friends help: My disability claim was denied and I need advice. - Help.com

Thanks, and good luck to you both as well. I applied September 2007 and just received my letter the week before last then I had to call to get the appeal forms which just arrived.

It was a grueling process. They assigned someone in the local office and at the state office. The first told me she looked at my salary history and I’m made too much money to ask for help. I was a systems analyst. I didn’t make a ton of money but I must have made more than her because she was angry. I am single with no children and have always taken care of myself. But I got cancer. I had 3 major surgeries in less than 4 years and went through a lot of other things. I also had other health issues before the tumor and the tumor parlyzed me (paraplegia). I went back to work but my employer fired me on the last medical leave. One of the surgeries left complications and I was overwhelemd with stress. I can’t sit long at a computer any more. So I’m on and off when I can. I have other symptoms since like swollen legs from sitting at the desk too long. I have no retirement, no savings, no home, no assets - every thing I had on the plus side was gone and used to live before I admitted I needed help. So I applied. I’ve been a burden on everyone and became too sad.

Basically, I started the process and filed on line. It took me I think 3 weeks to finish the application because I had to keep taking breaks. I tried calling the contact at the state level a few times with questions and he NEVER called me back. My primary care physician refused to fill out the paperwork because she wanted to make money and said she wouldn’t fill it out until I came in an paid the office visit fee. My health insurance had been cancelled and I had no money to pay her so her nurse ‘kindly’ offered to send my medical file to the indigent clinic.

I got a few letters in the mail from the state contact - form letters. I was sent in December to see a psychiatrist for a mental evaluation. I have White Coat Syndrome (from bad medical expeirences - like my doctor diagnosed mild arthritis in the lumbar spine and treated me for that for about six months when I actually had a malignant spinal tumor/cancer and the tumor was found by a chiropractor only 2 weeks before the neurosurgeon said it would have cost my life). Just background to explain - so I called the state medical board and asked for information on this doctor they were sending me to. I didn’t know him and my body’s physiology goes haywire in a medical office. They told me he had a formal action and she gave me a lot of information plus a link to the official document about that formal action.

The psychiatrist had been on probation for 2 years. He was diagnosed with bipolar disorder and had gone off his medication. He was having serious mood swings with his patients and staff. He also admitted to smoking mar*i*juana. I left a message for the state contact to try to talk to him about this. I had also received a packet of maybe 20 pages of questions that I had to fill out. The contact never called me back and you have to cooperate so I went to the appointment.

My back is hurting so I have to take a break here but I will leave this on my screen and tell you more about the process - I just need to rest and lay down for a short bit.

I’m back and will pick up where I thnk I left off. Sorry if this is more information than you wanted but it might be helpful to hear.

I got to the psych’s office a little early. I noticed the receptionist was gone but the doctor kept pacing around. Then he finally took a guy in that’d been sitting there. Not 5 minutes later, that man came running out of the office, he was crying and upset. The receptionist had come back and she tried to stop him but he jumped in his car and took off.

When it was my turn, I understood why that man ran out. I wondered if the doctor had gone off his meds again. He was having severe mood swings. He rarely made eye contact and he snapped at me at few times surprisingly. An example - the 20 page form I mentioned, he asked if I had sent back everything I had received paperwork wise to SS. I said yes. He went on a rant that there was a long questionnaire that gave a lot of information and he said I hadn’t sent it in and he needed it to get information on my state of mind, etc. A couple minutes after he stopped, he opened the file and pull a copy of that very questionnaire out and then went on another rant because I “used too many words to answer the questions” and “in all his years of practice he’d never seen anyone write as much as I did” then he flipped to the back side of the pages and said “look you even continued on the back in some cases”. But to be fair, that form was about the only chance I had in the process to speak on my behalf. He said something about using that many words was a sign of being overwhelmed. But I wanted to ask him - didn’t you just give me a lecture about this form and here you’ve already gone through it??? He scared me. He focused on things that had nothing to do with my disability claim. I had to go through my resume, birth order, childhood, education, jobs, reasons for leaving jobs. He asked me questions about abuse, my parents relationship, wanted a list of any psychiatrist or counselor I’d ever seen. Many things had nothing to do with my health or ability to work. He asked about my friends, hobbies and the biggest problem he had was my marital status. He went on another rant because i have never been married. I tried to explain that was by choice but he wouldn’t listen. I also tried to explain that I have had nightmares for several months about falling in the street and being paralyzed and having someone coming toward me with a machetee or being in the hsopital waiting for another surgery, being told I have another cancer or waiting for another test. I don’t sleep and now I am afraid to most of the time.

At the end of the appointment he told me he thought I was slightly depressed. I really haven’t been out of the house more than a dozen times in a year and I avoid my friends and I have trouble moving forward and changing anything. My health is worse than ever and I can’t work and the stress of that is maddening.

Then he told me if I was his patient he’d write a letter immediately to take me out of work and get my claim approved. I was shaking by the time I left there.

I left a couple messages for the state contact over the next few days but again he NEVER returned my calls or acknowledged me.

The next letter was for a physical examination in mid January for another physician I didn’t know. That was worse than the mental eval but I have to get off the computer again. I’m having a bad day today and in a lot of pain. I may not get back to this until tomorrow but I will share some of that so you are prepared.

I have a few minutes so I wanted to share some on the physical evaluation. The doctor was mean and treated me horribly (almost like a child and he was definitely a control freak). He would only allow me to speak when asked a direct question and only to answer the question as briefly as possible. If I tried to talk or elaborate on an answer more than he wanted, he would throw up his hand in front of me and make this sound like “bup bup bup bup” until I shut up. He kept telling me I was not cooperating with his process and he yelled because my voice is soft then I broke into tears.

You get emotional - this is your life and your survival. You’ve already gone through some hard experience with your health and he tore me apart. He yelled at me for crying. He said I had one minute to pull myself together or two options. He said he could not handle tears or emotions and they were no allowed in his office. He said if I couldn’t pull myself together then he could sit me back out into the waiting room for a half hour until I got in control of myself or we could just forget about the appointment altogether. He said he really didn’t need to have the appointment.

He only had 1 page in my file and it was a one page report from an MRI I’d had on my neck. He had no information on my tumor/cancer or treatment. I asked he if needed me to call the doctors from his office and get the information but he shut me up again and said it wasn’t my job or my concern or my business what he had. He said don’t worry about it.

I was so upset (plus with the White Coat syndrome) my body was so crazy that I felt like something was sitting on my chest. He looked down the back of my pants. He did his exam and stuck me with something that I guess was supposed to be sharp but I couldn’t feel it. I could feel that something was there but I couldn’t feel sharp. He told me to lay down on the table and instruct me to move in different ways and then he’d grab my leg and shove it into my chest. He moved me in ways I can’t move anymore and didn’t care that he was hurting me. My hip and back have hurt worse since that appointment but noone cares.

He did help me get up. I couldn’t get up by myself. Then he sat me in the waiting room and said the nurse would come get me and write down my meds, take my blood pressure and do a vision test.

She was just as “pleasant”. One of the side effects of chordoms is having problems with hormones, thyroid, pituitary, etc. Many of us get hypothyroidism in some form and with my physical limitations I have gained a lot of weight which I can’t seem to get back off. So the nurse did the vision test, wrote down the name/dosage of my meds and took my BP which was 203/117. She told me that since she was overweight and had lost her husband a few years ago she could talk to me about what my real problem was. She said that I’m single and where other people have a heart - I only have this big, empty hole. She said so you stuff yourself with food trying to fill that hole and comfort your emotions.

I’m not disabled because I am single. That is by choice and I’m sick of that coming up in these evaluations as my big problem. I’ve had several opportunities but I haven’t met the right guy. If I do, fine and if I don’t -that is fine too. I need help, not a spouse to survive. It would be nice to have someone to love but I seriously doubt that any man would have wanted to stand by me through all that I have experienced. It was hard enough for me to do.

I was in a hysterical cry after I walked back to the waiting room and my Mom had gone with me. She said sit down and tell me what upset you. Then the doctor came running out and said who are you to her? He told her “Oh we got along marvelously” and said has she told anyone that she cries like that?

How are you supposed to just detach from your own life and having people like this making decisions when they don’t know you, your history and they don’t have the information about what you’ve been through?

I tried to call the state contact again but again he NEVER called me back. He’s never acknowledged me but every letter said to call him if I have questions or concerns.

My letter from them said they denied me, they agreed that I could no longer do the kind of work I’ve done in past jobs (if I have had any) but they feel I am capable of repetitive tasks.

What is that supposed to me? What I have heard so far is most everyone gets denied the first time and on the appeal. That many people die before they get that hearing. That I have to get an attorney to fight for me and that I have to fight this. I’ve been advised to get as vocal as I can.

I have been through so many things since my cancer diagnosis and treatment began. I feel like I have been fighting for my life for six years. Medicine says that chordoma patients have 7 years after their first tumor is found and I will have my 6th anniversary in June this year.

I don’t like to think of life in terms of how much time I have but it makes you aware that we are not immortal. I think about fighting and I am so tired and my pain is worse than ever. I’m afraid of doctors and they only continue to hurt me. I’m trying to get myself to leave home more but soon I will have to give my car back because I am out of money and I can’t work. When I think about having to fight and maybe spend the time I have left fighting, that is not what I want. I want the fighting to stop. I want to have some quality with whatever time I do have. And I also want to not worry about leaving all this debt these years of fighting have created and leaving that for someone to worry about who shouldn’t have to worry about that. I know I have been a drain on my family and friends. I would be on the streets if it weren’t for my Mom letting me stay here with her. She is not very well and she tells me often that she is ready to die. I’m stressed out of my mind some days.

Anyway I am going to have to get off the computer in a minute. I appreciate the shoulders and listening to my story of SSD. And I want you to know that I am trying to move forward with this. I am going to fill out the appeal paperwork today and mail it in tomorrow. I’ve also contacted a local reporter and they are going to interview me on Monday for a story on the news.

When you go through a health problem and become unable to work, you really lose most of the rights you had. Your medical records and the details of the life you’ve had. They want to hear about all your dark secrets. They put you through impossible evaluations. They assign people to be responsible for coordinating the process and they never follow up on paperwork or make sure they get what is needed. How much money do they spend on this process? How much does it cost the people who need help.

I listened to the President talk this morning. I try to support whoever is in office and keep my thoughts ot myself. But I listened about how we need to care about other countries and we’re sending money to Africa to help them fight Aids. What about our citizens? It made me angry. I do care about helping others and I spent my life helping all sorts of people and paying into a system that I never expected to discriminate against me. I’ve supported my country, I have voted. I’ve donated time and money to help others. I’m really hurt now that it is so hard to find help. I know life is not quid-quo-pro but I always thought that I was a generous, caring, compassionate person who helped often without being asked. Now I feel alone. I know my Mom cares but it mostly feels like she is the only one.

I need to get off the computer and rest my back. I am sorry for sounding down today. The denial just affected everything and I don’t know really where to start.

Wow, doesn’t it make you ’sick’ (sorry for any pun) to think about the state of our system for the disabled. I heard about all the problems but until I went through this first part I didn’t understand.

I’m like you and we didn’t sit back one day when we were little and think “Gee I want to be disabled and live on government checks when I grow up”. I have felt treated like a criminal and at least in the court of law if you are arrested you are considred innocent until proven otherwise. With this process, you are a faker or something until you fight. We had to fight life to get this far and many just get tired of fighting.

I have always been a caring and open person. I have always accepted people no matter what and never had feelings of discrimination for any person or group. As I look at these forms it almost seems like you an be an illegal person (breaking the law to be here) and they’ll help you without fear of legal consequences. We have how many homeless people because of this process. It makes me ’sick’.

I agree - why can’t they work with the doctors who work with us and know what we can and can’t do? My employer fired me and insisted I go on disability. My doctors said I should have gone on disability six years ago. But I had these two lousy appointments and in an hour these guys hurt me and had this effect on my life. And they don’t care if they have the right documentation. It is ridiculous.

I hope you get your hearing soon. I hope it gets approved. You’ve been through enough and you deserve to get the help you need.

By the way, did I share that I contacted a local reporter and told her my story and she’s going to interview me next week for the news. If I have to fight, I am going to be as vocal as I can be. So this is a first step.

I didn’t get my paperwork filled out today so that is my priority tomorrow. I went out to spend a couple of hours with my friend Scott who just got out of the hospital. He had a chordoma too and an 18 hour surgery. So I spent a couple hours celebrating his life and survival. Then I came home to the first call from a creditor. So I have to make that my next to-do after I file this appeal. It is too bad we can sue the government on behalf of all who struggle because of this process. I have days where I am so overwhelmed with too much to deal with and I’m not really sure I can fight anymore. Then I moments where I get so angry about it that I try to get a little more rest so I can stand up and fight.

Keep me posted and I will do the same. Good luck with your hearing.

I’ll send you a quick email tonight just so you have mine too. My name is Diane and my email is also on hotmail with knead_me at hotmail. I just learned how to change the name on this site today so I changed it to kneady (my email that I set up when I got my massage license). I was so excited about changing careers but I didn’t really have a chance because of the tumor.

I worked most of the hours I was awake before I got sick. In some ways I know getting cancer was a blessing because I changed my priorities and made time for the people in my life.

Thanks for the kind words about the weight issue. I can’t believe the nerve of these people and you are right. I am sure for every legitimate claim there are some that aren’t. I miss working. I hope one day I can work again. But now I just can’t.

Have a nice evening.
Diane