Well, it's official; the U.S. government agrees that I'm a bona fide gimp.
And I am so relieved! I mean, WHEW!! I only got denied (and had to appeal) one time, which is really unusual for someone who never used an attorney. But seriously, when you're really disabled, and by that I mean, obviously, seriously, multiply disabled, there's usually enough undeniable evidence of it, and in my case the Social Security Disability people saw that evidence and agreed relatively quickly in the process that I am indeed truly disabled.
Again, big whew! I really expected to have to appeal at least one more time, so I'm deeply grateful that the system was more humane with me than it sometimes is with applicants. Almost everyone is denied the first time.
Anyway, the thing I'm most looking forward to, now that it's official, is health insurance coverage, specifically Medicare, which automatically comes with disability. I realize from years of frustration working in a doctor's office that Medicare is not great insurance, but it's way better than nothing; I haven't been able to afford any insurance since about two years after I was diagnosed, because the premiums kept doubling every few months until I was spending over $1,000 every month just for coverage, and I wasn't earning enough to do that.
Unfortunately I spent all my savings, went way into debt (even got way behind with the IRS!) before I finally had to drop my coverage and apply for disability. Which was stupid of me but there you are; hey, I never said I wasn't stupid. But I am trying to get it together.
Aha, but regardless of all that verbiage, WAS a really disabled? Really?
OMG,YES, I was for years before I ever contracted MS, due to progressive spinal problems. But I was too stubborn or too deeply in denial or too something to even apply for disability until long after I really couldn't work at anything, anymore, at all.
And that, as it turns out, was a little late, too late really; I should have faced reality and started the process of application for disability way earlier, a couple of years at least.
But I was used to ignoring (or trying to ignore) physical difficulties, plus I was (and am) quite happy in general, so that helped enable me to endure quite a bit. Not being able to sit upright for long enough to accomplish anything was a challenge to which I was also accustomed, but once I couldn't remember anything anymore either from one minute to the next, once I couldn't multi-task at all anymore, once it took me forever to get anything done correctly, I really couldn't work.
Well, I could have tested mattresses I guess, part time, if there was minimal paperwork and no rush...
Anyway, after I'd used up all my savings on insurance, health care, and life, I saw that I had to have help, ASAP. It was humiliating, but evidently it was what I was meant to go through. I was too old and tired to move into my little Honda Civic with my dogs and panhandle for a living.
But the thing is, I have Medicare now! Plus I'll get a small payment every month to (almost) live on; I'll need a housemate or two to split the rent, but at least I don't have to move into the Civic, so it's all good.
Things are looking up. Now to find a doctor who'll take a new patient on Medicare!
Well first of all, just having a diagnosis of Multiple Sclerosis does not mean you're necessarily disabled, much less win you official status as such. What matters is what's specifically wrong with you.
My disability is mostly due to a pre-existing spinal condition. If it weren't for that, I could do something. In terms of disability, my physical problems are almost all due to my spinal issues, except for my inner ear and balance problems, which came with the MS. (MS also causes me to have chronic urinary retention, but that wouldn't affect my ability to work.) I sometimes need a wheelchair entirely because of my back, not MS; I needed a wheelchair for years before I got MS. Someday I might also need the wheelchair for the MS. You never know.
My ultra-crappy memory and other cognitive problems did come from MS. (I thought at first they were just from aging, and/or extreme sleep deprivation from pain, but it was MS.)
And I am so relieved! I mean, WHEW!! I only got denied (and had to appeal) one time, which is really unusual for someone who never used an attorney. But seriously, when you're really disabled, and by that I mean, obviously, seriously, multiply disabled, there's usually enough undeniable evidence of it, and in my case the Social Security Disability people saw that evidence and agreed relatively quickly in the process that I am indeed truly disabled.
Again, big whew! I really expected to have to appeal at least one more time, so I'm deeply grateful that the system was more humane with me than it sometimes is with applicants. Almost everyone is denied the first time.
Anyway, the thing I'm most looking forward to, now that it's official, is health insurance coverage, specifically Medicare, which automatically comes with disability. I realize from years of frustration working in a doctor's office that Medicare is not great insurance, but it's way better than nothing; I haven't been able to afford any insurance since about two years after I was diagnosed, because the premiums kept doubling every few months until I was spending over $1,000 every month just for coverage, and I wasn't earning enough to do that.
Unfortunately I spent all my savings, went way into debt (even got way behind with the IRS!) before I finally had to drop my coverage and apply for disability. Which was stupid of me but there you are; hey, I never said I wasn't stupid. But I am trying to get it together.
Aha, but regardless of all that verbiage, WAS a really disabled? Really?
OMG,YES, I was for years before I ever contracted MS, due to progressive spinal problems. But I was too stubborn or too deeply in denial or too something to even apply for disability until long after I really couldn't work at anything, anymore, at all.
And that, as it turns out, was a little late, too late really; I should have faced reality and started the process of application for disability way earlier, a couple of years at least.
Well, I could have tested mattresses I guess, part time, if there was minimal paperwork and no rush...
Anyway, after I'd used up all my savings on insurance, health care, and life, I saw that I had to have help, ASAP. It was humiliating, but evidently it was what I was meant to go through. I was too old and tired to move into my little Honda Civic with my dogs and panhandle for a living.
But the thing is, I have Medicare now! Plus I'll get a small payment every month to (almost) live on; I'll need a housemate or two to split the rent, but at least I don't have to move into the Civic, so it's all good.
So what's my supposed disability exactly?
Well first of all, just having a diagnosis of Multiple Sclerosis does not mean you're necessarily disabled, much less win you official status as such. What matters is what's specifically wrong with you.
My disability is mostly due to a pre-existing spinal condition. If it weren't for that, I could do something. In terms of disability, my physical problems are almost all due to my spinal issues, except for my inner ear and balance problems, which came with the MS. (MS also causes me to have chronic urinary retention, but that wouldn't affect my ability to work.) I sometimes need a wheelchair entirely because of my back, not MS; I needed a wheelchair for years before I got MS. Someday I might also need the wheelchair for the MS. You never know.
My ultra-crappy memory and other cognitive problems did come from MS. (I thought at first they were just from aging, and/or extreme sleep deprivation from pain, but it was MS.)
Applying for Disability- About the Process:
I guess most people know that applying for Social Security Disability isn't easy - for one thing, as of now, the Social Security Disability forms seem endless and are very poorly designed; the questions sometimes double back on themselves and can drive you nuts if you aren't already.  |
| (nuts) |
The worst part is that whole process adds insult to injury, and I often felt it was designed to make the applicant give up, which actually worked for awhile in my case- I did give up. But ultimately I had no choice but to start over and hang in there because I really couldn't work. Like I said above, I did finally win disability after only one denial, and without an attorney. It can be done, if you're really disabled, but a further part of the equation in my case was that I was sort of an insider, on the medical side; I'd worked in a doctor's office for many years, so I had the advantage of understanding most of the process a little better than the average applicant. That helped, but it still wasn't easy.
My part of the process
The first thing I did was to look for information on winning disability online, and found relevant forms on many websites of disability advocates and disability attorneys. (Google "applying for disability").I downloaded what I needed from websites like this one; one form for physical disability and a separate one for mental disability (re: my memory issues). These are very, very long, detailed forms, and the way you state your answers is really important. It takes work, hard work, and for years I just wasn't up to it, which was even more depressing. It wasn't my nature or my fate to be depressed, but I felt pretty hopeless next to a huge, cynical institution like the Social Security Administration.
But ultimately I HAD to face it; I'd been living without any health insurance for too long and my savings were long gone. But even then I had to pace myself, spreading out the process of filling out the initial application over several months. I get dizzy and nauseous if I read too much (due to the chronic inner-ear problems).On top of that, I had a badly injured right wrist at the time that was really quite incapacitated for almost a year, and that made it even harder, what with all the writing. (In fact, that's why this blog wasn't updated for so long!)
I needed help, but I also needed help to get the help. HELP!
The hardest part of the application for me, other than just keeping up with it and keeping it organized, was writing the required summary of my disabilities, sort of a major, very personal 'essay question'. At first tedious, it gradually became a thoroughly depressing project, like looking at yourself medically in a full-length mirror when you're not doing well. I worked really hard on that summary, but after countless days and hours, I still didn't like the way it sounded, so I asked my dear friend John for help.  |
| (Friend John) |
John's a non-medical person (actually a minister) but is very smart, incredibly patient, a great listener and a wonderful writer. He did a great job of editing and restating things for me. (Bless his heart, he got WAY too-much-information about me!) But it was wonderful having some help after months of struggling alone; John's editing made the application much more concise and clear, and much less annoying to read I'm sure! Thank you again, John.
The Doctor's Part of the Process
After my part of the application was complete, I took the rest to my doctor. There's a big part for the physician to fill put.
IMPORTANT: You absolutely cannot and should not just send forms to your doctor and expect him/her to take precious time and effort to fill them out; you probably need to make an appointment (it took three different sessions for me!) specifically to get forms filled out.
Your doc's office will still have to provide voluminous records and fill out other, endless forms for you (for which the government provides very inadequate compensation), so be patient. The law allows providers a certain maximum amount of time to respond with requested records and forms, after which they face stiff fines and other bad karma, so they'll do their best. Be ready to assist with dates and other info on your history that's relevant to your application.
Obviously it helps if your doctor knows for sure that you are truly disabled and that you truly cannot possibly hold down a job; I had no problem there because I used to work in my primary care physician's office, and she knew not only my work ethic but saw me struggling harder and harder through the years, taking longer and longer to get less and less done. She kept urging me to apply for disability. Thank you, Dr. Connie.
Your doc needs to know beyond a shadow of a doubt that you're not faking anything, and must never feel pressured to even slightly exaggerate on your behalf, much less actually fake anything. If you're really disabled but don't have a doctor who knows you as well as mine knows me, and believes you as totally as mine believes me, then I guess I'd advise getting a lawyer, who will represent you and will probably steer you to a sympathetic doctor. And I'm really sorry if that does describe your situation, because like I said, it sucks hard enough to be disabled without feeling defensive or disbelieved. Seriously.
I may add more to this later, but for now, that's my story and I hope it's helpful. If you or a loved one is applying for disability, and if you don't have a lawyer, you might check this link (or almost any other disability lawyer's website) for the appropriate disability form(s), and see what you think...are you disabled? Honestly? Then take my advice and apply sooner rather than later for disability, and good luck.
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