Social Security Disability from Hopeful Recipient Viewpoint

I am a 40 year old wife and mother who had a brain tumor removed in 2010 and have been stuck in one of the most aggravating systems known to man since then. This blog will be about some of the things I have encountered and the absurdity of the entire situation. While some of the things will seem simply too ridiculous to believe, I assure you they are all 100% true.

I never wanted to be on disability. I still don't want to be on disability, but at a certain point reality takes hold and one must listen to the multiple doctors, therapists, and those who love them. That is what I did. Still, I must say that the process has been in many ways worse than the multiple diagnosis's I have to contend with on a daily basis. At least in some strange way they make sense.

In order to remove the cancerous tumor from my brain I underwent a full craniotomy. This process involved the doctor shaving my head, cutting a question mark incision into my scalp, taking a saw and cutting a part of my skull free that was removed, after which he cut two inches into the "grey matter" of my brain at my right temporal lobe, and removed a golf ball portion of my right temporal lobe prior to replacing the part of my skull that had been removed and closing up the incision with 39 staples.

Upon waking up I was heavily medicated for two years and denied my need for hep. After two years, running two companies into the ground before they could start, racking up $25,000 on a credit card that to this day I have no idea what I spent it on, and my marriage taking a major hit, I finally conceded and went in for therapy.

It took me over two more years to accept the ramifications of the surgery and what I was left with compared to who I was before. After many many counseling sessions, multiple doctors, more embarrassing blow ups than I care to admit I came to the understanding that their diagnosis were correct. I am a 40 year old woman who has a degree in Sports Medicine a minor in Exercise Physiology yet I can't remember what I did yesterday, I often forget to bathe, my anxiety has taken me to places that I scratch myself until I bleed, and blow up at those who most want to help me.

I am left with a shell of a life that I once knew and medical bills that will prevent me from ever coming out of this hole that I have dug for my family. Dementia, Amnesia, Post Traumatic Stress Disorder, Insomnia, Anxiety, and Panic Attacks are who I am now. If I am being honest there are days that I wish I had not woken up from the surgery. This life is not the life I chose, wanted, or would have ever imagined for myself. Yet, here I am...

There are many who think that disability is a cash cow and that people on it are living the life. Here are the pros and cons from someone going through it.

Pros: There are some financial benefits from Disability. The reality is that they are greatly varying depending on what you did before in your life. In my case, the cash that I will receive if or when I am approved will amount to less than my rent. I don't live in a great place, I have a very very small apartment and my bills total $1,500 a month not including food. The medical coverage is the most important part to someone in my situation. I need to have MRIs every year for the rest of my life, two counseling sessions a month, primary care physicians must see me four times a year to schedule my specialists, sleep medication is $500 per month, and that is all assuming that nothing is found.

Cons: If you are in the situation the major con is that you are in the situation. "Winning disability" is not a win. You understand that you are messed up beyond anything that anyone would want to hire and you are in a place that you are absolutely 110% stuck. Once you are approved for disability you can never make more than $1,130 per month or you will lose your wonderful status of disabled and the pros listed above. In my case, it is a no win no matter what. If I win, I will get roughly $800-1000 per month. I will lose some of my food assistance from the state so my bills will increase to $2,000 per month. I cannot do even odd jobs and make more than the $1,130 which is under what I will need per month. I will forever be dependent on my husband or others to help me make up the difference. If I make enough to pay for living, I will lose my medical coverage and the only option I have is to not be checked.

This is the

Once the decision to apply has been made the trauma of the application process begins. For me the process of applying has been more traumatic than the diagnoses in many many ways. I am sure this is not the case for everyone, but it is for many many people who apply. I must say, this was not something I was expecting. I thought that when I applied I was applying for help from a group that was supposed to help people like me.

My first experience applying was abruptly cut short when the woman at the Social Security office took my information. Granted at that time there was very very little data, I had just come out of surgery and really did not understand the issues I was going to have to deal with. The woman took my information and said, "You know if you apply and you are lying then it is fraud and you can go to jail and we will take your daughter from you." That was all it took for me to walk out of the office and not follow up on it. I desperately wanted to believe I was really OK and that I could be a productive member of society.

Fast forward three years and things were substantially different. I had attempted to open a couple of businesses with my husband, ran them both into the ground before they even started and then from there almost lost my husband. I started therapy and was struggling to find a way to be productive but could not do it. I followed my counselor's advice and decided to reapply. My husband wanted me to find an attorney which I did, but my records were not fully in order. This was when we found that Doctors don't always document everything and they short hand many things. Making sure that things are documented clearly is your responsibility and if you are like me and have a mental disability this will be excruciating to read through but you must. When things are wrong you will need to make sure that they are corrected before you file because SSDI will look for anything that says you are OK and not as bad as they are.

This application took a year to be denied and another year for the second denial. Once that was complete my attorney told me that we needed to go to trial. This is one of the worst mistakes I made in the process. Once you go to trial if the judge denies you you lose ALL benefits from the date of the disability onset to that date. In my case four years. If you get to the point of trial do research on your judge. In my case the judge had the 9th highest denial rate in the nation. There is NO way I should have attempted to get my case tried by her. Another fun fact is that if you are denied by the trial judge you can file a federal appeal, but it costs $450 and if you win, you will go back to the judge that denied you.

We decided that before we filed again we were going to get much better documentation. This started literally two days after my denial when I finally found a psychologist who accurately diagnosed me. At the same time I was having some other major complications and finally found a primary care physician who took the time to actually review my case and saw what the others had not since they did not see me, their physician aides were doing all the work. This doctor was and is adamant that he will not see me without Jason present. My psychiatrist left the practice and we found another one who also agreed with my previous diagnoses. We took a year to have consistent documentation of my situations and diagnoses, thinking that when we applied the next time having three medical doctors with the same diagnoses (and lots of them) it would help.

Keep in mind that you are working with a government run program and things simply don't make any sense at all. If you enter your application like I did you will go through the same road I have which is beyond words frustrating. If you are at a place where you have finally reached out for help let me assure you the disability office will not be the place it will come quickly if at all.

In my case I thought that having three doctors and two years of documentation that things would be fairly simple. This was simply not the case. Personally I attempted to get to multiple doctors but since I could not work I was on government aid, and let me say I am VERY VERY grateful for the help we have received there, but the doctors are overwhelmed and not many specialists take government funded aid. There were literally no doctors who specialize on dementia that would see me to further solidify my case. I have three doctors but no specialists which is held against me.

I did call the government and asked if there was any way I could get in to see any of them and was told there were a couple of things that I could do that would allow me to get straight medicaid which would allow me to get into the specialists. One: I could get a divorce. If I was single I could get better coverage, but because my husband did not leave me I could not. Two: If I was not a citizen I could get coverage because different regulations are used in that case. Or three: I could get pregnant. This was not an option because of the damage done when I had the surgery and if I did get pregnant and a single cancer cell was left my tumor would regrow. Not to mention I have enough trouble handling myself the absolute last thing I need to do is bring in another human being into this crazy life.

Please keep in mind that this is a process that will have to be followed in order for you to get approved. It is not something I am writing to scare anyone, but rather hopefully prepare you for the wonderful crazy world of social security. Welcome to your new normal!

When this is all said and done there is a light at the end of the tunnel. The process is long and hard but as you make it through you will find things out about yourself that you never knew. The things that bring you to the point of needing disability are the same things that will eventually help you find who you are in life. It may not be the life you expected, or wanted, but it is the life you have. You will have to find a way to make it through and find humor in the insane things that come your way. Social Security will give you so many things are beyond absurd that you must find a way to laugh.

I have so many well documented issues that you would think it would be easy, but nothing with the government is easy. Nothing is fun, and the trauma will be something that you can handle. Maybe, just maybe, if you know you are not alone it can give you something to laugh at. Please feel free to leave your stories below!