[QUAD-L] 21st anniversary!
Today, May 17th, makes 21 years since I became a ventilator dependent quadriplegic due to acute transverse myelitis. I was 21 when it happened so it has now been half my life. I woke up that morning with a sore shoulder. Thinking I just slept in a wrong position I went to work. After about 30 minutes the pain in my shoulder increased and I started feeling dizzy. I tried to stand up but could not. Someone helped me lay down. In a short amount of time I remember a paramedic asking me my age, I tried to answer but could not talk. I found out I had stopped breathing. The next memory I have is waking up in the hospital unable to move or speak. Transverse Myelitis is an inflammatory attack in the spinal cord. It is an auto immune disorder where a persons own immune system mistakenly attacks and destroys myelin, the insulating material that surrounds nerves. There is no known cause or cure. It can happen to anyone at any age. In 2008, the Transverse Myelitis Association has established the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders. The purpose of the Fellowship is to encourage the development of medical specializations in TM, ADEM and NMO through a year of study under a leading TM, ADEM or NMO specialist. If you think this is a worthy cause and would like to make a tax deductible donation to support it, you can do so using this link http://www.myelitis.org/fellowship-donation Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [QUAD-L] 21st anniversary!
Congrats Jim, In the last 21 years you have made more world connections then most with your expertise and experiences in survival. You have done so well. And may you continue to lead and inform others. Best Wishes In a message dated 5/17/2010 4:16:08 P.M. Central Daylight Time, jlu...@eskimo.com writes: Today, May 17th, makes 21 years since I became a ventilator dependent quadriplegic due to acute transverse myelitis. I was 21 when it happened so it has now been half my life. I woke up that morning with a sore shoulder. Thinking I just slept in a wrong position I went to work. After about 30 minutes the pain in my shoulder increased and I started feeling dizzy. I tried to stand up but could not. Someone helped me lay down. In a short amount of time I remember a paramedic asking me my age, I tried to answer but could not talk. I found out I had stopped breathing. The next memory I have is waking up in the hospital unable to move or speak. Transverse Myelitis is an inflammatory attack in the spinal cord. It is an auto immune disorder where a persons own immune system mistakenly attacks and destroys myelin, the insulating material that surrounds nerves. There is no known cause or cure. It can happen to anyone at any age. In 2008, the Transverse Myelitis Association has established the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders. The purpose of the Fellowship is to encourage the development of medical specializations in TM, ADEM and NMO through a year of study under a leading TM, ADEM or NMO specialist. If you think this is a worthy cause and would like to make a tax deductible donation to support it, you can do so using this link _http://www.myelitis.org/fellowship-donation_ (http://www.myelitis.org/fellowship-donation) Jim Lubin jlu...@eskimo.com _http://makoa.org/jim_ (http://makoa.org/jim) disAbility Resources: _http://www.makoa.org _ (http://www.makoa.org/)
RE: [QUAD-L] 21st anniversary!
Well stated, W. Congratulations, Jim! From: wheelch...@aol.com [mailto:wheelch...@aol.com] Sent: Monday, May 17, 2010 5:25 PM To: jlu...@eskimo.com; quad-list@eskimo.com; tmic-l...@eskimo.com; vent-us...@eskimo.com Subject: Re: [QUAD-L] 21st anniversary! Congrats Jim, In the last 21 years you have made more world connections then most with your expertise and experiences in survival. You have done so well. And may you continue to lead and inform others. Best Wishes In a message dated 5/17/2010 4:16:08 P.M. Central Daylight Time, jlu...@eskimo.com writes: Today, May 17th, makes 21 years since I became a ventilator dependent quadriplegic due to acute transverse myelitis. I was 21 when it happened so it has now been half my life. I woke up that morning with a sore shoulder. Thinking I just slept in a wrong position I went to work. After about 30 minutes the pain in my shoulder increased and I started feeling dizzy. I tried to stand up but could not. Someone helped me lay down. In a short amount of time I remember a paramedic asking me my age, I tried to answer but could not talk. I found out I had stopped breathing. The next memory I have is waking up in the hospital unable to move or speak. Transverse Myelitis is an inflammatory attack in the spinal cord. It is an auto immune disorder where a persons own immune system mistakenly attacks and destroys myelin, the insulating material that surrounds nerves. There is no known cause or cure. It can happen to anyone at any age. In 2008, the Transverse Myelitis Association has established the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders. The purpose of the Fellowship is to encourage the development of medical specializations in TM, ADEM and NMO through a year of study under a leading TM, ADEM or NMO specialist. If you think this is a worthy cause and would like to make a tax deductible donation to support it, you can do so using this link http://www.myelitis.org/fellowship-donation Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org http://www.makoa.org/
Re: [QUAD-L] 21st anniversary!
Hip, Hip Hooray. Hip, Hip Hoorah! AttaBoy. Here, Here! Best Wishes In a message dated 5/17/2010 4:40:00 P.M. Central Daylight Time, steve.olda...@comcast.net writes: Well stated, W… Congratulations, Jim! From: wheelch...@aol.com [mailto:wheelch...@aol.com] Sent: Monday, May 17, 2010 5:25 PM To: jlu...@eskimo.com; quad-list@eskimo.com; tmic-l...@eskimo.com; vent-us...@eskimo.com Subject: Re: [QUAD-L] 21st anniversary! Congrats Jim, In the last 21 years you have made more world connections then most with your expertise and experiences in survival. You have done so well. And may you continue to lead and inform others. Best Wishes In a message dated 5/17/2010 4:16:08 P.M. Central Daylight Time, jlu...@eskimo.com writes: Today, May 17th, makes 21 years since I became a ventilator dependent quadriplegic due to acute transverse myelitis. I was 21 when it happened so it has now been half my life. I woke up that morning with a sore shoulder. Thinking I just slept in a wrong position I went to work. After about 30 minutes the pain in my shoulder increased and I started feeling dizzy. I tried to stand up but could not. Someone helped me lay down. In a short amount of time I remember a paramedic asking me my age, I tried to answer but could not talk. I found out I had stopped breathing. The next memory I have is waking up in the hospital unable to move or speak. Transverse Myelitis is an inflammatory attack in the spinal cord. It is an auto immune disorder where a persons own immune system mistakenly attacks and destroys myelin, the insulating material that surrounds nerves. There is no known cause or cure. It can happen to anyone at any age. In 2008, the Transverse Myelitis Association has established the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders. The purpose of the Fellowship is to encourage the development of medical specializations in TM, ADEM and NMO through a year of study under a leading TM, ADEM or NMO specialist. If you think this is a worthy cause and would like to make a tax deductible donation to support it, you can do so using this link _http://www.myelitis.org/fellowship-donation_ (http://www.myelitis.org/fellowship-donation) Jim Lubin jlu...@eskimo.com _http://makoa.org/jim_ (http://makoa.org/jim) disAbility Resources: _http://www.makoa.org _ (http://www.makoa.org/)
Re: [QUAD-L] Health Aides, sicker then their clients........
If you're paying $7200 a year for a husband and wife plus one child, that's not bad. Of course you always have to worry about what happens when you do get really sick. Are they actually going to cover it? It's unbelievable what these companies do to maintain their profit level. Then again, that's what corporations are supposed to do. So what do we expect? I'll never understand these people that yell with froth dripping from their mouth, we don't want no government ran a insurance and keep your hands off my Medicare! Q On Thu, May 6, 2010 at 7:46 PM, John S. alcibiat...@yahoo.com wrote: Why is it that nobody can believe the insurance companies make it a virtual impossibillity for so many people to even get health insurance? Do HIPPA laws even apply to these ne'er do wells of the extortion industry? if insurance companies lie to you, why can't you lie to them? On average, a couple will pay $2200 the first year for a child. This doesn't include mom and dad which cost $5000 or more. then there is the car. about $1000, house insurance, $850. Don't get excited, health insurance won't cover dentists or eye doctors. I guess what the pro-life republican senator said was true, People that can't afford healtth care shouldn't have children john -- *From:* wheelch...@aol.com wheelch...@aol.com *To:* quad...@gmail.com *Cc:* quad-list@eskimo.com *Sent:* Tue, May 4, 2010 3:18:53 PM *Subject:* [QUAD-L] Health Aides, sicker then their clients My point... and hopefully its a good point is, Are you suffering or feel endangered, knowing that a nurse, doctor or home aide might be taking care of you and exposing you to an infection or cold flu? Bladder and UTI or Yeast Infections. These are the very people who are taking care of you as Quads, while being sick themselves. Years ago, I remember one aide who carried a bag with 12 different meds Rx, for themselves and not there clients. Who's taking care of who? Best Wishes In a message dated 5/4/2010 2:04:33 P.M. Central Daylight Time, quad...@gmail.com writes: it behooves most employers to consider subsidizing their employees health care. If an employee is healthy and happy they tend to stay longer and are more productive. In my case, I think it's imperative that I consider my family, who are my primary caregivers, health it has been almost as essential as mine. If there is goes downhill, the mine is bound to follow shortly thereafter if I'm not able to find a suitable replacement. Just my two cents. Quadius. On Sat, May 1, 2010 at 8:57 PM, Eric W Rudd c5sc...@gmail.com wrote: ?? might've missed the point. i pay my PCA figure they can pay 4 their own 'upkeep' Eric W Rudd c5sc...@gmail.com - Original Message - *From:* Quadius quad...@gmail.com *To:* andrea murray emma_wolf2...@yahoo.com *Cc:* QUAD-LIST@eskimo.com *Sent:* Saturday, May 01, 2010 5:03 PM *Subject:* Re: Fw: [QUAD-L] Health Aides, sicker then their clients amen. I'm still trying to get some reasonable insurance for my brother and sister-in-law who take care of me. I need to bite the big one and accept the fact that they need good insurance so they can continue to take care of me. If they can't go to the doctor and things fester it's going to end up biting me in the rear later on. On Sat, May 1, 2010 at 2:09 PM, andrea murray emma_wolf2...@yahoo.comwrote: *Some of the Health care aids do not have health care inc. A lot of them can't afford going to doctor's. You might say they don't have to work for a health company that doesn't give health benefits. But try and find one!!! Thank God there are people out there that will work without benefit's. As a person with a disability I could not live without my aide's. I think of them as Gods Angels.* *WW* --- On *Fri, 4/30/10, wheelch...@aol.com wheelch...@aol.com* wrote: From: wheelch...@aol.com wheelch...@aol.com Subject: [QUAD-L] Health Aides, sicker then their clients To: QUAD-LIST@eskimo.com Date: Friday, April 30, 2010, 3:22 PM Is it me or have I noticed that in far too many cases with healthcareaids and workers that they are often in worse health then the people who they take care of? The also applies to Doctors, Nurses and home aids. By Law, they don't have to disclose any health conditions or if they have or carry any infections while taking care of you. Has anyone else noticed this too? On a side note, organ donors and receivers More then 1/2 of our organ donations come from abroad. No, not women but rather from other countries. Where has your organ come from? Best Wishes
[QUAD-L] My Dilemma
I am a C-4 quad with an indwelling Foley catheter. My urologist says that my urethra is eroding, and suggests I have a procedure called a urostomy. He performed a procedure called Urodynamic, which measures the amount of urine your bladder can hold. Mine is holding less than an ounce of urine. So now he wants to remove my bladder, and make me a new one using part of my small intestine. During this procedure, both ureters are relocated, a new bladder is made, and urine as directed from the body through a stoma in the abdomen, which connects to a bag that adheres to the skin. I am going to the hospital on Tuesday to have an MRI, to make sure that it's safe for me to have this procedure because I also have Crohn's disease and disturbing my small intestine, may cause my Crohn's to flareup (which is a very terrible thing). My dilemma is this: I have to choose between having this very invasive surgery, and all of that may come after it including infection from many sources, including the new bladder, ureter relocation, the stoma, and skin irritation from the adhesive for the bag, and not to mention the Crohn's flareup Or. I can wear incontinent briefs which I don't have anyone to change them, because there's just me and my 80 year old mother, living together. She won't be able to change them throughout the day. I have an aide comes in the morning and gives me a bed bath and get me in my wheelchair. The rest of the day, there's just me and my mom here until bedtime (around 9:00 PM) when my nighttime aide comes to put me to bed. My catheter bag is usually not emptied from morning to night. My mom cannot handle me to change briefs, and if they're left on, I would have all types of sores. Does anyone on this list have a urostomy? If so, how is it working for you? I would love to hear what others have to say regarding my dilemma. Naomi. C-4 quadriplegic due to Transverse Myelitis since July 2, 2005 Have a Blessed Day, Naomi
Re: [QUAD-L] My Dilemma
I truly hope that the procedure works for you. After many years of using an indwelling your bladder is the size of a walnut, and that is not uncommon. Based on the info you provided, I believe your faith in your doctor is most important. Best Wishes In a message dated 5/17/2010 6:31:56 P.M. Central Daylight Time, ladyno...@aol.com writes: I am a C-4 quad with an indwelling Foley catheter. My urologist says that my urethra is eroding, and suggests I have a procedure called a urostomy. He performed a procedure called Urodynamic, which measures the amount of urine your bladder can hold. Mine is holding less than an ounce of urine. So now he wants to remove my bladder, and make me a new one using part of my small intestine. During this procedure, both ureters are relocated, a new bladder is made, and urine as directed from the body through a stoma in the abdomen, which connects to a bag that adheres to the skin. I am going to the hospital on Tuesday to have an MRI, to make sure that it's safe for me to have this procedure because I also have Crohn's disease and disturbing my small intestine, may cause my Crohn's to flareup (which is a very terrible thing). My dilemma is this: I have to choose between having this very invasive surgery, and all of that may come after it including infection from many sources, including the new bladder, ureter relocation, the stoma, and skin irritation from the adhesive for the bag, and not to mention the Crohn's flareup Or. I can wear incontinent briefs which I don't have anyone to change them, because there's just me and my 80 year old mother, living together. She won't be able to change them throughout the day. I have an aide comes in the morning and gives me a bed bath and get me in my wheelchair. The rest of the day, there's just me and my mom here until bedtime (around 9:00 PM) when my nighttime aide comes to put me to bed. My catheter bag is usually not emptied from morning to night. My mom cannot handle me to change briefs, and if they're left on, I would have all types of sores. Does anyone on this list have a urostomy? If so, how is it working for you? I would love to hear what others have to say regarding my dilemma. Naomi. C-4 quadriplegic due to Transverse Myelitis since July 2, 2005 Have a Blessed Day, Naomi
RE: [QUAD-L] My Dilemma
If you go with briefs, is attendant care not an option? Through insurance/Medicare? Aaron Mann C4-5, 1988 From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Monday, May 17, 2010 6:31 PM To: quad-list@eskimo.com Subject: [QUAD-L] My Dilemma I am a C-4 quad with an indwelling Foley catheter. My urologist says that my urethra is eroding, and suggests I have a procedure called a urostomy. He performed a procedure called Urodynamic, which measures the amount of urine your bladder can hold. Mine is holding less than an ounce of urine. So now he wants to remove my bladder, and make me a new one using part of my small intestine. During this procedure, both ureters are relocated, a new bladder is made, and urine as directed from the body through a stoma in the abdomen, which connects to a bag that adheres to the skin. I am going to the hospital on Tuesday to have an MRI, to make sure that it's safe for me to have this procedure because I also have Crohn's disease and disturbing my small intestine, may cause my Crohn's to flareup (which is a very terrible thing). My dilemma is this: I have to choose between having this very invasive surgery, and all of that may come after it including infection from many sources, including the new bladder, ureter relocation, the stoma, and skin irritation from the adhesive for the bag, and not to mention the Crohn's flareup Or. I can wear incontinent briefs which I don't have anyone to change them, because there's just me and my 80 year old mother, living together. She won't be able to change them throughout the day. I have an aide comes in the morning and gives me a bed bath and get me in my wheelchair. The rest of the day, there's just me and my mom here until bedtime (around 9:00 PM) when my nighttime aide comes to put me to bed. My catheter bag is usually not emptied from morning to night. My mom cannot handle me to change briefs, and if they're left on, I would have all types of sores. Does anyone on this list have a urostomy? If so, how is it working for you? I would love to hear what others have to say regarding my dilemma. Naomi. C-4 quadriplegic due to Transverse Myelitis since July 2, 2005 Have a Blessed Day, Naomi
Re: [QUAD-L] 21st anniversary!
Congrats, Jim-- you have accomplished a lot, 21 years is an amazing feat, especially when being full quad and or vent dependent..I'm a c-6 and have arm movement---and you and a few others on here are an inspiration to me and others on and off this list ! hang in there---we want to see you post many more anniversaries ! Dan H.** From: Jim Lubin jlu...@eskimo.com To: quad-list@eskimo.com; tmic-l...@eskimo.com; vent-us...@eskimo.com Sent: Mon, May 17, 2010 4:13:51 PM Subject: [QUAD-L] 21st anniversary! Today, May 17th, makes 21 years since I became a ventilator dependent quadriplegic due to acute transverse myelitis. I was 21 when it happened so it has now been half my life. I woke up that morning with a sore shoulder. Thinking I just slept in a wrong position I went to work. After about 30 minutes the pain in my shoulder increased and I started feeling dizzy. I tried to stand up but could not. Someone helped me lay down. In a short amount of time I remember a paramedic asking me my age, I tried to answer but could not talk. I found out I had stopped breathing. The next memory I have is waking up in the hospital unable to move or speak. Transverse Myelitis is an inflammatory attack in the spinal cord. It is an auto immune disorder where a persons own immune system mistakenly attacks and destroys myelin, the insulating material that surrounds nerves. There is no known cause or cure. It can happen to anyone at any age. In 2008, the Transverse Myelitis Association has established the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders. The purpose of the Fellowship is to encourage the development of medical specializations in TM, ADEM and NMO through a year of study under a leading TM, ADEM or NMO specialist. If you think this is a worthy cause and would like to make a tax deductible donation to support it, you can do so using this link http://www.myelitis.org/fellowship-donation Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [QUAD-L] My Dilemma
Hi Naomi, I'm a little confused, having an indwelling catheter for five years isn't that long. in any event, I certainly would get a second and third opinion before undergoing such drastic surgery. And even if your bladder has shrunk does it really matter? As for your eroding urethra, I'm no doctor, but it seems there should be some easier way to fix it. Dan At 07:31 PM 5/17/2010, ladyno...@aol.com said something that elicited my response: I am a C-4 quad with an indwelling Foley catheter. My urologist says that my urethra is eroding, and suggests I have a procedure called a urostomy. He performed a procedure called Urodynamic, which measures the amount of urine your bladder can hold. Mine is holding less than an ounce of urine. So now he wants to remove my bladder, and make me a new one using part of my small intestine. During this procedure, both ureters are relocated, a new bladder is made, and urine as directed from the body through a stoma in the abdomen, which connects to a bag that adheres to the skin. I am going to the hospital on Tuesday to have an MRI, to make sure that it's safe for me to have this procedure because I also have Crohn's disease and disturbing my small intestine, may cause my Crohn's to flareup (which is a very terrible thing).?xml:namespace prefix = o ns = urn:schemas-microsoft-com:office:office / My dilemma is this: I have to choose between having this very invasive surgery, and all of that may come after it including infection from many sources, including the new bladder, ureter relocation, the stoma, and skin irritation from the adhesive for the bag, and not to mention the Crohn's flareup Or. I can wear incontinent briefs which I don't have anyone to change them, because there's just me and my 80 year old mother, living together. She won't be able to change them throughout the day. I have an aide comes in the morning and gives me a bed bath and get me in my wheelchair. The rest of the day, there's just me and my mom here until bedtime (around 9:00 PM) when my nighttime aide comes to put me to bed. My catheter bag is usually not emptied from morning to night. My mom cannot handle me to change briefs, and if they're left on, I would have all types of sores. Does anyone on this list have a urostomy? If so, how is it working for you? I would love to hear what others have to say regarding my dilemma. Naomi. C-4 quadriplegic due to Transverse Myelitis since July 2, 2005 Have a Blessed Day, Naomi
Re: [QUAD-L] My Dilemma
really - a suprapubic is not an option? i don't know much about them but DO ask a few doctors before you decide. It's tough second guessing doctors BUT we MUST. Some just operate in a fog. AZDAVE In a message dated 5/17/2010 5:47:23 P.M. US Mountain Standard Time, d...@unh.edu writes: Hi Naomi, I'm a little confused, having an indwelling catheter for five years isn't that long. in any event, I certainly would get a second and third opinion before undergoing such drastic surgery. And even if your bladder has shrunk does it really matter? As for your eroding urethra, I'm no doctor, but it seems there should be some easier way to fix it. Dan At 07:31 PM 5/17/2010, ladyno...@aol.com said something that elicited my response: I am a C-4 quad with an indwelling Foley catheter. My urologist says that my urethra is eroding, and suggests I have a procedure called a urostomy. He performed a procedure called Urodynamic, which measures the amount of urine your bladder can hold. Mine is holding less than an ounce of urine. So now he wants to remove my bladder, and make me a new one using part of my small intestine. During this procedure, both ureters are relocated, a new bladder is made, and urine as directed from the body through a stoma in the abdomen, which connects to a bag that adheres to the skin. I am going to the hospital on Tuesday to have an MRI, to make sure that it's safe for me to have this procedure because I also have Crohn's disease and disturbing my small intestine, may cause my Crohn's to flareup (which is a very terrible thing).?xml:namespace prefix = o ns = urn:schemas-microsoft-com:office:office / My dilemma is this: I have to choose between having this very invasive surgery, and all of that may come after it including infection from many sources, including the new bladder, ureter relocation, the stoma, and skin irritation from the adhesive for the bag, and not to mention the Crohn's flareup Or. I can wear incontinent briefs which I don't have anyone to change them, because there's just me and my 80 year old mother, living together. She won't be able to change them throughout the day. I have an aide comes in the morning and gives me a bed bath and get me in my wheelchair. The rest of the day, there's just me and my mom here until bedtime (around 9:00 PM) when my nighttime aide comes to put me to bed. My catheter bag is usually not emptied from morning to night. My mom cannot handle me to change briefs, and if they're left on, I would have all types of sores. Does anyone on this list have a urostomy? If so, how is it working for you? I would love to hear what others have to say regarding my dilemma. Naomi. C-4 quadriplegic due to Transverse Myelitis since July 2, 2005 Have a Blessed Day, Naomi
Re: [QUAD-L] My Dilemma
really - a suprapubic is not an option? i don't know much about them but DO ask a few doctors before you decide. It's tough second guessing doctors BUT we MUST. Some just operate in a fog. AZDAVE In a message dated 5/17/2010 5:47:23 P.M. US Mountain Standard Time, d...@unh.edu writes: Hi Naomi, I'm a little confused, having an indwelling catheter for five years isn't that long. in any event, I certainly would get a second and third opinion before undergoing such drastic surgery. And even if your bladder has shrunk does it really matter? As for your eroding urethra, I'm no doctor, but it seems there should be some easier way to fix it. Dan At 07:31 PM 5/17/2010, ladyno...@aol.com said something that elicited my response: I am a C-4 quad with an indwelling Foley catheter. My urologist says that my urethra is eroding, and suggests I have a procedure called a urostomy. He performed a procedure called Urodynamic, which measures the amount of urine your bladder can hold. Mine is holding less than an ounce of urine. So now he wants to remove my bladder, and make me a new one using part of my small intestine. During this procedure, both ureters are relocated, a new bladder is made, and urine as directed from the body through a stoma in the abdomen, which connects to a bag that adheres to the skin. I am going to the hospital on Tuesday to have an MRI, to make sure that it's safe for me to have this procedure because I also have Crohn's disease and disturbing my small intestine, may cause my Crohn's to flareup (which is a very terrible thing).?xml:namespace prefix = o ns = urn:schemas-microsoft-com:office:office / My dilemma is this: I have to choose between having this very invasive surgery, and all of that may come after it including infection from many sources, including the new bladder, ureter relocation, the stoma, and skin irritation from the adhesive for the bag, and not to mention the Crohn's flareup Or. I can wear incontinent briefs which I don't have anyone to change them, because there's just me and my 80 year old mother, living together. She won't be able to change them throughout the day. I have an aide comes in the morning and gives me a bed bath and get me in my wheelchair. The rest of the day, there's just me and my mom here until bedtime (around 9:00 PM) when my nighttime aide comes to put me to bed. My catheter bag is usually not emptied from morning to night. My mom cannot handle me to change briefs, and if they're left on, I would have all types of sores. Does anyone on this list have a urostomy? If so, how is it working for you? I would love to hear what others have to say regarding my dilemma. Naomi. C-4 quadriplegic due to Transverse Myelitis since July 2, 2005 Have a Blessed Day, Naomi
Re: [QUAD-L] 21st anniversary!
Many cudos to you Jim. I'm coming up on 43 years but my c3 incomplete is child's play compared to your vent dependant life. I can't even imagine what your life is like. I don't post very often because my problems seem so 'superficial' to those of you who are REAL quads. Although i'm in a chair 100% and have quad-gut issues, UTIs, messed up hands,.. I'm just in awe of you guys who do so much with so little. You guys are truly amazing. AZDAVE In a message dated 5/17/2010 2:16:05 P.M. US Mountain Standard Time, jlu...@eskimo.com writes: Today, May 17th, makes 21 years since I became a ventilator dependent quadriplegic due to acute transverse myelitis. I was 21 when it happened so it has now been half my life. I woke up that morning with a sore shoulder. Thinking I just slept in a wrong position I went to work. After about 30 minutes the pain in my shoulder increased and I started feeling dizzy. I tried to stand up but could not. Someone helped me lay down. In a short amount of time I remember a paramedic asking me my age, I tried to answer but could not talk. I found out I had stopped breathing. The next memory I have is waking up in the hospital unable to move or speak. Transverse Myelitis is an inflammatory attack in the spinal cord. It is an auto immune disorder where a persons own immune system mistakenly attacks and destroys myelin, the insulating material that surrounds nerves. There is no known cause or cure. It can happen to anyone at any age. In 2008, the Transverse Myelitis Association has established the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders. The purpose of the Fellowship is to encourage the development of medical specializations in TM, ADEM and NMO through a year of study under a leading TM, ADEM or NMO specialist. If you think this is a worthy cause and would like to make a tax deductible donation to support it, you can do so using this link _http://www.myelitis.org/fellowship-donation_ (http://www.myelitis.org/fellowship-donation) Jim Lubin jlu...@eskimo.com _http://makoa.org/jim_ (http://makoa.org/jim) disAbility Resources: _http://www.makoa.org _ (http://www.makoa.org/)
