Living with Lupus: Susie Richards

My name is Susie Richards; I am a 53 year old nurse who was first diagnosed with mixed connective tissue disease in 2000, but then in 2006 I became extremely ill and had to be hospitalized. I was then told I converted over to Systemic Lupus Erythematosus (SLE), as opposed to scleroderma. I was on FMLA for 3 months, causing a great deal of financial hardships for both me and my family. Eventually I was able to go back to work, but not in the same capacity. I had to transfer to the after hours emergency care center, where I worked full time, and then part time, until I suffered a bacterial lung infection in 2011. My rheumatologist advised me that if I wanted to live, I could no longer work. I was devastated, nursing is my passion. I was advised to apply for social security disability benefits, but I did not know that even with all of my complications I would still be denied when I first applied. I also didn't realize that you do not receive any benefits for the first five months of your disability. I've come to find out that about 90% of all applicants get denied the first time around, an amount that is unacceptable. I was advised to get a disability lawyer that would get 25% of my first check, which was something I really couldn't afford. I was angered at being denied and I wasn't going to pay a lawyer or other agency to appeal for me, I decided to handle it on my own. I began by applying for the first appeal called reconsideration. During reconsideration a different person or panel reviews your file then makes a decision (there are three other appeals you can file for, if you are turned down for reconsideration). Furious about the situation, I wrote a twelve page letter showing them what SLE was really about. I acquired letters from doctors to attest to my inability to work, gathered copies of my hospitalizations, medical records, etc. I then took all my information to the Social Security Administration (SSA) office, had them scanned and added to the previous file. I received my approval for benefits within 30 days. It is possible to get benefits for yourself and this is what worked for me, we all have our own path but the important thing to do is keep trying.