Mama Sick

(I am sorry to keep you waiting so long.  I wrote this over the course of two days, starting on Monday overnight.  I am sorry it is so long but I felt that it is a story that HAD to be written. You may want to take it in bits, or perhaps you will find it so compelling you will read it straight through.  If I was you I would probably take it in bits because I cannot take long emails, posts, etc.  But I did try to separate it into small paragraphs for your convenience! Happy? reading!)

It’s is 1:30 a.m.  I fell asleep at 8:30 last night, in pain and traumatized FOR LIFE.

I do not want to scare all who have not yet been to see the doctors on the government’s side so if you subscribe to the ignorance is bliss way of thinking STOP HERE.  If you are a sick person who has already been through it you probably have a horror story of you own.  If you are a well person you NEED to know how the government treats disabled people.

Things were a little confused to begin with.  To review with some, I am in the middle of my disability hearing.  I know I have not put up Part II, yet, it was just sooo horrendous, so traumatizing, so damaging that it has been difficult to write down.  But at my hearing the judge from Hell asked, “Where are the reports from the Social Security doctors?”  Well I was never asked to see any.  If you’ve been through the process you are probably thinking that this is odd.  So did I, but I thought that it meant that they believed me.  That my case was so strong that they were going on my doctors’ testimony only.  And that I must have it in the bag.  To review, going back when I was turned down after first applying in October of 2009, when I was turned down in January of 2010 (Happy New Year!) I was in shock.  Shock did not even describe it.  The whole application process had already thrown me into such a state of depression and anxiety that I could no longer get out of bed, I just used to lay in my bed and when I was forced because of Tyler to go out, I resembled someone who looked liked they needed a heroin fix I would shake so badly.

If I am making you afraid to apply for Social Security Disability, I really don’t mean to.  You may not be as sick physically, you do not need to have 14 diseases and conditions like me or take 18 medications.  You may be going into the process with a stronger mental state.  This is just MY story.  I want to prepare you for the worst and tell you my truth.

So, I have made it nearly two years with no one asking me to see a doctor, how is that MY fault?  Well it may not be my fault but it is certainly MY problem because I got a letter in the mail after my trial.  I couldn’t understand it exactly, but the judge had handwritten on it “Mental, Neurological/RA”.  What did that even mean?  Grant and I s’ mind boggled.  It couldn’t mean that she wanted me to see three doctors?  Nah, at this stage of the game this is unheard of.  I mean, was she actually saying that she didn’t believe I was mentally ill, that I did not have Lupus?  I don’t even have anything neurologically wrong with me, so that can’t be, right!?

A few weeks later I got two letters.  August 11th was to be my physical evaluation and on August 15th I was to take my mental evaluation, in beautiful New Brunswick, NJ, folks.  I was very nervous, I wanted “prep” from my lawyer who only said, “Emily, you are a very sick woman, just tell the TRUTH. I am not worried about YOU.”  Two days before August 11th I got a letter and phone call saying “Sorry for the inconvenience, your August 11th appointment has been rescheduled to August 15th.”  Well, what happened to my appointment for August 15th?  Unlike my August 11th physical evaluation appointment,  I had not received eight of the same letters about it, it had just…vanished.  So, yesterday at around 10:00 I called the office to confirm and the administrative assistant or whatever she was, she may have been a nurse even, says, “Well you’re having two appointments today, but unfortunately not back to back.  You’ve got the one at 11:30 and then the one…well, whenever we can fit you.”

Grant had to drive me because we only have one car and he needed to pick Tyler up from camp at noon.  The Medical Evaluation center was in an converted old house, nice, right? Well I walked in and people are sitting everywhere, sick, disabled people who looked like they had been through a natural disaster are outside, and inside sitting on the stairs because there is NOWHERE for them to sit.  No one would offer you a seat because they are too sick. The admin. gives me four pages of paperwork.  I asked her why wasn’t I told beforehand that I needed to fill this out?  She just shrugged. Now I have to go on MY memory?!

As I mentioned there was no where to sit and I cannot stand for any longer than two minutes so I had to plop myself down on the floor, leaning up against the bathroom door and a vending machine that is out of order and even if it worked, who has the money for food, right?  While I am on that subject I have noticed that if I want to get some food, there is nothing around.  Some people came in with food that worked there and when I asked where they got it from they said, “Oh, well you have to drive to it, there is nothing within walking distance around here.”!!!  So, there are disabled people with nowhere to sit and nothing to eat and no means of getting to food because most people cannot drive and I have no car anyway.

Because I am on Orencia, an immunosuppressant drug, I have been sick almost all month.  I am getting angrier and angrier.  I am in a GERM FACTORY.  With 20 people who have God knows what. If I didn’t have to be there I would be home in bed because I have a fever and feel like shit.  I shouldn’t have had to come here, they should have had to come to ME and saw me in MY bed, I mean this shit is already RIDICULOUS!  

At noon, the doctor came IN.  He apologized, the other doctor was sick and he was stuck in traffic. My appointment was at 11:30, my FIRST appointment.  People have been waiting there since 9:30 and NO ONE HAS BEEN SEEN.  I have a choice, I CAN reschedule, but if I do this, this will further delay the judge’s decision, for God knows how long, and as you probably already know, I need the money, as soon as possible, I have needed the money for over three years now as I have had no “Substantial Gainful Employment” in three and a half years.  

After filling out the paperwork I went outside to call Grant.  I didn’t know that I would have to list all my hospitalizations going back the past 10 YEARS.  Before I made the call a man who was sitting on the stairs by me was smoking.  He asked me what was wrong with me and I did the short form and told him I had Lupus.  He started to shake his head.  “I am sorry, I am so sorry.  The love of my life, my baby’s mother died of Lupus.  She was my sweet heart. She died when my daughter was just five years old.”  I said, “Oh, my God, I am so sorry” and then it quickly hit me that I have Lupus and my child is nearly five and how in the last three weeks I have come close to dying twice and I lost it.  The man started apologizing to me, but it wasn’t his fault.  This is Lupus, my friends.  This too can be my reality, let’s not try to sugarcoat, it I REFUSE to.  We talked about how with Lupus, you never know what is going to happen, how sick you are going to be or not, how Lupus will attack you, how you may die from it but how you may not.  I told him that I would rather have Cancer.  Then I know, I am either going to live or die.  It is just that simple.  With Lupus, I don’t know when my time is coming, what organs Lupus will decide to attack.  I cannot bear this “up in the air” disease, that people do not understand, that people do not know how serious this disease is and what people with Lupus live with everyday, especially if you have children.

I composed myself to call Grant. I tried not to cry because it upsets him too much.  I asked him if I was correct on my hospitalizations and let him know I would probably be there for hours.  And then I went back in, to my seat on the floor.

Finally someone got up and I got the seat, though at times, if I got up, my seat would be gone, snooze you lose, you know?  I don’t blame someone sick or sicker than me for taking a seat.

I could write a post alone about every single person there.  The brilliant twenty-two year-old who has had to drop out of college from fibromyalgia.  The lady who keeps having mini strokes and was sweet but it is obvious she is no longer “all there”.  The man who walks with a walker, who worked for years installing elevators, whose legs were so swollen from arthritis that there are no words to even describe it.

Are these people faking?  Is this lady pretending to be a little “off”, did this guy strap on fake padding on his legs?  Yet in New Jersey alone, nearly 90% of those applying for disability are turned down the first time, and most of them were there for the first time, not in a trial like me!

At about two hours in I was called by a doctor.  He asked me a lot about my physical condition, it was like a mix of mental and physical rolled into one.  I couldn’t figure it out, but he seemed to be in my favor in fact he was feeding me.  “What are your mental illnesses?”  “Depression, Anxiety, and Mania.”  “Oh, so you’re bi-polar?”  “Well no, I have never been diagnosed as having bi-polar…”  “You’ve got Mania and you’ve got Depression…you’re Bi-polar.”  “Uh-okay”, I said, as he wrote it down.  “Do you get panic attacks?”  I do, but I would not have remembered to mention them!  After a bit longer he said that we were done.  “Aren’t you going to examine me?”  “Mrs. Cullen, I am the Mental Evaluator.”  I MUST really be crazy now if I thought he was the doctor who was going to examine me physically!  He must have wrote that down too!

Back out for more than an hour’s wait!  I was the talk of the waiting room.  We had heard everyone’s stories and no one could believe that the judge was making me take two examinations, that I had gone this far, was THIS sick, was in my trial phase and still no YES.  I probably scared the shit out of them, poor folks.

Then it was my turn again.  A nice elderly doctor called me in, where I found out he was going to give me TWO exams!  One, Neurological, one Rheumatological!  We talked for a while, and he did the same thing as the other doctor, termed me “bi-polar”, which I do NOT even believe I am, which is a very serious illness!  Okay!

“Okay Mrs. Cullen, now please stand up.”  As he started to twist my body every which way I called out “I am hypermobile!” “Wow!  You sure are!  I don’t think I’ve ever seen anything like this!  You could be in Circque du Soleil!”  Oh, Lord, please don’t let him write that I can work in the circus!

 “Okay, Mrs. Cullen, now please remove your bandages (I wear ACE bandages on my knees and my wrists because my hypermobility has gotten so bad, I may be heading towards ANOTHER disease that I don’t even want to name.  If you’re reading this and you’ve got it, God bless you, this is one disease I don’t know how I would ever manage!)

I got on the table.  “You are going to hurt me now.”  “Well, no, I am going to try NOT to hurt you, I am just going to examine you.”  I knew that THIS was a lie, that he needed to mash my joints around at the very least, he needed to KNOW that I am sick, that I am in the chronic pain that I say I am in. First came the Neurological part of the exam.  He got out the little hammer and said, “Now please don’t hurt me, please try not to kick me.”  He’s got to be kidding me, right?  Right?  

My legs made the appropriate little kicks, my reflexes are fine.  He had taken my blood pressure first and I had mentioned to him before he went for the BP device that I cannot use a BP wrist device because with my Fibromyalgia, the vibration of the BP device caused incredible pain.  He took my blood pressure with the arm cuff.

After the hammer, he did something that I have not had done in a long time.  He took one of those tuning forks and somehow made it vibrate.  I did not know what was coming, how could I?  He then put that godforsaken tuning fork against my leg and I literally jumped out of my skin and started screaming!  Those vibrations!  Coursing through my whole body!  After the screaming I completely broke down crying.  “You hurt me, you hurt me!”  “I-I am sorry. This is not the part of the exam that is supposed to hurt, I did not mean to hurt you!”  He had a horrified look on his face.  I know even though he works for Social Security he is, after all, a Medical Doctor, and he was not trying to cause me that much pain.

After that it was pretty much over, with my entire Rheumatological examination skipped and him doing a lot of writing.  He thanked me very much for my time and apologized for my having to wait so long.  I had been there four and a half hours.

I walked out of the office with tears in my eyes still.  Everybody was looking at me wondering, my God what did they do to her?  I called Grant for him and Tyler to come and pick me up.  By the time they picked me up, as per the usual Emily Cullen luck, it was pouring down rain and Grant could not park or come anywhere near the door.  Handicapped parking for the disabled? Hello?  And yes, I WILL be filing a complaint with the New Jersey Association for Disabilities.

As the cold rain fell on me, drowning me, I was screaming because it was so cold.  I finally got in the car looking as though I had showered in my clothes.  I screamed for Grant to turn off the A/C.  Tyler was so happy to see me.  Grant told me he had kept asking him, “When is your phone going to ring?” because he knew it would be me calling and I would be coming home.

Now, I wait.  For the doctor’s reports.  For the lawyer to call me back, to see what the judge wants, from me, if anything, and for the next step in this trial of my life.