loner1968

Hi,
Cool new look for the site!
If any of you don't remember me I have posted a few times about my situation with being on disability and medicaid. I posted that i was recently told my the Practice Manager at the pain clinic I go to that because Medicaid "pays for nothing" I will not be getting the proper treatment that I need to be well.

This to me is unacceptable and unethical. This has really been bothering me and I feel I need to step up and do something. I had to stay home today due to pain so I thought I would do some research. First of all I began working at my part time job in 2002. I immediately lost my SSI which I figured was fair since I would be working. I have however recently printed out the 2008 red book from Social Security for disabled working people and there are cases when people work and have SSD and SSI. I want to find out if I was dropped unfairly. I'm sure I need a lawyer but can't afford one So I am trying to do as much on my own as I can.

I am also trying to obtain as many of my medical records as I can for as far back as I can. I would like to prove that I have attempted to find help for my pain and depression for almost 20 years. It is true that our health care system is in a shambles but I do not think this should allow doctors and other professionals to neglect and outright ignore patient health issues. My records would show that I have been passed off from doctor to doctor.

In short this is the deal: I am on disability (which is not enough to get by) I have to work and can only work part time. My disability is getting worse due to lack of proper treatment. I can barely work anymore.

I asking everyone on here to chime in and give me you thoughts, ideas, etc as to where I should start.

I have also posted this on a fibromyalgia forum I belong to. just trying to get as many ideas as I can.
Thanks

Alphawoman

Dear Loner1968,
I'm sure there's a legal agency in your area that offers free legal counseling. I'm thinking you would benefit if you could secure a free health care advocate to speak on your behalf. Contact your city/town rep, your state rep and your federal senator and congressman. Your state must have a government resources guide you can browse to get names and phone numbers of community agencies in your city or state. AARP may also be a helpful resource for you?
Jon Kabat Zinn runs a pain clinic at the U. of Worcester in Mass. It is for folks who have tried everything but, must live with the pain as there's nothing more that can be done to improve the situation. He runs a mind/body clinic and it may be something that could potentially benefit you? It's worth a try if it makes the pain and your life more manageable.

Good luck to you. Sharing helps with all types of pain. Please keep posting on this site and let us know if you've found any help for yourself.

Alphawoman

loner1968

Alpha
Thanks,
looking up some of the info you suggested. It is very hard to get all this stuff straight. I have a notebook just for all the info. Thanks again!

denny57

way to be proactive, loner!

loner1968

Denny,
I've been through this before. I've just been too sick to take action. After being told that my medicaid is actually preventing me from getting proper treatment I fell hard into a really long and deep depression. I woke up this morning and decided that it was time to do something. I am trying to get stuff done before I fall into the pit again.

I guess it's been wearing on me that I have been feeling so discarded and worthless. I know I'm not but I just got so down over this whole thing. I feel like there is nowhere to turn anymore so what do I have to lose right?

Once I wrote a letter and sent it to 18 different people in different roles of the disability and medicaid arena. I did get calls and I did get my situation straightened out. I did it all without a lawyer and had to "tell" on my case worker while I was at it. She was horrible to me and after weeks of stewing I just got up one day and did that. It was really the only way to get action.

I hope I can get some more ideas. I am really done dealing with this. done getting stepped on and done being told there is "nothing we can do."
There HAS to be something other than rolling over and taking it!!!

Freedom1990

Good for you! I know how you have been struggling with this. I lost my disability hearing, fired my attorney, who gave me a face to face meeting with him 60 minutes before the hearing, and that was it, and then I hired a new one for the appeal.

Hang in there! :ghug :ghug

denny57

Right (in my book). I hope you prevail again, loner. Though not because of an illness, I do know what it's like to keep pushing that ball uphill to get justice for myself.

loner1968

Freedom,
was it your first time applying? If so its typical to get turned down. The Lawyers all know this. Just keep going. the system WANTS you to give up. trust me...I know.