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.

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.

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.

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

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.