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  1. #1
    ElleRoseKay is offline Junior Member
    Join Date
    Aug 2011
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    Indiana
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    Angry Cushing's Disease, denied any disability or SSI

    What is the name of your state (only U.S. law)? Indiana

    I was diagnosed with cyclical Cushing's disease due to a pituitary adenoma (tumor) in September of 2010. I had been suffering it's symptoms for years, and spent 9 months going through extensive diagnosis before losing my insurance at my job in October 2010. When MRI results came back in late September, my doctor advised quitting my job to seek neurological evaluations and get a transphenoidal brain surgery to remove the tumor, seeing at though it had, in retrospect, been giving me problems since I was 19. I'm now almost 28, and i have lost 2 jobs because of illnesses associated with cortisol. I have also left college 3 times. Doing things like giving up and leaving great jobs are atypical of my personality when I am in a trough. A trough is when the tumor is not secreting too much ACTH (creating and over-production of the cortisol steriod). I will suffer Cushing's symptoms while the tumor is active(this is called at peak), and when the tumor is in transition from active to non-active, I will suffer from symptoms of Addison's disease (hypopituitarism) until I gain some sort of homeostasis. Then I am in a trough. Each time I peak, I start my troughs weaker and weaker. The Cushing's eats my muscle away and adds fat. Then I go inactive and the Addison symptoms make me pass out, vomit, and unable to retain food or even water at times. Immediate rejection...or ejection, whatever Most recently, in April, I had to quit my job and stay in bed for three weeks. I could barely support myself walking, lost balance, and stairs were a chore and a half. I couldn't shower alone for risk of passing out, and even if I did bathe, I would vomit right at the end, and my face and scalp would burn and itch. I developed psoriasis on my scalp and my face was peeling. I used to pick plaques with patches of hair stuck on them while I watched TV at night. I think I'm going into some sort of pity party here. What my concern is, I have not applied for unemployment because I was hoping a brain tumor was cause enough to go on disability and SSI so i could go get my brain surgery and remove these cycles from my life. The problem I think I ran into was that it's CYCLICAL, I have periods of life where I am able to do some work. I want to work!!! What I don't want anymore is losing my job as a special ed. one on one at one of the highest ranked public schools in my state, which is only 5 minutes from my house. I don't want to lose my full time infant daycare position, with school-agers "summer camp" for my "summer job"- both these things have happened. I don't want to go back to school and leave because i have kidney stones and extreme fevers and painful migraines. This has happened 3 times. I have not once asked my government for help, I always said fine to life, I went to work to pay back my bills (insurance is a bitch when your dad loses his job to 9-11 when you are 18 and those 'say til 25' laws weren't in effect) and i have long term employments that I have loved and worked with all my heart to get. I been accepted to many schools, and cannot go back because I fear using pell grant money and loans to add to my medical debt, when I know I'll be getting ill right about when something good can happen for me. I call this cyclical nature of things something that hinders my ability to gain employment, I consider having a brain tumor that has had all of the effect on my life, biological and socially and financially, I believe these things result in death. My doctor worries my mother saying things like "she could suffer a stroke or heart attack at any moments notice, even feeling well, one day, all that overproduction of stress will kill her" Now just yesterday, after jumping through all of their hoops, going to every appointment, and sending back every piece of paper they needed, I have been denied. I need help in finding out what the next step is. I am financially devistated, I live with my boyfriend in his dad's home. We live with his two other brothers and we are blessed. If I didn't have a boyfriend (7 years strong) that feeds me and an almost dad in law that allows us to stay rent free, you would see me on the street, vomiting and staying in one spot because I can no longer afford life. I have enough work credits to have payments, up to 781 a month is what the ladies told me, should I be approved. That is enough for me to thrive on, and maybe start a business with my family that can help us all, and I won't fear firing because of 3 week stretches of non-showering illnesses. Ok, that was a long rant, and I sort of edited for time ahah. I really appreciate any extra input or knowledge, my family, boyfriend, and my future children thank you for even reading, because now you may learn of Cushing's Disease and the terrible things it does to lives that are so young. I fear this disease because there are not many advocates, it's not cancer or AIDS, but it's something to fear. 10 in one million, which is why I feel the government doesn't know enough about it to know I need the help. So, guys, what should I do from here? Pro bono lawyers? Do those even exist anymore...maybe that was just made up for the movie I Am Sam. lol, or maybe seek unemployment benefits? I left my job with 2 weeks notice (we used the 2 weeks I had to miss as my 'notice' so I could stop calling the substitute) so I always thought I couldn't get unemployment because I willingly left. I know nothing of the law, this is just what I hear random people bitching about in dive bars! ah anyway, any help is appreciated, I love you, thanks for your interest and your time!!!
  2. #2
    Proserpina is offline Senior Member
    Join Date
    Mar 2009
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    Watching you eat your Cheerios
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    Contact one of the gazillion SSDI/SSI attorneys who advertise their wares, and see if they'll take the case.

    These attorneys will always the case on a contingency basis; in other words they'll get a cut of your back pay once you're approved and if you're not approved they get nothing.

    If you can't get an attorney to take your case that usually indicates that there's little chance of success.

    Best of luck.
  3. #3
    Onderzoek is offline Member
    Join Date
    Oct 2009
    Posts
    748
    Have you filed a claim? One thing for sure, you can't be approved if you don't apply.

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