[drharleenquinzel]

Does anyone out there on SSI/medicaid ever feel trapped? I'm still in my 20s, I've lived with a chronic illness my entire life and I have had 4 major (open heart) surgeries. I don't want to be living under the thumb of health insurance and their rules of what I can and can't do with my life but I need insurance in order to live. There is not a single second of my life that can be without medical insurance and I cannot, unfortunately, work full-time to earn it.
I just hate being so reliant on this organization...they're so fickle and judgmental and restrictive in areas where I feel it is none of their darn business.
There was a period were I couldn't even check the mail - I was so frightened by all of the letters they sent me, all of the jargon was confusing and just overwhelming. I don't know, thankfully, things have seemed to calmed down since I got off SSI (and I will never, EVER go back on it - I don't care if I have to live with my family for the rest of my life, I will never take their money again)

I was just curious if anyone else had anxiety or issues sprung from being dependent on these programs?

[Fresia]

Yes, I hear you and completely understand. I hate having my information available to anyone at these various organizations when I've needed help and to answer to them when they are such private things. It actually makes me physically sick with anxiety and difficult to control at times. Not an easy trade-off asking for help.

I dread the mail as well. It took some getting used to learning the rules, regs, terminology, and I have learned to ask a lot of questions to get to know the system to 1. not get lost in it and 2. not get shorted by it either when something should be covered and wasn't.

I have learned that whether mail from a government organization, or an insurance (government or private), I cannot hide from it or delay it; I must look at it immediately even as much as I dread it. As everything in both systems takes time to resolve if there is a problem. It causes more issues not to act promptly.

If need help, there is nothing wrong in asking for it. At what cost, everyone has to determine for themselves. For me, if it means the difference in not getting the medical care I need or not, I will ask even if it means sacrificing my privacy or the risk of embarassment. My health is too important even over my anxiety because if I don't have my health, I don't have anything.

I'm glad you are finding peace being out of the system now and not having to rely upon it. I know this is a relief. I have qualified for Medicaid at one point in the past, but only SSDI & DELL now for some time and so I still have to answer for things to have it. I can't survive w/o it right now so I have to keep my anxiety at bay in the meantime for the dependency.

I do understand your frustration. In the meantime, I hope your health is improved and you are doing really well. Will be thinking of you and sending you the very best of wishes.

[sunsetsunrise]

I am so glad to hear that you are off disability and doing better. I got on disability recently. I couldnt believe what happened to me when I was put on medicare, which happened immediatly because it took more than 2 years to get disability. I cant imagine how much money is wasted with the crazy systems they use. I cant even have an exam for eyeglasses. Medicare does not pay for it. And I have no clue what they are saying in all of the communications. But I have gotten help to figure out the basic logistics of it all.

Because I am low income the state pays for my premium deductable and copayment. But only if I do not get a better plan than the bare minium. Its all confusing and degrading. I am on disability for mental reasons. And I lost my therapists when I got on disability. Turns out they will not cover licensed clinical social workers which is what my hypnotherapist is. And my pdoc says they only cover 50% of her fee. That the supplimntal insurance would cover the rest. But the state wll not pay the premiums and deductables if I buy supplimental insurance. Its all very interesting to say the least. I have become much worse emotionally since I got on disability. Much worse. So yes, I surely know what you mean. It seems absurd that they make medicare so hard to have. I do not know how senior citizens can figure it all out. I cant. Anyway, good luck

[drharleenquinzel]

No, I was misunderstood. I am not off disability - I am still using Medi-Medi. What I am off is SSI - supplemental security income. THAT was the killer. It just controlled every little thing. Medicare-Disability is fine and not terribly restrictive but Medicaid is and just a necessary evil at this point in my life. I'll ALWAYS be ill - that's just a fact of my life. I just hope I can play my cards right so I get into a situation without compromising my health so that I can eventually get off of Medicaid.

I think what is most aggravating is that I have an invisible illness that is from birth and that the folks who work in these social services just don't quite get it...so explaining myself over & over again is tiresome.

[sunsetsunrise]

Thanks for the clarification. Medicaid in my state is wonderful. I wish I was on it. I wish things were more humaine in this country. I am convinced that someday things will be much better. Although I do not think it will be for a decade or two. I also hope that by then there will be much less illness of all sorts. Blessings for you

[cocoa58]

I completely understand about this. I am well educated and have a lot of job skills. I wish I had not gone on disability at all. I went on because family members said I needed to.

I have since rejected my family's opinion. I realized at some point in my life that I was the "underdog" and the "caretaker" in the family and that some of my problems relate to being forced into that role "by" my family - because I do good work! and they want me taking care of "them" and not living my own life.

I actually did get off SSD (Social Security Disability). I worked for 6 months or so, and it was full time work - so when I reported it, they ended my disability.

When I lost this job because of budget cuts, I lined up new interviews. But my husband was worried about money and worked on me to convince me to get a lawyer and go back on disability.

So I've been back on it for years and have never resented anything more!

I don't believe I need it - I think I have learned to manage my conditions enough that I can work like anybody else.

But now I live under the rules and when I did get off for full time work - it wasn't easy because SSD sends your employer a letter - then I was confronted about it. And this led to my being let go ultimately, even though the job went on for a while.

So there are just no easy answers - but I really regret I did not stand up for myself and problem solve for my situation better. But that's hard when you're down and out at the time.

Anyway, this is my story. I do work part time and right now am looking for work anywhere I can find it. Even if I get full time - I'll get off SSD and then I'll be free - might be poor - but I'll be free, one way or the other.

Oh and I'm on the "ticket to work" program for SSD - this is a big joke! I've never had success trying to work with this program.

[jbug]

I am on SSD and haven't looked back since going on it. I fought it tooth and nail going on it but ever since getting it I know it is the best thing for me. I know I will probably never work again and am coming to grips with that.

I went back to school and almost got a diploma but when it came time to do my internship I couldn't do my internship because going to it every day made me regress a lot. So no worky for me.

I am on Medicare/Medicaid. Here in Arkansas you can get a different insurance in place of the Medicare and have Medicare pay for it and still have Medicaid. I did this for a few years and loved it as I had dental, vision and some awesome extras. Then the insurance company decided they didn't want to cover Arkansas anymore. So now I have straight Medicare/Medicaid. I am hoping that when the reenrollment period comes around again I can change back to a different company that is similar to the one I had. The company I am hoping to go to also has Part D so that is good. I need dental as my teeth are horrible. But medicare doesn't pay for dental.

Jan