Posted 5/21/2015 11:02 PM (GMT 0)
hi sknight, pirouette is right. I would like to help. I had a severe neurological form of lyme due to being misdiagnosed for 20 years. my health deteriorated until I could not work by 2008, and basically just laid down and wanted to die.
I did not know what was wrong I had several psychiatric admissions due to lyme but the doctors did not know I had it. I was first told I was depressed, a drug addict because I was on Rx ativan. then bipolar personality disorder who knows. I was told I had fibromyalgia, CFS, EBV, you name it.
I had a friend who is a Rn like me. Both of us, being RN's, who knew how the system worked in health care. he did have a real mental illness, and did something to his back while working. I still wonder about him. he was highly intelligent, and we were sexual, and I really got sicker afterwards, I keep wondering if he has lyme.
he told me that due to my frequent mental admissions, and the fact I had a history of mental illness in my family I could get disability. my mother was diagnosed in the fifties with paranoid schizophrenia and had a lobotomy. I had never thought of using a mental illness, but I knew there was something bad wrong with me, but I did not know what, and no doctor had been able to tell me. I did not want to be on disability but I had suffered so long, I wanted a break, rest, and peace, freedom from pain.
but also, he said after talking with others at that time, you really have to exaggerate on your paperwork. and this is very true. we did all the paperwork on our own. I did mine. I had to pull a copy of every chart from every doctor I had been to or call them and have them fax my records to SSA. The paperwork they have you fill out is long, and what they will be looking at is your ability to do what is called ADL's. activities of daily living like washing your hair, taking a bath, cooking, going to the grocery store, driving, etc. it is important you tell them that you can't do it or you have to have someone help you do whatever you do. this is very important. as is your short and long term memory function. short term memory loss will definitely impair anyone from doing a job anywhere depending on the severity.
they will want to know how far you can walk, if you need a device like a cane or walker.
all your medications, how often and why you taken them. all your diagnosis. and if you have to take pain meds all the time which would put you and others at risk, if you were on the road driving or working,esp in a field that would endanger someone's life.
you are in trouble because if you have late stage disseminated lyme, like me that has impaired your functioning, The government does not recognize chronic or late stage lyme as a disease that impairs you thanks to the CDC.
Now if you have symptoms like severe neuropathy, headaches, memory loss, muscle wasting etc all symptoms impairing your functioning, it may be better to focus on the worse symptoms and be diagnosed by an md, and with a statement from the md as to how it does impair you from working. he could say like you have severe neuropathy, undetermined origin for example. or you may can get 3 llmd's like I did to say you have lyme. if your lab testing came up positive like mine, this will help a lot.
I got lucky in that all the psychiatric admissions won me my disability. I got it within 5 months. since I am a Rn and worked for a highest wage my last working years, I got a really good settlement because of this. My diagnosis per SSA is Bipolar disorder. But I know better now. One month after taking azithromycin for lyme, it is like the fog lifted off my brain, I woke up and said " what happened ". It felt like I had lived in a dream for at least 15 years, of being polydrugged. I don't take drugs for any mental illness like bipolar now. I never was manic euphoric or anything like that, went on shopping binges, having wild sex all night, then lay down and be in the bed for a month. I do take paxil cause I am depressed over my illness, and ativan to sleep. I am on lamictal but am weaning off of it slowly. I am telling you I went thru hell being in those places scary people, put on drugs I didn't need like depakote, tegretol, trileptal, risperadol, neuron tin, abilify, I worry now, what did all those terrible drugs do to me. My family still thinks I am mentally ill because of my mother. I feel doomed, when every llmd has told me it was my lyme that caused all my problems.
all I know is that I am not crazy. I could work now, if it were not for all my physical symptoms and severe fatigue. I definitely need my disability for lyme and prob will for the rest of my life. I have found lyme is for life, you go into remission and so forth.
also, I had to have 3 people that the SSA people talked to on the phone and interviewed them. I also had to be interviewed at the SSA local office where I live. I am not going to lie, I acted like I was crazy as hell, cause I knew what kind of bad shape I was in, and my life depended on it. One person actually really exaggerated my symptoms, many would say lie. but that is ok we do what we have to do to survive. I also knew I could not trust my own family. They would have had to be too honest. People in your life who you know won't bend the rules a little bit, is not who needs to be helping you get disability. I have talked to many many people on disability and all have told me similar stories. and these are people that really need it like you. it is sad but this is how our government works. It will all depend of you and what you feel comfortable with saying and doing and how bad you want your disability. in my case, it was life or death, survival, or having to depend on someone else to live, and in my case I didn't really have that option.
I don't think badly of myself or anyone in bad shape for doing whatever it takes to get disability. I hope this helps. I am sure there are many who are not as sick and get disability, but life is not fair. These are the people who hurt the social security system. if you need to ask me anymore about my experience you can pm me. jackie