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CIPN - Disability Possible?

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Unread 05-04-2012, 12:50 AM   #1
HalcyonDays
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Default CIPN - Disability Possible?

Greetings all, this is my first post on this forum, I was happy to find it. It's tough not having an outlet as I'm sure others are aware.

When I was a child I was diagnosed and treated for Hodgkins Lymphoma, I was given 6 months of chemotherapy and radiation. It's amazing that something that can save your life can also completely screw it up as well, as now I'm suffering from Chemotherapy Induced Peripheral Neuropathy (CIPN) in both my legs. My neurologist at the time described it as quite possibly the worst case of CIPN he'd ever seen. It convinced him to prescribe me Oxycontin for it, so I figure it had to be worse than my body was telling me.

In short, with this condition, unless I'm managing it with pain medication (as nothing else at this point in time has even put a dent in it) I can not function in any shape or form. I can't hold a job, and as such it becomes more difficult to pay for a doctor to get the medication I need to control this condition, hence, the problems compound each other. Without the medicine I can't hold a job, and without a job, I can't get the meds I need.

Several people have suggested I apply for SSI, and I'm a little hesitant. There are a couple of reasons. Firstly, I don't really like the idea of SSI, because it feels like, I don't know, giving up? If that makes any sense. On one hand I'm open to it, on the other I'm not. It's confusing. I can still walk, I can still move, so I guess I feel like maybe I'm taking away from people who legitimately need SSI. I don't know. Secondly, is I live in Oklahoma, and it's notoriously difficult to get SSI here.

So before I even start the process, I would like to get some opinions on whether or not I should even attempt to do so. Any advice when doing so would also be appreciated.

~HD
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Unread 05-04-2012, 08:14 PM   #2
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Originally Posted by HalcyonDays View Post
Greetings all, this is my first post on this forum, I was happy to find it. It's tough not having an outlet as I'm sure others are aware.

When I was a child I was diagnosed and treated for Hodgkins Lymphoma, I was given 6 months of chemotherapy and radiation. It's amazing that something that can save your life can also completely screw it up as well, as now I'm suffering from Chemotherapy Induced Peripheral Neuropathy (CIPN) in both my legs. My neurologist at the time described it as quite possibly the worst case of CIPN he'd ever seen. It convinced him to prescribe me Oxycontin for it, so I figure it had to be worse than my body was telling me.

In short, with this condition, unless I'm managing it with pain medication (as nothing else at this point in time has even put a dent in it) I can not function in any shape or form. I can't hold a job, and as such it becomes more difficult to pay for a doctor to get the medication I need to control this condition, hence, the problems compound each other. Without the medicine I can't hold a job, and without a job, I can't get the meds I need.

Several people have suggested I apply for SSI, and I'm a little hesitant. There are a couple of reasons. Firstly, I don't really like the idea of SSI, because it feels like, I don't know, giving up? If that makes any sense. On one hand I'm open to it, on the other I'm not. It's confusing. I can still walk, I can still move, so I guess I feel like maybe I'm taking away from people who legitimately need SSI. I don't know. Secondly, is I live in Oklahoma, and it's notoriously difficult to get SSI here.

So before I even start the process, I would like to get some opinions on whether or not I should even attempt to do so. Any advice when doing so would also be appreciated.

~HD
You first need to understand the difference between SSI (Supplemental Security Income, a welfare type disability program) and SSDI (Social Security Disability Insurance) for people who have worked enough and can no longer work because of a severe disability. You probably should start at www.socialsecurity.gov.

As far as coming to terms with filing for disability, I guess you have to look at all your options and make the best choice for you. SSI and SSDI also have work incentives for people who are entitled who want to transition off of the programs, so it doesn't have to be a lifetime entitlement.

You are right that it is not easy to qualify in Oklahoma, Wyoming, New Hampshire, Georgia, any state. It is impossible to qualify if you don't apply. Also, your entitlement doesn't take anything away from anyone else. SSI and SSDI are entitlement programs and are paid out of the bottemless pit of the US budget. Paying or not paying you benefits doesn't change the amount of money payable to anyone. When or if it runs out, it affects everyone who is receiving benefits. There is always lots of speculation about Social Security benefits, but changes have to be decided by a change in law by a legislature not worried about being re-elected. And we have never had one of those. Will there be a crash someday? Probably. In my or your lifetime? No one knows.

Last edited by Janke; 05-05-2012 at 02:59 PM.
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Unread 05-05-2012, 06:08 PM   #3
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I don't quite understand your situation. You said you had chemo as a child and it caused this but did it cause the neuropathy right away or just now that you're an adult? If it started long ago then has it gotten worse or have you run out of coping mechanisms? And if it just started, why is it affecting you now?

The answers to those questions are pretty important if you're contemplating disability. I receive Social Security Disability and was approved quickily BUT I have a slew of diagnoses and health problems and it all started about 15 years before I applied and was awarded benefits.

In other words, I had been sick for a while, I received lots of medical care, I tried all sorts of new treatments, I changed careers, I went back to school, and I kept working until I was totally out of options and my health situation became dire. I'm not kidding when I say that staying alive and functioning is pretty much my full-time job now -- I have to see a lot of doctors and I take a lot of medications and have a lot of procedures and surgeries.

Quite honestly, that's what it takes to be approved expediently. You need a substantial medical record documenting the disabling condition and its deterioration and that you are regularly seen and treated. You also have to show that you've tried your dangedest to keep working and you simply can't work, even with treatment.

I have Lupus with an overlap of scleroderma and Crohn's Disease and degenerative disk disease on the side. I have neuropathy in my hands and feet, mostly from the scleroderma, and I find that amitriptylene helps quite a bit. It sure does make you sleepy so I take it at bedtime when I'm on it.
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Unread 05-05-2012, 09:27 PM   #4
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i would also say that you should apply asap. you need to have enough work credits to qualify for ssdi. if you dont have enough work credits and have low income and resources you may qualify for ssi. Many people are on SSDI because of their inability to work due to peripheral neuropathy. When you apply you have to show how your medical conditions, medications and treatments limit your ability to work. for example, cant stand, sit, kneel, walk, concentrate, fatigue etc.

its not true that you have to show a long history of work attempts, or a long history of medical records. you need medical records but they do not have to stretch out years and years. im sure you have plenty of medical records anyway. you have to show that you are unable to work for at least the next 12 months. It helps if you have failed work attempts but it is not necessary to have that failed work history.

Teatime your advice is not entirely accurate and could prove harmful for someone who may need ssdi and may well qualify, but who becomes discouraged and doesnt apply because of innacurate information that they read.
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Unread 05-06-2012, 12:25 AM   #5
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Originally Posted by echoes long ago View Post
i would also say that you should apply asap. you need to have enough work credits to qualify for ssdi. if you dont have enough work credits and have low income and resources you may qualify for ssi. Many people are on SSDI because of their inability to work due to peripheral neuropathy. When you apply you have to show how your medical conditions, medications and treatments limit your ability to work. for example, cant stand, sit, kneel, walk, concentrate, fatigue etc.

its not true that you have to show a long history of work attempts, or a long history of medical records. you need medical records but they do not have to stretch out years and years. im sure you have plenty of medical records anyway. you have to show that you are unable to work for at least the next 12 months. It helps if you have failed work attempts but it is not necessary to have that failed work history.

Teatime your advice is not entirely accurate and could prove harmful for someone who may need ssdi and may well qualify, but who becomes discouraged and doesnt apply because of innacurate information that they read.
My information is NOT inaccurate and no one here is responsible for another person's moods or actions. To successfully be awarded SSDI as expediently as possible, you need to have substantial medical records showing diagnosis and treatment, regular followups and cooperation, with no improvement expected for at least a year. You also need to prove that you cannot do your job and there aren't other jobs you are capable of doing.

Everyone's experiences are different. However, everyone DOES have to prove that they cannot work at any job and it's rather difficult to prove unless they have tried jobs and failed. And SSA expects documentation of continuing medical care and participation in treatment options. They want to see evidence that you're trying to get better -- if you're trying but it's just not working then you' are proving your case.

I personally know people who were denied and had to fight SSA for years to get approved because they didn't go to the doctor often enough or try new treatments. It is also very common to be denied because SSA decides you are able to do a sedentary job at least four hours per day. You have to prove otherwise.

Everyone complains about SSA and, yeah, it's a bureaucracy. However, if you know what sorts of things they're looking for and how you can prove your case, then it doesn't have to be a nightmare. Sometimes people apply too soon or without enough evidence and then they're mired in a battle for years.

That's the truth, and it helps people to know what they have to prove. It helped me when I applied. If someone had just said to me, "You go, girl! I'm sure you have enough evidence to apply so do it!" that's not helpful. I want specifics and I want someone to play the devil's advocate because I wanted my case to go quickly and SMOOTHLY. And it did. I proved my case on application and was awarded benefits in 3 months.

It is not an easy process and if someone could get "discouraged" just because someone tells them they need a lot of evidence and have a lot they need to prove, then that person is in for a bad time. But, whatever. I'm done with this subject for good.
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Unread 05-06-2012, 02:39 AM   #6
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Please take comments not relating or helpful to the original poster to PM.



Back to the topic,

HalcyonDays,
If you cannot work and have enough work credits it sounds like you should prepare to file, it may take time, so learning how best to get started is a good idea.
Have you seen the sticky threads at the top of the forum?
here is one -
Don't start your claim unprepared!!
http://neurotalk.psychcentral.com/thread148967.html
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Unread 05-06-2012, 11:17 AM   #7
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Originally Posted by Teatime View Post
My information is NOT inaccurate and no one here is responsible for another person's moods or actions. To successfully be awarded SSDI as expediently as possible, you need to have substantial medical records showing diagnosis and treatment, regular followups and cooperation, with no improvement expected for at least a year. You also need to prove that you cannot do your job and there aren't other jobs you are capable of doing.

Everyone's experiences are different. However, everyone DOES have to prove that they cannot work at any job and it's rather difficult to prove unless they have tried jobs and failed. And SSA expects documentation of continuing medical care and participation in treatment options. They want to see evidence that you're trying to get better -- if you're trying but it's just not working then you' are proving your case.

I personally know people who were denied and had to fight SSA for years to get approved because they didn't go to the doctor often enough or try new treatments. It is also very common to be denied because SSA decides you are able to do a sedentary job at least four hours per day. You have to prove otherwise.

Everyone complains about SSA and, yeah, it's a bureaucracy. However, if you know what sorts of things they're looking for and how you can prove your case, then it doesn't have to be a nightmare. Sometimes people apply too soon or without enough evidence and then they're mired in a battle for years.

That's the truth, and it helps people to know what they have to prove. It helped me when I applied. If someone had just said to me, "You go, girl! I'm sure you have enough evidence to apply so do it!" that's not helpful. I want specifics and I want someone to play the devil's advocate because I wanted my case to go quickly and SMOOTHLY. And it did. I proved my case on application and was awarded benefits in 3 months.

It is not an easy process and if someone could get "discouraged" just because someone tells them they need a lot of evidence and have a lot they need to prove, then that person is in for a bad time. But, whatever. I'm done with this subject for good.
What evidence is needed depends upon the diagnosis. A spinal cord injuiry or total blindness or Down's Syndrome would require probably one document.

The original poster should file a claim soon, but does need to seek out ongoing treatment to support his/her statements since medical evidence is necessary. Whether or not he/she has tried jobs and failed is just one factor. He/she states that she cannot function without pain medication and cannot work. Even if the claim process takes years and still may not end up with a favorable decision, that is not a reason to find out. The only way to find out is to file an application. Unless he/she expects to be back at work in less than 12 months, I do not see a reason to delay the application.

Failure to apply leads to zero benefits. Delaying applying just adds additional time to the process. However, being proactive is important. Gathering medical evidence. Seeing a doctor on a regular basis. Getting tests and treatment is important for two reasons - maybe something will work and there is more evidence.

File soon. Do not expect a quick favorable decision.
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Unread 05-07-2012, 02:48 PM   #8
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OK! Seems like I've seen a few posts since I've been on last. I'll try and answer what questions I saw.

In regards to my ability to work, I actually can work, albeit I absolutely must have pain medication to manage my CIPN, or I'm reduced to a shambling wreck. Standing for any length of time makes it worse, as the nerves in my legs are probably nothing what they used to be, especially my left leg. The pain is always in the same region, right below my knees to just above my ankles. The fact that I can work was another reason I was skeptical of being able to qualify for SSDI or SSI, because as Teatime put it, I can work a job for more than 4 hours at a time. Granted it has to be a sit-down position or it causes me extreme pain if I'm on my feet for any length of time.

The big mystery to me though is my CIPN pain only really started to manifest in a significant way almost a decade after my initial chemotherapy exposure. It was when I was 18 that I really started to notice the pain, and I initially was diagnosed with a severe case of Restless Legs Syndrome, but after more testing the diagnosis was changed to severe CIPN. The pain has steadily increased ever since, and its constant, 24 hours a day, 7 days a week, without pain medication. I honestly don't know why it has only started to become worse as I've gotten older, CIPN I don't think is even fully understood by my doctors, and even less by me personally.

All of the talk of me getting on SSDI/SSI was external, I never came up with the idea myself. That's why I'm here, because it confused me that I felt I was able to continue working as long as I had a pain management system set up (currently I'm on Tramadol 50MG every 6 hours, which I pay for by doing commission artwork), but had several people, including a social worker from St. Judes telling me I should try to get it. My confusion over SSI/SSDI was that everyone always kept referring it as SSI, I always assumed they were the same, but you know what they say about assumptions I suppose. I have been offered a follow up study at St. Judes for adult patients that will provide me with paperwork that has been proven to assist former patients in getting their disability cases won, so I might look into that at some point if this persists.

I'll do some more research.

~HD
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Unread 05-07-2012, 10:26 PM   #9
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Originally Posted by HalcyonDays View Post
OK! Seems like I've seen a few posts since I've been on last. I'll try and answer what questions I saw.

In regards to my ability to work, I actually can work, albeit I absolutely must have pain medication to manage my CIPN, or I'm reduced to a shambling wreck. Standing for any length of time makes it worse, as the nerves in my legs are probably nothing what they used to be, especially my left leg. The pain is always in the same region, right below my knees to just above my ankles. The fact that I can work was another reason I was skeptical of being able to qualify for SSDI or SSI, because as Teatime put it, I can work a job for more than 4 hours at a time. Granted it has to be a sit-down position or it causes me extreme pain if I'm on my feet for any length of time.

The big mystery to me though is my CIPN pain only really started to manifest in a significant way almost a decade after my initial chemotherapy exposure. It was when I was 18 that I really started to notice the pain, and I initially was diagnosed with a severe case of Restless Legs Syndrome, but after more testing the diagnosis was changed to severe CIPN. The pain has steadily increased ever since, and its constant, 24 hours a day, 7 days a week, without pain medication. I honestly don't know why it has only started to become worse as I've gotten older, CIPN I don't think is even fully understood by my doctors, and even less by me personally.

All of the talk of me getting on SSDI/SSI was external, I never came up with the idea myself. That's why I'm here, because it confused me that I felt I was able to continue working as long as I had a pain management system set up (currently I'm on Tramadol 50MG every 6 hours, which I pay for by doing commission artwork), but had several people, including a social worker from St. Judes telling me I should try to get it. My confusion over SSI/SSDI was that everyone always kept referring it as SSI, I always assumed they were the same, but you know what they say about assumptions I suppose. I have been offered a follow up study at St. Judes for adult patients that will provide me with paperwork that has been proven to assist former patients in getting their disability cases won, so I might look into that at some point if this persists.

I'll do some more research.

~HD
If you believe you can work six to eight hours a day at a sit down job, SSA will probably agree with you and find you not disabled for SSDI and SSI. So based on your current statements, I think you should continue to work as long as you can and save as much money as you can. There may come a time when you really can't work again and if can qualify for SSDI or SSI, you won't have much money to live on, especially in the months (or years) it may take to go through the claims process. I think you need to work with your doctors to be sure you have the best pain management possible.

Your feelings about whether or not you should apply are important to you, but have no meaning to the Social Security Administration and will have no bearing on a decision made on your case. The question is are you physically and mentally capable of doing sedentary work, six to eight hours a day. This can also include factors about the side effects of the pain medication.

You are making a living doing commission artwork which is a type of self-employment. You would have to provide dollar amounts and hours of work and profit. The evaluation of your self-employment has to be factored in before a decision is even made about your medical condition. Keep track of hours worked and money made. Keep track of the amount of time you can sit or stand or walk. The phrase "any length of time" is vague and open to multiple interpretations. SSA likes real numbers. Minutes, hours, weight you can lift in lbs, how long you can manipulate small objects, etc.
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Unread 05-08-2012, 05:19 AM   #10
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That's kind of the conclusion I arrived to also. I suppose my confusion is all these other people telling me to go for disability, and my own inner self telling me no, I don't want that.

I do know that a sit down job (provided with my pain meds) I can easily work 6-8 hours a day. I worked as a phone tech for DirecTV for about 6 months (left due to unrelated issues, it's another soul-sucking company after all :P ), and my shifts were 6 hours long. It has been over a year though since I've been employed, but that's also due to unrelated issues.

Sitting at the computer and typing like this is no problem at all. Since I do my artwork on the computer, that's not a problem either. Like I said, if I've got the medication to manage the pain, I can function just fine, I just need to take a few precautions is all, such as not standing on my feet for too long (about 2 hours I've noticed is the limit before I start to feel real pain), and avoiding factors such as injury to my legs which would upset the nerves, as it seems any severe stimulus such as an outside hit will set the nerves off sooner, requiring me to take another dosage of my medication.

If the condition does eventually degenerate further, which I hope to God it won't as it's bad enough as it is, I will remember the information I've been given and react accordingly.

~HD
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