Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 ((((((((((((((((((((((((!))))))))))))))))))))))))))) May God hold you in the palm of His comforting hand right now. While you know that your Grandpa is in a better place, it still doesn't take away the void that you feel right now. Holding you close to my heart right now. with love, Jenni Proud Air Force Mom! May God guide and protect our troops! Update I believe that I shared with all of you that my Grandpa and my step dad were in the hospital. My step dad is doing better and will be released soon we hope. I received a call late last night that my Grandpa passed away. This is my last living grandparent. I lost all of them within the last 3 years. I am glad for him that he is no longer in pain. His pain was so tremendous these last couple of weeks. But, it hurts to lose anyone. I just wanted to let you know. Thanks friends, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 I'm so sorry for your loss and will say a prayer for you and your family. Love, C On Apr 6, 2005 12:52 PM, faytk@... <faytk@...> wrote: > > I believe that I shared with all of you that my Grandpa and my step dad > were > in the hospital. My step dad is doing better and will be released soon we > hope. > > I received a call late last night that my Grandpa passed away. This is my > last living grandparent. I lost all of them within the last 3 years. I am > glad > for him that he is no longer in pain. His pain was so tremendous these > last > couple of weeks. But, it hurts to lose anyone. > > I just wanted to let you know. > > Thanks friends, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Hello , I am so sorry for your loss. I wish I could reach out and to give you the comfort you need. When I lost my Father all of our children, his grandchildren gathered around him in the hospital for days. They all loved him so much. I fully understand how dear grandparents can be to a child. I have an extremely strong relationship with my grandchildren too so it really is something I can fully understand. When our loved ones are in pain it creates such a mixture of feelings. You want the suffering to stop and you feel so grateful when you know they are no longer in pain, but your heart still feels like it has been orphaned for awhile and there is an ache that wants to be calmed. I will keep your family in my prayers. Rashelle Harness the Powerful Benefits of Oxygen with LifeLift. Oxygen burns fat, tones muscles, reduces stress Breathe in the most efficient way possible with Life Lift! www.oxygenlift.net. Life Lift is the Original Aerobic Breathing Update I believe that I shared with all of you that my Grandpa and my step dad were in the hospital. My step dad is doing better and will be released soon we hope. I received a call late last night that my Grandpa passed away. This is my last living grandparent. I lost all of them within the last 3 years. I am glad for him that he is no longer in pain. His pain was so tremendous these last couple of weeks. But, it hurts to lose anyone. I just wanted to let you know. Thanks friends, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Love and prayers to you, - - I'm sorry about your Grandfather. Melinda Update I believe that I shared with all of you that my Grandpa and my step dad were in the hospital. My step dad is doing better and will be released soon we hope. I received a call late last night that my Grandpa passed away. This is my last living grandparent. I lost all of them within the last 3 years. I am glad for him that he is no longer in pain. His pain was so tremendous these last couple of weeks. But, it hurts to lose anyone. I just wanted to let you know. Thanks friends, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 dear jandc yes i have but it would involve moving to cleveland because they would make it really tough for me afterward..and everyone i thing anyhing of is where i live now and its lonely enough now ...might have to consider it down the road though FredJandc <jandc@...> wrote: Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting. Re: Update Dear I wish i had your guts and drive..my dr's seem to care more about how long my battery is going to last rather than the quality of my life they reduced my ace maker from working 99% of the time to 75% of the time the palpatations and skiped beats and fluttering are driveing me nuts i can hardly stand it any more ..when my pace maker was working 99% of the time i felt none of these things that are taking away any quality of life i had before they made the adjustment..now im called a troublemaker and non compliant you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died last year of being a dibetic from the age of 13 ...she died at the age of 60 and had all of the effects of a long term diebetic and i fought for her every time she had to go to the hospital now there is no one left to fight for me and i was a union president and fought for1200 people day and night and cant seem to speak up for myself ...my life is a living hell...i have a insynic pace maker /defibralator and congestive heat faliure and when i speak for myself im called a trouble maker you fiht like hell because no one knows there body better han you do Fred (frdmwon@...) Scrapnfriend@... wrote: Hi , We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it. Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love, M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org Messenger Show us what our next emoticon should look like. Join the fun. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Thanks FredFred Luther <frdmwon@...> wrote: dear jandc yes i have but it would involve moving to cleveland because they would make it really tough for me afterward..and everyone i thing anyhing of is where i live now and its lonely enough now ...might have to consider it down the road though FredJandc <jandc@...> wrote: Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting. Re: Update Dear I wish i had your guts and drive..my dr's seem to care more about how long my battery is going to last rather than the quality of my life they reduced my ace maker from working 99% of the time to 75% of the time the palpatations and skiped beats and fluttering are driveing me nuts i can hardly stand it any more ..when my pace maker was working 99% of the time i felt none of these things that are taking away any quality of life i had before they made the adjustment..now im called a troublemaker and non compliant you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died last year of being a dibetic from the age of 13 ...she died at the age of 60 and had all of the effects of a long term diebetic and i fought for her every time she had to go to the hospital now there is no one left to fight for me and i was a union president and fought for1200 people day and night and cant seem to speak up for myself ...my life is a living hell...i have a insynic pace maker /defibralator and congestive heat faliure and when i speak for myself im called a trouble maker you fiht like hell because no one knows there body better han you do Fred (frdmwon@...) Scrapnfriend@... wrote: Hi , We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it. Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love, M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Messenger Show us what our next emoticon should look like. Join the fun. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 I'm with you, Guin. I like hearing the stories about families and lives apart from the ICD. It personalizes the posts so it is no longer just a name on an email but a real person with a real family, a real life, ups and downs, struggles and triumphs. An example is Turk, who is now so busy that he doesn't get to post as often as before. And Bobby--with his surgeries, trips to the casino, move to Mississippi. I just find everyone so interesting. On Apr 6, 2005, at 9:09 AM, Guin Van Dyke wrote: > >  > I have been left wondering if I offended anyone with my post of my > family... I got no response... I hope that was not the case, I only > intended to share a little of myself and some positive thoughts. >  > I would like to know more about all you and your lives outside of > cardiology. I have gotten to know a bit of - we have been on > here for years, and I enjoy hearing about Sharon's family, Turks' and > 's etc. I also enjoy hearing about Fred's life and wish I could > do more to help him get through his tough times. >  > My thoughts to you all, guin > ~guin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 I'm with you, Guin. I like hearing the stories about families and lives apart from the ICD. It personalizes the posts so it is no longer just a name on an email but a real person with a real family, a real life, ups and downs, struggles and triumphs. An example is Turk, who is now so busy that he doesn't get to post as often as before. And Bobby--with his surgeries, trips to the casino, move to Mississippi. I just find everyone so interesting. On Apr 6, 2005, at 9:09 AM, Guin Van Dyke wrote: > >  > I have been left wondering if I offended anyone with my post of my > family... I got no response... I hope that was not the case, I only > intended to share a little of myself and some positive thoughts. >  > I would like to know more about all you and your lives outside of > cardiology. I have gotten to know a bit of - we have been on > here for years, and I enjoy hearing about Sharon's family, Turks' and > 's etc. I also enjoy hearing about Fred's life and wish I could > do more to help him get through his tough times. >  > My thoughts to you all, guin > ~guin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 So sorry May you have the strength to be where need R Re: Update I'm so sorry for your loss and will say a prayer for you and your family. Love, C On Apr 6, 2005 12:52 PM, faytk@... <faytk@...> wrote: > > I believe that I shared with all of you that my Grandpa and my step dad > were > in the hospital. My step dad is doing better and will be released soon we > hope. > > I received a call late last night that my Grandpa passed away. This is my > last living grandparent. I lost all of them within the last 3 years. I am > glad > for him that he is no longer in pain. His pain was so tremendous these > last > couple of weeks. But, it hurts to lose anyone. > > I just wanted to let you know. > > Thanks friends, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 I am very sorry for all the needless suffering that many members of our group have to endure when doctors fail to understand their pain and discomfort. I will remember you in my prayers. Jack --- Original Message ----- From: Fred Luther Sent: Wednesday, April 06, 2005 7:23 PM Subject: Re: Update dear jandc yes i have but it would involve moving to cleveland because they would make it really tough for me afterward..and everyone i thing anyhing of is where i live now and its lonely enough now ...might have to consider it down the road though FredJandc <jandc@...> wrote: Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting. Re: Update Dear I wish i had your guts and drive..my dr's seem to care more about how long my battery is going to last rather than the quality of my life they reduced my ace maker from working 99% of the time to 75% of the time the palpatations and skiped beats and fluttering are driveing me nuts i can hardly stand it any more ..when my pace maker was working 99% of the time i felt none of these things that are taking away any quality of life i had before they made the adjustment..now im called a troublemaker and non compliant you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died last year of being a dibetic from the age of 13 ...she died at the age of 60 and had all of the effects of a long term diebetic and i fought for her every time she had to go to the hospital now there is no one left to fight for me and i was a union president and fought for1200 people day and night and cant seem to speak up for myself ...my life is a living hell...i have a insynic pace maker /defibralator and congestive heat faliure and when i speak for myself im called a trouble maker you fiht like hell because no one knows there body better han you do Fred (frdmwon@...) Scrapnfriend@... wrote: Hi , We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it. Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love, M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 I am very sorry for all the needless suffering that many members of our group have to endure when doctors fail to understand their pain and discomfort. I will remember you in my prayers. Jack --- Original Message ----- From: Fred Luther Sent: Wednesday, April 06, 2005 7:23 PM Subject: Re: Update dear jandc yes i have but it would involve moving to cleveland because they would make it really tough for me afterward..and everyone i thing anyhing of is where i live now and its lonely enough now ...might have to consider it down the road though FredJandc <jandc@...> wrote: Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting. Re: Update Dear I wish i had your guts and drive..my dr's seem to care more about how long my battery is going to last rather than the quality of my life they reduced my ace maker from working 99% of the time to 75% of the time the palpatations and skiped beats and fluttering are driveing me nuts i can hardly stand it any more ..when my pace maker was working 99% of the time i felt none of these things that are taking away any quality of life i had before they made the adjustment..now im called a troublemaker and non compliant you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died last year of being a dibetic from the age of 13 ...she died at the age of 60 and had all of the effects of a long term diebetic and i fought for her every time she had to go to the hospital now there is no one left to fight for me and i was a union president and fought for1200 people day and night and cant seem to speak up for myself ...my life is a living hell...i have a insynic pace maker /defibralator and congestive heat faliure and when i speak for myself im called a trouble maker you fiht like hell because no one knows there body better han you do Fred (frdmwon@...) Scrapnfriend@... wrote: Hi , We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it. Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love, M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 GET ON HERE AND TALK YOUR HEART OUT. YOU WILL NEVER SOUND LIKE A WHINE BUTT OR WAS THE TIT. THAT IS WHAT THIS GROUP IS FOR. ( i AM DOING MY MOM YELLING THING ARE YOU IMPRESSED). Seriously get on here and talk to us. We all have our problems and we all have our pains some of then are icd related and a great deal of them aren't. The only people I ever consider to be whine tits are those that do nothing but complain no matter what advise or comfort is offered and still just keep grinding it to death but refuse to help themselves. I don't see much of that on here any more. I have added you to my prayer list but sometimes I am sure that God looks down and says oh no its her again please close the curtain and turn off the sound. Life is a learning experience and we all experience it differently. My health has been a big blow to my self pride. It has drained me down and it seems like everytime I think I see light of day I get dragged right back down to the bottom. I have days where I think what the hell am I trying to fight for what is there to hold on to. Why me why am I always on the losing side but then some small thing happens sometimes such a small thing that you almost miss it and then from somewhere deep within you remember why you fight to greet each new day. And if that doesn't work for you. Just remember to do it because I said you had to snd I am the oldest. Prayers and hugs and warm fuzzies Sharon in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 GET ON HERE AND TALK YOUR HEART OUT. YOU WILL NEVER SOUND LIKE A WHINE BUTT OR WAS THE TIT. THAT IS WHAT THIS GROUP IS FOR. ( i AM DOING MY MOM YELLING THING ARE YOU IMPRESSED). Seriously get on here and talk to us. We all have our problems and we all have our pains some of then are icd related and a great deal of them aren't. The only people I ever consider to be whine tits are those that do nothing but complain no matter what advise or comfort is offered and still just keep grinding it to death but refuse to help themselves. I don't see much of that on here any more. I have added you to my prayer list but sometimes I am sure that God looks down and says oh no its her again please close the curtain and turn off the sound. Life is a learning experience and we all experience it differently. My health has been a big blow to my self pride. It has drained me down and it seems like everytime I think I see light of day I get dragged right back down to the bottom. I have days where I think what the hell am I trying to fight for what is there to hold on to. Why me why am I always on the losing side but then some small thing happens sometimes such a small thing that you almost miss it and then from somewhere deep within you remember why you fight to greet each new day. And if that doesn't work for you. Just remember to do it because I said you had to snd I am the oldest. Prayers and hugs and warm fuzzies Sharon in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Jack, could you please remember this kid in your prayers too? I really need um. Especially to stay positive.too much since September. I’ve been good at staying positive,no negativity allowed, but something keeps coming and the last few days I’m having hard time. I haven’t posted much about it here because I didn’t want to sound like a whine tit. But since you mentioned prayers………please, toss one or two in there for me. Deb From: Jandc [mailto:jandc@...] Sent: Wednesday, April 06, 2005 8:05 PM Subject: Re: Update I am very sorry for all the needless suffering that many members of our group have to endure when doctors fail to understand their pain and discomfort. I will remember you in my prayers. Jack --- Original Message ----- From: Fred Luther Sent: Wednesday, April 06, 2005 7:23 PM Subject: Re: Update dear jandc yes i have but it would involve moving to cleveland because they would make it really tough for me afterward..and everyone i thing anyhing of is where i live now and its lonely enough now ...might have to consider it down the road though Fred Jandc <jandc@...> wrote: Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting. Re: Update Dear I wish i had your guts and drive..my dr's seem to care more about how long my battery is going to last rather than the quality of my life they reduced my ace maker from working 99% of the time to 75% of the time the palpatations and skiped beats and fluttering are driveing me nuts i can hardly stand it any more ..when my pace maker was working 99% of the time i felt none of these things that are taking away any quality of life i had before they made the adjustment..now im called a troublemaker and non compliant you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died last year of being a dibetic from the age of 13 ...she died at the age of 60 and had all of the effects of a long term diebetic and i fought for her every time she had to go to the hospital now there is no one left to fight for me and i was a union president and fought for1200 people day and night and cant seem to speak up for myself ...my life is a living hell...i have a insynic pace maker /defibralator and congestive heat faliure and when i speak for myself im called a trouble maker you fiht like hell because no one knows there body better han you do Fred (frdmwon@...) Scrapnfriend@... wrote: Hi , We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it. Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately. She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then. Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me. much love, M in CA Please visit the Zapper homepage at http://www.ZapLife.org Messenger Show us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage at http://www.ZapLife.org Please visit the Zapper homepage at http://www.ZapLife.org Messenger Show us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage at http://www.ZapLife.org Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Jack, could you please remember this kid in your prayers too? I really need um. Especially to stay positive.too much since September. I’ve been good at staying positive,no negativity allowed, but something keeps coming and the last few days I’m having hard time. I haven’t posted much about it here because I didn’t want to sound like a whine tit. But since you mentioned prayers………please, toss one or two in there for me. Deb From: Jandc [mailto:jandc@...] Sent: Wednesday, April 06, 2005 8:05 PM Subject: Re: Update I am very sorry for all the needless suffering that many members of our group have to endure when doctors fail to understand their pain and discomfort. I will remember you in my prayers. Jack --- Original Message ----- From: Fred Luther Sent: Wednesday, April 06, 2005 7:23 PM Subject: Re: Update dear jandc yes i have but it would involve moving to cleveland because they would make it really tough for me afterward..and everyone i thing anyhing of is where i live now and its lonely enough now ...might have to consider it down the road though Fred Jandc <jandc@...> wrote: Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting. Re: Update Dear I wish i had your guts and drive..my dr's seem to care more about how long my battery is going to last rather than the quality of my life they reduced my ace maker from working 99% of the time to 75% of the time the palpatations and skiped beats and fluttering are driveing me nuts i can hardly stand it any more ..when my pace maker was working 99% of the time i felt none of these things that are taking away any quality of life i had before they made the adjustment..now im called a troublemaker and non compliant you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died last year of being a dibetic from the age of 13 ...she died at the age of 60 and had all of the effects of a long term diebetic and i fought for her every time she had to go to the hospital now there is no one left to fight for me and i was a union president and fought for1200 people day and night and cant seem to speak up for myself ...my life is a living hell...i have a insynic pace maker /defibralator and congestive heat faliure and when i speak for myself im called a trouble maker you fiht like hell because no one knows there body better han you do Fred (frdmwon@...) Scrapnfriend@... wrote: Hi , We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it. Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately. She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then. Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me. much love, M in CA Please visit the Zapper homepage at http://www.ZapLife.org Messenger Show us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage at http://www.ZapLife.org Please visit the Zapper homepage at http://www.ZapLife.org Messenger Show us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage at http://www.ZapLife.org Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Bridget sent me the link to look it up. More people care about you than you know hon! Deb From: IIPistacio@... [mailto:IIPistacio@...] Sent: Wednesday, April 06, 2005 10:19 AM Subject: Re: Re: Update Deb, How nice of you to look it up. So far I am now dealing with what is to be the very best doctor at University Hospital in Cleveland. I have underwent the battery of test and 4 weeks ago under went another endo with injection of botox to see if it could buy me some time and some relief. Has not helped. They have called in the world renowned Dr. Olander and he order test of tube down nose into stomach and a barium study which I have had so many times I think my butt is solid impacted. We are now awaiting decision as to exactly what they are going to do surgical and Olander is deciding how to get my strong enough to with stand surgery. Blood pressure is to low and counts are al messed up. I am now on liquid protein which I take very 2 hours, no solid foods what so ever. Tell you what I don't even miss food at all. I have had so much in the past few years with my health that I am very angry and very afraid. This surgery scares the hell out of me. They are also trying to figure out how to proceed as ICD will have to be shut down. I know that I sound like a big baby but I am not sure that I will mentally get through this. I am terrified Sharon Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 this touched me you are so right about everything you said Yep the internet is great! Hiranuma <mhiranuma@...> wrote: Hang in there, Fred. You know something? That old addage "the squeaky wheel gets the grease" still applies. Bug them until they respond favorably. My son has cerebral palsy from a bout of viral encephalitis when he was an infant. He is now 26. We had to fight for him every step of the way. A team of Kaiser specialists even went so far as to tell us that they have to direct their "limited resources" to patients with a better chance of recovery. A friend has a daughter with a rare blood disease called alpha thalassemia. They were told she would die before the age of five. She is now 16. Her family has had to fight with the healthcare "professionals" the whole time to get proper care. She still receives transfusions twice a month and chelations at home (her body does not get rid of excess iron) and it is because of her mom's constant whining and complaining that Nikki is still alive today--and doing well in high school. When the docs see her mom coming they hide. She is demanding, strong-willed, always insistent. She will cry at home in the closet but when she's facing the docs, she is the fierce mama lion. It's a sad state to have to be like that to get proper services but we do what we need to do. Our survival is at stake. We don't just want life, we want to have a quality of life, too; we want to launch that boat or visit those casinos or just sit in the sun and read a good book without feeling like our hearts are struggling to keep up. We want to watch our sons and daughters get married and have children. We want to spoil the grandkids, eat ice cream, and take long walks when the snow thaws and new buds sprout. We want to turn our faces to the sun and say it's good to be alive. We're all together on this journey and we hold each other's electronic hands for support. Ain't the internet great? M Re: Update Dear I wish i had your guts and drive..my dr's seem to care more about how long my battery is going to last rather than the quality of my life they reduced my ace maker from working 99% of the time to 75% of the time the palpatations and skiped beats and fluttering are driveing me nuts i can hardly stand it any more ..when my pace maker was working 99% of the time i felt none of these things that are taking away any quality of life i had before they made the adjustment..now im called a troublemaker and non compliant you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died last year of being a dibetic from the age of 13 ...she died at the age of 60 and had all of the effects of a long term diebetic and i fought for her every time she had to go to the hospital now there is no one left to fight for me and i was a union president and fought for1200 people day and night and cant seem to speak up for myself ...my life is a living hell...i have a insynic pace maker /defibralator and congestive heat faliure and when i speak for myself im called a trouble maker you fiht like hell because no one knows there body better han you do Fred (frdmwon@...) Scrapnfriend@... wrote: Hi , We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it. Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love, M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org Find local movie times and trailers on Movies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2005 Report Share Posted May 11, 2005 In a message dated 5/11/2005 10:55:24 A.M. Eastern Standard Time, lisa@... writes: " Experience is something you don't get until just after you need it " Boy is that the truth Leis!!! Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2005 Report Share Posted May 11, 2005 In a message dated 5/11/2005 10:55:24 A.M. Eastern Standard Time, lisa@... writes: " Experience is something you don't get until just after you need it " Boy is that the truth Leis!!! Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 If I might? Have you checked into somnoplasty for your son? OSA can be treated remarkably wuickly using somnoplasty. BiPAP is very ineffective, because it is rarely used properly or as often as directed. I would urge you to look into somnoplasty somnoplasty.com and try that. Good luck. Update Well, we have been fighting with Nick's sleep issues for five years now and I'm hoping we can get them under control this year before we all go bonkers. (I feel like a sleep deprived zombie half the time, the first 4 years I put it off to having the two little ones and being pregnant.) We took Nick to the sleep clinic, the doc in charge is a lung specialist and is more experienced with the adult population versus the pediatric population feels that Nick has OSA and may need a CPAP. He was going to talk to Nick's pediatrician about locating a sleep lab that is familiar with the pediatric population. Nick's pediatrician also referred us to a pediatric neurologist. She suggested trying Nick's clonidine dose all at night (instead of .05/am and ..1/pm). If that doesn't work try increasing the Adderax (sp?) dosage (antihistamine) since it is helping his congestion (not sure if it's helping the sleep issue) to see if that helps. We are continuing his Melatonin since it does seem to help some ... just doesn't keep him out all night. We usually get 2-4 hours straight sleep out of Nick then it's a crap shoot as to how much he gets after the first wake-up episode. The pediatric neurologist doesn't want to mess with his Stratterra until we get the sleep issues figured out. She feels that since the Adderall Xr had the desired effect of calming, helping with the focus and impulsivity that it might have been the right type of medication even if it wasn't the right one -- Nick was extremely irritable and whiny on it unless it was a real low dose and then we saw an increase in the inattentiveness and impulsivity. With the Stratterra we still have the impulsivity issues (but there is some difference as compared with giving him nothing). The neurologist also asked us about growth hormone treatment for Nick. Has anyone gone this route for their child? If so, what have you found with using it? What are the pros and cons? She did mention that based on Nick's age and current height she calculates his adult height as 5'-3 " (my height but definitely a lot shorter than my DH and mostly what his brothers will be). (His bio dad is about 5'-6 " or 5'-7 " . My maternal grandfather was 6'-3 " , my dad is 5'-6 " or 5'-7 " and my DH (the younger boys' bio dad) is 6'-3 " . ) I was so hoping Nick would make 5'-5 " or 5'-6 " not 5'-3 " . DH suggested I look into the pros and cons -- so I thought I'd check with you guys first. (Oh, Nick turns 12 on August 7th.) No matter what we decide, the impression I got from the neurologist is we won't be changing, adding or adjusting any medications until we get the sleep issues straightened out, just in case some of the issues disappear or less once he gets sufficient sleep. Nick will be in 5th grade at his home school come fall. We (DH & I) basically told the special ed liaison that we didn't feel it was necessary to move him to a different school simply because that is where they typically school the moderate to severely mentally impaired students. We had several concerns about the potential move, including the behaviors of several of the students (we know them), the fact that the teacher didn't seem to eager that we visit her classroom (in fact, told us she had to have written permission from the parents of every child in her class) and lastly, due to comments from the OT who has had opportunities to view the classroom in question. I think what helped is the special ed liaison knew she didn't totally have our support, the principal's support or the staff's support in the proposed move. The year before the principal (who was getting ready to retire) was all for it. This summer we enrolled Nick into private speech which I think may be helping (he goes 3x a week). The biggest problem we have with Nick is his attitude -- if he decides he doesn't want to do something (or thinks he can't or it might require work) he just plain refuses to do it. (Hands folded across chest, lower lip out, head down and the whiny " I can't " .) Another problem we have been coming into is Nick's obsession with checking out web pages whenever he sees " www " and wanting to call the 1-800 # the Pirates have. I think he thinks he will get to talk to a Pirate if he calls it. He keeps saying he wants to go to a Pirate game with DH. DH doesn't think he can handle a game -- not sure if it's Nick can't handle the game or DH can't handle Nick at a game. Well, this is long so I'll sign off now. Cari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 If I might? Have you checked into somnoplasty for your son? OSA can be treated remarkably wuickly using somnoplasty. BiPAP is very ineffective, because it is rarely used properly or as often as directed. I would urge you to look into somnoplasty somnoplasty.com and try that. Good luck. Update Well, we have been fighting with Nick's sleep issues for five years now and I'm hoping we can get them under control this year before we all go bonkers. (I feel like a sleep deprived zombie half the time, the first 4 years I put it off to having the two little ones and being pregnant.) We took Nick to the sleep clinic, the doc in charge is a lung specialist and is more experienced with the adult population versus the pediatric population feels that Nick has OSA and may need a CPAP. He was going to talk to Nick's pediatrician about locating a sleep lab that is familiar with the pediatric population. Nick's pediatrician also referred us to a pediatric neurologist. She suggested trying Nick's clonidine dose all at night (instead of .05/am and ..1/pm). If that doesn't work try increasing the Adderax (sp?) dosage (antihistamine) since it is helping his congestion (not sure if it's helping the sleep issue) to see if that helps. We are continuing his Melatonin since it does seem to help some ... just doesn't keep him out all night. We usually get 2-4 hours straight sleep out of Nick then it's a crap shoot as to how much he gets after the first wake-up episode. The pediatric neurologist doesn't want to mess with his Stratterra until we get the sleep issues figured out. She feels that since the Adderall Xr had the desired effect of calming, helping with the focus and impulsivity that it might have been the right type of medication even if it wasn't the right one -- Nick was extremely irritable and whiny on it unless it was a real low dose and then we saw an increase in the inattentiveness and impulsivity. With the Stratterra we still have the impulsivity issues (but there is some difference as compared with giving him nothing). The neurologist also asked us about growth hormone treatment for Nick. Has anyone gone this route for their child? If so, what have you found with using it? What are the pros and cons? She did mention that based on Nick's age and current height she calculates his adult height as 5'-3 " (my height but definitely a lot shorter than my DH and mostly what his brothers will be). (His bio dad is about 5'-6 " or 5'-7 " . My maternal grandfather was 6'-3 " , my dad is 5'-6 " or 5'-7 " and my DH (the younger boys' bio dad) is 6'-3 " . ) I was so hoping Nick would make 5'-5 " or 5'-6 " not 5'-3 " . DH suggested I look into the pros and cons -- so I thought I'd check with you guys first. (Oh, Nick turns 12 on August 7th.) No matter what we decide, the impression I got from the neurologist is we won't be changing, adding or adjusting any medications until we get the sleep issues straightened out, just in case some of the issues disappear or less once he gets sufficient sleep. Nick will be in 5th grade at his home school come fall. We (DH & I) basically told the special ed liaison that we didn't feel it was necessary to move him to a different school simply because that is where they typically school the moderate to severely mentally impaired students. We had several concerns about the potential move, including the behaviors of several of the students (we know them), the fact that the teacher didn't seem to eager that we visit her classroom (in fact, told us she had to have written permission from the parents of every child in her class) and lastly, due to comments from the OT who has had opportunities to view the classroom in question. I think what helped is the special ed liaison knew she didn't totally have our support, the principal's support or the staff's support in the proposed move. The year before the principal (who was getting ready to retire) was all for it. This summer we enrolled Nick into private speech which I think may be helping (he goes 3x a week). The biggest problem we have with Nick is his attitude -- if he decides he doesn't want to do something (or thinks he can't or it might require work) he just plain refuses to do it. (Hands folded across chest, lower lip out, head down and the whiny " I can't " .) Another problem we have been coming into is Nick's obsession with checking out web pages whenever he sees " www " and wanting to call the 1-800 # the Pirates have. I think he thinks he will get to talk to a Pirate if he calls it. He keeps saying he wants to go to a Pirate game with DH. DH doesn't think he can handle a game -- not sure if it's Nick can't handle the game or DH can't handle Nick at a game. Well, this is long so I'll sign off now. Cari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 Go for it -- loves going to the Orioles game with his daddy (they were just there) - I don't think he cares about the game, but the music and the bird Another problem we have been coming into is Nick's obsession with > checking > out web pages whenever he sees " www " and wanting to call the 1-800 # the > > Pirates have. I think he thinks he will get to talk to a Pirate if he > calls it. > He keeps saying he wants to go to a Pirate game with DH. DH doesn't > think he > can handle a game -- not sure if it's Nick can't handle the game or DH > can't > handle Nick at a game. > > Well, this is long so I'll sign off now. > > Cari > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 Go for it -- loves going to the Orioles game with his daddy (they were just there) - I don't think he cares about the game, but the music and the bird Another problem we have been coming into is Nick's obsession with > checking > out web pages whenever he sees " www " and wanting to call the 1-800 # the > > Pirates have. I think he thinks he will get to talk to a Pirate if he > calls it. > He keeps saying he wants to go to a Pirate game with DH. DH doesn't > think he > can handle a game -- not sure if it's Nick can't handle the game or DH > can't > handle Nick at a game. > > Well, this is long so I'll sign off now. > > Cari > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 I agree- take him to the game they dont even have to stay for the whole thing. Dont you have the farm team in PA? we have the brooklyn cyclones here and they play pittsburg something all the time. We love cyclone games- they are such fun- lots of music, a smaller stadium and lots of activities for the kids. I would much rather go there then to see the Mets at Shea (went once- it was hot, expensive, etc...) and wouldnt even attempt Yankee Stadium (although has become a huge Yankee fan, while her brother and I remain true to the mets). Baseball is great entertainment for our kids- if you dont think that DH can handle him alone, then why dont the 3 of you go if possible? ~ Mom to 14 DS and Diabetes Type 1 and 11 NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 I agree- take him to the game they dont even have to stay for the whole thing. Dont you have the farm team in PA? we have the brooklyn cyclones here and they play pittsburg something all the time. We love cyclone games- they are such fun- lots of music, a smaller stadium and lots of activities for the kids. I would much rather go there then to see the Mets at Shea (went once- it was hot, expensive, etc...) and wouldnt even attempt Yankee Stadium (although has become a huge Yankee fan, while her brother and I remain true to the mets). Baseball is great entertainment for our kids- if you dont think that DH can handle him alone, then why dont the 3 of you go if possible? ~ Mom to 14 DS and Diabetes Type 1 and 11 NYC Quote Link to comment Share on other sites More sharing options...
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