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Originally Posted by HalcyonDays
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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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.