrible and > weak!! > (note this is just water, other liquids didn¹t work the same.) > > > > > > On 10/23/05 11:48 PM, " Nick Dupree " <nickdupree@...> wrote: > > > Yes please don't dehydrate. seeing lauren, almost everyone on the list > > lately doing this scares me bad, knowing what alana's been through. > > > > you risk kidney stones later. > > > > Nick > > > > alrt@... wrote: > > > >> >oh, my, lori. i understand the dilemma only too well, but my > stone-riddled > >> kidneys cringed at this. i recommend that folks restricting fluids get > >> checked now and then for kidney stones and bladder cancer. i have big > >> regrets about my own fluid restriction. wish i had at least > swallowed my > ego > >> and wore incontinence underpants before i got so sick. > >> > > >> >i am grateful chuck and i are able to decide whether he does my > care or > not. > >> i strikes me that when people say " primary " care provider it often > seems > to > >> mean " only " care provider. people seem to make it work well on this > list. > >> in my work i've seen very few relationships survive under such > circumstances. > >> hats off! > >> > > >> >if only our government would not cut us off of basic care for being > married > >> and pay workers a decent wage so we could find good ones and keep them. > >> > > >> >alana > >> > > >> >Subject: Re: Re: PCA'S--managing our life w/ and without > >> them--Lori > >> >Date: Mon, 24 Oct 2005 02:52:34 +0000 > >> > > >> > > >> >Maybe 12 to 16 ozs a day. Pretty bad, huh? > >> > > >> >L > >> > > >> > > >> > > >> > > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 I cannot use any special devices, urinals, etc. I have almost zero hand/arm function. I've wondered about getting the mic button (I think that's what it's called) but even than I could not do the clothing management required. If I were home all day and naked then that would probably be the solution. L cenlared wrote: > ok, told myself to restrict my posting because I'm always the oddball > view, but here I go again with an even more odd one. > > Has anyone ever tried the special devices / female urinals / whatever > you want to call them that June Price featured in Living SMArt? > Getting out there into the world requires creativity. Of course every > person and schedule is different. My special homemade method, however > weird it might be to everyone else, gives me the freedom not to worry > about fluid. Still don't make the 60 ounces, though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Well, let me tell you about the leak/saturation/odor issue with diapers. Its all there! If it leaks and saturates your clothes or even your seat cover, its time for the laundry to be done. The odor, I suggest lots of perfume, special wipes and wash you bum every time you change the diaper. Your behind will have to get special treatment. Think of it as something like getting a facial, but on your behind. :-) I'll be honest and blunt. My mom bought a big bottle of disinfectant soap that you don't need to rinse off. Either her or granny, put a sock on their hand/arm, and put plenty of the soap on it, and I get a nice bum-massage, and I remain odor-free, day after day. I'll be trying that 60+ oz water thing, so I'll need lots of more soap, since my bladder will surely be overwhelmed by the sudden addition in fluids. But if it means having more strength or energy, it will be worth drinking icky water and soiling my clothes. :-) ~Meg. ( My Blog = <http://meg77.blogspot.com/> http://meg77.blogspot.com ) " Life is not what happens to you, But how you react to it... For what caused you react will surely pass, But how you continue to react, Can only be passed by you. " _____ From: [mailto: ] On Behalf Of Those Two Sent: Monday, October 24, 2005 5:39 PM Subject: Re: Re: restricting fluids Ughh, that is a lot of suffering to go through! I think it's especially bad when health professionals try to minimize it. I hope things are much better now. The thing that worries me about diapers is the possibility that it will get too saturated and leak. Also, I would be concerned about an oder? Do you or anyone else have comments about these issues? Thank you. L Pink-Tulip wrote: > Anyway, to get back to the bladder topic. While at my internship, the > stomach pain was still a mystery and I sometimes had to take 2 vicodins > every 4 hours, sometimes I would end-up taking 8-10 a day. So I would > eventually ruin my liver too. It was then that I put my health first, and > my pride aside. I wore those adult diapers. I didn't want the added > strain > on my kidneys to add to my stomach pain. I had horrible kidney pain so > often. I would hold my urine all day, ever since I was in elementary > school, so now, its pretty large. :-) It was hard, so hard for me to use > those diapers, but I reached a point in my life and enough maturity, to > realize that I need this, and it doesn't change who I am. When I told my > friends, they said they assumed I use something, since they would > spend all > day with me, without me going to the bathroom. Everyone is supportive of > this, they don't put me down, they still love me for me, and couldn't care > less about the diapers. :-) > > > > Telling a man about this is the hardest for me. Yet to my surprise, they > don't care either. Who knew?! *LOL* > > > > ~Meg. > A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 You guys sound just like my husband -- he hates water with passion!!! Look, you just have to get used to it. Buy some nice fancy Evian water, or put a lemon in it for something. I only drink filtered water, not tap water. Tap water tastes disgusting and isn't really healthy anyway, but filtered or spring water taste good!!!! Also, the way I work in my 80 + oz a day is sorta strange. I get up and pee, then I drink 30oz of water. Then I go do my breathing treatment which takes 60-90 mins. After the treatment I pee again and get dressed and go about my day. I don't drink much at all during the day -- maybe 8oz all day, I usually sip here and there. Then about 2-3 hrs before bed I drink like crazy, about 50 oz in an hour. By the time I am ready for bed I have to pee a lot but then I do and am fine all night. I gradually trained my body to do this because I need the fluids but I can't drink throughout the day or my life/schedule would be screwed. This way, I still only pee 3-4 times a day and my bladder is only stressed for a half hour or so before bed. Good luck! N. On 10/24/05 5:40 PM, " Those Two " <those2@...> wrote: > Heheh...I hate water too! Coke and 7-Up are much more tasty! > > Lori > > Pink-Tulip wrote: > >> I¡¯ll have to try that 60+ oz. of water thing, maybe I¡¯ll have more energy. >> Sometimes, I feel worn out, just by getting out of bed. *LOL* >> >> >> >> And I HATE water. Ick!!! :-) >> >> >> >> ~Meg. >> >> ( My Blog = <http://meg77.blogspot.com/> http://meg77.blogspot.com ) >> >> >> >> " Life is not what happens to you, >> >> But how you react to it... >> >> For what caused you react will surely pass, >> >> But how you continue to react, >> >> Can only be passed by you. " >> >> >> >> _____ >> >> From: [mailto: ] On >> Behalf Of >> Sent: Monday, October 24, 2005 12:30 AM >> >> Subject: Re: Re: restricting fluids >> >> >> >> I used to drink...i don©öt know...maybe 16 oz a day tops when I lived >> with my >> parents and it was a major ordeal to get someone to take me to the >> bathroom. >> Then when I moved out my husband kind of forced me to pee more often, >> which >> in turn made me think I could drink more and things got slightly more >> normal. However it wasn©öt until some SMA friends and I did a test study of >> the effects of a certain supplement on SMA that I learned how important >> water is. With this supplement, you had to drink a TON of water, I forget >> the actual amount but it was over 60 oz a day. So I started drinking! at >> the end of our test we found that several people got stronger (I did) but >> many more others did not. When we looked at the details we realized the >> people who drank the 60 + oz of water got stronger and those who did >> not or >> could not up their fluids did not experience additional strength. June >> Price had the idea that maybe it was the water and not the supplement >> so we >> did a water test and sure enough just by drinking 60 + oz a day we all got >> noticeably stronger and had more energy and endurance. The only >> problem was >> I got addicted and now if I don©öt get 80 oz a day I feel horrible and >> weak!! >> (note this is just water, other liquids didn©öt work the same.) >> >> >> >> >> >> On 10/23/05 11:48 PM, " Nick Dupree " <nickdupree@...> wrote: >> >>> Yes please don't dehydrate. seeing lauren, almost everyone on the list >>> lately doing this scares me bad, knowing what alana's been through. >>> >>> you risk kidney stones later. >>> >>> Nick >>> >>> alrt@... wrote: >>> >>>>> oh, my, lori. i understand the dilemma only too well, but my >> stone-riddled >>>> kidneys cringed at this. i recommend that folks restricting fluids get >>>> checked now and then for kidney stones and bladder cancer. i have big >>>> regrets about my own fluid restriction. wish i had at least >> swallowed my >> ego >>>> and wore incontinence underpants before i got so sick. >>>>> >>>>> i am grateful chuck and i are able to decide whether he does my >> care or >> not. >>>> i strikes me that when people say " primary " care provider it often >> seems >> to >>>> mean " only " care provider. people seem to make it work well on this >> list. >>>> in my work i've seen very few relationships survive under such >> circumstances. >>>> hats off! >>>>> >>>>> if only our government would not cut us off of basic care for being >> married >>>> and pay workers a decent wage so we could find good ones and keep them. >>>>> >>>>> alana >>>>> >>>>> Subject: Re: Re: PCA'S--managing our life w/ and without >>>> them--Lori >>>>> Date: Mon, 24 Oct 2005 02:52:34 +0000 >>>>> >>>>> >>>>> Maybe 12 to 16 ozs a day. Pretty bad, huh? >>>>> >>>>> L >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 One thing in regards to odors is that a hydrated person will have virtually clear urine and its smell is very low, but that funky yellow stuff from lack of water is smelly and not good for your insides. I do understand you only have so much space for a certain volume. Am I correct in assuming that most SMA people dont have the upper body strength needed to get in and out of the chair on their own? As far as perfume goes...I worked once with some french girls right from the heart of France and I know that from 12 hour work days in an ice cream shop in Myrtle Beach SC where it was 90+ degrees in the store dailey they wore the same clothes and hair never changing for 4 plus days. So now every time I smell an over abundance of it I instantly think they just need a dang bath. BUT dont mistake this comment for noncompassion, I understand you got to do what you got to do. Also, perfume will kill some people like me with extreme chemical allergies. I cant even read a magazine with a sniff strip in it. I once wanted to see this gal that I thought was a prefect match, but it was her cat or me, guess who won that one ¿?¿ > > > Anyway, to get back to the bladder topic. While at my internship, the > > stomach pain was still a mystery and I sometimes had to take 2 vicodins > > every 4 hours, sometimes I would end-up taking 8-10 a day. So I would > > eventually ruin my liver too. It was then that I put my health first, and > > my pride aside. I wore those adult diapers. I didn't want the added > > strain > > on my kidneys to add to my stomach pain. I had horrible kidney pain so > > often. I would hold my urine all day, ever since I was in elementary > > school, so now, its pretty large. :-) It was hard, so hard for me to use > > those diapers, but I reached a point in my life and enough maturity, to > > realize that I need this, and it doesn't change who I am. When I told my > > friends, they said they assumed I use something, since they would > > spend all > > day with me, without me going to the bathroom. Everyone is supportive of > > this, they don't put me down, they still love me for me, and couldn't care > > less about the diapers. :-) > > > > > > > > Telling a man about this is the hardest for me. Yet to my surprise, they > > don't care either. Who knew?! *LOL* > > > > > > > > ~Meg. > > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: - unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@a... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@a... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 I live in the middle of the texas hill country and at times in the summer we are at 110+ in the shade. I work outdoors alot and I watch my pee very closely haha !! My skinny butt at 6'3'' and 140 must watch that closely. Last check up was only 4.5% body fat. So then I get the lecture on not eating etc....good lord I was born skinny and only grown 1 inch and 8 lbs since I was 13. > > > In a message dated 10/24/2005 2:06:34 PM Eastern Standard Time, > cenlared@y... writes: > > Still don't make the 60 ounces, though. > > > Just wanted to point out that, depending on your weight, 60 oz can be way > too much/little. After 28-30 oz, my urine is clear - a good, hydated color is a > very pale yellow. (pays way too much attention to pee) > > Amy > Wife to Will 11/3/95 > Mama to Olivia Isabelle 9/18/03 - she's two! > http://www.babiesonline.com/babies/o/oliviathegreat/ > A new addition to arrive November 28th, 2005- it's a boy! > http://babiesonline.com/babies/m/mama20305/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Good point! You can actually get sick from drinking too much fluids too. Jenn blueyedaze@... wrote: >Just wanted to point out that, depending on your weight, 60 oz can be way >too much/little. After 28-30 oz, my urine is clear - a good, hydated color is a >very pale yellow. (pays way too much attention to pee) > >Amy >Wife to Will 11/3/95 >Mama to Olivia Isabelle 9/18/03 - she's two! >http://www.babiesonline.com/babies/o/oliviathegreat/ >A new addition to arrive November 28th, 2005- it's a boy! >http://babiesonline.com/babies/m/mama20305/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 lori, the diapers helped me some so i could drink a bit a work and still concentrate. no smell. they can leak. i experimented with brands. i could never " cut loose " but i used them to pee enough so i wasn't uncomfortable. alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 nicole, this is a method i may be able to work up to and will try. i do notice however that certain days water will go through me fast, other days i retain it longer and it seems to hit me a few hrs later, so the fluids in the morning in that large amount id have to try on days where i could test it first to see if it all goes through me...not a good idea to have my first run at it be where im out alone 10 hrs by myself like tomorrow! > >>> > >>>>> oh, my, lori. i understand the dilemma only too well, but my > >> stone-riddled > >>>> kidneys cringed at this. i recommend that folks restricting fluids get > >>>> checked now and then for kidney stones and bladder cancer. i have big > >>>> regrets about my own fluid restriction. wish i had at least > >> swallowed my > >> ego > >>>> and wore incontinence underpants before i got so sick. > >>>>> > >>>>> i am grateful chuck and i are able to decide whether he does my > >> care or > >> not. > >>>> i strikes me that when people say " primary " care provider it often > >> seems > >> to > >>>> mean " only " care provider. people seem to make it work well on this > >> list. > >>>> in my work i've seen very few relationships survive under such > >> circumstances. > >>>> hats off! > >>>>> > >>>>> if only our government would not cut us off of basic care for being > >> married > >>>> and pay workers a decent wage so we could find good ones and keep them. > >>>>> > >>>>> alana > >>>>> > >>>>> Subject: Re: Re: PCA'S--managing our life w/ and without > >>>> them--Lori > >>>>> Date: Mon, 24 Oct 2005 02:52:34 +0000 > >>>>> > >>>>> > >>>>> Maybe 12 to 16 ozs a day. Pretty bad, huh? > >>>>> > >>>>> L > >>>>> > >>>>> > >>>>> > >>>>> > >>>>> > >>>>> > >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 That¹s right for sure. If I were you I would work up to it slowly. Like on a day you have help, just drink an extra 8 oz and let your body get used to that. I found that if I am consistent in when/how much I drink my body processes it consistently as well, but if I have a day where I for some reason drink 38oz in the morning instead of my usual 30, I will have to pee in the middle of the day really bad. It¹s weird actually! N. On 10/24/05 8:22 PM, " " <laurenmarie791@...> wrote: > nicole, > this is a method i may be able to work up to and will try. i do > notice however that certain days water will go through me fast, > other days i retain it longer and it seems to hit me a few hrs > later, so the fluids in the morning in that large amount id have to > try on days where i could test it first to see if it all goes > through me...not a good idea to have my first run at it be where im > out alone 10 hrs by myself like tomorrow! > > > > >>>>> > >>> >>>>>>> > >>>>> oh, my, lori. i understand the dilemma only too well, but my >>>> > >> stone-riddled >>>>>> > >>>> kidneys cringed at this. i recommend that folks restricting > fluids get >>>>>> > >>>> checked now and then for kidney stones and bladder cancer. i > have big >>>>>> > >>>> regrets about my own fluid restriction. wish i had at least >>>> > >> swallowed my >>>> > >> ego >>>>>> > >>>> and wore incontinence underpants before i got so sick. >>>>>>> > >>>>> >>>>>>> > >>>>> i am grateful chuck and i are able to decide whether he does > my >>>> > >> care or >>>> > >> not. >>>>>> > >>>> i strikes me that when people say " primary " care provider it > often >>>> > >> seems >>>> > >> to >>>>>> > >>>> mean " only " care provider. people seem to make it work well > on this >>>> > >> list. >>>>>> > >>>> in my work i've seen very few relationships survive under such >>>> > >> circumstances. >>>>>> > >>>> hats off! >>>>>>> > >>>>> >>>>>>> > >>>>> if only our government would not cut us off of basic care > for being >>>> > >> married >>>>>> > >>>> and pay workers a decent wage so we could find good ones and > keep them. >>>>>>> > >>>>> >>>>>>> > >>>>> alana >>>>>>> > >>>>> >>>>>>> > >>>>> Subject: Re: Re: PCA'S--managing our life w/ > and without >>>>>> > >>>> them--Lori >>>>>>> > >>>>> Date: Mon, 24 Oct 2005 02:52:34 +0000 >>>>>>> > >>>>> >>>>>>> > >>>>> >>>>>>> > >>>>> Maybe 12 to 16 ozs a day. Pretty bad, huh? >>>>>>> > >>>>> >>>>>>> > >>>>> L >>>>>>> > >>>>> >>>>>>> > >>>>> >>>>>>> > >>>>> >>>>>>> > >>>>> >>>>>>> > >>>>> >>>>>>> > >>>>> >>>>>>> > >>>>> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.