CHRONIC TONIC posts on Thursdays at 9 p.m. EST. It is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
After reading the wonderful, inspiring diary by ladypockt last week, (thank you!) I couldn't help but think about my own situation and dealing with the constant, unrelenting task of finding support for my disability. Perhaps I went a bit overboard with the title of this diary, but I felt it's quite apropos during this time in our country.
All my life, I've been around disabled folks. (Growing up in Alaska's icy streets tend to do that to people) Now that I'm disabled myself, I get a slap in the face everyday of what it's like to be disabled in this young, dumb and full of no common sense society that leaves us disabled folk by the wayside>so I became a Pain In the Ass. Three denials, and finally a hearing in front of an administrative judge kinda put an emphasis on me learning how to navigate the SSDI (Social Security Disability Insurance) process through the SSA (Social Security Administration) so others might not have to. If I have to be a PITA to do that, so be it.
To get things started, here’s a link to the Social Security Blue Book, which lists the criteria used in making decisions for disability benefits: http://www.ssa.gov/...
When looking up your disability, be sure to read THOROUGHLY the section which discusses your disability. I glanced over other sections, because I found that some of the symptoms I’m having are listed under other medical conditions, besides Endocrine Disorders. You may be able to receive ‘credit’ for these other symptoms that may show up under these other medical conditions.
NOTE~Even if you have symptoms pertaining to your disability, don’t hesitate to discuss any confusion or memory impairment if there are cognitive issues unrelated to the major source of your disability. Bringing this up while filling out your application is important, so that the SSA can have you tested. When the SSA testing finds that your cognitive issues are present, this can strengthen your case considerably. My fluctuating blood sugars, along with the pain keeping me from getting sleep, has impaired my short term memory as well as leaving me unable to make sound decisions, i.e. remembering to check my blood sugar, giving insulin injections. This is where you get in depth with yourself, so don't be shy. If you are having a hard time, always ask for some help, because the application process can be an anxious time for folks like us.
Shout out to MsGrin for the link and application info when applying through the SSA!
A lil background~I first became a Pain In the Ass writing letters to the editor in various cities that I’ve lived in. A little anti-racism here, some anti-gay bigotry there. I became a Pain In the Ass to the point where folks were following me around with a bible when I would do my morning walks and call me a menace to society. Fast forward to L.A., where I tried to complete a year of law school while my body became a punching bag for stress and repetitive motions that caused my hand to swell up writing notes for class. Fortunately, the swelling of the hand allowed the physical therapist at county health to schedule an EMG exam after 7 months of useless pharma meds and incomplete diagnosis by different county primary physicians.
Ah, an EMG exam. Poking and prodding and helping me learn exactly where my pain in the neck is stemming from. Nerve irritation on the C7, C8 portion of the spine resulting from chronic conditions. However, a doctor never followed up with me to discuss this result, they just prescribed ibuprofen, muscle relaxant and physical therapy that wasn‘t working, only exacerbating the pain. Nobody even bothered to look at the copies of medical records I brought, which listed all my issues in medical terms, so I continued to trudge along trying to survive.
Then my blood sugars started acting wacky and I was developing pain in spots I never even knew I had. Oh, and numbness in my fingers and sometimes whole hand. Tingling all over the body, and a continuous burning, throbbing pain that never goes away starting from my neck, going down the right side of my spine, through the bottom of my right foot one way, as well as through my right shoulder, down through to my fingertips. Like the fork in the road where pain takes both roads. My right side is tight, the left, not so tight. Now, I’m itching all over my body, even the top of my head. And I have yet to hear about the hemangioma on my lower spine. Oy vey! (I was taught by a doctor the expression is the Jewish oath of whoa)
This is where I'll highlight how I started learning about benefits. I filled out all the forms I could find doing research online. I had to fill out and have others help me fill out Social Security disability forms, MediCal forms, food stamp forms and General Relief forms. Since I was denied right away by SSDI, I had these other programs to fall back on. I was supposed to have an expedited processing of my food stamp forms, but was being hung up for reasons I still don't know.
Fortunately, or unfortunately, I wasn’t able to work anymore and had to go through the long road of continuing to apply for food stamps, being a type 1 diabetic and all. Which leads me to why I had to get in touch with the patient advocate department of county health. I was required, by law, to get a certain form filled out by my physician, which would allow me to qualify for food stamps. Needless to say, I never got the required form filled out in time due to the county docs ‘not having time to look it over‘.
The letters I wrote to the patient advocates at county health as well as the health and human services department finally paid off 2 years later>I received my EBT card with a large balance of food stamps because my paperwork hadn't been processed properly. I would’ve gotten retroactive General Relief benefits as well, but I had to go through the county division, instead of state, to get the retroactive settlement.
General Relief is given to those who don’t qualify for other public funds or assistance programs and can’t work. "Each county's General Relief program is funded by its own Board of Supervisors". The state is not involved in this program. California baby! http://www.dss.cahwnet.gov/...
Talk about THEM being a Pain In the Ass. I didn’t pursue General Relief because I felt there were those who needed the General Relief more than I did, plus, I was lucky to have a good network of support to carry me through. However, I did qualify for a few months of General Relief right before I won my SSDI case, which was kind of weird. Good timing though, because my network of support fell on hard times.
When I did finally receive my SSDI benefits, (3 years after I first applied), I paid back the money the General Relief fund had given me when I was temporarily disabled. I won’t even talk about that process. Imagine trying to explain to the physicians that no matter what I try, my symptoms continue to worsen...
I used to carry my contracts and torts books to my medical visits while surviving in the waiting room of county health. (I’m in L.A., so yes, it’s L.A. county health) Who would’ve thought I’d get so many questions from other patients waiting? Btw, next time you’re waiting in the waiting room, see how quickly you get seen if they see you reading a book that says CONTRACTS or TORTS. Crunchtime editions work best, since that’s used right before bar exams. Can you say Pain In the Ass? Before I forget, I did have a hair brain idea of having the waiting patients form their own advocacy group while waiting to be seen. ;-) (I swear, folks have waited 8 hours for an appointment!) Now that I'm disabled, I switched to UCLA Health Systems. Another diary all together.
Minor relief~I found that once I started paying visits to the medical records department and getting copies of doctor’s notes, I had helpful info to fall back on if I keep getting the run around. The copies of medical records help me fend for myself when I continue to deal with doctors who feel like they need to do the whole ’start from scratch’ diagnosis over and over again. I remind them what’s been done already, results they’ve overlooked and notes from other specialists they seem to never receive. And this is why I write, because I am sick and tired of being given the runaround simply because there are no doctors who can take the time to follow up on their patients.
Nobody should have to go through the obstacle course of getting proper health care for their disabilities, nor should they have to be a Navy Seal just to get their disability benefits, much less, food stamps and/or General Relief.
Any of you who have been denied disability benefits should ASK TO SEE COPIES OF ALL DOCUMENTATION PERTAINING TO YOUR CASE so that you can see exactly how your decision was made. Also, don’t forget to peruse through the SSA Blue Book link MsGrin passed along, to cross check the copies you’ve received from SSA regarding your case.
Hindsight says if I would’ve done any of the tips MsGrin provided, I wouldn’t have had to hire a disability attorney, who took 15% of my retroactive benefits. Thankfully I was able to find an attorney who’s an alumni from the law school I’m trying to finish, so I think of it as a meant to be situation>I didn’t mind that my benefits were used for a People’s attorney.
To top it off~A neighbor was recently denied SSDI benefits because they felt she could work. The jobs they listed>Tube Operator and Microfiche Operator. My neighbor has a Master’s degree and was an administrator for a non-profit organization. Was also going to school in New York during 9/11 and breathed in the smoke for months. Why do you think she was denied? Who knows, but we continue to fight for benefits we pitched our paychecks into.
Nevertheless, I lost faith in the whole benefits application process (SSA included) and the continued shenanigans by the government to limit what is rightfully ours. I never understood why SSA doesn’t hire those who can help them make the application process more efficient AND accurate. (you guessed it, the disabled folks!) Guess they only want Tube and Microfiche Operators, so that's why I continue to be a PITA. :-)
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