Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hi Jeff, Welcome, I'm fairly new to the group but I have problems sometimes bending also. I have a grabber that I use frequently to help me. I don't know if this happens to other people with an SCS but if I lift my arms over my head my stimulation goes way up!!!!! Almost unbearable!!! So I use the grabber to get to items up high also. Take Care, B. in TEXAS ________________________________ From: Shapiro <jmshap@...> Stimulator Sent: Tuesday, December 9, 2008 1:41:09 PM Subject: Introduction Hi all! I just found out about this group, and am very glad it exists! I had the SCS implanted in April 2007. It has helped tremendously. I do have difficulty bending, however. Therefore, I am extremely careful if I have to pick something up! Has anyone else have this problem? Jef Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 I have stimulation changes for bending, reaching, laying down, n various seated positions. It's normal to continue with some limitations and/or stimulation changes. If the stimulation didn't change I would forget I had a stimulator n do something stupid n have my leads move or cause more damage to my back. I'm not a very good patient n I'm very forgetful. Deanna Sent from my iPhone On Dec 9, 2008, at 4:36 PM, B <muttsmom55@...> wrote: Hi Jeff, Welcome, I'm fairly new to the group but I have problems sometimes bending also. I have a grabber that I use frequently to help me. I don't know if this happens to other people with an SCS but if I lift my arms over my head my stimulation goes way up!!!!! Almost unbearable!!! So I use the grabber to get to items up high also. Take Care, B. in TEXAS ________________________________ From: Shapiro <jmshap@...> Stimulator Sent: Tuesday, December 9, 2008 1:41:09 PM Subject: Introduction Hi all! I just found out about this group, and am very glad it exists! I had the SCS implanted in April 2007. It has helped tremendously. I do have difficulty bending, however. Therefore, I am extremely careful if I have to pick something up! Has anyone else have this problem? Jef Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hi Deanna and , I do use a grabber (I need a new one), which is very helpful. It is still frustrating, when I realize I can't do what I used to Jef ________________________________ From: Deanna Ramsey <Photobug33777@...> SCS support group <Stimulator > Sent: Tuesday, December 9, 2008 7:56:54 PM Subject: Re: Back to Jeff I have stimulation changes for bending, reaching, laying down, n various seated positions. It's normal to continue with some limitations and/or stimulation changes. If the stimulation didn't change I would forget I had a stimulator n do something stupid n have my leads move or cause more damage to my back. I'm not a very good patient n I'm very forgetful. Deanna Sent from my iPhone On Dec 9, 2008, at 4:36 PM, B <muttsmom55 (DOT) com> wrote: Hi Jeff, Welcome, I'm fairly new to the group but I have problems sometimes bending also. I have a grabber that I use frequently to help me. I don't know if this happens to other people with an SCS but if I lift my arms over my head my stimulation goes way up!!!!! Almost unbearable!! ! So I use the grabber to get to items up high also. Take Care, B. in TEXAS ____________ _________ _________ __ From: Shapiro <jmshap (DOT) com> Stimulator@gro ups.com Sent: Tuesday, December 9, 2008 1:41:09 PM Subject: Introduction Hi all! I just found out about this group, and am very glad it exists! I had the SCS implanted in April 2007. It has helped tremendously. I do have difficulty bending, however. Therefore, I am extremely careful if I have to pick something up! Has anyone else have this problem? Jef Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 It can be a daily battle realizing or dealing with things I can no longer do....it is frustrating to go from a fully able bodied person to the I need help with almost everything people many of us have become. I miss the good ole days very often! Deanna Sent from my iPhone On Dec 9, 2008, at 7:24 PM, Shapiro <jmshap@...> wrote: Hi Deanna and , I do use a grabber (I need a new one), which is very helpful. It is still frustrating, when I realize I can't do what I used to Jef ________________________________ From: Deanna Ramsey <Photobug33777@...> SCS support group <Stimulator > Sent: Tuesday, December 9, 2008 7:56:54 PM Subject: Re: Back to Jeff I have stimulation changes for bending, reaching, laying down, n various seated positions. It's normal to continue with some limitations and/or stimulation changes. If the stimulation didn't change I would forget I had a stimulator n do something stupid n have my leads move or cause more damage to my back. I'm not a very good patient n I'm very forgetful. Deanna Sent from my iPhone On Dec 9, 2008, at 4:36 PM, B <muttsmom55 (DOT) com> wrote: Hi Jeff, Welcome, I'm fairly new to the group but I have problems sometimes bending also. I have a grabber that I use frequently to help me. I don't know if this happens to other people with an SCS but if I lift my arms over my head my stimulation goes way up!!!!! Almost unbearable!! ! So I use the grabber to get to items up high also. Take Care, B. in TEXAS ____________ _________ _________ __ From: Shapiro <jmshap (DOT) com> Stimulator@gro ups.com Sent: Tuesday, December 9, 2008 1:41:09 PM Subject: Introduction Hi all! I just found out about this group, and am very glad it exists! I had the SCS implanted in April 2007. It has helped tremendously. I do have difficulty bending, however. Therefore, I am extremely careful if I have to pick something up! Has anyone else have this problem? Jef Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 I know what you mean. And it bothers me too, sometimes more than others, but I just have to tell myself it could be worse. I have a 2 year old grandson I can't even pick up. If I want to hold him, I have to sit and hold him on my lap. But I can't change things, I just press on, one day at a time. Take Care, B. in TEXAS ________________________________ From: Shapiro <jmshap@...> Stimulator Sent: Tuesday, December 9, 2008 9:24:17 PM Subject: Re: Back to Jeff Hi Deanna and , I do use a grabber (I need a new one), which is very helpful. It is still frustrating, when I realize I can't do what I used to Jef ________________________________ From: Deanna Ramsey <Photobug33777@...> SCS support group <Stimulator > Sent: Tuesday, December 9, 2008 7:56:54 PM Subject: Re: Back to Jeff I have stimulation changes for bending, reaching, laying down, n various seated positions. It's normal to continue with some limitations and/or stimulation changes. If the stimulation didn't change I would forget I had a stimulator n do something stupid n have my leads move or cause more damage to my back. I'm not a very good patient n I'm very forgetful. Deanna Sent from my iPhone On Dec 9, 2008, at 4:36 PM, B <muttsmom55 (DOT) com> wrote: Hi Jeff, Welcome, I'm fairly new to the group but I have problems sometimes bending also. I have a grabber that I use frequently to help me. I don't know if this happens to other people with an SCS but if I lift my arms over my head my stimulation goes way up!!!!! Almost unbearable!! ! So I use the grabber to get to items up high also. Take Care, B. in TEXAS ____________ _________ _________ __ From: Shapiro <jmshap (DOT) com> Stimulator@gro ups.com Sent: Tuesday, December 9, 2008 1:41:09 PM Subject: Introduction Hi all! I just found out about this group, and am very glad it exists! I had the SCS implanted in April 2007. It has helped tremendously. I do have difficulty bending, however. Therefore, I am extremely careful if I have to pick something up! Has anyone else have this problem? Jef Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 , I can tell you, things could be a lot worse. Just because you have to sit to hold your g'son doesn't mean that you can't build a good relationship with him. I have 2 g'sons that were born just months before I developed RSD 18 years ago, I have 12 g'children that have been born since my diagnosis. Last Sat. we had a family picnic where 9 of my g'children were at. One of my g'sons that was just a baby when I got hurt was there. He challenged me to a race, he on his whip-stick and me in my scooter. is 18 and he doesn't remember me not having RSD. We had a ball, laughing all the while he cheated and rode directly in front of me so that I couldn't beat him without running him down. The kids accept the handicap as though it wasn't there, that is just their grandmother. I always had to sit to hold him but that also meant that I was always in a position to read to him or just to talk to him and listen when he wanted to tell me something. My g'chidren who were born before my diagnosis maybe had a problem at first but now can't really remember me any other way. Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 I know, I just wish I could do so much more with him. I remember playing with my daughters when they were his age. But I will take what I can get, you're right. Take Care, B. in TEXAS ________________________________ From: Dorothy Ratz <dotratz@...> Stimulator Sent: Thursday, December 11, 2008 3:27:58 PM Subject: Re: Back to Jeff , I can tell you, things could be a lot worse. Just because you have to sit to hold your g'son doesn't mean that you can't build a good relationship with him. I have 2 g'sons that were born just months before I developed RSD 18 years ago, I have 12 g'children that have been born since my diagnosis. Last Sat. we had a family picnic where 9 of my g'children were at. One of my g'sons that was just a baby when I got hurt was there. He challenged me to a race, he on his whip-stick and me in my scooter. is 18 and he doesn't remember me not having RSD. We had a ball, laughing all the while he cheated and rode directly in front of me so that I couldn't beat him without running him down. The kids accept the handicap as though it wasn't there, that is just their grandmother. I always had to sit to hold him but that also meant that I was always in a position to read to him or just to talk to him and listen when he wanted to tell me something. My g'chidren who were born before my diagnosis maybe had a problem at first but now can't really remember me any other way. Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 My niece is two. I've had a stimulator and been on crutches all her life. When she wants me to come see something she is doing, she picks up my crutches and says " De De come. " When she wants me to hold her she automatically tells me to sit. When she started walking, she would hold on to my crutches and we would walk together. I had to have the crutches and they gave her the extra help she needed to stay upright. Although I'm not supposed to pick her up, I did yesterday. It was either that or risk her running out in front of a moving car. Although it hurt, I did it anyway. > > Hi Jeff, > > Welcome, I'm fairly new to the group but I have problems sometimes bending also. I have a grabber that I use frequently to help me. I don't know if this happens to other people with an SCS but if I lift my arms over my head my stimulation goes way up!!!!! Almost unbearable!! ! So I use the grabber to get to items up high also. > > Take Care, > B. in TEXAS > > ____________ _________ _________ __ > From: Shapiro <jmshap (DOT) com> > Stimulator@gro ups.com > Sent: Tuesday, December 9, 2008 1:41:09 PM > Subject: Introduction > > Hi all! > I just found out about this group, and am very glad it exists! > I had the SCS implanted in April 2007. It has helped tremendously. > I do have difficulty bending, however. Therefore, I am extremely careful if I have to pick something up! Has anyone else have this problem? > Jef > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 That's the great thing about children. They don't see differences the way we adults do. When I volunteer at the school my sister works at the children don't look at me as disabled. The children treat me just like they would any able-bodied adult that volunteered at school. > > , > I can tell you, things could be a lot worse. Just because you have to sit to hold your g'son doesn't mean that you can't build a good relationship with him. I have 2 g'sons that were born just months before I developed RSD 18 years ago, I have 12 g'children that have been born since my diagnosis. > > Last Sat. we had a family picnic where 9 of my g'children were at. One of my g'sons that was just a baby when I got hurt was there. He challenged me to a race, he on his whip-stick and me in my scooter. is 18 and he doesn't remember me not having RSD. We had a ball, laughing all the while he cheated and rode directly in front of me so that I couldn't beat him without running him down. > > The kids accept the handicap as though it wasn't there, that is just their grandmother. I always had to sit to hold him but that also meant that I was always in a position to read to him or just to talk to him and listen when he wanted to tell me something. > > My g'chidren who were born before my diagnosis maybe had a problem at first but now can't really remember me any other way. > > Dorothy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Oh my gosh!! I didn't know any of that about you Jeff. Were you in Iraq or Afghanistan? I come from a military family and my father was in Viet Nam. He haddaily contact with Agent Orange. When he returned, he was never the same. He retired at age 40 and by 45 started having one health problem after another. I'm sure you've heard of the controversy over Agent Orange (kind of like the controversy of Gulf War Syndrome), the government denied it caused any problems. About 6 months after my father passed, my mother received a letter from the Department of Defense stating my father's health conditions were directly attributed to his contact with Agent Orange. And her portion of his retirement was raised a small amount per month. I feel anyone who serves our country is a hero, but we need to take care of these heros when they return. I don't blame you for wanting to hold off on more surgery. And of course everyone on here cares about you!! I know you are a hero in my eyes. If you don't mind, I would like to add you to my prayer list. I hope you start feeling better soon and it is good to vent like this. I don't write in a lot but I read every word from everyone. Hang in there. Take Care, B. in TEXASFrom: Jeff <inmissouri2003@...> Sent: Tuesday, January 6, 2009 6:51:47 PMSubject: update on me Hi, I was in the hospital for 6 days, out 2 and back in. What is happening is my nervous system is sending pain signals and i am having severe chest pains. The chest pains are being because of my nervous system and is causing severe muscle spasms in my left chest and left arm (like a heart attack) I was shot 5 times and 3 of them were in the left chest during my time in the military and i lost part of my left lung and have an artificial artery in my heart, artificial knee, 3 metal plates and 22 screws holding my face together and they removed the plura (soft lining in the chest wall) They then attached what was left of my lung directly to the chest wall because the lung collapsed 4 times and this keeps the lung from doing that. Well as you can imagine i have a lot of scar tissue both inside and out on my chest. The severe pain is from the lung rubbing on the scar tissue when i am having the muscle spasms because the plura was removed. They now want to operate on me for the 23rd time and cut my chest open and remove scar tissue. I have refused and come home. At this time mentally i can not take another operation. I am sure some of you can understand this. It may change in the future but at this time i would just as soon go meet my maker as being cut on again. wow i have never been this long winded, sorry for that. Anyway gonna get off here just wanted ya'll to know as a few were asking about me (awe i didn't know you cared, just kidding) Regards, Jeff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Welcome Home Jeff please keep us posted LMay From: B <muttsmom55@...>Subject: Re: Back to Jeff Date: Tuesday, January 6, 2009, 7:11 PM Oh my gosh!! I didn't know any of that about you Jeff. Were you in Iraq or Afghanistan? I come from a military family and my father was in Viet Nam. He haddaily contact with Agent Orange. When he returned, he was never the same. He retired at age 40 and by 45 started having one health problem after another. I'm sure you've heard of the controversy over Agent Orange (kind of like the controversy of Gulf War Syndrome), the government denied it caused any problems. About 6 months after my father passed, my mother received a letter from the Department of Defense stating my father's health conditions were directly attributed to his contact with Agent Orange. And her portion of his retirement was raised a small amount per month. I feel anyone who serves our country is a hero, but we need to take care of these heros when they return. I don't blame you for wanting to hold off on more surgery. And of course everyone on here cares about you!! I know you are a hero in my eyes. If you don't mind, I would like to add you to my prayer list. I hope you start feeling better soon and it is good to vent like this. I don't write in a lot but I read every word from everyone. Hang in there. Take Care, B. in TEXAS From: Jeff <inmissouri2003>@grou ps.comSent: Tuesday, January 6, 2009 6:51:47 PMSubject: update on me Hi,I was in the hospital for 6 days, out 2 and back in. What is happeningis my nervous system is sending pain signals and i am having severechest pains. The chest pains are being because of my nervous systemand is causing severe muscle spasms in my left chest and left arm(like a heart attack) I was shot 5 times and 3 of them were in theleft chest during my time in the military and i lost part of my leftlung and have an artificial artery in my heart, artificial knee, 3metal plates and 22 screws holding my face together and they removedthe plura (soft lining in the chest wall) They then attached what wasleft of my lung directly to the chest wall because the lung collapsed4 times and this keeps the lung from doing that. Well as you canimagine i have a lot of scar tissue both inside and out on my chest.The severe pain is from the lung rubbing on the scar tissue when i amhaving the muscle spasms because the plura was removed. They now wantto operate on me for the 23rd time and cut my chest open and removescar tissue. I have refused and come home. At this time mentally i cannot take another operation. I am sure some of you can understand this.It may change in the future but at this time i would just as soon gomeet my maker as being cut on again. wow i have never been this longwinded, sorry for that. Anyway gonna get off here just wanted ya'll toknow as a few were asking about me (awe i didn't know you cared, justkidding)Regards,Jeff Quote Link to comment Share on other sites More sharing options...
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