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dexatek
01-06-2003, 08:48 AM
My last day of work was April 24,2002, I came home from work, parked my car and I haven't driven since. I have had enough. I have struggled with this disease since 1990 when I was diagnosed. I went out of work like so many other times on tempory disability but at the end of my 12 weeks I was still not able to return to work so I was terminated(I worked there for 18yrs). So I applies for SSI. I was just notified they turned me down as well. What next? I am using a law firm that handles SSI cases and haven't heard from them yet as to what we do now, but I feel so empty inside, I feel as though everyone thinks I'm faking. All my lab work from CBC to 24 hr. urine to SED RATE are all off the wall. Can anyone help that has been through this ordeal. I don't know what else to do.

Saysusie
01-06-2003, 11:41 AM
I have never applied for SSI, I went out of work after being told that I was faking. I suffered tremendously from stress and filed a workmen's compensation claim. That was in 2000 - I am still fighting!
I was told that Lupus was protected by the Americans With Disabilities Act (ADA) with reference to job accommodation etc. They have a help line with counselors who will talk to you and help you.
Unfortunately, I know nothing about the criteria and process for SSI - maybe someone else on this site does and I hope that, if they do, the will respond to you.
Please do not feel alone, you are not! Most of us have suffered as you are suffering. Most of us have been debilitated by this disease, both physically and emotionally. I am willing to reasearch any thing for you to help you get some answers, just let me know what you need. In the meantime, know that you are thought of and you are not alone!
Saysusie

dexatek
01-08-2003, 09:20 AM
Thank you so very much for responding to my letter. It is so very comforting to know I'm not alone. I've struggled with this disease for so long now and it's only getting worse.I understand what you mean about people thinking you are faking. Someone told me once. I you had a cast on your arm or you were on crutches, people would hold the door and go out of their way to help, but with Lupus they can't see it only you can feel it and the effects of it. Moral is, try and remember the other people's side too, and don't become bitter. But I know that's easyer said than done.

Saysusie
01-08-2003, 10:12 PM
Yes, I also know that people will not believe what they cannot see. I can't tell you how many times my job said to me, "Well, you don't look sick!" I thought, what do I have to do, drop dead at my desk????
Anyway, if this disease teaches us anything, it teaches us patience and understanding - primarily because we need so much of both!
Stay in touch - we are here for you
Saysusie

RoYalPraYer
01-09-2003, 11:20 PM
Hi,

My name is Stephanie, and I am currently on disability (SSI) for Systemic Lupus, Scleraderma, and Sarcoid, and everything else you can get...ha.ha. I was diagnosed 6 months after my first child and she is 10 years old now. I also worked as long as I could with allot of sick days off, until I just could not do it anymore. I applied for SS and I got the same response as you do. "I see what is on your chart but you don't look sick" or "you are so young", I still get that even today. Although going through all this has changed my looks, you know the prednisone. Well anyway, I did apply for SSI, and it took me three years, and lots and lots of frustration. I know it is hard, but please, please, do not give up. Many people are ignorant towards this disease, and that is why they have that reaction, we have to inform them to let them know this is no walk in the park and maybe, just maybe, make it a little easier for the next person with this horrible disease. When I finally got my hearing I chose, (a big risk) not to have an attorney. I just could not pay someone to prove me ill, when it is in the paperwork, you cannot forge blood results or diseases. Well anyway, a month after the hearing, I got a response from the judge saying "fully approved". It felt so good to be able to prove that I was not faking and just because I am young does not mean I am not ill. Believe me, if I could be well again, and go back to work, I would in a heartbeat. Well, like I said, don't give up, you can do this, just pray, pray, pray, because he listens, and he answers.....Good luck and God Bless.

dexatek
01-10-2003, 07:26 AM
Steph, thank you so very much for responding.
May I ask you a few questions about the SSI process. You said you had to go before a judge. Do you have to go before a judge each time your request is turned down? Also you said it took you 3yrs. Is the 3yrs from the time you stopped work or from the time you first filed? I am now being told that you must be out of work 12 months before you are even considered? I know what you mean about working again. I am a medical person myself and have been all my life. I took care of other people not the other way around. I am also a people person and loved the interaction between myself and my patients. I worked at my last and final position for 18yrs. and you know I still have dreams about working and being at work!!
My neice not long ago had to go and have an ultrasound. She was sent to the office that I worked for so long (many officies over 200 employees) she thought it would help break the ice if she ask the tech. if she knew me. The tech said, OH yea, she (meaning me) had a pain in her back and quit,that's what I heard. My neice just let it go. I was very hurt by the comment but also know how true it all is, no one, not even the judge can feel our pain on a daily basis. I can hear the frustration on my friend's and family's voices when they say, How are you feeling today, and if I say no better, they wonder how that can be. I'm sorry for going on and on but it just feels good to get it out. Being a medical person has it's good and bad points. I know what is taking place and what is about to and somtimes I wish I didn't know. Thanks again for listening and your right pray, pray, pray, he is our answer.

Saysusie
01-12-2003, 03:27 PM
The best of luck to both of you, Dexatek and RoYalPraYer and I will keep you both in my prayers!
Saysusis