SSD Finally Here, What Now? Complicated Case

Discussion in 'Fibromyalgia Main Forum' started by PrariWolf, Mar 21, 2007.

  1. PrariWolf

    PrariWolf New Member

    I was finally approved for SSD, my disability acknowledged from Sept. 2004 (including 5 months waiting period, backpay to Jan. 2005). As my case progressed over the last 3 years, it was complicated by a diagnosis and treatment, under Medicaid, for late-stage ovarian cancer. I have just finished my 6th out of 9 anticipated months of chemo (the fatigue and sickness from that makes it look like the fibro was just playing with me). I spend a lot of time in chemo-induced confusion on top of my other symptoms. Ok, that's the picture, here's the question.

    I drained my own and a good part of my parents' retirement savings to support myself. I've paid them back, but I'm afraid Medicare will change the rules on my care (Medicaid covered the cancer treatment wholly) and that I will end up using this back pay not to get back to some level of dignity, but have it grabbed once again by the government. I was hoping to get myself into a stable housing situation, in a small house or condo where I won't be at the mercy of a landlord. I don't qualify for SSI. I've heard exceptions can be made for catastrophic illness, but I suspect they pick you clean first.

    I don't even know how they change me over from Medicaid to Medicare, and no one I ask (social workers at the cancer clinic, state aid workers, SS people etc) seems to know anything either. Even my disability lawyer doesn't know, she's never had a case like this before! I feel so in the dark and so scared the government is just waiting to screw and rob me again. Anyone have any knowledge or can point me in the right direction for some easy-to-understand answers and advice?
  2. obrnlc

    obrnlc New Member

    hi prariwolf,
    i have no words of wisdom on this one, only words of support! If SSA can't give you any answers (if you could just get thru to a real person!!), how about a medicare number?
    Or--your medicaid case worker? if they backpayed you til 1/05, that would make you medicare eligible jan. 07, and i don't think the insurance is as comprehensive as the medicaid, but not sure. Is their any info on the website (

    perhaps a congressional representative could get involved in this by finding out WHO DOES KNOW the answers, you need to focus on healing yourself and not this BS!
    I can understand your fear of the gov't taking it back--maybe you can go ahead and invest it in that little condo, or stick it in a CD (seen some good rates on a 3 mo. CD!) and stay with your family til you finish your chemo, then you would have someone to help you out while you are going thru this overwhelming exhaustion, other side effects.

    then when you are feeling better, will have a little interest built up and if they do try to take back a portion (evil, but gov't often is!) you will have the interest.

    Hang in their and good luck with the last 3 months of chemo--you have the battle 66% over with, only 33% left to go!--good luck--L
  3. calishygirl

    calishygirl New Member

    once you've been on SSDI for two years. I noticed that you live in Southern Arizona. I live in Sun City AZ, and I have an excellent supplemental insurance for Medicare, and I do not pay a premium for that, just the Medicare premium.

    You need to go to the Medicare website and work your way through the site. You want start with "Plan Choices", which is on the left side of the page. Then click on Medicare Advantage Plans, and then click on the bottom "Medicare Options Compare".

    I signed up for MediSunOne, through Sun Health. I do not know what is available in your area. The co-pays are decent, for both doctor's visits and generic drugs. I don't know about chemo costs.

    Also, depending on your income, you may still be eligible for Medicaid, and some other assitance. Your Medicare Supplemental Insurance Provider will go over all that with you when you sign up.

    Congratulations on getting your SSDI approved, and I will keep you in my prayers with regards to your cancer. I have a niece who has had cancer since 11/14/06 (dx'd 1 month after her 18th birthday), and she is completing her radiation this week. (Six weeks, 15 minutes a day, 5 days a week, on top of her chemo.)

    Many blessings to you.
    [This Message was Edited on 03/22/2007]
  4. PrariWolf

    PrariWolf New Member

    Thanks all, good to get some input and emotional support as well on this. That helps alleviate my fears a little. I am not staying with family, I live alone which is a whole 'nother story. I did well when I was employed, so my SSD is apparently a bit on the high side; that is why I doubt I'll qualify for anything extra. Yes, I'm in Tucson, so our state program is not exactly the same Medicaid here as the rest of the country, it's called AHCCS (Arizona Health Cost Containment System).

    Anyway, this means there is no federal Medicaid worker to go to, only state people who don't seem to know anything about transitions or much else. When I originally was put on it, there wasn't even anyone to guide me through which plan was right for me, I had to choose blindly and hope for the best. So, now one person tells me I will be contacted, another says it's up to me to contact Medicare (but has no idea how), a third gives me a stupid look and changes the subject because they have no clue. I have only food stamps I only recently qualified for (because I'd had an IRA), which will end now. AZ's state programs are abysmal, btw. Not much aid available and it is very low $$.

    Understaffed, people don't know what they are doing. (I had AHCCS cancelled twice due to someone's not knowing the rules.) Few docs even take the insurance. I am hoping Medicare will be better, but I'm so afraid of the costs. From what I read here, even with it, people are driven into the poorhouse. I worked hard and paid into the system, why should I be treated like some worthless bum when I am only trying to get what I paid for?

    Thanks for the advice, esp from Sun City. I hope my own case goes smoothly. I guess I'm a little cynical because of what I've been through, and I suspect that all this stress has contributed to my getting the cancer, which is after all a disease of a whacked-out immune system and nothing whacks out the immune system like year after year of extreme stress and chronic pain. It's good to come here and at least vent some fears.

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