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.

My Social Security Hearing Was an Eye Opener

Here's short update on what happened at my hearing. I'm going to write a blog post about the hearing and what went on soon. 

Reading the statements friends and family wrote to give the judge pretty much slapped me into reality quickly.  I cried a lot last week when they started arriving.  Everyone said the same thing just in different words. I had to pick up my records from my GP and reading the notes my specialist had sent her brought on more tears. My attorney quoted my doctors in her brief to the judge and when she read what they said to Bill and I more tears came. (I had never seen those medical records.)  Needless to say,  It was a highly emotional week for me. Either I truly did not realize how sick I actually am or I was in so much denial that I was completely blind-sighted by the facts. 

Apparently someone in the local Social Security Disability office should have scheduled me for both physical and mental health clinical evaluations. Since they weren't done before the hearing, it may be another 4 or 5 months till I know anything. The judge said several times that my file is not complete and needed to be completed. My attorney said that she felt like if he was going to deny me, he would have done that without the CEs being in there. So either he's teetering on which way to go and needs the additional information to decide or he's going to approve me once he has all the documentation he needs in the file. 

I can't help but wonder how much longer this is going to take if Congress and the president don't get their act together. As Christians, we must ban together and PRAY. 2 Chronicles 7:14 says

"if my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then will I hear from heaven and will forgive their sin and will heal their land".

I believe that! We have to pray for our leaders even if we don't agree with them, as well as our brothers and sisters in Christ and even our enemies. If our hearts aren't right, God isn't going to grant us the desires of our heart. 

July 27, 2011 - It's finally D Day

It’s officially the day of my Social Security Disability hearing.  Preparation for it has been an emotional rollercoaster of feelings that I never dreamed I would experience. I have gone from being perfectly calm to a total basket case several times over.  My plan had been to get my preparation finished up mid afternoon and then have a relaxing evening followed by a good night’s sleep. Since I’m writing this at 3:36 AM I guess it’s obvious that those plans did not come to fruition.  

It all happened innocently enough. This morning I made a call to our GP to make an appointment for the mother-in-law’s checkup so she could get a round of new prescriptions and refills for the next 12 months.  Armed with Mr. Supportive’s work schedule I was ready to make an appointment for one of his days off next week.  Alas, even the best plans can get sidetracked.  The MIL had 14 days of meds left.  Not a problem right?  Plenty of time to make an appointment.  Wrong!  It seems that our wonderful (and fibro friendly) GP had the nerve to schedule a vacation with her family for the next two weeks.  The nerve of her!!  The next available appointment was 16 days out. 14 days of meds – 16 days till an appointment…. Houston, we have a problem.  Wednesday – as in today, the day of my hearing Wednesday - was the only opening except for 2:00 yesterday (Tuesday). Since Mr. Supportive is using his day off to go with me, if she was going to get her refills then it was up to me. So I did as much as I could toward finishing up my prep work and then took off to pick her up. We had an uneventful trip successfully getting her new prescriptions. I even had a quick discussion of my recent neurologist visit and the signs of wonderful little TIAs that showed up on the MRI.  

Yes, I am exhausted.  Yes, my pain level was up to a Level 7. (This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well.)  It’s still a Level 6.  (You simply cannot ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities.) Ideally, I would have gone in, taken a breakthrough pain pill, kicked back in the recliner and slept several hours. As much as I desperately needed to, I couldn’t so I dropped her off, stopped by the Kroger Pharmacy (whoever thought to put drive up windows at pharmacies is a genius!), picked up my medicines and headed home.  With a slight detour to feed the dog so he didn’t wake me up demanding to eat, I hit the bed for a much needed nap.  Before anyone asks, yes, we all know that this is not something that I am really able to do anymore. I did it because MIL needed to see the doctor before she could get her new prescriptions.  She had a limited amount of medicine that was not going to last through the doctor’s vacation.  There was no one else available to do it on short notice and it had to be done.  MIL would have done it for me if the tables were turned (and she was not legally blind).  I have come to the realization that my days of doing it even in a time sensitive situation like we had today are extremely limited and I will talk about that in my next post

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I have a really hard time judging how long it will take me to do things like this these days.  Pre-fibro I would have had the information printed, collated and bound in a presentation folder in 45 minutes. (Ok, I may be exaggerating a little but you get the point.)  Instead, I’ve been working at this for seven hours.  It’s finally all printed, collated and binder clipped ready to hand off to my attorney in 5 hours!  Since I was so stressed about the hearing last night I slept a total of 45 minutes - maybe. I’m headed to bed for a couple of hours of sleep – I hope.

I think I’m as stressed about Mr. Supportive having to drop me off in front of the building and go park the car as I am the hearing.  The same woman who 3 years ago flew to St. Louis where she had been once 5 years before in a car and navigated the metro rail from the airport to a strange neighborhood stop to meet up with friends is now afraid of standing in front of a building in downtown Memphis at rush hour.  My how fibromyalgia changes our lives.

Welcome to My Life with Fibromyalgia Pain

This blog is going to serve as my pain diary.  Pain diary you ask?  Yes, Pain diary.  I am in the process of applying for Social Security Disability.  I’ve already been denied twice and now I’m waiting for a hearing before an Administrative Law Judge.  Part of the evidence that my attorney and I will submit is my pain diary. I began keeping a pain diary when I first got too sick to work.  It was hand written and in a big official looking black bound journal.  The problem is, my hands hurt so badly at times that I can’t hold the pen to write.  If I keep trying, I may be able to write a little but even I can’t read it.  For some reason typing isn’t as difficult.  I thought of just having a typed journal kept safe on my hard drive to print off and take to the hearing.  Then I decided that if I was able to help just one person by sharing how I became ill and my trials with life that it was worth putting it out for all to see.

What's Wrong With Me

I suffer from Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue Syndrome, Short Term Memory Loss, Peripheral Neuropathy and Peripheral Edema. My Internist interprets my SED rate as positive for Rheumatoid Arthritis but my Rheumatologist says it’s not quiet high enough. Most of these are Autoimmune Disorders. All of these conditions add up to one thing – I am in pain 24 hours a day, 7 days a week.  Even with prescription pain medication, I live with pain that is around a 5 or 6 on that scale they show you at the doctor’s office.  On a bad day, 10, the highest number on their scale, in no way describes the pain that I feel.

I am not alone.  Fibromyalgia alone affects over three million people in the United States alone.  You can develop fibromyalgia syndrome (FMS) at any age, though, typically, a diagnosis will be made between the ages of twenty and sixty.  Fibromyalgia tends to hit people during their middle adult years and those who are diagnosed with fibromyalgia feel the burden of FMS at points in their lives when they are at their busiest. That was true with me when my fibro got so severe I couldn't work.  I had finally gotten a college degree at 52 and begun a career as a paralegal.  When people ask me why I don't work, I tend to want to slap them.  Instead of that, I tell them about how I worked 40 - 45 hours a week, carried an 18 hour class load and maintained a 4.0 average in college.  I tell them about how I started being unable to remember how to do tasks in my new job.  I would be taught a new tasks and two days later, not only did I not remember how to do it, I didn't even remember being taught how.  I tell them about the days of dragging myself out of bed to go to work and standing over the sink in the so much pain that I was throwing up.  I tell them about pain literally so bad that I had to crawl from the bed to the bathroom because I couldn't stand up. I finish my story with a recap of the day that my supervisor and I sat down and talked and I realized that I could never learn a new tasks and was losing my ability to remember what I did know.  It was at that point that I knew I had to let my pain win and give up.  I fought a good fight against Fibromyalgia but in the end, it beat me to the curb.

How Did I Get Here?

I first begin to experience fibro symptoms after a case of Guillain Barre Syndrome (GBS), an autoimmune disorder, when I was 14 years old.   GBS is a rare disease that can be life threatening. It occurs after a viral or bacterial infection.  GBS initially affects the peripheral nervous system. I believe that I  had Miller Fisher Syndrome, (MFS) a common clinical variant of GBS, it’s identified in approximately in 5% of all Guillain Barre Syndrome cases. It is a syndrome of acute external ophthalmoplegia, ataxia and areflexia without significant motor or sensory deficit in the limbs.  MFS causes descending paralysis, i.e. paralysis that begins in the upper body and gradually spreads downward. The difference between MFS and GBS is that different nerve groups are affected such that paralysis in GBS tends to start in the legs and move up, where in MFS it starts in the head, affecting eye muscles, balance and slowly descends to the neck, arms, etc. MFS does not generally have the life threatening aspects of GBS but can be very difficult to live through with double vision, nausea, weakness, difficulty. There is a close connection between antiganglioside antibodies which cause Peripheral Neuropathy and the Miller Fisher Syndrome.  When I had MFS, I could walk ok.  The problem came in with navigating something as simple as stepping up onto or down from a sidewalk and I couldn't climb steps

I still suffer from areflexia, the absence of neurologic reflexes such as the knee jerk reaction and Ataxia – wobbliness, incoordination and unsteadiness due to the brain's failure to regulate the body's posture and regulate the strength and direction of limb. I believe that I have remnants of Ophthalmoplegia, a paralysis or weakness of one or more of the muscles that control eye movement. The condition can be caused by any of several neurologic disorders. It may be myopathic, meaning that the muscles controlling eye movements are directly involved, or neurogenic, meaning that the nerve pathways controlling eye muscles are affected.

Tomorrow we’ll talk about how my Fibromyalgia has progressed over the last 40 years.

My Pain for Today

September 2, 2010: My pain today has gone up and down from the usual 5 to a 9.  I’ve had a headache and hurt so bad that I slept about 18 hours of the last 24. I managed to get up for a couple of hours to drag myself to the bank with Bill to sign some paperwork. As soon as I got home I went back to bed and slept from 9:45 a.m. to 3:30 p.m. Got up, took some more medicine and was back asleep till 6:15 p.m. I had no energy to do anything but sleep.