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Hi Everybody,

My name is Donna. I've been reading this forum for months and have really been encouraged by everyone but have never posted. I am new at all of this potsy stuff. I had a laproscopic cholesystectomy (gall bladder surgery) last March, had problems with SOB and low sats, and was hospitalized twice in the next two months with every test known to man. To make a long story short, I was dx with POTS by my cardio and internist around Thanksgiving. I was put on Toprol XL, Zoloft, and Midodrine and I am just now able to drive to the store etc. I still can't drive three hours to the Mississippi Gulf coast to see my children.

I feel like most of you do on most days. CRAPPY!! :) I have some good days but more bad than good. I am a quilter and I am trying to make quilts for my grandchildren as one of my daughters lost everything in Katrina and she has four children and bedclothes are expensive to say the least. I applied for social security disability insurance. I have worked all my life and have paid in the max to ss. I got a letter today saying that I was turned down because my condition is not severe enough to be disabled. I am an emergency room nurse, and I can't take care of patients laying down, which I have to do most of the time. I can't even sit in church, I sit in the way back with my feet up. Can't even sing half the time because I get out of breath. They said that I have sixty days to appeal, but I am new at all this. They said that because of my age, I was not severe enough to be disabled. I am 57 years old. What do they want me to do? Go back to college and graduate when it is time to retire? Sorry, y'all, I am just very frustrated right now. Do y'all have experience with the social security administration. I am just frustrated and depressed right now. I would like nothing more than to go back to work. I love my job and love being a nurse and taking care of people. Don't they understand that this is no fun way to live. Oh well, any advice will be appreciated. Thanks, Donna

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I am not sure where it is on this site but I HIGHLY recommend you look online for a private email list calle


It is STRICTLY a disability information site about getting, fighting appeals and maintaining disability. Whether thru employer or Soc Sec.

EDIT here is the site, I have it bookmarked!!


Please sign up ASAP and explain your situation. They have over 2000 members and EXCELLENT legal tips!!

Best of luck to you and sorry about your situation.

I went on diability in 1990 and am now 49.

You need documentation to explain your limits in a clear manner. do not give up.

Take care


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Hi donna welcome to our potsy group!

Now that is a bunch of bull what ssdi told you.. in my opion its crap!!.. I am 24 and i am on SSDI.. I got approved when i was 22 and filed for it when i was 20.. (though I had been on ssi from shortly after birth till I was 18 and the y booted me off saying that I was no longer disabled! HELLLOOOOO!!!!!!!!!!)...

But my point being I would strongly suggest that you appeal this.. and fight b/c you are entitled to benfits my dear .. my good ness you have paid into it for how long!! I would fight it ...

hey i'm a quilter too.. I love to sew!! maybe we canbe online quilting buddies!! :) :)--god bless your daughter and grandbabies for having to live thru Katrina.. my prayers are with them..

take care and welcome!!

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Hey dizzy,

Thank you so much for the encouragement. I will have to send you pictures of the quilts I'm working on. One is batman and two princesses. I can't believe they told you that you were no longer disabled. HELLO!!!!!!!!!!!!!, :) is right. Thanks for your prayers. My kids are actually doing great considering what they have been through. Thanks again. Look forward to talking more. Donna

Thanks so much Sophia. I will look into it. Donna

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Hello Donna, so glad you decided to post. I?m sorry you got pushed over into POTS by your surgery. That stinks that even attending church and singing is a trial.

Please don't take anything SSDI says seriously! It's a whole different world. Trust me when I say that they don't understand your limitations and it is extremely common to be declined on your first try. A younger person whose doctor claims is totally disabled can get approved rather quickly, while an older person may take longer.

I strongly suggest you get an SSDI lawyer, a specialist which can be found in major cities, and this is the perfect time to do it, after your first decline. I'll paste a quote from something I posted yesterday:

Generally, they do not charge you, but will only take a good portion of your back pay (this makes them fight for you.) They won't take you if they think you don't have a case, which you do. If you get declined they may charge you for medical records fees, but will work with you on paying this back, perhaps a couple hundred dollars.

We all understand that you can be too limited/unreliable to work. It is truly worth the effort to continue with your case, and don't be shocked if you get declined again, appeal again and have to wait for a hearing, it happens.

BTW, if you are disabled there is a chance (may be different in every state) that you can begin drawing from your retirement plan at age 59.

But, this isn?t solely about finances. Of course, you want to be able to work and you loved your job! I?m sure you made a great contribution to so many hurting people passing through the ER. It's hard not to be able to work. I seriously struggled with it 22 years ago when I stopped and the battle isn't over, yet!!

We?re here for you.

?Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.? ~Bernie S. Siegel

P.S. I love the quilt my grandma made me and still have it 30 years later, though it looks a little bit like it?s been through a lawn mower! I cherish it. Do not underestimate the love that gets passed along by things like that.

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Hi Donna,

Welcome to the board. I have also applied for SSDI/SSI in Oct. 2005 and am STILL waiting for an answer. Of course if the SSDI said that you were too young, then who knows what they are going to say to me since I am only 21 years old!! My advice for you would to definately appeal the decision and also if you have been to any of your doctors for POTS related things since applying for SSDI make sure you get the newest records and send them in. I also know that when you apply for SSDI they like to see that you have follow ups with your doctors as well. I think I saw somewhere it was every 2 months or so.

I think it's great that you are making quilts for your childrens' families. Hurrican Katrina was such a tragedy and I'm glad they made it through! Maybe someday I can learn how to quilt. Is it hard?

Anyhow, glad to have you here!


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Thank you so much for all of your encouraging words. I love the "flat tire". The older quilts get, the more precious they are. Thanks again, Donna

Thanks Jacquie, this forum is so encouraging. I feel like I made a whole room of new friends, who understand why I am so limited. Thank you so much, Donna

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Also, remember, is is Soc Sec job to make thise such a HASSLE that folks just give up.

WHen ill, it is ExHAUSTING to be your own advocate.

Thanks to the Internet and Telephone, it is getting MUCH easier to find out things on your own.

So hang in there, and yes, don't believe a thing the idiots on the phone tell you....The right hand doesn't know what the left hand is doing.

Just 'be nice to them but NEVER give information on the phone'..ONLY in writing and now thay you have been turned down, seek a QUALITY attorney.

If you could put together the convoluted work needed to get your soc sec on appeal, you wouldn't be disabled!!! Especially in the eys of many judges!!!

Keep us posted.

P.S. That disinissues will also help you learn to WORD THINGS properly on your paperwork.

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