Disability......Has almost become a dirty world for those who are trying to gain disability due to some life altering condition and have been denied. Filing for disability is a long and arduous process at best. Millions of people apply for disability every year in the United States and according to the Social Security Administration current-payment status accounted for over 4.6 percent of the population aged 18–64 in the United States. (2) Which may sound like a fair amount but if you look at the number of people who are dealing with life altering conditions every day of their lives that number is really not that high. For some disability is considered a hot button topic because many feel that people are using their health to live off the government, rather than just getting a job. But I can tell you that there is a LARGE chunk of people on disability who would give absolutely anything to be able to go back to our life before disability! Myself being on of them. I would give my right arm if it meant I could go back to working full time as a nurse in the hospital setting.
Lets take a moment and look at some numbers to put some things in perspectivev. In 2017 there were 325,145,963 people in the United States. Of those people it was estimated that 126,000 have end stage kidney disease. 1.5 Million Americans have Lupus, about 1.37 million have Rheumatoid Arthritis, around 507,000 have Multiple Sclerosis, approximately 649,000 have Parkinson’s and nearly 558,000 people die of cancer annually in the US alone. Anxiety affects approximately 6.8 million Americans, while depression is believed to affect 16.1 million Americans. And in the United States alone nearly FIFTY MILLION people deal with some kind of chronic pain on a daily basis, with at least TWENTY MILLION of those Americans experienced high-impact chronic pain, defined as "limiting life or work activities on most days or every day in the past 6 months." (1)
You may be asking why I am sharing those numbers with you. Well, to be honest, I want you to see just how many people are suffering with life altering conditions. And by life altering i mean a condition that will forever change the trejectory of a person life. Above I only listed a VERY SMALL number of the life altering conditions that we as Americans may be dealing with. Truthfully, just about any disorder can be life altering to the point that you are no longer able to work. And when filing for disability that is all that you have to prove. You have to prove that what ever medical conditions you have is preventing you from completing a day of work. As well as a modified day of work. You have to essentially prove that because of your illness you can no longer work in any capacity. If that can’t not be proved and they feel that you can do so some kind of work you will NOT be approved for disability. As disability is defined as a physical or mental condition that limits a person's movements, senses, or activities.
Now that we have talked a little about what disability is and small bit about what you have to prove to be approved for disability I want to share my story. It’s nothing out of the orodinary. And that is exactly why I want to share it. I want anyone who is going to be applying in the future to know what they may have to be looking forward to. What they may be up against. While I felt I had a pretty “slam dunk” case if you will, with my initial filing I was shown that was not the case. And I had to wait for what seemed like forever, just like most everyone else. So let’s jump into my story.
Let me give you a quick history. I was diagnosed with Lupus and Fibromyalgia in 2012. Interstitial Cystitis and Endometriosis In 2011. The Hemiplegic migraines started in March of 2016 even those I have had migraines since I was a teenage and the Adrenal Insufficiency secondary to long term steroid use was also diagnosed in March of 2016. Fast forward to July 2016 I went to Mayo Clinic to see a team of doctors about my overall health. We saw just about every specially doctor possible. We mainly wanted to address the fact that I had been dealing with a migraine everyday since Feb of that year. And no, I don’t mean a migraine here and there. It was every day for EIGHT months before it finally broke. I puked every day. And had several Hemiplegic migraines which put me in the hospital during that time. I was also in a constant lupus flare and my Adrenal Glands were no longer working either. My blood pressure was consistently in the 70s-80s/30s-40s and it was not uncommon for me to nearly pass out when I stood up. That being said the last day I was there there my final dr at Mayo was a straight shooter, she told me “Amber, if you don’t take at least six months off of work, you are going to work yourself into the ground!” So I came home and I quit my job at the hospital I had been employed at for 11 years. I had been employed for 11 years. But let’s be honest I really hadn’t worked most of 2016. I had spent more time out on FMLA then I had actually working. So it was no surprise to my boss or coworkers when I quit. Once I quit I applied for short term disability through my former employer. Which I would end up fighting for over the next six months, and would eventually end up being denied because they found NO reason for which I would be unable to work!
At that point it was now October 2016 and I had been out of work about 8 weeks woth no income. And had been denied several times by my short term disability company. So I decide to apply for Social Security Disability Insurance. I went online an found out what I would need to apply. I gathered all my medical records, I got letters from my doctors, I got letters from my close friends and family and I filled out pages and pages pages of the required forms. I can’t even tell you how many pages I sent in when I filed my official packet. I thought that I had a pretty good chance. At this time I also applied for Medicaid because I had no income and was denied on the grounds that I had no child in the house. Even though I filed under the medical disability. Sadly SEVEN, yes SEVEN short days after I mailed in my huge packet of documents for disability I received my denial. Based solely on the time frame I knew that there was absolutely NO WAY that anyone even looked at my file. There is no way they could have in that time frame. I was devastated. But truthfully not totally surprised.
I regrouped and decided I would file an appeal. I did my research and found a lawyer in my area that I felt suited me best and made an appointment. On the day of the appointment I took my father with me and we went and met with a lawyer at the practice and they agreed to take on my case. At that meeting we basically went over my health, and what I could expect the next months and years to look like. They also informed me of what they expected from me. We signed the papers saying that they would be my representation and that I wanted to file the appeal and I went on my way.
Over the next 23 months I document every doctors visit, therapist appointment, Physical Therapy appointment, ER visit and hospital stay I had. I also document my pain level EVERY SINGLE DAY. I kept a journal everyday of how high my pain was and how low my pain was, where my pain was located, if I had a headache, and what methods I used to relieve the pain. So things like heat, or a hot bath or a massage or ice. I documented it all. I also made sure that I kept every single appt during that time. I also made sure during that time that I made sure the doctors were aware that I was in the appeal process. I also made sure that they were aware of and document the parts of my conditions that are debilitating. For instances I am still unable to sit or stand for longer than 10-15 min without severe pain. I can’t look at a computer or screen for more that 15-30 min without developing a headache. I can’t be under fluorescent lights at all without developing a headache. Most days my blood pressure is still remaining low and will drop into the 70s when I change positions. By making sure they were aware and documenting that I was helping my own case. I was advocating for myself in the long run.
I could write forever about the things I did to advocate for myself as I was waiting for my disability hearing. But I don’t want to bore you. Finally in March of 2018 I received a letter stating that I would have a hearing with a judge in June of 2018. I was thrilled. It had been 19 months since I filed my appeal. Once I got that letter from the Social Security Administration it wasn’t long before my attorneys office called me. We set an appointment for to talk about what would happen at the hearing. Finally I had my hearing on June 12th, 2018. At the time of my hearing I was told I set a new record, I had EIGHT THOUSAND PAGES of medical records. During the hearing the Judge asked me about my conditions and how the affected me, and if I could work. He asked me many questions about each eapecif condition. Along with several other questions about how the condition affected my ability to work. After he had asked me all the questions he felt he needed to, he listed off all my limitations and asked the occupational expert in room if there were any jobs I could do, to which she responded, NO! After spending about 45 minutes in the courtroom the judge said I would receive a letter in the mail and told me I was dismissed. The judge gave me no sense of whether I was approved or not, but when we left the room and entered the conference room my attorney said “Congratulations, you won!” And I Bawled! I couldn’t believe it I was still a little shocked and didn’t really understand. But she said based on the questions he asked and the answers that the occupational expert who was in the room gave the judge, my attorney knew I’d won. But then came the longest months of my life. Even though she said I had won I had to wait for an official letter from the SSA. The official approval letter FINALLY came in late October 2018, 2 full years since I filed the first time.
With that letter I finally got what I had been waiting for, for two years. A pay check. And more than that really. A confirmation of sorts. Proof that i wasn’t making it up. I really was unable to work. It was a weird feeling, I was happy and sad at the same time. I finally had an income and would no longer be dirt poor and would no longer have to wonder how I would pay my bills. But it also meant my career was really over. All the years I spent working so hard to become the nurse I became were for nothing. The education I got was for nothing. It was definitely an odd feeling. One I can never explain to someone who hasn’t been there. I do still hold out hope that I will be able to go back to work one day.
I received my first monthly check in November of 2018 and I am so grateful that they back dated my disability to July of 2016 (the last time I worked full time) so I will be receiving back pay. I don’t know when I will receive that but I am just thankful to be getting a monthly check! The attorney fee will come out of my back pay. Which for me is fine because it’s money without them I would have never had in the first place. So it’s not like they are taking money directly out of my pocket.
So that’s my story! Now I want to give some tips to any of you who might be filing or who are waiting for your hearing!
- Be your biggest advocate. No one else will ever stand up for you the way you can.
-Don’t hire the first attorney you meet or see in the phone book. Meet with a couple at least, and hire the one that you get along with best. The one who you feel will fight for you!! Not the one who just cares about getting his cut.
- Always make sure your doctors know how bad you are feeling and how bad your disease activity is!
- Keep good notes! Make sure you keep your own notes on drs visits. Why you went and what the outcome was.
-get copies of every single dr visit, therapist visit, testing, ER visit, and hospital stay for your own records.
-keep a record of your medications. Why you are taking them, how often you take them and how they make you feel. Or any side effects
- keep a record of your pain daily. The high and the low as well as what you did to treat it medicine wise as well as non medicine wise. Like heat, cream, shower, massage etc,
- I encourage you to alway take someone with you to any appointment, whether it be dr or lawyer. That way you can make sure you get your questions answered and that you totally understand what is said
- It is usually not necessary to use an attorney on the initial filing. But I would definitely recommend using one if you are appealing a denial!
- make a list of things you want to talk to the dr or lawyer about when you are going in. So you don’t forget.
- make sure when you are filing your paperwork and it asks for your conditions that you include EVERY SINGLE MEDICAL CONDITION that you have. Leaving any off could lead to your claim being denied.
- Look put together, but DO NOT wear a lot of makeup or spend a lot of time on your hair because that will contraindicate you saying you can’t do things.
- make a list of your conditions in order of most impactful to least impactful of your work and life. And have it ready should the judge ask.
- If you say you can’t sit for long periods of time without readjusting or standing. DO THAT. Readjust and stand. Just like you say you have to.
- It is okay if you forget things or stutter over your words, they understand.
- Tears are also understood.
I hope my story as well these tips helped you in someway. If you have any questions feel free to comment here or email me atAmber@theworldseesnormal.com I am very passionate about helping people through this period in their lives!