24 replies to this topic

[JDSEARING]

WHAT THE DOCTORS REPORT TO SSD IS NOT WHAT'S GOING ON.

HOW DO I GET THE TRUTH TO SSD. MY T.V. ATTY 'BINDER AND BINDER' ISN'T INTERESTED IN THE TRUTH, JUST DOCTOR REPORTS.

REGARDLESS OF WHAT MY PROBLEM IS, I CAN'T WORK IF I'M IN BED.

THE QUESTIONABLE DIAGNOSIS OF ANXIETY, DEPRESSION, BIPOLAR, AND APNEA, MAY NOT GET ME SSD. REGARDLESS, I'M STILL A 'SHUT IN' FROM OVER 3 YEARS OF BEING NEARLY BED RIDDEN WITH NO ENERGY.

ALL THE DIAGNOSIS CAN BE EXPLAINED AWAY:
- I TAKE BENZO'S (XANAX, VALIUM, ETC.) TO RELIEVE THE VERTIGO I GOT FROM A VIRUS CHIRSTMAS '92. MAYBE IT HELPS ANY ANXIETY I MIGHT HAVE.
- WHO WOULDN'T BE DEPRESSED FROM LOSING AN ACTIVE WORKING SOCIAL LIFE TO BEING A LUMP. MY QUALITY OF LIFE IS NEAR NULL.
- I DO NOT HAVE ANY TYPICAL SYMPTOMS OF BIPOLAR
- THE CPAP DOESN'T BENEFIT MY MODERATE APNEA

I ORDERED A PAMPHLET FROM DEAR ABBY ON HOW TO SOCIALIZE. I FIGURED I MUST HAVE LOST THAT ABILITY WHEN I WAS TURNED DOWN BY A COUPLE DOZEN PERSPECTIVE EMPLOYERS (EVEN MENIAL JOBS) I THOUGHT I MIGHT NEED IT AFTER I GOT MY LIFE BACK FROM USING THE CPAP :cry:

I HAVEN'T EARNED A DIME IN 5 YEARS. I QUIT MY LAST JOB BECAUSE I WAS LOSING MY MIND FROM PAXIL WITHDRAWL. IT TOOK ME 2 YEARS TO REALIZE WHAT CAUSED IT AND TO GET OFF THE USELESS ANTI-DEPRESSANT. IF I HAD ANY MARBLES LEFT AT THAT TIME :shock: , I WOULD'VE GONE ON L.T.D. AND WOULDN'T HAVE GONE BANKRUPT AND LOST MY HOUSE. IF MY ATTY HAD IT TOGETHER I WOULD'VE BEEN PUT ON THE 'ROCKET DOCKET' (GET SSD QUICKLY) UNDER THE LATTER CIRCUMSTANCES.

MEANWHILE MY WIFE SUPPORTS ME AND I CAN DO LITTLE TO HELP OUT AROUND THE HOUSE. IT'S A WICKED CIRCLE. SHE HOPES FOR A BIG CHUNK OF $ AND MONTHLY INCOME FROM SSD, OR TO IMPROVE AND BRING IN AN INCOME. MEANWHILE I SEE MYSELF AS A USELESS LUMP WITH LITTLE HOPE. SSD DENIES ME AND I'LL BE LOOKING FOR A SHOPPING CART AND A BRIDGE TO LIVE UNDER. HOW CAN I EXPECT MY WIFE, OR ANYONE FOR THAT MATTER, TO PUT UP WITH MY SITUATION.

DOES THE TRUTH MATTER ANYMORE :?: . I'M 47 AND THERE WAS A TIME THAT IT DID, BUT IT SEEMS TO HAVE DISAPPEARED. DOES IT DO ME ANY GOOD TO TRY TO CONVEY THE ABOVE TO SSD OR SHOULD I JUST LET THE ATTY MOVE AHEAD WITH 'SMOKE AND MIRRORS' :roll:

[chrissy]

I can completely understand what you are going through I have recenty been denied Disability and now I have submitted my appeal but I am thinking that I need to get an attorney to help me out with this. I was going to contact the network for some help in locating an attorney in my area that is familiar with this type of case. I can relate to your frustration about feeling like a lump. My family has been wonderful but I can't help but feel like I am such a burden to them. Best of luck to you!

[narciplarci]

i am 30 years old with 2 children to look after .. i recently applied for disability.. i work for 2-3 hours in the mornings as this is my best time.. i recieved my answer 2nd november.. NO your not entitled.. even though when im havin a bad day i cannot phisically get myself up.. my mum is a god send and is always there when i need her.. cooking my children dinner or making sure their bathed for bed.. i also suffer cataplexy which has got quite bad over the last few months it scares the life out my kids.. i go to work for what i can.. to keep me going .. even though some days it takes all my strength.. i was quite angry that they seem to give disability out quite freely to some.. I BELIEVE IF SOME OF THESE DOCTORS OR THE PEOPLE THAT DECIDE IF YOU GET DISABILITY COULD EXPERINCE JUST FOR A DAY OF WHAT WE GO THROUGH THEN MAYBE ALOT WOULD CHANGE IN THE SYSTEM..
to say my belief in people has changed would be an understatement.

never give up.. if we all shout loud enough one day they have to hear us.

[MaryAnne]

I applied for my disability in the beginning...after being told I am perfectly fit and capable of working 3-4 hours a day (to pay what cost-of-living) I gave up....got lucky with a job that I can disappear into my office for short naps :oops: whenever the need arises....and to think I have a cousin who got approved the first time she applied on severe obesity (275lbs) and a nerve disorder (bi-polar) :roll: misunderstood is an understatement when it comes to SS and Narcolepsy/Cataplexy!!!

[Kel29]

I was just reading what everyone has written about fighting for SSD. I am also a 30 year old with 1 child and can feel for the person with 2 kids. I have been so unfunctionable that I have to put my child to bed just so I can sleep. It is the most horrible feeling. I am on my 2nd appeal and have a lawyer which doesn't seem to be doing much so I am wondering why I have one. This process is now going over the first year. I have no idea when I will get an anwser. When I was working they said well you must not be disabled if you are working. I flat out told them that if I continue to keep working I will die driving, and hope not to kill someone else. When you fall asleep on and off all day then try to function without ever being rested it will definately kill someone. I agree that the people working have absolutely no idea what it feels like. Just because we look fine on the outside doesn't mean we are OK. They need to make better rules for who does deserve SSD. I am with you all on this. I pray every night for approval Good Luck to you All!

[katgulfport]

I have been reading all of the messages I understand all of you
I too have been going for disability. And so I feel like the Judge is controlling my life. Like he is acting like God. I have more disabilities
on CPAP, Dietbetic, more than I can spell and have room for. I had a car wreck not 100 ft from my front door. Still don't remember I only know what was told to me. I was told I drove up a telephone pole line support
and with a blessing the line was attached to the trucks bumper and instead of flipping onto its top it slid back down on all four wheels.
But ask me what happened before, during, after I can not tell you. My licence was suspended after that so I can not drive. Disability knows that
the judge knows I am on about 25 pills a day for restless leg, high blood pressure, ect I have seen the judge 3x's and each time with my attorney
I can feel so sad I just want to die. But I have 2 children I am raising
I fall, I don't walk I have a wheelchair so I won't fall but I still fall asleep
and the lost seconds, minutes, hours I don't remember. Like a sci-fi
like you have slipped into another mirror its me but when the attacks happen I feel like I am on the other side of the mirror. How I wish I could put my shoes on the judge and hear him tell me I will be in touch............
I am sicker now more than ever is there someone out there that feels the same I need to know I am not crazy just disabled

[Jules2701]

I am 37 mom with 2 small children children and diagnosed with Sleep Apnea / Hypersolmence / RSL (Periodic Limb Disorder) / Fibromyalgia / Anemia - etc... Too Much 2 list.

I have worked all my life up until 2 year ago. I loved working, having a wonderful lifestyle, having a life PERIOD. - NOW BROKE!

I don't understand why the judges / doctors & lawyers don't see the big picture as to why people like us would rather live the poor helpless life everyday feeling as we do / every month making a descision whether to pay your bills, buy food, take care of children, etc.... or get your medication. We have a physical & mental disability.

I am set to go before the judge shortly and of course making myself sick and depressed over the whole ordeal.

CAN ANYONE HELP? WHAT SHOULD I KNOW?

[hypersomniac]

I feel so sad for all of you, because I have been there...was raising three boys by myself...caring for my dying mother...crying and/or sleeping all the time, and unable to work. Finally my doctor put me on antidepres-sants which worked for a while. Ten years later I'm on my third antidepressant, have had a sleep study done, been diagnosed with hypersomnia, have had a serious adverse reaction to Provigil (caused cataplexy rather than wakefulness) am taking five kinds of meds for hypertension, meds for gout, insomnia, restless leg syndrome and Percocet for chronic back pain. Surprisingly I'm still able to function as a nurse who works second shift, so I can sleep in the morning until around noon. But I can't get much else done. I don't have the energy to clean my house, so friends are no longer invited over. What keeps me going is the Percocet. Odd, I know. It puts other people to sleep. Fortunately, I'm now 60 years old and am looking forward to retirement in a few years. Those of you who can't work because of your disability, have your docs tried prescibing stimulants like Adderall or Ritalin or Provigil?

[Kel29]

For those of you who are fighting for disability keep it up, stay on top of them, tell your doctors everything you are feeling (side effects). I finally got approved. The bad news is they didn't once mention anything about my Narc in my approval. I have Colitis which due to the stress from Narc has flared and that is basically what got me the approval. I stopped working do to the fact I couldn't stay awake not because I was having GI troubles. Yes the GI troubles are severe but all in thanks to the stress of being to sleepy to care for me child/house duties. So the best words of wisdom is to stay on top of everything and when you get denied (WE ALL DO) appeal right away. It does help if you are timely!
GOOD LUCK!

[sleepyavon]

Oh, man do I feel your pain. SS agrees I am disabled unalble to work, but because I was short 2 work credits, I cann't get SSDI, and because my husband made $200 GROSS too much for 2 persons... like $1700/mo.... based on COL stats from the 70's, I get nothing and can get nothing unless my husband makes just $10/hr for the 2 of us! We just lost our home to forclosure. Along with severe narcolepsy, I also have fibromyalgia, and RA. I am sleepy and in pain and have mobility problems. We always never make ends meet, not even for many basics. It is WAY time for change. I even had a lawyer, but we can't change SSA's laws. Since discovering SSA won't help me at all... I have been Your Sleepy AVON Lady, not to poke fun at myself, mainly to make myself unique, as a marketing too. We always are in need of money for prescriptions, food, etc, so the few extra bucks I am make from AVON each month, the better. I do wish society would help more, I am sick of being sick and living in povery!!!!!

[Cryopathic]

We just lost our home to forclosure.

Were do you live now?

[sleepyavon]

Were do you live now?

We live in an apartment now. It is nice, but it does hurt alot to walk to our truck now(fibro+RA). It is nice here, and I look forward to the hot tub and pool opening!

[sleepymom]

I am so sorry to hear about so many troubles with SS and getting approved. As I read all of your posts, I couldn't help but wonder if some of the doctors are maybe prescribing the wrong medications. I truly hope I am not offending anyone. I am just kinda thinking/brainstorming here. I am on Adderall XR. I take 20mg, 2 times per day. You are only supposed to take the XR once a day, but my daytime sleepiness requires that I take it twice a day. I would have to take a much higher dose, if I took the original Adderall that was not time released. Anyway, if I don't take it, I am extremely lethargic, don't want to get out of bed, and can't even think straight. My husband always knows if I have forgotten to take it b/c it takes me forever to pick out which cereal I want for breakfast...only 3 choices in our pantry. Anyway, Adderall is a true amphetamine and is a controlled substance. You have to physically pick up the prescription from the doctor every month, but it has worked miracles with me. Provigil did nothing for me. I took 600mg a day, with no improvement. I know Adderall is not one of the "new" drugs, but it is very effective. I just wonder if it might be able to help other people, too.

[Lucky]

I am fortunate enough to have accidentially be referred to a great sleep specialist after several years of trying to find out why I was so tired. Age 14 to 35 ...
My daughter also has narcolepsy. at Age 16 she is now 25. We are both disabled and on SSD and SSI..
The key to getting on SSD or SSI is to have a Doctor that has already had patients that are on SSD or SSI in the past.
The SSD and SSI board now recognizes his name and know that he is one of the top doctors for sleep disorders.. They know he will win his cases if taken to court. So they now put his refferals through the system with little questioning. He is very good at what paper work he files and how it is filed. He is also well known for being honest and objective about his clients.
So the best advice I can offer is to look for a doctor that is well known to the Board of Review for SSD and SSI and that has learned what it takes to get his patients approved.
I am very grateful for him - great doctors who truely care are hard to find..
He has made all the difference in my life.

Lucky

[Marcianna]

WHAT THE DOCTORS REPORT TO SSD IS NOT WHAT'S GOING ON.

HOW DO I GET THE TRUTH TO SSD. MY T.V. ATTY 'BINDER AND BINDER' ISN'T INTERESTED IN THE TRUTH, JUST DOCTOR REPORTS.

REGARDLESS OF WHAT MY PROBLEM IS, I CAN'T WORK IF I'M IN BED.

THE QUESTIONABLE DIAGNOSIS OF ANXIETY, DEPRESSION, BIPOLAR, AND APNEA, MAY NOT GET ME SSD. REGARDLESS, I'M STILL A 'SHUT IN' FROM OVER 3 YEARS OF BEING NEARLY BED RIDDEN WITH NO ENERGY.

ALL THE DIAGNOSIS CAN BE EXPLAINED AWAY:
- I TAKE BENZO'S (XANAX, VALIUM, ETC.) TO RELIEVE THE VERTIGO I GOT FROM A VIRUS CHIRSTMAS '92. MAYBE IT HELPS ANY ANXIETY I MIGHT HAVE.
- WHO WOULDN'T BE DEPRESSED FROM LOSING AN ACTIVE WORKING SOCIAL LIFE TO BEING A LUMP. MY QUALITY OF LIFE IS NEAR NULL.
- I DO NOT HAVE ANY TYPICAL SYMPTOMS OF BIPOLAR
- THE CPAP DOESN'T BENEFIT MY MODERATE APNEA

I ORDERED A PAMPHLET FROM DEAR ABBY ON HOW TO SOCIALIZE. I FIGURED I MUST HAVE LOST THAT ABILITY WHEN I WAS TURNED DOWN BY A COUPLE DOZEN PERSPECTIVE EMPLOYERS (EVEN MENIAL JOBS) I THOUGHT I MIGHT NEED IT AFTER I GOT MY LIFE BACK FROM USING THE CPAP :cry:

I HAVEN'T EARNED A DIME IN 5 YEARS. I QUIT MY LAST JOB BECAUSE I WAS LOSING MY MIND FROM PAXIL WITHDRAWL. IT TOOK ME 2 YEARS TO REALIZE WHAT CAUSED IT AND TO GET OFF THE USELESS ANTI-DEPRESSANT. IF I HAD ANY MARBLES LEFT AT THAT TIME :shock: , I WOULD'VE GONE ON L.T.D. AND WOULDN'T HAVE GONE BANKRUPT AND LOST MY HOUSE. IF MY ATTY HAD IT TOGETHER I WOULD'VE BEEN PUT ON THE 'ROCKET DOCKET' (GET SSD QUICKLY) UNDER THE LATTER CIRCUMSTANCES.

MEANWHILE MY WIFE SUPPORTS ME AND I CAN DO LITTLE TO HELP OUT AROUND THE HOUSE. IT'S A WICKED CIRCLE. SHE HOPES FOR A BIG CHUNK OF $ AND MONTHLY INCOME FROM SSD, OR TO IMPROVE AND BRING IN AN INCOME. MEANWHILE I SEE MYSELF AS A USELESS LUMP WITH LITTLE HOPE. SSD DENIES ME AND I'LL BE LOOKING FOR A SHOPPING CART AND A BRIDGE TO LIVE UNDER. HOW CAN I EXPECT MY WIFE, OR ANYONE FOR THAT MATTER, TO PUT UP WITH MY SITUATION.

DOES THE TRUTH MATTER ANYMORE :?: . I'M 47 AND THERE WAS A TIME THAT IT DID, BUT IT SEEMS TO HAVE DISAPPEARED. DOES IT DO ME ANY GOOD TO TRY TO CONVEY THE ABOVE TO SSD OR SHOULD I JUST LET THE ATTY MOVE AHEAD WITH 'SMOKE AND MIRRORS' :roll:

I totally feel your pain. They treat Narcolepsy like it isn't even real just glorified laziness. It is total crap. I finally got on SSD and SSI. But not for narcolepsy. I had this shrink whom I will love forever for helping me out. Even if she did make me "officially nuts" in order to get me on SS. My SS is for Bipolar. I dont even think I have it, per say, maybe a touch of it. But I wouldn't be bipolar if I did not have narcolepsy. Cuz the roller coaster ride of emotions, like being worthless like you said is there.

But a word of caution: SS is not going to solve the $ problems. I get around 600 a month and that barely covers my bills. If it wasn't for programs like HEAP dealing with my utilities, I would be screwed. I am using my time on SS to finish school so I can get off it and try to lead a normal life. Oh and another thing, If your married you will get less money through SS because they will take your spouses income into account. She apparently should be taking care of you according to them.
My Boyfriend and I have been together for 8 years. and that is the only reason we never got married. He cant even live with me. We got smart and are renting a double. He has one side and I have the other. Technically two house. so they cant touch us.
If you just starting this process off I assure you it will get much worse before it gets better. The two of you be good to each other. It will be a very long hard ride. Good luck!

[ikon0304]

Hi, new here. suffering from cataplexy and hallucinations and narcolepsy. Bi-polar and post truamatic stress from finding my husband hanging in ourhome 20 yrs ago. I applied for SSd, i was short two credits and they told me to just find someone who would put me on their payroll for two weeks so i would qualify. well now, isnt that illegal? so why is it that the gov't is tellin me this? so now, i am applying for SSi, been denied once, appealing again. They sent me to one of their own shrinks and he told me as i left in tears that i definately qualify for SSI just for the depression and ptsd alone. when i looked over their report, they didnt even get information from the doctor that diagnosed me and the treatment he is doing. I can no longer drive. I tried, had cataplexic episode in my car in my driveway while backing up. I felt fine before i got int he car..didnt seem like i was going to have an episode. now they are starting to hit me without any warning. used to get heavy sided no the right side and could tell , my speech would start to go also. Now, it just hits without warning. alot of stress between domestic violance, restraining orders and trying to find a p lace that i can afford for me and my son. i am living off of child support and that doesnt even cover the house bills/rent. the more that goes on, the more depressed i get, the more depressed i get, the more tired i get, the more tired i get, the more cataplexic episodes i have. its a vicious cycle and i dont understand why people dont understand that. sorry, just needed to blow off steam. sorry to say this , it is nice to know, im not alone with all this. being a shut in is getting to me. cant even read books, watch tv, or play games for too long...they all have bad reactions with my sleepiness. no pun intended but im just so tired of all of this. feels like a very bad dream

[sleepyavon]

Please Sign Petition to Reform Social Security Disability SSDI and SSI Determination Processes


Take Action! Sign My Petition! Reform Social Security Disability SSDI and SSI Determination Processes - http://tinyurl.change.org/zXUto Thanks! I won at the hearing level 2006, but got cut off soon after that due to husband making too much $ for SSI/Medicaid. Now hubby left, have to reapply all over again in April! Just got first denial notice... Here we go, reconsideration, again. Not so sure I'll make it for hearing again this time. It is ridiculous. You must First become a supporter of Poverty in American, then click on sign my petition button.

[Joyce]

Hi, I have created a document that lists the steps that I took to get my ssdi claim approved. Email me at joycescannell1@cox.net and I send you the document - it has helped others in the past and it might help you too!

[ayesart]

My hearing loss began in 1996 since then it has gotten progressively worse so much so when I take off my hearing aids I can't hear anything at all.

I applied for SSDI back in 2000. I went very prepared to the SSDI office with all my medical records.
I had sorted them out by date, and what condition I had seen the doctor for.
How did I get my medical records? Everytime I visited the doctor I requested a copy of my medical record for that visit. I placed that copy in a loose leaf binder enclosed within a plastic protective cover that had precut holes to enable me to insert them into the binder. Whenh the technician saw how organized I was she was very surprised and related to me how some people come to her requesting SSDI benefits without having any supporting visual data like I had. She didn't make copies she just copied the names and telephone numbers of doctors and specialists I had seen so she could request copies of my medical records from them. (Its standard proceedure.)

During the course of our conversation she also informed me that the level of a person's education is also a factor that determines eligibility for SSDI. A college grad is more likely not to get SSDI because of their higher education level. A person who didn't finish high school is more likely to get SSDI than a college grad.
(You figure that one out.)

1: So we have organization of medical records placed neatly in a looseleaf binder ready for presentation to a technician.
2: Level of education.

I have known people who have been denied benefits. Once you have been denied there is a process that one has to pursue.

Your case now has to be presented before a board of people. At this point it is adviseable that you hire a lawyer who is experienced in SSDI cases. One that doesn't charge any fees until they get you accepted with SSDI.

In any case hire a lawyer from the start of the process when you are ready to apply for SSDI. Perhaps things will go much easier especially if that lawyer knows a lot of people within the system.

Interview your prospective lawyer and question him regarding how many cases he has won and how many cases his firm has lost. Ask them if they are well connected with people within the SSDI system.

Example:

Lawyers who are well connected within the INS system are more likely to get their clients immigration status than one who isn't well connected. Its logical when the same rationale is applied to the SSDI system and those who work on behalf of SSDI client's cases.

Its also good to bring along with you reports from neurologists, psychiatric encounters and counseling et al.
It would be very wise of you to ask your doctors their opinions concerning how challenged they think you are. If your condition is bad enough to hamper your ability to work a regular or "normal" job. If they concur, agree that you are unable to work a "normal" job, this means, perform like everyone else, have them write it down in your medical record. This entry in your medical record will surely influence whomever you are petitioning for SSDI.

Hope it helps.

PS

Denial of benefits isn't the end of the world. I think there is a time lapse period before you can re apply for benefits after getting denied. Apply the suggestions above....Hopefully you will succeed. The key here is Leaving no room for doubt that you are challenged.

[tengosueno]

So sorry to hear about what going on, I've felt like that also.




Right now I'm on SSDI and I get $700 a month (not much still have to work 12hours a week to have enough to get by).  Anyway the problem that I have is I want to work more and feel bad when I can't, it hurts me more then anyone knows.............




As far as the attorney let him do his job, doesn't matter what on paper the result is the same, you can't work period. and for anyone else going for SSDI two thing you have to have:




A good doc specializes in N and an attorney.  




Let your doc know what you want to do and work with him to build your case.  It took me two tries to get mine but it came.  Like it was said before no great fix who can live off of $700 when a decent apartment cost $500 or more........................as my mom says 6 in one hand half dozen in the other.




Oh and the other thing, what did you do for a living?  Unfortunately if they think you can make decent on half then it will be a lot harder.  Example if you could make say $20 an hour in your field, then they figure at 20 hours a week you would be the same as a full time job making $10 an hour.




HTH