Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Woody, You have had the military exposure and if that is backed up by some remote working then I suspect you will be a Pile 1 or Pile 2 on the vote category. It's a case of submitting your portfolio as part of the application and then working from there. If you have sufficient remote work, then you would be in Pile 1 straight away. Any further questions, please fire away. Cheers, Ross > RE: Update > > > Hi, just read your email on who will > get the cahnce to gai this qualification. > what about uk state registered paramedics. > im one who is ex forces and city and > guilds in medical admin. im phtls, > atls, patls and have minor and major > emergency quals. where would i stand if > i wanted to enrol > woody > > Ross Boardman > <ross.boardman@...> wrote: > Hi Gordon, > > There would be three piles on the table: > > 1 Those with qualifications and experience in > remote medicine > This would cover most of the guys on this list. > > 2 Those with higher qualifications but > no present > experience in remote medicine > More than likely to be doctors who are looking > into remote medicine as a future component of > their careers > > 3 Those with neither qualification nor > experience > We can name a few of these > > All of pile 1 would be welcomed aboard. Each > candidate in pile 2 will be considered on their > own merits and may get panel voted or > interviewed. > The panel will be 3 or 5 people and a majority > vote will put the prospect into pile 1. > Pile 3 is > more than likely to be rejected. > > Hope that clears it up. > > Cheers, > > Ross > > > > > Ross even though this is post grad. I > > take it you do not have to be a > > graduate to apply? > > > > > > > > Member Information: > > List owner: Ian Sharpe Owner@... > Editor: Ross Boardman > Editor@... > > ALL list admin messages (subscriptions > & unsubscriptions) should be sent to > the list owner. > > Post message: egroups > > Please visit our website http://www.remotemedics.co.uk Regards The Remote Medics Team Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 I stand corrected Ged, still think its a good idea, and much needed ======================================== Message date : Jun 29 2004, 04:14 PM From : " Ged " To : Copy to : Subject : Re: Update Hi Jim, Surely there is some confusion in your last post? If by your reference to the 'NMC' you mean Nursing and Midwifery Council then this is the governing body that lays down the professional guidelines for Nurses. It is the Royal College of Nursing (RCN) or UNISON who would provide benefits, or professional/legal representation and not the NMC. It is the NMC that keeps the register of nurses and midwives, and can decide whether an individual is struck off. RCN or UNISON would be the professional organisation defending a member under such circumstances. Regards, Ged H. > Hi Guys > 1: I would like to see the BSS course run in Glasgow, > 2.Excellent news about the course, will look forward to it with anticipation, will certainly keep it as an otion. > 3. I feel that a professional body would be a good idea, as a member of the NMC, I get all the benefits from this organisation e.g representation, legal aid, but most importantly a code of conduct to work within. As a profession, and thats what we are, a profession allied to medicine remote medics need this form of organisation. As a nurse, if the worst happened, and my practice is safe and within guidelines and protocols laid down by the NMC, then I can stand up in court and say so, with the backing of the NMC. Remote medics can only utilise whatever individual professional body we are members of, or rely on medical indemnity policies. The above do not, and would not carry the same clout as a professional body with clear protocols and guidelines, with all the members intrests at heart. I also think the t-shirt would look cool on holiday. > > Jim Storrar > > ===== > Message date : Jun 29 2004, 12:04 AM > From : " Ross Boardman " > To : " Remote Medics " > Copy to : > Subject : Update > Folks, > > A lot of things tend to drop together at the same > time and often after much silence. This update is > to try and gauge some feelings and opinions from > you, the members. > > 1 Basic surgical skills course. > We are going to run these once each year, the next > being at Keele Hall 6-8 Sept 2004. You get a > manual, basic surgical instrument kit and three > days of excellent, immersive and in depth tuition > with a certificate of attendance and CPD from > RCS(Ed). Our new training advisor, Mr > MD DMI FRCS(Gen.Surg) is the course author and > senior instructor. The course is very intensive > and past students will tell you that we expect > high standards from all students attending. > > 2 DipROM. > The Diploma of Remote and Offshore Medicine is > still under development and we are looking at a > launch date of July 2005 to coincide with the > 500th Anniversary of RCS(Ed). This has been a very > long term project for us and we are looking > forward to seeing our first batch of graduates > come through in the next couple of years. > > 3 Professional recognition > We have the opportunity to explore a value for > money membership body for remote medics, first in > the UK and then once we have learnt the lessons > and firmed up our network, then globally. > Basically, we aim to able to provide basic > certification of a persons qualification, > experience and identity, representation and > credibility for a diverse and geographically > spread bunch of medics. We don't want to offer > discounts, insurance, cheap curtains or any other > filler, but to give a good professional service > via an already established body. > > 4 Other items > Please let us know how you feel on these items as > this forum is for you and without your voices, it > doesn't really matter what we promote, publish or > push. > > Cheers, > > Ross > > Basic Surgical Skills for Remote Medics > Keele Hall, UK > http://www.remotemedics.co.uk/bss.htm > ross.boardman@r... > > > > > Member Information: > > List owner: Ian Sharpe Owner@R... > Editor: Ross Boardman Editor@R... > > ALL list admin messages (subscriptions & unsubscriptions) should be sent to the list owner. > > Post message: egroups > > Please visit our website http://www.remotemedics.co.uk > > Regards > > The Remote Medics Team > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Ross I dont know if you got my earlier question about how to best go about setting myself up for a career as a remote medic. I'm currently an EMT in London and could really do with some pointers about how to make myself more employable as a remote medic. Can I do it as state registered Paramedic (when qualified), and what additional quals would be preferable. Should I wait and study for the new ECP qual? I realise that I am a few years off yet, but I just want to make sure that I am going down the right line. Many Thanks Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 Bonnie, How wonderful to read the good things that seem to be beginning to happen for you and your family!!! I do know what a long haul it is when we're going thru such things. Here's to 2005 bringing new beginnings and success for all of us and ours... Love ya, Kiki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Wow , I admire your dedication to the natural way to treat the sick ones. I wish I could be that way.I used to be totally allopathic until I was damaged by 2 vaccinations. I have 4 kids 3 were totally vaccinated until I was damaged,then my 4th has not had any shots but the ones at 2 months. I wish I knew before those shots.I have had a lot of problems with my little one though. she has been chronically sick with bronchitis,ear infections,asthma,etc. I was given those 2 shots and 2 months later became pregnant. My body is messed up and I think that her body is also messed up from the shots that I got. they damaged me and when she was conceived my body was at its weakest point. I have been struggling between the allopathic way and the natural way since she was born. it has been really hard on me being disabled and trying to care for her being sick all the time. I nursed her for 2 years and still she was so sick. those shots are horrible. If anyone wants to hear more please write, I could go on and on! I have found a happy medium between both ways and am STILL trying to go natural and undo the brainwashing I got over the years. love Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2005 Report Share Posted March 12, 2005 <<<<<she has been chronically sick with bronchitis,ear infections,asthma,etc.>>>>>>> Janet, birth trauma can cause some of this too. If you haven't already, get her adjusted (if needed) by a chiropractor that knows how to adjust infants/toddlers. http://home.capecod.net/~drcrandall/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Dear , Sorry haven't replied before but have been fighting my own war just different area of the body right now. You go girl. My new years resolution was what ever it takes to be heard and have someone listen and understand. I am so very much older than you and I don't know if that it is it or what. I am so tired of not being heard not just the words that you speak the all of it. It just seems that we all have got into the habit of cocking our head to one side as if we are listening and our minds tend to be 50 thousand miles away. I don't know if it is just me but I seem to have a huge problem with this especially with me and since most of my doctors are men the wheel just keeps going motion. I know that at times I whine and go on forever about silly things, but then sometimes when it comes to my body I just tend to take what ever they say and say oh well, just my luck. Maybe it was something Sue wrote but I vow never again. I am trying to learn to put the small stuff aside but the big things (my health being the biggest I am not going to take no for an answer, No one knows your body as well as you do and you know what you can deal with and what you can't. You know when something is driving you crazy and someone needs to listen and pay close attention. Everything with my icd is ok at the moment beside the constant pain and the moving around all the time. Mine is my Acclayshia, this has been going on for 5 years of better the last 2 have been unbearable. Several doctors later and now another new hospital and still no relief. They say how often are you throwing up after you eat and I say every meal and they say no really how often are you throwing up. Wow really so do you throw up after you eat each meal. I decide the other day to invite my new specialist to breakfast, lunch and dinner and then ask him how often I throw up. See you are not the only one, don't stop asking questions and wanting answers make them listen. Enough is enough. Love, Sharon in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Sharon, How do you keep going? Seems like if it's not one thing it's another. Well hang in there girl and know that we all care and worry about you. Hugz, Everything with my icd is ok at the moment beside the constant pain and the moving around all the time. Mine is my Acclayshia, this has been going on for 5 years of better the last 2 have been unbearable. Several doctors later and now another new hospital and still no relief. They say how often are you throwing up after you eat and I say every meal and they say no really how often are you throwing up. Wow really so do you throw up after you eat each meal. I decide the other day to invite my new specialist to breakfast, lunch and dinner and then ask him how often I throw up. See you are not the only one, don't stop asking questions and wanting answers make them listen. Enough is enough. Love, Sharon in Ohio M in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Dear Dear , You monopolized the board? Not hardly hon, its nice to see it be somewhat active for a change. We all need encouragement and suggestions from time to time, its just your turn. You know we are wishing you luck and just remember to remain the squeaky wheel no matter how much greasing ya get(wink) Huggz girl, Debbie From: simplyshawn@... [mailto:simplyshawn@...] Sent: Tuesday, April 05, 2005 10:42 AM Subject: Update 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, " Have a heart that never hardens, a temper that never tires, and a touch that never hurts. " -- Dickens 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 5, 2005 Report Share Posted April 5, 2005 ; I am soooo glad you had a good cry at the Drs office and you were HEARD! Good job. Now hopefully they will all follow through quickly.... ~guin P.S. Keep us posted - it gives us something to read! You are always an inspiration to s all - now we can try and help you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 Sharon, if you are throwing up after every meal wouldn’t that basicly be as dangerous as bolemia? And wouldn’t you be losing nutrients that your body and heart need to function properly? That sounds really scarey to me!! I admit tho that I don’t have a clue what Acclayshia is. Maybe you could clue me in. Huggs Deb From: IIPistacio@... [mailto:IIPistacio@...] Sent: Tuesday, April 05, 2005 11:50 AM Subject: Re: Update Dear , Sorry haven't replied before but have been fighting my own war just different area of the body right now. You go girl. My new years resolution was what ever it takes to be heard and have someone listen and understand. I am so very much older than you and I don't know if that it is it or what. I am so tired of not being heard not just the words that you speak the all of it. It just seems that we all have got into the habit of cocking our head to one side as if we are listening and our minds tend to be 50 thousand miles away. I don't know if it is just me but I seem to have a huge problem with this especially with me and since most of my doctors are men the wheel just keeps going motion. I know that at times I whine and go on forever about silly things, but then sometimes when it comes to my body I just tend to take what ever they say and say oh well, just my luck. Maybe it was something Sue wrote but I vow never again. I am trying to learn to put the small stuff aside but the big things (my health being the biggest I am not going to take no for an answer, No one knows your body as well as you do and you know what you can deal with and what you can't. You know when something is driving you crazy and someone needs to listen and pay close attention. Everything with my icd is ok at the moment beside the constant pain and the moving around all the time. Mine is my Acclayshia, this has been going on for 5 years of better the last 2 have been unbearable. Several doctors later and now another new hospital and still no relief. They say how often are you throwing up after you eat and I say every meal and they say no really how often are you throwing up. Wow really so do you throw up after you eat each meal. I decide the other day to invite my new specialist to breakfast, lunch and dinner and then ask him how often I throw up. See you are not the only one, don't stop asking questions and wanting answers make them listen. Enough is enough. Love, Sharon in Ohio 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 6, 2005 Report Share Posted April 6, 2005 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 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 6, 2005 Report Share Posted April 6, 2005 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 Bravo! Update 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, "Have a heart that never hardens, a temper that never tires, and a touch that never hurts."-- Dickens Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 Re: Update No one knows your body as well as you do and you know what you can deal with and what you can't. You know when something is driving you crazy and someone needs to listen and pay close attention. You're absolutely right! The docs aren't God lording it over us. They are our partners and our input is crucial to their decisions. If they don't listen, then they are not working with us. I decide the other day to invite my new specialist to breakfast, lunch and dinner and then ask him how often I throw up. This is a great solution. If they don't believe you, then maybe they need to observe for themselves. Love, Sharon in OhioPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 All I can say is WOW!! Powerful message here but so true. I think that’s uplifting for us all. Thank you. Debbie From: Hiranuma [mailto:mhiranuma@...] Sent: Wednesday, April 06, 2005 3:21 AM Subject: Re: Update 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 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 This explains it: http://www.nlm.nih.gov/medlineplus/ency/article/000267.htm Bridget > Sharon, if you are throwing up after every meal wouldn't that basicly be as > dangerous as bolemia? > > And wouldn't you be losing nutrients that your body and heart need to > function properly? That sounds really scarey to me!! > > I admit tho that I don't have a clue what Acclayshia is. Maybe you could > clue me in. > > Huggs > > Deb > > > > _____ > > From: IIPistacio@a... [mailto:IIPistacio@a...] > Sent: Tuesday, April 05, 2005 11:50 AM > > Subject: Re: Update > > > > Dear , > > > > Sorry haven't replied before but have been fighting my own war just > different area of the body right now. You go girl. My new years resolution > was what ever it takes to be heard and have someone listen and understand. > > > > I am so very much older than you and I don't know if that it is it or what. > I am so tired of not being heard not just the words that you speak the all > of it. It just seems that we all have got into the habit of cocking our > head to one side as if we are listening and our minds tend to be 50 thousand > miles away. I don't know if it is just me but I seem to have a huge problem > with this especially with me and since most of my doctors are men the wheel > just keeps going motion. > > > > I know that at times I whine and go on forever about silly things, but then > sometimes when it comes to my body I just tend to take what ever they say > and say oh well, just my luck. Maybe it was something Sue wrote but I vow > never again. I am trying to learn to put the small stuff aside but the big > things (my health being the biggest I am not going to take no for an answer, > > > > No one knows your body as well as you do and you know what you can deal with > and what you can't. You know when something is driving you crazy and > someone needs to listen and pay close attention. > > > > Everything with my icd is ok at the moment beside the constant pain and the > moving around all the time. Mine is my Acclayshia, this has been going on > for 5 years of better the last 2 have been unbearable. Several doctors > later and now another new hospital and still no relief. They say how often > are you throwing up after you eat and I say every meal and they say no > really how often are you throwing up. Wow really so do you throw up after > you eat each meal. I decide the other day to invite my new specialist to > breakfast, lunch and dinner and then ask him how often I throw up. > > > > See you are not the only one, don't stop asking questions and wanting > answers make them listen. Enough is enough. > > > > Love, > > Sharon in Ohio > > > > 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 6, 2005 Report Share Posted April 6, 2005 Sharon, Expectations (prognosis) Return to top Surgical outcomes are good -- dilation alone often results in only temporary improvement in symptoms. Have you had surgery for this, if not do you think it would help???? Sounds like an awful thing to be going thru. Gawd yes you need to not just be the squeaky wheel but you need to raise hell!!!!! Thoughts and prayers are with you Huggz & stuff, Debbie Complications Return to top Tearing (perforation) of the esophagus Regurgitation of acid or food from the stomach into the esophagus (reflux) Aspiration of food contents into the lung that can cause pneumonia From: Bridget [mailto:rumplegroups@...] Sent: Wednesday, April 06, 2005 5:28 AM Subject: Re: Update This explains it: http://www.nlm.nih.gov/medlineplus/ency/article/000267.htm Bridget > Sharon, if you are throwing up after every meal wouldn't that basicly be as > dangerous as bolemia? > > And wouldn't you be losing nutrients that your body and heart need to > function properly? That sounds really scarey to me!! > > I admit tho that I don't have a clue what Acclayshia is. Maybe you could > clue me in. > > Huggs > > Deb > > > > _____ > > From: IIPistacio@a... [mailto:IIPistacio@a...] > Sent: Tuesday, April 05, 2005 11:50 AM > > Subject: Re: Update > > > > Dear , > > > > Sorry haven't replied before but have been fighting my own war just > different area of the body right now. You go girl. My new years resolution > was what ever it takes to be heard and have someone listen and understand. > > > > I am so very much older than you and I don't know if that it is it or what. > I am so tired of not being heard not just the words that you speak the all > of it. It just seems that we all have got into the habit of cocking our > head to one side as if we are listening and our minds tend to be 50 thousand > miles away. I don't know if it is just me but I seem to have a huge problem > with this especially with me and since most of my doctors are men the wheel > just keeps going motion. > > > > I know that at times I whine and go on forever about silly things, but then > sometimes when it comes to my body I just tend to take what ever they say > and say oh well, just my luck. Maybe it was something Sue wrote but I vow > never again. I am trying to learn to put the small stuff aside but the big > things (my health being the biggest I am not going to take no for an answer, > > > > No one knows your body as well as you do and you know what you can deal with > and what you can't. You know when something is driving you crazy and > someone needs to listen and pay close attention. > > > > Everything with my icd is ok at the moment beside the constant pain and the > moving around all the time. Mine is my Acclayshia, this has been going on > for 5 years of better the last 2 have been unbearable. Several doctors > later and now another new hospital and still no relief. They say how often > are you throwing up after you eat and I say every meal and they say no > really how often are you throwing up. Wow really so do you throw up after > you eat each meal. I decide the other day to invite my new specialist to > breakfast, lunch and dinner and then ask him how often I throw up. > > > > See you are not the only one, don't stop asking questions and wanting > answers make them listen. Enough is enough. > > > > Love, > > Sharon in Ohio > > > > 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 6, 2005 Report Share Posted April 6, 2005 Throwing up is very dangerous! They try to have me take a vitamin an etc but they are hard to get down and liquid taste like crap. It was believed that I had a severe case of acid reflex that then worsened into GERD, all treatments for both disorders have failed no meds have worked to control the throwing up. My EP and heart doc think that is the reason ICD is so looses that I am throwing up so hard ti is causing it to work out of position. My throat and tongue are burned to the point they tell me they may never heal. That little thing that hangs down in the aback of my throat is eroded. I have a constant thirst and have to add thick-it to ever thing I try to drink. I am getting some nourishment down. I have lost massive amounts of weight and my skin is so dry that it flakes constantly. I have been to 4 gastro doctors in the area and was refereed to what is supposed to be the best doctor in the united states. He has called in the same doctor that was treating Reeves and then my daughter said but look what happened to . Oh thank you sweet girl. I live with plastic grocery bags as part of my life a never go out to eat. It is a joke in our family and my grand daughter even made me some pretty decorated bags. I am having ever test done known to man and so far the result are how the hell are you living like this we have no idea what to do. They are know talking about some new type of surgery where they will have to go in and replace something totally. It seems that nothing from my swallowing to my stomach works properly or in order so they regular things like dilation and ballooning and botoix injections are not helping at this time. Check out Mayo clinic on Acclayshia. So far a I am a medical wonder and I can't tell you how enthralled I am Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 Thank you sooo much for that . It was very inspirational. 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 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 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 -- when my father passed away, I knew that it was right for him, he was at the end of his life and was in tremendous pain -- but it still hurts and you miss them.... Focus on remembering all the good times. I " talk " to Dad frequently -- and I sometimes swear that he answers me! I've always felt that he's " still around " us -- love never dies. Bonnie 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 . I hope the pain will ease with time, as you remember the good times and know he's at peace and out of pain now... Kiki Quote Link to comment Share on other sites More sharing options...
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