Reflex Sympathetic Dystrophy Support Group

Hi everyone!

Well this has certainly been a trying week for me! Last week I got a notice from social security saying they were stopping my payments effective immediately because they believe Im no longer disabled. Why? Well Im not getting enough money for my care I need. I get approx 980 a month and living and medical expenses way surpass that and Im not able to get Soc. security supplimental. Also back in 2009 I was forced to go back to work on a part time basis because my husband had lost his job and my child was diagnosed with autism and she was kicked out of school which I needed an attorney and of course hurricaine ike. So I went back part time dealing with intense pain to save our home and get my child a lawyer to get her back into school. I did this for a year and then I cut my hours back to 10 hours a week. I had to stay part time because my child needs to go to a special school and needs special tx as well as I need more money for my own medications. Well in 2009 I went like 1000 over the limit and they have decided that is suppstantial work! What???? I have now had to hire an attorney and pray he can get it back for me! There is no way I can work full time. My RSD is spreading and I have a pain pump etc...I take a lot of medication and see docs constantly! What am I gonna do!!!! My husband doesn't make enough to pay our home and my daughters medical needs as well as mine! I see people all day long who portray being disabled yet they are out their on skateboards etc...get my point! Im so frustrated and depressed. I have had to cut out not only all my daughters therapy for now but my own medications to try to make ends meet, but Im suffering big time! Im trying to help myself stay sane and be a good mom, but social security is making it impossible. Oh and to make things even better, they say I owe them 50k and they want to know how I intend to pay it back! What? I have no money, they took it away!!! Anyone been thru this! Please help!!! Thanks!

All of those things sound awful and the stress on top of RSD I can't even imagine. Unfortunately I can't help as I have no experience with social security. But I do know what it's like to have that kind of financial situation because I'm losing my house to pay my brother back for helping me last year get two surgeries. All of this kind of stuff can be very overwhelming and I just can wish you the best. I wish I could be more helpful and I hope it works out for you. Take care of yourself in this!

gail

What does your Doctor and Lawyer say about this.

basically he has said all we can do is hope that they will listen. He said he has had a ton of reviews and "overpayments". I think I get about 19k for the year my medical bills and my daughters because when I made the overage that is when I went back part time because all hell came upon me that year. My husband lost his job, my child was kicked out of school for her disability that was just diagnosed as autism and we had hurricaine ike. So what do you do? Im a nurse by trade and my though was if I can just get us over this hump then we will be ok. But then my medical bills as well as my daughters increase significantly. So I did back off the time I worked. I was working 15 hours a week. Now I only work 10 a week and that is all I can stand not taking pain meds. I swell up and the pain is awful. I have a pain pump but my employer doesn't know that. If he did I'd be fired in a moment! So my lawyer thinks this, first off they judge your "back to work trial on a full time basis: I didn't work full time ever. Plus they also adverage your pay at minimum, well I don't make minimum. So he is hoping that he can get my by on that as well as my medical cost went up with my child. What do you do when your child is diagnosed with autism and has no insurance and needs treatment? Oh and she was suicidal in public school because she was being so badly bullied to the point that her own doctor says she can't go to a public school anymore, she must attend a private school, which she is in now. The past 2 years of treatment has gotten her to a good point and her doctors say with this early intervention she will be able to lead a productive life, without it, she will be "disabled" and have to rely on social security and that is not what I want for her. She has potential to get past all this. But in the past month since I had my money taken away I have had to take her out of her social skills class, her counseling, her writing therapy and now her symptoms are returning, the rocking and crying etc...all I can do is watch while the hard work we put into all this in unwinding because of the govt which I pay money to could care less about any of us! I and her truly need social security. People out there who abuse it somehow get away with it. My husband has a cousin who is on ss and why? because she is depressed because she is gay! What? That isn't a reason, many people are gay and work and do their thing. Get over it and quit sitting on the sofa all day. Yes I do understand that there is some dibilitating depression, but she is far from it. She goes to partys and lives at home with her parents still and is 30 years old. Yep she is definately disabled! That is what makes me mad! If I cant get my money back I will have to have my pump removed and basically I will be back in a wheelchair again because I will not be able to walk! I just don't get it!

Social Security rarely understands RSD/CRPS. If folks get on SS disability it often takes a judge, or a court or an appeals court and the docs and the lawyer has to be sharp. I's not right but you have a lot of folks understanding. Then you got it and suddenly they think you are well and can go back to work again from an illness that rarely goes into remission and most of the time gets worse. From what you say, you show signs of worsening and so they put you under such stress now that it is sure to get worse.

Know you are in my prayers and I send hugs.

Rev.

mengbrock

I'm so sorry you've gone through so very much and having been forced to work on behalf of your child. I would have done the same, somehow, someway.

All of this has to have caused you much anxiety, fatigue and depression use that along with your medical files when getting your ss back.

Our son was without medical insurance for years when my husband lost his job.

I'm giving you a link in case you've never heard of this- It's called Healthy Families and it's only for kids. If your child doesn't qualify for medi-cal (medicaid in other places) Healthy families may help. There are levels to it. For our sons level the one for the lowest income we pay $5 dollars a month and $5 dollars each time he goes to the doctor. I usually pay $15 at a time. You also get a month free each year. Then the other levels are a little higher, but affordable.

This is for families who aren't poor enough for the medi cal programs, but are still considered at a poverty level. We're a family of 3.

Enrollment

http://www.healthyfamiliesenrollment.org/AboutHF.aspx? _kk=healthy%20families&_kt=7cca9584-7e98-47d0-8b52-d4d22a1fc214&gclid=CLzms4-P-a0CFcUZQgodBHU7tg

and the main site- http://www.healthyfamilies.ca.gov/Home/default.aspx

It makes me angry that your precious child was bullied. There's suppose to be laws against that now. The school should have punished those involved.

You'll be in my thoughts and prayers,

~Twinkle