I am even having trouble blogging, so please excuse me if I am not writing as well as usual.

When I called the lawyer’s office a week ago the administrative assistant said they too had just gotten a decision.  Typically the lawyer reviews the decision and gives the person his recommendation as to what he believes is the next course of action.  She told me to wait a week to ten days to hear something from him.

He called me the next day.

He had said he wanted to call me yesterday but that he felt it was too late.  He laid in bed that night, replaying it all in his head.  I said, “Thank you for caring” and he said, “I’m not just saying this to be a nice guy to you.”  I told him I wish I had had more time at my trial and he said, “You could have had another hour with this judge, her mind was made up about you.”

He told me he was going to start working on an appeal that day.  That’s where he takes apart her reasoning as to how she came up with the decision, and identifies the legal mistakes made.  He felt he had plenty to work with.  For myself, I could not bear to read what she said.  It was pages and pages long and just too painful.

Once the appeal is done, a different judge reviews it but Social Security has five to six months to make a decision!   More waiting, more worrying in the battle of my life.

I feel good in that the lawyer was really shocked and he seemed fired up to help me.  He’s got a stake in this too of course, but he really seems to believe in my case.

In Grant and I s’ heart, we really expected a favorable outcome and readjusting to this unfavorable decision has been extremely difficult for the two of us.  I started this process officially in October, 2009 if you are counting.

It makes me angry about my illnesses all over again.  I think about the way I used to be, before I got really sick.  A busy working mom bringing in good pay, taking care of my family. And the way I am now, struggling every day, with no control over my destiny, just waiting for a stranger to recognize that I truly am ill.  Literally my life once again hangs in the balance of one person and I can only hope that this time this person makes what in my heart I know is the right decision.

The post The Appeal first appeared on Mama Sick.

The decision was more than 10 pages long and I have not even looked at it and don’t know if I even can.  When I saw the lies the Social Security doctors had written about me and the true results of my case not put in the exam, it nearly brought me over the edge.  I really thought the rebuttal letters from my lawyer and I would shake things up a bit, but were they even read by my judge? These doctors committed medical malpractice, they lied and they did not put in pertinent information that would have been favorable to my case…what recourse do I have towards them?  Who pays for this besides myself and my family?

I know that when I originally had my disability trial on July 19th, I did not blog about it because I felt it was too traumatizing to relive it on paper but now I feel compelled to write about it, at least the major highlights.  I truly felt I did not have “my day in court”, the judge kept looking at the clock.  I had over a dozen diagnoses, took many medications but she only asked me three questions.

1) “What do you take for your Lupus?”

“I take Orencia.”

“What is that?”

What is that?  What is that? You, the person in charge of my future, you, who hears testimony from sick people every day…has never heard of Orencia??  Do you watch television?

When we got into the courtroom, I put my feet up, as I cannot for any length of time sit with my feet down due to the swelling.  But the room was too small so I put my feet up to my chest.

2) “How come you can put your feet to your chest?”

“It is easy for me because I am hypermobile.”

“What is that?”

I would think that any idiot would be able to figure out what “hyper” and “mobile” might be.  Need I write any more about this one?

3) You take Pristiq for your depression.  What side effects do you experience on this?

“Not too many, except for the sexual side effects.”

3a) How much sex are you having?

I was in shock, what in God’s name does that have to do with whether or not I am capable of doing a job?  I looked at my lawyer and he said I had to answer the question.  I answered it, I will leave the how much or how little to your imagination but it was embarrassing and degrading.

Most of the time was spent with the judge offering up jobs that she thought I could do and my lawyer knocking down each one, I did feel he was a very good lawyer.

I think my whole trial was about 30-35 minutes long.  When she was wrapping things up I got up and told her I had a few statements of my own to make, which she allowed.

I said, “I can’t believe you are trying to figure out what jobs I can do.  I am bedridden on most days!  Every single second of my life is miserable and were it not for my child I would not BE HERE!”

I was angry and crying.  She said, “Well, I hope you feel better” and I said, “With all due respect, your honor I will NEVER feel better!”

I feel like I couldn’t have gotten a worse judge.  My lawyer said she was one of the worst he has ever experienced but not the very worst.  When I went for my court ordered doctors’ exams, people asked me what judge I had and when I told them her name one man groaned and shook his head.  Apparently she had somewhat of a reputation.

Back to the here and now.  I have heard of people needing to go to court two or three times for their disability but I never thought I would be one of them.  My Rheumatologist told me in her experience they always denied the sickest people.

As I break the news to my family and friends, I know that some will question if I am really deserving of my disability, and that maybe some of you will too.  The only thing I can say is that being this sick, and not being able to work because of it has put my family into poverty.  I will never be able to help my child go to college or maybe ever take him on a vacation.  I don’t see how they could think anyone with a family would deliberately not work if there was any way that they could.  I did work disabled for five years and I just couldn’t do it any more and I wish to God that I could.  This was not the track I was on, my future looked very bright.

Going through this process, now over two years, has been the hardest thing I have ever done, physically and mentally and if I didn’t need the money, if Grant were not also disabled I wouldn’t do it, it’s just too hard to beat this literally criminal process.  But I don’t have any choice but to continue on with this fight.

The post Disability: Denied first appeared on Mama Sick.

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.

The post At the Social Security Doctors – The Horror, The Horror first appeared on Mama Sick.

It turned out, no surprise, that my Maquest’s directions to the hotel were…WRONG!  They got us to Newark, but that’s when they stopped being so helpful.  After stopping a couple of times to ask directions, I finally spotted the side of the hotel out of the corner of my eye. Three handicapped spaces for the WHOLE hotel.  I’d write “The Great Eastern Hotel” if I had the time, they were never not filled up.  While we were checking in, we asked if the front desk people knew where the courthouse was.  They said yes, it was very close by, but we decided to get directions in the morning. Having filled up on McDonalds (probably my first time in over 10 years) we didn’t need any dinner and I had packed plenty of healthy and unhealthy (comfort) food snacks.

Tyler had been a little scared of this whole outing.  A few months ago he asked me,”Mommy, what is a vacation?”, something that I feel no child should have to ask his mother and it really broke my heart, thinking of Grant and I s’ childhood.  I never remember NOT going on vacation.   But he and Eeyore enjoyed the amenities offered by the hotel:

and our view:

You can see New York in the far background

Even Eeyore pondered the view:

We watched t.v., had reading time, and Tyler went to bed around 11:00.  With the help of medications I fell asleep a little after 11:30.  David who?

When I woke up, God was I happy that we had stayed over and that I had set my alarm and wake-up call back-up for 7 a.m.  I could not walk, I could not stand up straight.  I was walking as if I was a baby “cruising”.  I woke up Grant and asked him to make me a cup of coffee, while I popped a pain pill and laid in bed, waiting for the pill to take effect.  Tyler had fallen asleep like a dog in our queen sized bed and he slept on.

Even though I was still not feeling well, I had to get up and shower…and iron!  Grant got Tyler up as just the two of us were going to go down to breakfast, complimentary!  Our lives are so pathetic, I actually enjoyed being in a REAL hotel.  I haven’t been in a hotel since they had flat screen t.v!  The hotel served a lovely breakfast.  Tyler is such a character.  EVERY person he meets he says, “Hi, I’m Tyler, I’m four-and-a-half, almost five!”  Most people think it is very cute, some either do not hear him, or at least, pretend not to.  Then his feelings get hurt and I have to tell him that he has a little voice and he is a little boy and people are tall and cannot always here him, or they are too far away.

Knowing we were just two blocks from the hearing, I cut it pretty close, we left at 9:15 as I was supposed to meet my lawyer by 9:30.  I stopped by the front desk and asked about the courthouse. “What courthouse two blocks away?” was my answer from BOTH of the front desk people!  They started to look on their stupid computers but they could not help me.

“Forget it!” I said and we rushed out to the car.

It was a bit like out of a movie but thanks to some kind Newark…ites?….Newarkarians?…and many illegal turns and the wrong way down a one way street, we finally got there.  I was late.  I had called my lawyer’s office while Grant was driving and told them that we had gotten lost but we were close and I would DEFINITELY be there.

At about 9:36, we pulled up to the courthouse.  The plan was for Grant and Tyler to go back to the hotel, chill out, watch television, maybe read or do a puzzle, etc. while I was in for one of the most hellish days of my life.  But what else could we do with Tyler?

And so they left me with kisses, I love yous and good lucks and there I stood, alone.

END OF PART I

(Please note that I put up only part of the story because it is a very long one and I was getting many requests.  As many already know, what happens next is honestly quite brutal and I have been mentally damaged from it, as well as physically.  It might be a couple of more days for the next either part or conclusion, depending on how it writes out.  I plan on having my usual rest of the week, doing Mama Kat’s tomorrow and hopefully Friday Fragments.  Blogging this story will be extremely difficult for me but I feel strongly that sick people who are wondering what a hearing MAY be like might want to experience mine, and that well people should realize what we chronically ill people are going through in these fine disability courts in this country EVERY DAY.  Thank you.)

Also special thanks going out to Cynthia Biaggi, @MomBto3, a wonderful friend who lent me the money so that I could stay in this hotel.

“True friends do not value you for what you can do for them – they simply value you.” Ruhani Rabin

The post My So-Called Disability Hearing, Part I first appeared on Mama Sick.

We are going to get our flat tire looked at today too.  The man who changed it and put on this “not quite a donut but not quite a real tire sort of thing” said he thinks the tire can be patched, saved, and we will not have to buy a new tire, which we really cannot afford, but you cannot dare drive such a long distance on the spare.

I have still to write down all my diseases and medications, there is a 50/50 chance that the judge will let me read from them.  I am afraid I will not remember my more than a dozen conditions, how they affect me; all of my meds, and how they affect me.  This should be a long trial if the judge wants to hear all of it!

I have to pick up more pain meds and Xanax later today, and buy some ice to keep my ice packs cold.  I might even take along some hot packs, maybe there will be a microwave at “the hotel”.  I will be taking my ice packs to the trial, along with my ACE bandages for my wrists and knees.  I honestly use those things every day so my lawyer said to take them to the trial.

I am in such shock that tomorrow is finally the day.  I liken it to when I knew I was going to be induced with Tyler, only this time he will be with me.  I told him we were going on a little vacation because he is scared about staying away from home, afraid we will never come back here.

But like at the end of my pregnancy, my mind just sort of went into a detached mode, not letting me feel the emotions that would probably cripple me.  I knew this horrific thing (labor!) was going to happen to me.  There would be an outcome (a baby) but I did not know exactly what would happen to get that baby, you know?

Grant is feeling more like when they took Tyler away from us due to all of the court proceedings, and so I know he is more freaked out than I.  He will be taking care of Tyler during the trial, maybe going back to the hotel and hanging out until check-out time.  We are staying at the “Great Eastern Hotel” if you get my drift.  We will bring a bunch or books and toys to keep him entertained, and of course his beloved Eeyore.

I don’t know if I will be able to write any more before the hearing although I am going to take my laptop and hope they have Wi-Fi.  I will always have my phone so I will tweet a little, except not in front of the judge!

So if this the last time I speak with you, please, everyone, think good thoughts, vibes, pray, etc., that this part of the nightmare that is my life will end and justice will be served.  I am nervous, but I feel good about it.  I am bedridden/housebound for God’s sake.  I am hoping my judge feels a kinship to me, as a woman, maybe she has some kids, because I know I will weep and I will comment if I am asked to.  During both of my preps done by the lawyer, I cried. It is very emotionally damaging when you have to tell someone EVERYTHING that is wrong with you and EVERYTHING that you take and how EVERYTHIING feels.  Hopefully I will be able to keep my manic mind together, my lawyer will give me a little wave if I am going off track.

Tuesday, July 19th, is finally my day in court.  Please, everyone try to think about me at 10:30 EST.  I need all the help I can get, and know that you will be with me, just a tweet, a Google+ or a comment away.

Thank you.

The post My Disability Hearing Is Tomorrow first appeared on Mama Sick.