No To Disability

[dezyrae2]

I just got the papers saying i got turned down for disability. It says i could appeal but i dont know if it is worth it or not. It is very frustrating. They said i definately have a heart condition but it is not bad enough for me not to work. I am a hairdresser and they say i could still do this. Ya right!!! I have to say excuse me while i faint and then i will finish your hair. These people who make these decisions must have no clue to what it is to have POTS. Anyone else ever appeal this decision or have been turned down? I will be glad for any feedback.

Thanks

[preacherswife]

I don't have any experience with disability and POTS, but I wanted to tell you the experience that I DO have. It seems that they normally just turn everybody down the first time to see if you really want it or not. Maybe it weeds out the fakers; I don't know. Anyway, my daddy went blind two years before he died at age 47 from diabetes complications. He was a truck driver. He applied for disability and was turned down... a BLIND TRUCK DRIVER! Do you WANT a blind truck driver to work? Uhhh.... Everyone I have ever known who has applied for disability was turned down the first time.

[pearsjon]

i am a hairdresser ,too. keep going on disability. it is a pain in the behind. but i had to quit i lost all clientele cuz i can't be there when they want me to, and yo know what i am talking about. i can nolonger stand long enough to do it. go for the appeal, try to explain the nature of our business and also i ahve adpoted the "i don't care attitude if i get it or not" i think it helps get through the red tape easier.

you will not be qualified until the lawyer gets his 25% first and then you'll get it.

i am going through it with you honey, too.

i'll let you know how i'm doing and you do the same.

[vemee]

The way social security works is that you apply and get turned down then you appeal and they turn you down again. Some people get approved during the first two stages but the majority get approved during the third stage which is a hearing with a social security judge. There is another appeal after that but few get approved. People do better if they get a lawyer to help them. The process takes a long time and they say if you are working you do not qualify. A lawyer will tell you what you can and can not do. I did get disability based on pots so it is possible.

[Sophia3]

Getting turned down the first time is very common.

Way back in 1990 I got it the first time with CFS dx. It matters NOT the dx it's HOW IT IMPACTS YOUR DAILY FUNCTIONING.

Please join the disinissues Disability mailing list.

THEY STRICTLY HANDLE DISABILITY It is not a support forum. They can HELP you. SS WANTs you to give up after the first denial. It's their JOB!!

Stay focused, join the above group and find an attorney in your area. A GOOD ONE who returns your calls and you trust.

GOOD LUCK.

[morgan617]

Social Security told me that about 3-5% of people get approved on their first try. Don't give up, I know it can become a major struggle, but your perseverance will prevail.

We got our son involved with a social worker who has been a God send. I know I didn't get mine for POTS, but other sundry things that affect my life. The wording is very important. Have you looked at the SSDI manual for illnesses under their guidelines for illnesses they do accept as almost automatic approval? You can find it on the SS site. POTS is not listed, but arrythmias that cause problems are.

It can be a big struggle, but hang in there, I felt like giving up all the time and I got accepted on the first try! All the worries that go with it. But if you attempt to work now, when you can't and don't last, you have to start from scratch. That is discouraging.....good luck sweetie. morgan

[Rachel]

Desiree,

It is very common to be denied for disability the first time (and second time) around. I was denied after my initial application. They said that I was still able to work, yet I did not have the physical strength to get a bath. Hmmmm... I knew for sure that I could not work, so I filed an appeal, got a lawyer, and was eventually approved. It's not an easy process and it does take time. If you need SSDI then you must be persistent with it.

As Sophia said, you can check out the Disinissues group. It is free to join and is done through email. The folks in that group can help to answer many of your questions about getting disability. If you're interested, here's the link: http://groups.yahoo.com/group/Disinissues/

Best wishes as you travel this rocky road,

Rachel

[Maxine]

Another thing that helped me was to make sure ALL of the functional capacity reports were getting to my attorney, along ALL medical evidence that is important to your claim. I have found that some of the most helpful information to my claim did not make it to my SSDI file during the first stages of filing SSDI.

Getting a copy of your medical records for your own file to compare against what SSDI is helpful. I did this as my hearing got closer, but I also followed through with some important records in the reconsideration fase to make sure SSDI had them, but it didn't help, as the medical evidence at the time just wasn't strong enough in THEIR opinion.

That site that Sophia gave you IS helpful-----------It helped me a lot.

In the end, the medical expert ended up focusing on my EDS, and a very good summarized report from one of my surgeons who gave a good detailed report in 2005 on the impact of all my conditions---and how each affects the other. There was also some FC reports filled out by other physicians showing my limitations.

I wanted to review all medical records myself, so I tried to get everyone of them in my hand. If I didn't like what a specific doctor wrote, then I would discuss is with my attorney. One of the doctors that works for SSDI wrote a terrible report downplaying all my symptoms, and more or less accusing me of being a malingerer. He said I had POTS without tachycardia??!! I've been on beta blockers for tachycardia for 17 years---

I haven't been able to work since April of 2001. I did try to go back to work in 2003 after slight improvement after cervical spine surgery, but in a few months my health started to decline again, and I found out later that my EDS has caused problems with my vascular system, and was affecting my spine along with every other joint and ligamant on my body. I worked for 22 years, and I wanted to get back some of what I earned over those years.

SSDI does want you to give up---------------you want to continue with your if you truly can not work.

Good luck-----------and remember to follow up with your medical records.

Maxine :0)

[Sophia3]

back in 1990 CFS was a real 'fuzzy wuzzy' diagnosis. I got books and made copies of the pages...one in particular about how Soc Sec tried their best to DISPROVE CFS as there were no TESTS to confirm but only to EXCLUDE dx. I also had the advice of a dis attorney who spoke at a support group I was then going to...he said to try on my own FIRST so he would not get the back pay (NICE GUY!!!!!!!!!!!!)

You just need to prove your fatigue levels or in some folks cases here the fainting and surroundings and LACK of ability to do 'normal daily functioning'.

If you have EVER filled out during a disability review the LIVING QUESTIIONNAIRE and DAILY FUNCTIONING REPORT, it's depressing to see how life has changed for me in 17 years, The questions were SO PERSONAL but I HAD to answer them., they were SEVERAL PAGES of many questions long..I do not know if they may do this at the BEGINNING of applications now or not..

after coping 17 yrs, it was like a bad trip down memory word as to put in detail how this has robbed me of my hobbies...riding horses, driving for small vacations....getting out with ANY sense of time commitment. DENYING YOU and making you feel bad IS THE JOB OF SOC SEC. Take nothing they do PERSONALLY. I had a cognitive impairment briefing by a well known shrink who warned me if I had to go to court for this to be prepared to be slapped around emotionally and look like a lazy malinger with an invisible illness. I prepared for the worst and got the best. First try.

Do NOT GIVE UP. Just remember, join that disinissues site. It's full of 1000's of members that work with private insurance disability and soc security. HANG TOUGH and perservere. That's the ticket!!!

[P SUDIK]

I know this is really disappointing ,I have been through it,still going through it. I know it's very hard but don't give up, that is what they want you to do! I have been waiting for a hearing for over 2 yrs. BTW I do have a lawyer,I'll let you know if it helped(hopefully soon). Good Luck Pat

[pastordari]

Thankfully, I have not had to try for SSDI myself. However, I was a social worker in a former life (before a pastor) and it is pretty routine for applicants to receive benefits on the first try. We prepared clients to expect denal the first try. DO NOT GIVE UP! /if you give up, the system wins. Try again, do the appeal and see what happens. There has been some good advice offered and many here have gotten benefits, so hang in there. You deserve the benefits.

Dari

[thejohnsongang]

I am in the same boat with you. I have not been able to work since Sept of 2006. I applied and was denied the first time, appealed and was denied again. I then got a lawyer filed an appeal again and I am now waiting for my case to be heard by a judge. My lawyer is wonderful and explained to me that it's not about what illness you have, but how it effects your ability to do things and your quality of life. He says it's all about wording. My estimated wait for a hearing is 500 and some days. So the wait is long, but my lawyer is predicting a good outcome for me. Yes he gets his share, but he is the one doing the work and dealing with the paperwork. I will just have to show up at court. I do try to get all my records when I go to the doctors and I keep my own file at home, that way I make sure it's all in my SSI file. But he handles the paperwork, the phone calls, etc. It was a great relief for me to have him take the case over.

I suggest you keep trying. Don't give up on what is yours to begin with. We've paid all these years and now our doctors opinion isn't good enough to make a decision on our ability to work. We have to fight for our payments and go by their doctors opinions. A lawyer is very important in winning most cases for SSI.

I'll keep you in my thoughts. Good luck.

[dezyrae2]

Thank you all for the great advice. I set up an appointment with a lawyer for this thursday and hopefully i can get some help. I really appreciate everything. Thanks again.