Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 You can apply as soon as you become disabled. When you are approved, they will give you backpay, five months starting from the date that you filed. In fact, The Social Security Administration advises you to go ahead and apply, because they know it is a long process. They will tell you, that even if you are hesitant to apply, to go ahead and do it, because you can always stop the process. SSA assumes that everyone has at least five months' worth of savings to get them by for that long. There is NO WAITING period to apply for benefits! Kristi In a message dated 9/5/2006 9:59:30 AM Eastern Daylight Time, mzw4@... writes: A whole year now?? I was sure when I looked at it three years ago it was only 6 months! Dang, how can you live that long without income??? Gosh, you have to lose your house before they'll give you the money you've paid in to guard against financial ruin in the case of something like this? Oh, that makes total sense! --- Barbara Hill <_ellijaygal@..._ (mailto:ellijaygal@...) > wrote: > If you go to the social security website and look up > the disability it appears that you have to have a > year of no substantial income before you can even > apply!!! > > Weaver <_mzw4@..._ (mailto:mzw4@...) > wrote: Hi > Patsy. I struggle with this a lot. I am 38. My > second surgery was 8 years ago, and I have different > levels of pain on different days. I have gone > through > many different meds. I had the shots in my back. I > haven't gone the way of the stimulator because I > can't > imagine something so drastic and that is just my > hang > up about having a device implanted into my back that > I > might be able to see or feel (I'm kinda small). > > While I'm not the sole support for my family, I do > earn more than half our income and my insurance is > awesome. There are days, though, when I go home and > all I want to do is lie in bed and cry for a few > hours > before passing out from exhaustion. Pain saps every > tiny bit of energy from me, and it takes a lot of > effort for me to do most anything at my house. At > work, I do just okay most of the time. I question > how > smart it is for me to expend all my energy at work > and > have none for my kids at night. I'm often grouchy > and > mean at home, and I certainly don't have the > patience > I did when I didn't feel pain all day long. > > As for SS disability, pain is definitely a factor to > consider. There are members on the board who are on > SSD, and hopefully they will answer some questions > for > you. I fear the 6 month wait for approval more than > I > fear being rejected. What would we do without my > income for 6 months?? > > Good luck, and I certainly understand being tired of > the cycle! > > > > --- sweettrillium <_sterlingrosebud@sterlingros_ (mailto:sterlingrosebud@...) > > wrote: > > > Hi, I was fortunate in that I had no severe > symptoms > > from my tethered > > cord until I reached the ripe young age of 50. > > However, onece they > > kicked in, my life has dramatically changed. I > have > > had 2 > > detetherings, (the last one not completely > > successful) and have had a > > trial implantation of a neurostimulator for the > > severe pain in my left > > hip and leg. I go in for the permanent implant > > September 27. I know > > that this is not an ideal form of pain comtrol, > but > > no medicine, > > combination of medicine, or shots have helped. > > Through all this, I > > still have to work, since I am my sole supporter > and > > I surely need the > > medical benefits. The problem with that is, as all > > of you that have > > neouropathy know, working through pain saps every > > bit of your strength > > and definitely limits life in general. > > > > What my question now is, how much longer can I > keep > > this up? I was > > wondering if most people with this chronic pain > > continue to work? Has > > anyone gone on any type of disability, social > > security, etc? Pain is > > such a subjective thing, I don't know how > difficult > > it would be to > > convince a board or whatever that it constitutes a > > disability. I would > > really appreciate some feedback. Thanks, Patsy > > > > > > > > > > ____________ ____ ____ ____ ____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Hi Patsy. I struggle with this a lot. I am 38. My second surgery was 8 years ago, and I have different levels of pain on different days. I have gone through many different meds. I had the shots in my back. I haven't gone the way of the stimulator because I can't imagine something so drastic and that is just my hang up about having a device implanted into my back that I might be able to see or feel (I'm kinda small). While I'm not the sole support for my family, I do earn more than half our income and my insurance is awesome. There are days, though, when I go home and all I want to do is lie in bed and cry for a few hours before passing out from exhaustion. Pain saps every tiny bit of energy from me, and it takes a lot of effort for me to do most anything at my house. At work, I do just okay most of the time. I question how smart it is for me to expend all my energy at work and have none for my kids at night. I'm often grouchy and mean at home, and I certainly don't have the patience I did when I didn't feel pain all day long. As for SS disability, pain is definitely a factor to consider. There are members on the board who are on SSD, and hopefully they will answer some questions for you. I fear the 6 month wait for approval more than I fear being rejected. What would we do without my income for 6 months?? Good luck, and I certainly understand being tired of the cycle! --- sweettrillium wrote: > Hi, I was fortunate in that I had no severe symptoms > from my tethered > cord until I reached the ripe young age of 50. > However, onece they > kicked in, my life has dramatically changed. I have > had 2 > detetherings, (the last one not completely > successful) and have had a > trial implantation of a neurostimulator for the > severe pain in my left > hip and leg. I go in for the permanent implant > September 27. I know > that this is not an ideal form of pain comtrol, but > no medicine, > combination of medicine, or shots have helped. > Through all this, I > still have to work, since I am my sole supporter and > I surely need the > medical benefits. The problem with that is, as all > of you that have > neouropathy know, working through pain saps every > bit of your strength > and definitely limits life in general. > > What my question now is, how much longer can I keep > this up? I was > wondering if most people with this chronic pain > continue to work? Has > anyone gone on any type of disability, social > security, etc? Pain is > such a subjective thing, I don't know how difficult > it would be to > convince a board or whatever that it constitutes a > disability. I would > really appreciate some feedback. Thanks, Patsy > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 patsy...i worked in a pain clinic for a few years. Getting disability was one time it seemed worth it to those of us on staff for people to hire a disability attorney if one can afford to do so....it can help get you the disability on the first round. Good luck. randee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 If you go to the social security website and look up the disability it appears that you have to have a year of no substantial income before you can even apply!!! Weaver wrote: Hi Patsy. I struggle with this a lot. I am 38. My second surgery was 8 years ago, and I have different levels of pain on different days. I have gone through many different meds. I had the shots in my back. I haven't gone the way of the stimulator because I can't imagine something so drastic and that is just my hang up about having a device implanted into my back that I might be able to see or feel (I'm kinda small). While I'm not the sole support for my family, I do earn more than half our income and my insurance is awesome. There are days, though, when I go home and all I want to do is lie in bed and cry for a few hours before passing out from exhaustion. Pain saps every tiny bit of energy from me, and it takes a lot of effort for me to do most anything at my house. At work, I do just okay most of the time. I question how smart it is for me to expend all my energy at work and have none for my kids at night. I'm often grouchy and mean at home, and I certainly don't have the patience I did when I didn't feel pain all day long. As for SS disability, pain is definitely a factor to consider. There are members on the board who are on SSD, and hopefully they will answer some questions for you. I fear the 6 month wait for approval more than I fear being rejected. What would we do without my income for 6 months?? Good luck, and I certainly understand being tired of the cycle! --- sweettrillium wrote: > Hi, I was fortunate in that I had no severe symptoms > from my tethered > cord until I reached the ripe young age of 50. > However, onece they > kicked in, my life has dramatically changed. I have > had 2 > detetherings, (the last one not completely > successful) and have had a > trial implantation of a neurostimulator for the > severe pain in my left > hip and leg. I go in for the permanent implant > September 27. I know > that this is not an ideal form of pain comtrol, but > no medicine, > combination of medicine, or shots have helped. > Through all this, I > still have to work, since I am my sole supporter and > I surely need the > medical benefits. The problem with that is, as all > of you that have > neouropathy know, working through pain saps every > bit of your strength > and definitely limits life in general. > > What my question now is, how much longer can I keep > this up? I was > wondering if most people with this chronic pain > continue to work? Has > anyone gone on any type of disability, social > security, etc? Pain is > such a subjective thing, I don't know how difficult > it would be to > convince a board or whatever that it constitutes a > disability. I would > really appreciate some feedback. Thanks, Patsy > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 A whole year now?? I was sure when I looked at it three years ago it was only 6 months! Dang, how can you live that long without income??? Gosh, you have to lose your house before they'll give you the money you've paid in to guard against financial ruin in the case of something like this? Oh, that makes total sense! --- Barbara Hill wrote: > If you go to the social security website and look up > the disability it appears that you have to have a > year of no substantial income before you can even > apply!!! > > Weaver wrote: Hi > Patsy. I struggle with this a lot. I am 38. My > second surgery was 8 years ago, and I have different > levels of pain on different days. I have gone > through > many different meds. I had the shots in my back. I > haven't gone the way of the stimulator because I > can't > imagine something so drastic and that is just my > hang > up about having a device implanted into my back that > I > might be able to see or feel (I'm kinda small). > > While I'm not the sole support for my family, I do > earn more than half our income and my insurance is > awesome. There are days, though, when I go home and > all I want to do is lie in bed and cry for a few > hours > before passing out from exhaustion. Pain saps every > tiny bit of energy from me, and it takes a lot of > effort for me to do most anything at my house. At > work, I do just okay most of the time. I question > how > smart it is for me to expend all my energy at work > and > have none for my kids at night. I'm often grouchy > and > mean at home, and I certainly don't have the > patience > I did when I didn't feel pain all day long. > > As for SS disability, pain is definitely a factor to > consider. There are members on the board who are on > SSD, and hopefully they will answer some questions > for > you. I fear the 6 month wait for approval more than > I > fear being rejected. What would we do without my > income for 6 months?? > > Good luck, and I certainly understand being tired of > the cycle! > > > > --- sweettrillium > wrote: > > > Hi, I was fortunate in that I had no severe > symptoms > > from my tethered > > cord until I reached the ripe young age of 50. > > However, onece they > > kicked in, my life has dramatically changed. I > have > > had 2 > > detetherings, (the last one not completely > > successful) and have had a > > trial implantation of a neurostimulator for the > > severe pain in my left > > hip and leg. I go in for the permanent implant > > September 27. I know > > that this is not an ideal form of pain comtrol, > but > > no medicine, > > combination of medicine, or shots have helped. > > Through all this, I > > still have to work, since I am my sole supporter > and > > I surely need the > > medical benefits. The problem with that is, as all > > of you that have > > neouropathy know, working through pain saps every > > bit of your strength > > and definitely limits life in general. > > > > What my question now is, how much longer can I > keep > > this up? I was > > wondering if most people with this chronic pain > > continue to work? Has > > anyone gone on any type of disability, social > > security, etc? Pain is > > such a subjective thing, I don't know how > difficult > > it would be to > > convince a board or whatever that it constitutes a > > disability. I would > > really appreciate some feedback. Thanks, Patsy > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 In the UK, despite having visible signs of TCS (bilaterally deformed feet and documented chronic pain) I had to go all the way to Tribunal to get only 5-years worth of Disability Living Allowance (DLA). I met all the eligibility conditions for the DLA and yet the certifying doctor would not accept the CP and deformities, and the visible evidence of major spinal surgery I mean - how disabled do you have to be to get what is rightfully yours, to help you actually live with TCS and all its ramifications, and to try to keep yourself mobile and not be a burden on the National Health Service. Thank heavens I can still actually work and support myself, as my employer has been very accomodating for the past 6 years I have suffered the deterioration of the TCS I have to start all over again in 2.5 years time to get this renewed!! OK, rant over, but the whole thing about DLA and SSD really makes me MAD!!!!!!!! Calm now Nina Bristol, UK -- > A whole year now?? I was sure when I looked at it > three years ago it was only 6 months! Dang, how can > you live that long without income??? Gosh, you have > to lose your house before they'll give you the money > you've paid in to guard against financial ruin in the > case of something like this? Oh, that makes total > sense! > > > > --- Barbara Hill wrote: > >> If you go to the social security website and look up >> the disability it appears that you have to have a >> year of no substantial income before you can even >> apply!!! >> >> Weaver wrote: Hi >> Patsy. I struggle with this a lot. I am 38. My >> second surgery was 8 years ago, and I have different >> levels of pain on different days. I have gone >> through >> many different meds. I had the shots in my back. I >> haven't gone the way of the stimulator because I >> can't >> imagine something so drastic and that is just my >> hang >> up about having a device implanted into my back that >> I >> might be able to see or feel (I'm kinda small). >> >> While I'm not the sole support for my family, I do >> earn more than half our income and my insurance is >> awesome. There are days, though, when I go home and >> all I want to do is lie in bed and cry for a few >> hours >> before passing out from exhaustion. Pain saps every >> tiny bit of energy from me, and it takes a lot of >> effort for me to do most anything at my house. At >> work, I do just okay most of the time. I question >> how >> smart it is for me to expend all my energy at work >> and >> have none for my kids at night. I'm often grouchy >> and >> mean at home, and I certainly don't have the >> patience >> I did when I didn't feel pain all day long. >> >> As for SS disability, pain is definitely a factor to >> consider. There are members on the board who are on >> SSD, and hopefully they will answer some questions >> for >> you. I fear the 6 month wait for approval more than >> I >> fear being rejected. What would we do without my >> income for 6 months?? >> >> Good luck, and I certainly understand being tired of >> the cycle! >> >> >> >> --- sweettrillium >> wrote: >> >> > Hi, I was fortunate in that I had no severe >> symptoms >> > from my tethered >> > cord until I reached the ripe young age of 50. >> > However, onece they >> > kicked in, my life has dramatically changed. I >> have >> > had 2 >> > detetherings, (the last one not completely >> > successful) and have had a >> > trial implantation of a neurostimulator for the >> > severe pain in my left >> > hip and leg. I go in for the permanent implant >> > September 27. I know >> > that this is not an ideal form of pain comtrol, >> but >> > no medicine, >> > combination of medicine, or shots have helped. >> > Through all this, I >> > still have to work, since I am my sole supporter >> and >> > I surely need the >> > medical benefits. The problem with that is, as all >> > of you that have >> > neouropathy know, working through pain saps every >> > bit of your strength >> > and definitely limits life in general. >> > >> > What my question now is, how much longer can I >> keep >> > this up? I was >> > wondering if most people with this chronic pain >> > continue to work? Has >> > anyone gone on any type of disability, social >> > security, etc? Pain is >> > such a subjective thing, I don't know how >> difficult >> > it would be to >> > convince a board or whatever that it constitutes a >> > disability. I would >> > really appreciate some feedback. Thanks, Patsy >> > >> > >> > >> > >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 In Canada you have to work 4 FULL time years out of the previous 7 years to qualify ( in year qualification )...then there is their disability qualifications and good luck with that !! Not impossible, but not any easier here either. > > > Hi, I was fortunate in that I had no severe symptoms > > from my tethered > > cord until I reached the ripe young age of 50. > > However, onece they > > kicked in, my life has dramatically changed. I have > > had 2 > > detetherings, (the last one not completely > > successful) and have had a > > trial implantation of a neurostimulator for the > > severe pain in my left > > hip and leg. I go in for the permanent implant > > September 27. I know > > that this is not an ideal form of pain comtrol, but > > no medicine, > > combination of medicine, or shots have helped. > > Through all this, I > > still have to work, since I am my sole supporter and > > I surely need the > > medical benefits. The problem with that is, as all > > of you that have > > neouropathy know, working through pain saps every > > bit of your strength > > and definitely limits life in general. > > > > What my question now is, how much longer can I keep > > this up? I was > > wondering if most people with this chronic pain > > continue to work? Has > > anyone gone on any type of disability, social > > security, etc? Pain is > > such a subjective thing, I don't know how difficult > > it would be to > > convince a board or whatever that it constitutes a > > disability. I would > > really appreciate some feedback. Thanks, Patsy > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 It is so miserable being housebound because of incontinence. Thirteen yrs ago, at 45 yrs old, I became an irrigating colostomate. After suffering most of my life with constipation interspersed with embarrassing accidents, now I go once everyday after introducing some warm water into my stoma. It probably isn't for everybody but I got some of my life back and less pressure on the weaken bladder. My retethered cord is at lower lumbar/sacral, primary deficits bladder & bowel. Pat L. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi Patsy, I've been on disability since 2003, when I finally decided to listen to the advice of my physical med/rehab doc, who kept telling me to stop working. I grew up knowing that I had some sort of spina bifida with obvious neurological problems and a huge lipoma across my lumbar spine (I had no surgery to correct anything up until this started), but they were stable all the way until my mid forties. At that point my problems were hip and knee pain, but I was told it was due to arthritis from my compensated gait. It took until my late 40s to get the diagnosis of tethered cord due to lipomyelomeningocele, and I had my cord release when I was 51. Things did not go well, but I did get some relief for several years. By the time I was approaching 56, my life consisted of going to work and crying from pain on the couch nights and weekends. My abilty to walk was compromised and my bowel/bladder issues were becoming more complicated. All the nsgs that I consulted do not want to do any surgery that opens my dura again...keep telling me that all my increasing symptoms are due to aging (ugh!) I was/am single and had always worked full time - in poorly paying medical social services positions, unfortunately (I didn't plan my life very well <g>) So in spite of the doctor telling me I needed to stop working (she charted that in my medical record), and in spite of the increasing stress I put on my body by being active, I continued to work, until I began to feel like my problems outdid any of those who were my clients. By that time, I'd saved up more money and one of my sons offered to help me with expenses if necessary. So just a few weeks after I left my job I started filling out all the paperwork for disabilty. I included copies of my medical records, letters from friends in the medical profession who had seen my decline, and always emphasized the negative of what I could not do, what I had given up to attempt to keep working (thanks to Kathy's advice). I emphasized the increased pain at walking/standing/sitting for short periods of time, the effects of neurontin and narcotics on my short term memory and the need to increase dosages if my pain levels increased due to being up at work all day (sort of a catch 22 situation), the increasing muscle spasms with standing/walking/sitting - which increases the pain etc., mobility probelms and bowel/bladder issues .... and how this affected my ability to work, my ability to take care of myself and my ability to maintain contacts with friends and family. I was approved with that first application. My pain levels are very managable now as long as I remain fairly inactive. I do 2 hours of volunteer work a week filling out paperwork, and that's all my back can tolerate. It's not always easy to live on social security disabilty, but it is possible. My family helped me by paying for my medical insurance, from my old company via COBRA, but very expensive when you have to pay for all of it, covering the part that your company covered when you were working makes a huge difference. COBRA can be extended past the 18 month limit if you've applied for disabilty, and are going to be getting Medicare. It takes 2 years of being on disability before you are Medicare eligible. Last year I had to pay for all of my medicines - my family helped with that too. This year I'm using Medicare part D - I love it! I pay $2 for a months' worth of generics and do my best to stick to them. I take nine different prescription drugs and a number of suppliments that are supposed to make nerve work as well as they can. Whew! V Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Our stories are very similar- I worked with pain, bladder and bowel incontinence for 25 years and was just DENIED social security disability. I have hired an attorney, but the courts are back logged over a year. I have a pension, but not enough to pay my bills. I still cannot believed I was denied. Have a pain free day, Judy > >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: Disability >Date: Thu, 07 Sep 2006 02:39:47 -0000 > >Hi Patsy, > >I've been on disability since 2003, when I finally decided to listen >to the advice of my physical med/rehab doc, who kept telling me to >stop working. > >I grew up knowing that I had some sort of spina bifida with obvious >neurological problems and a huge lipoma across my lumbar spine (I >had no surgery to correct anything up until this started), but they >were stable all the way until my mid forties. At that point my >problems were hip and knee pain, but I was told it was due to >arthritis from my compensated gait. > >It took until my late 40s to get the diagnosis of tethered cord due >to lipomyelomeningocele, and I had my cord release when I was 51. >Things did not go well, but I did get some relief for several >years. By the time I was approaching 56, my life consisted of going >to work and crying from pain on the couch nights and weekends. My >abilty to walk was compromised and my bowel/bladder issues were >becoming more complicated. All the nsgs that I consulted do not >want to do any surgery that opens my dura again...keep telling me >that all my increasing symptoms are due to aging (ugh!) > >I was/am single and had always worked full time - in poorly paying >medical social services positions, unfortunately (I didn't plan my >life very well <g>) So in spite of the doctor telling me I needed >to stop working (she charted that in my medical record), and in >spite of the increasing stress I put on my body by being active, I >continued to work, until I began to feel like my problems outdid any >of those who were my clients. > >By that time, I'd saved up more money and one of my sons offered to >help me with expenses if necessary. So just a few weeks after I >left my job I started filling out all the paperwork for disabilty. I >included copies of my medical records, letters from friends in the >medical profession who had seen my decline, and always emphasized >the negative of what I could not do, what I had given up to attempt >to keep working (thanks to Kathy's advice). I emphasized the >increased pain at walking/standing/sitting for short periods of >time, the effects of neurontin and narcotics on my short term memory >and the need to increase dosages if my pain levels increased due to >being up at work all day (sort of a catch 22 situation), the >increasing muscle spasms with standing/walking/sitting - which >increases the pain etc., mobility probelms and bowel/bladder >issues .... and how this affected my ability to work, my ability to >take care of myself and my ability to maintain contacts with friends >and family. > >I was approved with that first application. My pain levels are very >managable now as long as I remain fairly inactive. I do 2 hours of >volunteer work a week filling out paperwork, and that's all my back >can tolerate. > >It's not always easy to live on social security disabilty, but it is >possible. My family helped me by paying for my medical insurance, >from my old company via COBRA, but very expensive when you have to >pay for all of it, covering the part that your company covered when >you were working makes a huge difference. COBRA can be extended >past the 18 month limit if you've applied for disabilty, and are >going to be getting Medicare. > >It takes 2 years of being on disability before you are Medicare >eligible. Last year I had to pay for all of my medicines - my family >helped with that too. This year I'm using Medicare part D - I love >it! I pay $2 for a months' worth of generics and do my best to >stick to them. I take nine different prescription drugs and a number >of suppliments that are supposed to make nerve work as well as they >can. > > Whew! > V > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.