Wednesday, August 10, 2011

My Social Security Disability Hearing and Why I Write this Blog

I'm really not sure what I was expecting when I went to my Social Security Disability hearing.  What ever I was expecting, it was totally different.  :-)  I had worried so much about parking and getting to the building.  About having to stand in front of the building and wait for Mr. Supportive to come back from parking the car.  That was a lot of wasted worrying.  The Memphis SSD office is in a one floor building with parking right by the door.  We arrived at the same time as my attorney and she secured a conference room for us to go over how the hearing would proceed. Rachel Cohen is a great attorney but more importantly, she's a wonderful human being who did her best to calm my fears.  

Instead of this
Unfortunately, Mr. Wonderful was not allowed in the hearing room. Him being there would have made it a lot easier.  Being a paralegal, my point of reference for a hearing room was a court room.  The idea of being "on display" in a big room had really bothered me.  I was glad to discover that a hearing room was nothing more than a small conference room with a table where the court reporter, my attorney and I sat.  The administrative law judge did have a semi- traditional "bench" at the end of the table and I think he was wearing judicial robes. 
It was more like this.

I was able to hold myself together for the first part of the questioning.  Things like my name and what positions I had held in my employment life.  Those questions have clear, factual answers.  It was when I was asked to describe how I became ill.  How it affected my ability to work.  How it affects my ability to function at home.  Those answers are also clear and factual.  At the same time, they are subjective, emotional and based on my inner experience as they happened.

As I told about going to school to be a paralegal and how that was a dream come true, I was calm.  The calmness began to go away when I started telling how my world had changed.  How I could not remember how to use the skills I had worked so hard to learn.  As I told the administrative law judge about the times I was taught a new task in my new job, only to not only not remember how to do it, I didn't remember being taught, the emotion began to overwhelm me.  As I told him of the physical pain and fatigue that cause me to not be able to go to work, the tears began to fall.  Several times, I had to stop and compose  myself.  It was probably the most emotionally painful time of my life.  The hardest question of the day was the last one.  Why did my illness keep me from working full time.

That's when the tear ducts opened wide as I tried to tell the administrative law judge how I had always been the "go to person" in the office.  How I had always been the one at work early and staying late.  How I had always been on top of my game, admired by everyone and receiving nothing but the highest reviews. How almost exactly a year before I had to stop working, I was recognized at my graduation ceremony as graduating with the highest honors - a 4.0 gpa. I worked full time and went to school full time and did both well.  Then without warning, I started becoming a person that I didn't know.  A person who was so fatigued that walking in from the parking lot caused me to have to sit down as soon as I got into the building.  Many times, I didn't think I'd make it into the building and thought about sitting down on the curb to rest.  I became a person who was in so much pain that no matter what I did or what I took, it wouldn't go away.  The pain grew to be so bad that I would throw up trying to get ready for work.  I became the most undependable and useless person I had ever seen.  I didn't understand it and I didn't want that to be my life.  By this point, I was pretty much inconsolable.  All I wanted was to get out of that room and into Mr. Supportive's arms.  


The administrative law judge had been reading the statements from family and friends and the printouts from this blog as he listened to my testimony.  Before we finished up, he asked me how long it took to write a post.  I told him it depended on the day.  On a good day, I could do it in a hour or so.  On a bad day, it could take several hours up to several days.  Then he asked me why.  Why did I write?  I don't think I really knew until he asked me that question. 

In the beginning, it had been to chronicle my pain so that he could read it when that day came.  It was at that moment that I realized that it was much more than that.  I realized that it was also for all of you who might read it.  That somehow it would help you not to feel alone.  It's for your family and friends who don't know what to make of this disease that has completely changed you. We suffer from a hidden illness, an illness that is considered by some, including those in the medical profession, to be nothing but laziness or "in our head".  I'm here to tell you that it is real.  It's only "in our heads" in the memory loss that it causes and the false nerve firings that magnify pain in our body.  It is a real illness that needs a real cure.  Too many people have suffered for too long, physically from Fibromyalgia and mentally at the hands of their family, friends and doctors who don't believe it exists.  


I sometimes feel that the "world" is run by Google searches.  It's time for all of us to use the power of the internet and be as active as we can and get the truth out. We deserve to be heard!  Since most of us become very limited in what we can do, write a blog, comment on blog posts, talk to everyone you can.  Write your state legislators, your Congressman. Become active reading the information that the various Fibromyalgia organizations publish.  Let the world know that we are legitimately ill and we deserve to be treated as such.

I have come to believe that God has a plan for me. A plan to use my illness and suffering to encourage others who suffer like I do.  I'm not sure how it's suppose to work because there are so many days when I can't function.  In addition to Fibromyalgia, I have Chronic Myofasical Pain, Chronic Fatigue, Peripheral Neuropathy,  Lymphedema, Carpal Tunnel Syndrome and 2 herniated discs in my neck and 2 in my back. I trust that He will show me and I pray that I can help those of you who read this in some small way.

21 comments:

  1. I sure hope you win. I am waiting for my first appeal.

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  2. I know that was a hard day for you. I'm glad it's over and I hope you dont' have to go thru that again. sending hugs and love....k

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  3. Your blog entry came to my mailbox via Google Alert. I, too have Fibro and went through the SSDI process after having to stop working as a registered nurse. I empathize with what you are going through and congratulate you for blogging about your experience. We need to speak up about Fibromyalgia and Chronic Pain in order to make a positive change for ourselves.
    Adrianne
    www.survivingfibromyalgia.wordpress.com
    www.fibromyalgianews.net

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  4. I love where you talk about why you blog "It's time for all of us to use the power of the internet and be as active as we can and get the truth out. We deserve to be heard! Since most of us become very limited in what we can do, write a blog, comment on blog posts, talk to everyone you can. " This is the reason why i started Fibro Bloggers Directory and hopefully it will get more bloggers. I have hope we can do something more to get the message heard. Your blog is great.

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  5. Adrianne, Thank you for stopping by and leaving your comment. I've been to your blog and your website and I enjoyed both of them. I've subscribed to your blog through Google Reader and bookmarked the site. It's go a lot of great information on it! I look forward to hearing from you again.

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  6. Good, I was so excited when I found the Fibro Bloggers Director and I was pleased to be the featured blogger one week. I think that the more blogs and websites we have out there telling our story the more chances we have to educate people on this horrendous disease and how quickly it can change our life. As more people become educated and "believe" we suffer from a very real disease, the more we will be accepted and more research money will suddenly be "found" to look for our cure.

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  7. Hello, I just fininshing reading your blog and I to suffer with fibromyalgia and im looking for answers and resources as well as suppport to help me to get through on this journey. I feel the same way in regards to doing what we can to get the word out about Fibromyalgia and the challenges that we face. I have tried so many different medications and nothing really helps with the pain and the side effects are the other killer. I find myself looking for more information and ways to cope. I apprecaiate your sharing your experiences with the disabilty experiences. I am accepting that one day soon, I will have to submit my application as I continue to have more ongoing issues that affect my ability to work. I am a mental heatlh therapist and I am in denial that this is happening to me. I am trusting God to heal me. I know him as a healer of other disease just not understanding this one. But I do feel that with us using these types of forums to get the word out other people will begin to understand what we deal with daily.....with the invisible disease that has attacked so many. Once again thanks and join my blog at www.simpleexpression11.blogspot.com

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    1. Applying for or Appealing a Social Security Disability Case can be very challenging. It was very challenging for me, especially the first time my application was denied and I had to file an appeal. I completed an online Social Security Disability Appeal form and submitted it. Little did I know that it would take up to two to three years to even get a court date scheduled. I said to myself, “I can’t wait two to three years just for a court date because by then I will be homeless with no money, no food, and lose everything I ever owned.” Also, going back to work was out of the question because I was not physically or mentally ready to return and would eventually get terminated from a job.

      So I started doing intensive internet research for nine months to find a way to get my Social Security Disability Appeal Case approved without waiting two to three years for court date to be scheduled. I utilized the information I found and won my Social Security Disability Appeal on my own without a court date. I did not have an attorney because I did not want to lose 25% of my back pay to attorney fees and I wanted to decide my own fate. After going through the whole process, that’s when I decided to write this book to explain in detail what documents and tests you need to try to win your Social Security Disability case the first time around or appeal without a court date.
      I do not want anyone to go through what I experienced in trying to get approved for my Social Security Disability for a whole year. It is hard for someone to get approved when they do not know what to do or what documents and tests you may need in order to prove you are indeed disabled.

      This information really helped me get approved for a Social Security Disability Appeal without a scheduled court date. I recommend that you download “How To Win Your Social Security Disability Without An Attorney” so you can start utilizing this information for your Social Security Disability Appeal or the first time you apply.

      If this information was available when I was trying to win my Social Security Disability Appeal, I would have ordered it. But during my nine months of research, I couldn’t find anything like this book out there on the internet. Please take advantage of this information because it takes you step-by-step through how to get your case reviewed without a court hearing and how you first apply for Social Security Disability. This will be the best money you ever spend on a self-help book.

      I created this website to help people better understand the Social Security Disability process. I have also written a book called “How To Win Your Social Security Disability Without An Attorney.” Download this book for $19.99, which is a special limited time offer. Do yourself a favor and purchase this book so you can start trying to get approved for a Social Security Disability Appeal or the first time you apply for Social Security Disability Benefits. To download book click on www.socialsecuritydisabilityandyou.com At the bottom of the webpage click on the Shopping Cart Tab to purchase the book “How To Win Your Social Security Disability Without An Attorney.”

      Please click SHOP on the upper right side of the website to place order.


      Good Luck

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  8. Thank you for sharing your experience with your Social Security disability hearing. Certainly, this post can provide some idea of what to expect for other people like yourself about to enter a similar situation. It was also good to read that your attorney was able to allay some of your understandable fears about the experience. Fibromyalgia is obviously a very painful disorder and we wish you well in your recovery.

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    1. Thank you for your kind words. I do hope that I can help others to have a better idea of what to expect, especially when going before the Administrative Law Judge. Fibromyalgia pain is something that you cannot begin to describe to someone with out it. It's also not something that you can recover from. Hopefully, more funding for research will be found that will one day provide a cure. For now, we manage the best we can to try and live as "normal" of a life as we can.

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  9. I have my hearing in a month and I am hoping to win my case also. I have FMS, Lupus, and IBS. Thank you for sharing and good luck!

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    1. Schnookie, How did your hearing go? I hope you were approved.

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  10. Have you received a response to your hearing yet? This particular blog told my story today.

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    1. Jennifer, I'm sorry I haven't responded before now. I've been fighting what they are calling the 4 week flu in our area. I'm hoping that I'm finally over it.

      I was so relieved to receive my award letter in October 2011. I kept having my husband read it to me because I was afraid I was reading it wrong. It took 2 years for me to get through the process and I was so relieved to not have to fight for it any longer.

      I recommend that everyone get an attorney for the appeals process. If you don't get your benefits, you owe them nothing. If you are approved, they get a percentage of your back pay. The percentage is set by SSD. I don't know that having one would make a difference in your initial application being approved or even the first appeal. I believe strongly that having an attorney who specializes in Social Security Disability law makes a huge difference in your appearance before the administrative law judge (ALJ)for your appeal hearing. SSD attorney's are familiar with the ALJs in your area and know what the ALJ is looking for in the documents they submit on your behalf. Keeping a pain journal and having friends and family write letters about how they have seen your illness change you is very helpful.

      If you have any questions that I might could help you with, please let me know.

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  11. Hi Cynthia! Emotions do run high while you're on a hearing and you even felt overwhelmed at some point. However, I admire at how calm and collected you were. Anyhow, I agree with what you said to Jennifer. When it comes to cases like this, it's good to have an expert to discuss your disability benefit program application with. An experienced and reliable attorney will certainly help you qualify for such applications.

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  14. A very dear friend of mine is suffering with fybro, and has asked me to write a statement letter for her hearing. I don't want to do anything to jeopardize her chances. Any suggestions?

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    1. Beth, thank you for your question. I'm putting together a blog post on this topic since you asked. :-) Not knowing how soon you needed this information, I thought I go ahead and give you the "Cliff Notes" on the topic.

      In your letter write exactly what you've seen. How you've seen her life change. What has pain taken away from her, from her family and from her friends. Don't be afraid of hurting her feelings. Whether she is at the stage where she admits it to herself or not, she knows it's true. You need to portray her just as she is - a woman who has had her life changed forever by something beyond her control.

      Be honest but don't make it sound as if she could run a marathon while single handily saving the world. Let me explain what I mean. We have to remember that the judge won't "hear" your voice to know that you are actually saying you admire her perseverance and determination. Talk about how she struggles to take care of her children, etc. Explain the effort that it takes her to do so. Talk about how drained she is and how much she suffers to do this. I hope that makes sense.

      The letters that my friends wrote conveyed one main topic worded many different ways - I was no longer the woman I use to be. One talked about all the fun things we use to do as part of a group and how I could no longer do participate. She even went so far as to say that I had become a recluse. Sadly, that hit the nail on the head. My husband and I are godparents to our best friends children. She wrote about how I was in so much pain that I missed our goddaughter's first birthday party I had been looking forward to. (That day, I was in so much pain that I left bed only to literally crawl to the bathroom.) Our priest wrote about how active I had been in our church and how the pain forced me to give up all the activities that I loved so much. My daughter wrote about how I loved gardening and how keeping an immaculate house was so important to me and how I could no longer do either. The most painful one was my husband's four page letter. His last line broke my heart - "Each day I mourn the loss of my wife".

      I hope this is of some help. When I finish the full post, I'll post a link here for you and hopefully you'll get a notification.

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Life is all about learning. Sharing your thoughts will help us do that together. All I ask is that you keep the language PG and that you not leave mean spirited comments.