Dealing With SSDI: My Experience & The Waiting Game Continues
Why Do We Have To FIGHT For What Is Ours To Begin With...
Back in early 2014, when I was working part-time for a large electrical supply distributor in the commercial quotes department, I had applied for SS Disability Insurance; but by the time they got to my case file, I had started working full-time, so I was immediately disqualified.
Then in October 2015, I had what is known as a drop fall attack and had somehow fractured my femur. I started short term disability through work because I needed the fracture to heal. OK... So I took four of the allowed twelve weeks of short term disability through my employer before we (Mr Golden D and I) discussed the possibility of me just staying home. My episodes of my auto-immune disease (Meniere's Disease) began coming more frequent, and more violent at times.
What are drop fall attacks? The American Hearing organization website explains it best:
Drop attacks are sudden spontaneous falls while standing or walking, with complete recovery in seconds or minutes. There is usually no recognized loss of consciousness, and the event is remembered. It is a symptom, not a diagnosis, and it can have diverse causes.
Yeah... not a good time at all. This was the first drop fall attack I had, but not the last. Luckily none of the others resulted in any more broken bones; only bruises and some discomfort.
What Is Meniere's Disease?
The National Institute On Deafness And Other Communications Disorders Website defines MD as:
Ménière’s disease is a disorder of the inner ear that causes severe dizziness (vertigo), ringing in the ears (tinnitus), hearing loss, and a feeling of fullness or congestion in the ear. Ménière’s disease usually affects only one ear.
Attacks of dizziness may come on suddenly or after a short period of tinnitus or muffled hearing. Some people will have single attacks of dizziness separated by long periods of time. Others may experience many attacks closer together over a number of days. Some people with Ménière’s disease have vertigo so extreme that they lose their balance and fall. These episodes are called “drop attacks.”
Ménière’s disease can develop at any age, but it is more likely to happen to adults between 40 and 60 years of age. The National Institute on Deafness and Other Communication Disorders (NIDCD) estimates that approximately 615,000 individuals in the United States are currently diagnosed with Ménière’s disease and that 45,500 cases are newly diagnosed each year.
While most people are effected by MD in one ear, I am an (un)lucky person who has it in both ears; known as being bilateral. Yeah, if only I could be so lucky in playing the lottery and picking the six lucky numbers!
My hearing loss is measured in decibels. In my right ear my decibel number is 87; which is considered legally deaf, while my left ear is measuring in at 62 decibels; not legally deaf but classified as severe hearing loss. One day I know I will be declared legally deaf and lose most of my independence including driving, using a regular cell phone and much more. I like to think I am prepared for it, but you never know how prepared, or unprepared, you are until it actually happens.
A hearing aid? Yeah... I've tried it. All it does is intensify the background noise and causes me more confusion and aggravation.
My SSDI Time Line
- May 2014- First applied for SSDI
- September 2014- Started working full-time
- November 2014- Denied SSDI benefits
- October 2015- Fractured femur
- December 2015- officially removed from work and began accepting short term disability
- January 2017- Re-applied for SSDI
- May 2017- Denied
- June 2017- Filed appeal
- May 2018- FINALLY had appeal court date
After driving over an hour to the office in a Metro Detroit neighborhood, my nerves were on high alert. I am susceptible to panic attacks when being in a public places, especially when loud, lots of lights and tremendous background noises; these things can trigger an episode in me; hence why I am a homebody and don't like leaving the homestead.
When I go grocery shopping, I go as soon as the store opens at 6am to avoid crowds and loud noises, we stopped attending church services because the music, people and commotion cause me anxiety and doing errands is something I dread and try to plan ALL my errands for one day a week. Mr Golden D knows this and is very attentive to driving me and helping when he can.
Good Days, Bad Days & Lost Days
My determination of receiving SSDI benefits is still not known. I have to send the adjudication office some more paperwork and prescription information.
A vocational advocate and therapist (whom I had never met with, heard of or known about) was there to speak about my illness and how it affects me. Really? You've never met me. You've never spend a minute with me, let alone a week with me to see how this auto-immune disease causes me lack of life and fulfillment.
Sure she can speak about the symptoms, but can she really say she knows what I am going through. Does she see how one episode causes me to lose anywhere from one to four days of my life at a time?
So I went into this court appeal with an attitude towards this woman; yeah, I know, not fair... but I was reeling from having someone speak on my behalf who was clueless. Not all auto-immune diseases are the same or effect everyone the same way. So my attitude was HIGH.
All I kept thinking was:
- Why did I have to appeal this denial decision? I had been working most of my life. From the time I was nine years old and had two paper routes. I started working in a pharmacy and discount store when I was fourteen. I had put money into the SS system since 1982 when I received my first legitimate paycheck. This is MY money I paid, who are these people to say I cannot have it when I am disabled?
- Why do these people in the courtroom appear to be looking down upon me? As if I were trying to scam them?
Well the vocational advocate stated on the record:
- Yes she (me) would be able to work at any of her previous jobs... with some hearing aid(s) assistance; whether the employer provides hearing-aided telephones.
- No, she(me) could not perform well enough for an employer to hire her knowing she would miss anywhere from 3-6 days minimum a month from her assigned/hired position.
- No she (me) could not perform office duties as in her previous job descriptions on a daily basis without error; which could potentially lead to being considered unemployable.
Hmmm... so if my employer would invest in either an amplified phone system or closed captioned phone system to accommodate a new hire? I just don't see that happening.
Every time the judge/magistrate asked me a question, I began my answer with the words... "It depends on the day..." or "If it's a good day then..." and finally "on a bad day...".
I wanted to stress that not every day is the same as the last.
So today I have some phone calls to make, papers to print off for my prescription and medications' history, then I can mail the information to the office. Then I will sit and wait... and wait.
No, I had no legal representation. I was there alone (well, Mr Golden D sat behind me for support but never testified) and I had to sign a waiver stating that I had turned down the offer for a lawyer. Sorry, but I am entitled to this benefit and do NOT feel I should have to pay an attorney a percentage of money I paid into the system. Isn't that sad? No... I represent myself because no one knows me best other than myself or Mr Golden D.
Note to anyone who receives or is about to receive benefits, if you get (SSI or SSDI) and/or HUD and you get SNAP. If for any reason, like say a $15 cost of living increase, one of your benefits increases your SNAP will drop a corresponding amount. I do not know if this is universally true, but I have been told it is so by several people. If while receiving SNAP you are awarded SSI or another benefit your SNAP will be reduced dramatically.
@goldendawne I believe you may be fortunate to have MD as opposed to some of the less obvious ailments. Women especially are often diagnosed as being healthy when they are not. "It's all in your mind, Dear." Please rest assured I am not that kind of doctor.
You really can trust me, even though I'm a doctor.
I still do hear this from time to time... sad thing is until someone has had an illness like this they have no idea what the person is going through.
I'm not sure how receiving SSDI would effect other programs or assistance in my state; but I do know you are allowed to make a certain amount of money if you work a part time job, etc before you would start losing money of your monthly SSDI.
Have you seen the ad where the actor says something like "I know what it's like to have diabetes pain. My Dad has diabetes." What? I have diabetes and at its worst I suffered excruciating pain if a cat touched my shin. This guy knows what that feels like, does he?
I'm not asking for sympathy. First, it was probably my own fault, and secondly, with my wife's help, I have it mostly under control. But that ad infuriated me. I found it insulting, highly offensive.
Crystals in your ears sounds horrible. How horrible? How would I know, I've never had it. All I can say is, I'm glad I don't have it and I'm sorry you do.
Trust me, I'm a doctor.
Yes I have seen that commercial; I believe it's with Cedric the Entertainer...and I agree. Until you've walked in a person's shoes, you have no idea. I someone who has Multiple Sclerosis... not always visible symptoms but I can remember MANY days that were bad for her. She used to call it an MS Fog Day.
I also know people who suffer from diabetes (my aunt was one) and I never knew what she was going through or how the physical pains effected her. But I could, and still do, sympathize with her; as well as others.
I can still remember my first bad episode. Hubby was at work and all of a sudden the room started spinning- reminded me of when you have had too much to drink and you get the proverbial bed spins. I had no control over it and it scared me beyond words. Luckily I was at home.. but I was alone. I panicked.
Ended up at the ER at the hospital... CATScan was done... more tests and they had me so doped up on Antivert and other meds I don't even remember going down to have the CATScan done. No memory at all of the test. It was about three weeks later after going to the ENT specialist for more tests (a VNG- weird test that puts you into vertigo and tests your visual reaction to the vertigo) and some audio and hearing tests plus an MRI of the inner ear that the diagnosis was made.
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The system is seriously broken! I sympathize completely @goldendawne. They're hell to deal with. I put in for early retirement, hitting 62 in a couple of weeks, and I wanted to be sure I was getting my money that, like you, I've been paying in to since a teenager. They want to hoard it like it's theirs. So unfair. I wish you nothing but the best.
Isn't that the truth!!!
No one ever said life was fair.. but it's really sad you have to almost fight for what is rightfully yours.
So sorry you are dealing with this! How incredibly frustrating and unfair...
Yes it has been very frustrating... and takes such a long time to get things in order and approved.
oh man @goldendawne my heart goes out to you. I will definitely be praying for you and that your rightfully earned compensation comes through. I assume they have a system set up to weed out the scammers which forces everyone to go through the same hoops of proof. But it seems like a doctors report would suffice.
Nevertheless you are a fighter and with God on your side nothing is impossible... in fact when it looks impossible is when we have seen Him come thru totally.
what does this mean ? "one episode causes me to lose anywhere from one to four days of my life at a time?"
can you say what happens when you have an episode because I don't quite understand it.
also about the hearing, what about Cochlear implants at some point?
God bless you girl!
The vertigo is so bad that I have to take medications (Antivert and Zofran) which both make me tired to begin with, but the episode consists of (on top of the vertigo) severe fatigue, double vision/blurry vision, tremendous pressure in both my ears, a full feeling in my head and ears (compare it to a really bad sinus infection and headache), nausea/vomiting and the ringing in my ears intensifies more than you can imagine. You know how people have the radio or TV on for background noise or listen to white noise when trying to sleep.. well the tinnitus in my ears is constant- it never goes away.
Cochlear implants won't do anything. I have crystallization built up in my inner ears and whenever the crystals move, shift etc is when the episodes come on. Sometimes i know what will trigger it. other times it just happens.
I could have endolymphatic sac shunt surgery but that only eases the vertigo if the surgery is a success. My hearing being restored wouldn't occur.
I am considering having monthly injections (only allowed three per year according to our insurance) of gentamicin which is injected directly into the eardrum for the vertigo.. but real hesitant. I am NOT a fan of needles and the ear is such a sensitive area. Still debating the procedure.
Most surgeries are for vertigo and to maybe (a big maybe) break up the crystals but like an other auto-immune disease or disorder there is no fool-proof cure. The crystals will keep forming and coming back.
thank you so much @goldendawne for the explanation...I've never heard of such a complex problem with seemingly no answers. And I'm sure you've researched holistic medicine options? God bless you girl I'm praying for you.
We have seen so many people touched by God and healed of everything you can imagine so there is always hope.
Thanks for sharing about this. I had a Meniere's episode that dropped me to the ground. I have not had any problems for the last 2 years, but I feel a constant pressure in my ears.
I appreciated the balance of facts and life stories that you shared in this post. Hope you can get this issue resolved.
Yeah.. that first drop fall scared the heck out of me. I didn't know what happened. I was standing in the bedroom one second and the next... I was on the floor. Freaked my husband out.
I have heard of people going into remission with meniere's... I still hope someday I will be one of them. But I've noticed in the last few years the episodes have gotten worse and more frequent.
Blessings to you in the hopes you remain episode free!
We can so relate to all you are going through. My husband and I both have good days and bad days. There's no way either of us could hold down a job as usually at least 2 days are spent each week recovering from whatever we did on the other days. Or from the weather (that really hits my husband hard), or just because the Lyme decided it would be a good day to act up.
As I was a stay at home mom, I didn't have the 40 consecutive months of employment, so they would not even talk to me. So I've never had disability income.
My husband applied over 5 years ago to the VA for disability benefits as he's in end stage liver disease. We finally got an appeal last Sept. They said due to his health, they would expedite the case. Nothing so far...
When he went out on SSDI in 1998, his case was approved immediately due to his health. It's never been reviewed, probably for the same reason. So his SSDI is what we live on, waiting for the VA to expedite the case...
I do hope you have better luck than we've had and hear relatively quickly.
OMGosh! That's terrible!
I have heard some real atrocious stories about the VA and their turn around time for approval, appointments, etc...but my goodness; that is just awful for you.
Lyme disease is a debiltating disease. I send you prayers.... like my disease... no cure. Only treatments to subside the symptoms. And like you and the Lyme disease... any given day could be good or bad. SO when I have a good day, I try to take advantage because tomorrow and the next day may be bad ones.
My husband always tells me (well,nags sometimes) when I am bouncing around doing chores until bedtime... and I tell him.. "it's a good day, let me do this cause tomorrow is another day."
Yup, sometimes my husband will tell me, "What are you trying to do, kill yourself?" because I am out working as hard as I can when I can. Those times are planned crashes and burns. It's usually right before a rainy day, when I can sleep all day.
Yes, your disease and mine have a lot of similar symptoms, but namely the exhaustion and never knowing minute to minute how you will be.
My treatment for the Lyme has been growing the very best, most highly nutritious food I can. Each year I am a tiny bit better than the year before. Some things, like the lost memory and neurological damage, will never improve. As you say, no cure.
It's always an unnecessary wait for these things to sort themselves out. My brother in law was hit by a car whilst on a moter cycle, and it was clearly the car's fault. However, due to the fact the driver was drunk, his insurance refused to pay. So, long story short, it took about 5 years to finally get compensation.... So, pretty much on the order of what you have. On the plus side, he met his now wife whilst in hospital....
How sad! It is amazing how much people have to fight for what is rightfully theirs.
SO GLAD your BIL is better and that he met his wife!
Wow! Great work goldendawne! Your post has appeared on the hot page after 33min with 106 votes.
Thanks to @souldelas.
Shame to hear you've had such a struggle to obtain help. I know we should thank our NHS greatly, but that has it owns problems.
It must be infurating to explain it to someone who is not yourself and expect them to understand.
I hope you get the support from the SSSI eventually.
I have hear of Menieres Disease, how it affects the fluid in the inner ear and causes vertigo, imbalance and stress with certain noises.
I hope the disability claim is allowed as you certainly cannot work with your symptoms.
Sending healing vibes to help. ❤️
Thank you for your kind words and positive vibes.
I had never heard of the disease until I was diagnosed with it; but after learning more about it, I started thinking back into my past and all the times I had this or that and connecting the dots to other symptoms that lead me to believe I've had this for decades and never knew it until the vertigo and episodes reared their ugly heads.