View Full Version : I work for SSA and I suffer from IC...

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05-25-2005, 10:36 AM
If you guys have any questions about Social Security Disability or SSI, feel free to ask me. I am a case worker/claims representative with the agency. I also suffer from IC, so I can understand what a lot of you are going through...


05-25-2005, 10:51 AM
I just talked with them yesterday...they said I didn't work enough to get disability,,,I told them I haven't worked much because of my I.C..She said I didn't work enough to get disability...then she said my hubby makes too much money for SSI...So basically I am S.O.L....

05-25-2005, 10:53 AM
The lady also said she had NEVER heard of I.C...so I told her a little about it...she didn't seem to understand until I told her.." Would you hire me if I had to pee every 20 minutes?" She said " No" and then I told her that's why I haven't worked enough the last 10 years...I told her there was a huge fault in the system..

05-25-2005, 10:56 AM
Megan Hi and Bless you. I am sure you will be flooded by questions. I won my case this past Nov from the appeals judge. Of course I was denied the first time and had to wait on a court date and all that stuff. It was long and hard battle but in the end I won. I do have a question and it may not be one you can answer but here it goes:

When I first started my appeals battle I had a lawyer, because I could not get my hearing case moved he dropped me. When Baltimore sent out my back payment check they with held money for the lawyer. The money was withheld but not sent to him. The lawyer resent his letter to my local SS people notify them that he withdrew and no monies where entitled to him. This was all done and sent to Baltimore in March asking them to release the $6400.00 to me that was with held. I still have not recieved my money. I contacted SS at the 1-800 again a month ago and b/c they had not sent my money to me yet they sent a letter up to Baltimore to find out what the hold up was with my money. She said I would either be contacted by baltimore by letter or phone within 10 days. Well still no answer. I call every week to see what the hold up was and was told that they (baltimore) recd the letter and would get to it when they can. I was told they are more concerned with getting out other backpayments than fixing my problem. Its frustrating because this was money that should not have been taken out to begin with and I cant get it from them. I would have had better luck getting from the lawyer had they sent it to him to begin with. Is there anything else I can do or not???

05-25-2005, 11:16 AM
:hi: Megan I really appreciate you sharing. We can often use an expert around! Thanks so much!

05-25-2005, 11:37 AM
I Must Pee, (love your board name, by the way!)

Yeah, I hadn't heard about IC either, until I read about it in a magazine article... And now that I suffer from it, I find that most people haven't heard of it either. Even my primary care physician didn't know what it was!!!

I'm sorry that you're not eligible for benefits, though... I know it's no fun when you don't have enough work to qualify for SSD yet you have too high of a household income to qualify for SSI. I always hate telling people that they aren't eligible for any benefits with us. :(

05-25-2005, 11:40 AM

I would definitely call your local office and talk to your case worker. If that can't give you an answer within two business days, I would ask to speak to their supervisor. If your lawyer returned the money to Central Office (in Baltimore) it should have posted to your record within 30 days at the MOST. I would demand answers. To me it seems completely unacceptable that your office hasn't let you know what was going on!!! Keep calling them, and don't hesitate to ask for an MSS. That's a supervisor. If you ask for the "M.S.S" they should know you mean business. ;) If that doesn't work, I would ask to speak directly with the office Manager.

Good luck, and I hope you get your money back soon!!!

Megan :)

05-25-2005, 11:43 AM

No problem! I don't know if I am necessarily an expert, but I am happy to help whoever I can on here! And if I don't know that answer, I can always ask someone here at work!

Megan :)

05-26-2005, 03:14 AM
Thanks for the advice. Baltimore actually never sent the money to the lawyer. They just took it from my check and they still have it. When I called the 800 number yesterday they said they were making sure the lawyer was not to get money. I asked what I could do to make it faster considering its been 60 days or more now. He sent a letter to both stating he was not owed the money. Its so hard to find anyone to listen to me. It took forever to find anyone to send a letter to Baltimore. Its like I cant get my money and its mine. But I will call my local office again. When I called last time they told me there was nothing that they could do either. But thanks I will do that and if need be ask for the manager.

05-26-2005, 03:45 AM
Dusty, you are so right, the system does not seem to work fairly for citizens of this country. I wish something would change. Hope your friend is doing o.k.

05-26-2005, 08:04 AM

Most of the people who have "just come to this country" are most likely receiving SSI, which is the welfare-based disability benefit. If they are a Lawfully Admitted Permanent Resident of the United States with a Social Security number, then they are eligible for welfare. The most that they can get from SSI is $579 per month, in most states.

As far as people from other countries who are getting SSD, they usually came to this country and started working right away. They have been here and worked for at least 10 years if they are over 35. Most of them probably aren't getting more than $400-600 a month either.

I'm sorry about your troubles with the Social Security system. Sometimes I do not understand how certain people are denied. But I don't work for our Disability Determination Service, so I don't get to make the medical decisions. Sometimes I wish I could, though!!! :)


05-26-2005, 08:07 AM

After talking to a supervisor or an "M.S.S." the next step up is to talk to the Assistant District Manager or the District Manager themselves. If they cannot help you, then it would go up to the Reigional Office, (there are 10 different RO's) and then to the Central Office.

If your friend was denied benefits, I would definitely encourage her to appeal. Some people have luck with hiring lawyers as well. I don't think there are any "secrets" to getting SSD or SSI though. It just seems to happen for people, or it doesn't. I always thought it depended on the amount of medical evidence and the type of diagnoses, but maybe not...

Good luck, and I hope you and your friend are okay!

Megan :)

05-26-2005, 03:54 PM
Having a good Dr. and leaving a good paper trail helps. Filling out your application with detail helps.
It took 8 months for me to see a dime...really long months.
I worked 35 years (from the time I was 13 in Mom's cafe )
I get a whooping $824.00 SSD and 22.00 SSI
If it weren't for the fact that I life with my Mom (whom lives on even less) I would be up the "creek" so to speak! Thank heavens this old house is paid for!
Oh, and having a GOOD SS REP always helps.


05-26-2005, 03:58 PM
I was told Monday buy an assistant at my congressman's office the judge made a rulig on my caseand that I don't need a hearing. I will have his answer in 30-to 90 days? Does that sound promosing. I had loads of medical records?

Michelle in KC
05-26-2005, 05:15 PM
Hey, SuperMegs,

I want to say that I truly am thankful for the 2 ladies who helped me to file for and get Disability and SSI. I think they were angels from God.

I shoudl write them a note and let them know how much I appreciated them.

Michelle in AR

05-28-2005, 10:06 AM
Hi Dusty,

Well, the "quotes" I gave were more like averages. There are certainly people who get less as well. It just depends on the amount of time that you have worked, and the amount that you actually paid into Social Security. If you get less than $599 in SSD, then you should still be eligible for a bit of SSI, unless you aren't qualified because of your living arrangement, resources, or other income.

I know the system sucks sometimes, and again, I would like to say that I'm sorry that you've had so many problems with it. If there are any specific questions you would like answers to, feel free to post here or private message me. I can't look up your info (or I could get fired) but I can tell you what to do if you need specific info on your own case.

Hugs and good luck!

Megan :)

05-28-2005, 10:10 AM
Marcy in Georgia,

I rarely hear of judges making a decision without any hearing at all. It has happened occasionally, but it could go either way... Sometimes the judge dismisses the case because he thinks DDS (Disability Determination Service) should have found you to be disabled. Then the case gets remanded/sent back to DDS and they have to make a new decision. If I were you, I would call your local office and ask your case worker to figure out what is going on. If I was your case worker, and you called me and asked me what was going on with your case, I would call the Hearing Office directly, and find out what the judge's decision was.

The sooner you find out what the decision is, the better. Remember that for SSI you only have 60 days from the date of the judge's decision to file an appeal. For SSD, I believe you have six months. (I could be wrong here, but I specialize on the SSI side, so that's why I know that for sure...)

Good luck, and I hope you get a Fully Favorable decision!

Megan :)

05-28-2005, 10:11 AM
Michelle in AR,

That is so sweet of you to say! I'm sure your case reps would love to get a letter from you! Management handles all of our incoming mail, so their managers/supervisors would be able to see that they did a good job on your case, too. :)

Megan :)

05-28-2005, 10:13 AM

Yes, having a good doctor and a good paper trail are crucial to getting SSI or SSD benefits. Sometimes having a good attorney can help too, but I have seen just as many people get it on their own, (even at the Hearing level) and then they get to keep all of the back pay for themselves!!!

It does seem unfair that you worked for 35 years and you get less than $900 SSD. But again, it just depends how much you paid into the system... I have no idea how that is computed, but I could ask for you, if you want.

Megan :)

Kandi Neff
05-30-2005, 04:40 PM
Hi everyone,

I got my letter the other day I was denied and I was wondering does everybody's letter say you can work? It said I was able to move about and do somethings therefore I am able to work.
Why is it so hard for people to understand what we go through in a day some days are good or ok and others are bad and very bad!

I also hurt my lower back in 2002 and have pain when I move around a lot or sit to long and have severe depression on top of all of it. I haven't been able to work since my back injury and the IC started two months after I hurt my back. I am so upset right now. :cussing:
I am still fighting with work comp about my job and now I have to fight this to I feel I am running out of energy!! :headbang: I don' t know how much more I can take!!

Thanks, for listening just needed to vent.


05-30-2005, 07:46 PM
Hugs, Kandi!

I am really sorry to hear about your denial. I agree that most of the disability determination examiners don't know enough about IC... To answer your question, if other people are denied, their letters usually say that they can work. Sometimes people are denied for other reasons though, and then their letters would say something else. Those letters come directly from SSA, and not from the disability determination office though.

Remember that you have the right to appeal this denial. I know it's really frustrating to think about going through the process all over again, but I have seen lots of Requests for Reconsideration and Hearings approved.

Good luck, and if there are any questions I can answer for you, just let me know. In the meantime, hang in there!

Megan :)

Kandi Neff
05-31-2005, 12:56 PM
Thanks Megan,

I am going to appeal. :)


05-31-2005, 02:32 PM
kandi i got the same letter at first. I didn't want to go threw all the bull again so i got myself a good lawyer it went all the way to a court hearing in which the judge at that time wanted to know why it went that far. he said with my medical back ground i shouldn't had to go threw all of that. I didn't get to work much because of my health since birth so my income is low but i did get ssd. what made me mad was when i was approved they didn't go back and give me the ssi. they said i didn't need it at the time even tho. my husband was out of work which they knew this it was like a year later when i called in to report i had moved. that i found out i could get ssi because of there mistake i didn't get the back time that i should had from the beginning.

Super meg is there anything i can do about that?
also when i first started getting ssi with my ssd. i was getting over a hundred dollors a mth. then they said they over paid me even tho. i proved my husband was out of work again, (which didn't matter to them) they still cut my check out for about a year. when it got started back up it was only 31.00 a mth. when he went back to work he has been back at work now for in sept a year. they haven't gaven me a raise or cut it down. which i reported.
I have reported everything in a timely manner, but it seems like when he made more money the more they gave me. when he made less they gave me less.
i also got a letter saying yes my children was approved for benafits but all the benafits was being paid to me and they couldn't reseave any. is that right?

sorry i know you have tons of question from people here. its just that I don't think we ever had someone here that worked for the goverment willing to help.
I would like to send you out a great big THANK YOU!! :grouphug: for going the ex. mile to try to help us icers.

05-31-2005, 07:49 PM
I think its great that everyone is doing there homework on this subject. I was turned down 2 and I finally gave up. My parents are giving me a monthly allowance and that is what I live with its very hard. I have 2 girls and they want everything and its hard to say Sorry I cant. I wish everyone good luck.

Michelle in KC
05-31-2005, 07:52 PM
NEVER give up! Please, I urge you to reapply. Again and again. Keep copies of your papers so you don't have to fill them out again. And be VERY VERY detailed. I detailed how I am peeing every 30 minutes and lay down due to pain and then it's time to pee again and lay down again. I literally talked them through a 24 hour period of my bathroom trips. And I was approved the first time! I urge you to try again.
Michelle in AR

06-01-2005, 05:11 AM
I have a question, I am new to IC, I was just diagnosed yesterday. Drs thought my PAIN was from my syatica, or just in my head. I finally found a gynocoligist who happens to be good friends of a urogynocolist who specializes in women with IC. He sent me off to his friend and yesterday he diagnosed me. In March I quit my job( which was part time) because of the stress and pain was getting too much for, not to mention going to the bathroom all the time. Recently, the pain and frequency has gotten worse. I go at least every 15-20 min and I am up between 3-6 times a night. I am getting state aid now but they are pressuring me to go back to work. I have heard alot of people on the forum talking about ssi and ssd. I am alittle hesitent because I don't want to apply and go through the frustration of being turned down. I was at my last job for two years, I went to part time last summer because of fatigue and pain. I guess I am just looking for some guidence. What do you think

06-01-2005, 06:51 AM
Hi you said we could ask you questions. How do we qualify for help from SSA or SSI.
thanks erma

06-01-2005, 01:55 PM
Hi Erma!

Well, there are different qualifications for SSD and SSI. SSI is a needs-based welfare program, so in addition to your disability, we look at your income (and that of your spouse or any children in your household), your resources, and your living arrangement (like if you have rental/mortgage liability, or if you're living with someone else for free...) Once we gather than info, we send your case up to the state DDS (Disability Determination Service) to contact your doctors and get all of your medical info. They actually make the decision about whether or not you are disabled. The most SSI a person can get is $579 per month. Some states (like California) have an additional state supplement because of the higher cost of living. Most states do not offer that, though.

SSD has the same disability process, (of filing an application, doing a disability report, and sending the case up to the DDS) but it is based on different things. To qualify, you have to have enough "quarters of coverage." This is based on your age, and we figure out how long you have worked, and how much money you made and paid into Social Security during this time. The length of time you work and the amount you made also will determine the monthly amount of benefits that you are eligible for. If you have children under 18 in your household and you get SSD, you can sometimes get additional money for them, as well. To find out of you are eligible for that, you would want to call your local office or the 800 number, which is (800) 772-1213.

If you schedule an appointment to file a claim, you can choose to file at the office, or over the phone. Either way, you will do an application, a disability report (where you list things about your condition, your doctor's info, medication you take, tests you've had, and etc.) with the claims representative who is taking your claim. They will walk you through the process and answer any questions you have, as you go along. You will also need to sign medical release forms, so we can contact your doctors and get your medical information. You MAY need to fill out a work report, if you have worked since you became disabled. The claims rep you work with will let you know if you have to do this.

Be prepared to provide your doctor's names and their addresses and phone numbers. It also REALLY helps if you know when you went to see them. Same for hospitals, therapists, or anyone else who would have medical records on you. You will also need to know the names of all of the medications that you CURRENTLY take. It helps if you know the milligrams of meds you take, and who prescribed them, as well. Same with tests that you've had (ultrasounds, CT scans, blood tests, MRI's, etc.) You will also need to know approximate dates for when you had the tests done.

Finally, you will need to provide an original or certified birth certificate if you are filing for SSD. We can start processing your claim without seeing it, but we cannot pay you a benefit until we have verified it. We might also ask you for proof of any income that you receive, or that anyone else in your household receives (pay stubs, pension info, unemployment, etc.) We can also start processing your claim without that, but we will need to see it before we can pay you any SSI.

I know this is a lot to take in, but the claims rep you work with should be able to tell you exactly what you need for your specific claim. They will also walk you through the whole claims process.

I am a claims/case representative, so if you have questions that your own case worker doesn't answer, feel free to ask me. Or if you want more general info about SSD or SSI, feel free to let me know!

Good luck with your claim, and remember that getting your claim filed as soon as possible is very important! In most states, it is taking 3-6 months for the DDS to make a disability determination. So the sooner you call and make an appointment to file your claim, the better!

Megan :)

Michelle in KC
06-01-2005, 01:58 PM
You are providing a valuable service to all on the ICN.
You understand our fears and issues more than most.
Thank you.

06-01-2005, 05:52 PM
Thanks for your info. I am going to try again and again just like you said.

06-02-2005, 06:26 AM
Thanks Michelle (and Ruth!)

If there are any other questions I can answer, just let me know!

Megan :)

06-02-2005, 05:22 PM



06-03-2005, 04:41 AM

You are totally right on... Your doctors definitely have the most say in the Disability Decision. The more "on your side" that they are, the more likely you are to be approved. Does that make sense? I hope so...

Megan :)

06-03-2005, 04:44 AM

Yes, SSI (or SSIDI) is a Supplemental Security Income program. However, it is still based on your disability. Even if you meet all of the other criteria, you still MUST be disabled, or over age 65.

As for being over the resource limit, if you "spend down" your resources to below $2000, then you can be eligible for SSI again.

That's cool that you have attorneys handling your case. I'm sure it gives you peace of mind, and they make it their job to push us for a decision as soon as possible. ;) However, most of the time it is just as easy to go through the process yourself, and then you don't have to pay any attorney fees if you win your case!!! I think it's all a matter of personal preference though... And I definitely think it's good that you found a lawyer who won't charge you until you actually become approved. (Even then they can only get 25% of the back pay, or $5300, whichever is lower.)

Megan :)

06-03-2005, 05:46 AM
I am receiving regular S.S. just hoped there would be something else to help with the expense. So far we have been able to handle it as my URO will let me pay it out. But I also have heart problems and that is another expense.
Getting old is just the pits.

06-04-2005, 06:31 AM

Well, if you receive more than $599.00 in "regular" Social Security, or SSD, you would not be eligible for any SSI. However, Dusty was right... We do have a new form of Medicare coming out this year, which will save a lot of people, (especially low income people) a ton of money. This program is called Medicare Part D, and it is to help supplement the cost of prescription drugs. I don't know if this will cover things like DMSO treatments though... I will have to look into that, once the info comes out.

We are just now being trained on Medicare Part D, but there is info on our website about it, for the public, at www.ssa.gov. You can see whether or not you would qualify for it, and beginning July 1, 2005, you can fill out an application for it. Like I said, it is going to save a lot of people a ton of money. Some people will be paying $2 per month for ALL generic drugs, and $3 per month for all name brand drugs!!! However, it is all based on your household's annual income.

If you want to learn more about the program, (which actually begins it's prescription coverage on 01/01/2006) take a look at our website!

Good luck!

Megan :)

06-04-2005, 11:47 AM
Thanks so much for you help. I don't receive that much and I put the site in my favorites. When I can sit here longer I am going to search for info on it.

06-06-2005, 09:36 PM
Hi Megen -
First, thank you so much for your kindness and willingness to answer our Social Security questions. It's so helpful to have an IC "sister" here with firsthand knowledge of the SS system.

My question to you is this: When I received my SSD Award letter in March (9 months after first application) and read through the supporting pamphlets and materials, there were statements regarding review intervals where eligibility would have to be reaffirmed. It stated in the pamphlets that my specific review interval would be indicated in the Award Letter, but my letter did not contain any mention of this interval. Is it safe to presume that since I was 60 at the time I received my letter that I may not have to go through this review process?

I've had no contact with SS since receipt of my letter, and don't want to contact them with this question and risk stirring up the pot! While my doctors (Uro for IC and Gastroenterologist for IBS) were helpful in my initial application, I think much of my award was based on the SS psychologist's recommendation, and he is not someone with whom I'll have a continuing patient relationship.

Thanks in advance, Megen!

06-07-2005, 08:57 PM
Dusty -
Just wanted to commend you on the eloquent manner in which you expressed your reaction to the need for applying for Disability. All that you said is true - it's very disheartening to reach the point where you can no longer maintain a work situation, and further so to realize that - like it or not - you need to reach out for financial assistance. It is, in so many ways, an emotional defeat.

Ten years ago I never would have expected to be in this situation. My job was stable and lucrative, and my 401(k) was abundant - almost $650,000. My company was suddenly bought out and, because the SEC felt there was a possible monopoly situation in the consolidation, they froze our accounts for nearly 2 years while they conducted their investigation. By the time the company sale was allowed to finalize, all our frozen accounts had been hit by the downfall of the tech industries and stock market. Because our accounts were frozen, we couldn't make any withdrawals or changes. My
401(k) had dwindled to a mere $67,000. Of course, shortly thereafter our new HQ began consolidating regional offices, eliminating many and downsizing a huge percentage of employees...needless to say, when my VP boss was let go, there was no need to keep me either. Soon after, my IC kicked into high gear, perhaps because of the additional stress. Financially, I've never been able to recover what was to be a wonderful retirement funding. Add to this the loss of health benefits once COBRA ran out, and the necessity to now pay about $8,000/yr. for health coverage. Two years ago I sold my home because I could no longer physically or financially maintain it, but fortunately received a nice profit on the sale - these are the funds I now live on along with the SS Disability. The emotional adjustment has been difficult.

Wasn't expecting to "spill" all this, but it was strangely cathartic to put into print. Being granted Disability benefits upon first application was a blessing...I don't know how I would have gotten through all of the appeals, reconsiderations, lawyers, etc. that so many IC people have had to endure. I was deeply grateful, and made sure to send a Thank You note to the SS gentleman who reviewed my case. But, as I said initially, I'd like to now just let the dust settle and keep my case lowkey, so as not to have to defend my eligibility over and over. Throughout the process, I never adopted an attitude of "entitlement" to benefits - instead, I considered my application as a "request" rather than as an expectation for return of monies paid in. Early in the process, I was told by SS that this was appreciated on their part.

OK - Pity Party is over...if you've read through all this, many thanks. :bonk:

06-08-2005, 05:23 AM
I read all of your post and that was no problem. Sometimes just to unload is what is needed and I do not mind. It is a difficult situation and yes your right..it is money we pain in while working and expect it to be there when we need it.
I am so sorry to hear all that has befallen you. Unfortunately this happens in corporations all too much. I am sorry it happened to you. As we plan on that, we invest for that reason and then this happens.
Life can change in one heart beat. But it is how we stand firm and deal with what is handed us that counts I think. I know this doesn't bring back anything for you, or for me, but we do and will survive. I haven't any probs with pity parties..I think they can even be healthy to do sometimes. So don't worry about that one either.
I hope you have a good day and feel good today,

06-21-2005, 05:10 AM
Hi Tunia!

You are right, we do check for continuing eligibility in all cases by conducting a medical review. This happens no matter what one's disability is. However, you COULD be "safe" from this review because of your age. It's hard to say... Usually these medical reviews are conducted every 5-7 years. In your case, your Social Security Disability benefit will "roll over" into Social Security Retirement when you turn 65. This happens automatically. Once you get Retirement benefits, there is no need for any medical review. But it IS possible that your case could be called up for a medical review. The only way to really find this out would be to call your local office or the 1-800 number and ask them. Your record should have a medical diary date posted on it, and they will be able to tell you when it is. If it's after 2010, (or whenever you turn 65) you will be safe.

Even if you do get called up for a medical review, it does not mean that your benefits will be ceased. It's always a possibility of course, but it's much more common for the disability benefits to be continued.

Good luck, and if you have any other questions for me, feel free to let me know!

Megan :)

06-21-2005, 08:31 PM
Megen -
Thank you so much for responding! I was a bit afraid that we had "lost" you...

As usual, your information is helpful, indeed. Medically, my situation hasn't changed in a while, and we're not yet sure about the future. I'm just so afraid to reach a point of relying on the monthly funds, and then have them yanked away when I least expect it. Hopefully, they just figure I'm an old hag :), so why bother?

Hope that you're doing well!

06-27-2005, 11:28 AM
I have a question. I was recently denied. They said that they recognize that I am currently disabled, but I should be able to return to work by 2/2006. Any suggestions on how to appeal that? There's so little long term info available.

06-27-2005, 02:26 PM
All you have to do to appeal it is to ask your claims representative at Social Security for an appeal packet. You can update your doctor/medical info. If nothing has changed, you can say so... Or you can let them know if your condition has gotten worse... The sooner you appeal the better though, as you only have 60 days to do so! (60 days from the date of your denial letter.)

Once the Disability Determination Service receives your file, they will give it to a different disability examiner- not the person who made the decision last time. If you get denied again, you can appeal it again, and it goes to the Hearings level.

If you have any other questions, feel free to let me know. Good luck!

Megan :)

06-28-2005, 10:40 AM
Hi Meg,
I have been gone for a while from this board due to personal reasons but, I happened upon this thread. Thank you so much for all your help in these matters of Disability. I have a few questions. My first application was started in April of this year. I have had IC for 2 years now. I have not worked since June 1, 2003. I have had all the IC treatments and to no avail. I suffer 24/7 from the pain of ic and my other disorders. Luckily, I have a great Uro. (and nurse) and a very good Pain Specialist. I do have a lot of medical records regarding my visits to the Dr's these past years. However, my family Dr. would not say that I am disabled. He said that he has no qualification to do so. So, my Attorney did not submit it. My Uro. wrote a good letter as to my history with IC but, also would not definatively say I was "disabled". My Pain Sp. will only do so if I go to an appt. with a Occupational Health Dr. I am in the process of setting that appt. up. I am not sure what to expect from that visit but, hope that it will help. I am worried as to how they can also tell that I am disabled. I have normal strength but, can't sit or stand for any long period of time. I also go to the bathroom about every 15-20 minutes and suffer from daily pain. I am also on narcotic medication 24/7. I am constantly sleepy and forgetful on those meds. Anyways, I also have: Fibromyalgia, Arthritis in my knee, Hypothyroidism and depression. What are my chances of winning if my Dr.'s will not say that I am disabled?? Both my Dr.'s said that they are not trained on how to diagnose Disability and I also suspect the clinic that they work for won't allow them to? That may be why my Pain Sp. is having me go to this other Dr. (Occ. Health) One more question. Do you or anyone else know how this appt. with the Occup. Health Dr. will go? Will they be asking me if I can do certain things or will they only be testing my strength etc.....?? I am really scared right now that my chances will be nill bc 2 of my Dr.'s won't say I am disabled. Please help! Thanks, Dana

06-28-2005, 04:42 PM
contact a support group in your area for advise

06-29-2005, 06:52 AM
support group in my area? Don't have one......I am hoping that Meg will see this post? Thanks

06-29-2005, 07:04 AM
you can call the ic network direct if there aren't any support groups in your areas.
ICN Administrative Offices
4983 Sonoma Highway, Suite L
Santa Rosa, CA USA 95409
Phone: (707)538-9442
FAX: (707)538-9444

good luck!

06-30-2005, 09:16 AM
Does anyone know how long the appeals process takes?

06-30-2005, 09:19 AM
Appeals times can vary depending on where you live and what court in your state you have to go to..My appeal took 17 months. This was from the time I mailed in appeals paperwork until I got into court...

06-30-2005, 07:04 PM

Sorry that it took me a while to reply... I haven't been on the board in a few days...

To answer your question, no, your doctor does not have to say that you are disabled in order for you to be found disabled by SSA. I can't tell you for sure what your chances are, since I am not a Disability Examiner. I don't make the medical decisions... But as a case worker/claims representative, I see people get approved all of the time without a doctor saying directly that a person is disabled. In fact, in most cases, doctors won't say for sure if a patient is disabled or not. They usually just say how your pain affects you, and how it could keep you from working at a Substantial Gainful Activity level.

I really don't know about the appointment with the occupational health doctor. In Oregon, they seem to side with the claimant more often than not... However, we don't send a lot of people to them...

If for some reason you are denied, I would encourage you to keep appealing your case. A lot of cases get denied at the Reconsideration level, (the first appeal) but statistically, your chances of getting approved seem to get a lot higher a the Hearings level.

Best of luck, and I hope that all goes well with the doctor's appointment!!! Like I said, I can't guarantee that you will be approved for benefits, but I HAVE seen many, many people get approved without a doctor actually stating that they are disabled.

Hope that helps!

Megan :)

06-30-2005, 07:05 PM
In Oregon, the Reconsideration portion of the appeal can take anywhere from 1-6 months. At the Hearings level, it usually takes 9 months to 2 years. After that (Appeals Council, District Court, and etc.) it takes even longer.

Megan :)

07-01-2005, 04:25 AM
Megan, I just wanted you to know that you are very much appreciated here. It's really helpful to have someone to answer SS questions.

Warm hugs,

07-01-2005, 05:31 AM
Thanks, Donna!!!

Hugs to you too! :)

Megan :)

07-01-2005, 07:21 AM
Megan, thank you for your answer!

Dana, I was told specifically that it does not matter whether or not your Dr says you're disabled. They review the case based on their own criteria. Someone that has a Dr that says they're disabled does not have an advantage. So I think you're fine without. Best of luck to you, I know I hate dealing with all of this stuff. As if it's not hard enough to admit to yourself that you're disabled.

07-01-2005, 05:18 PM
Hey Megan, Or Anyone who may know the answer to my question. When you file for an appeal if you listed a Dr.the first time you filed, do you have to list this Dr. in the appeal? I am filing an appeal & I am scared to death of being turned down Again! As it is everyday I am fighting disconnection notices & reposessions. I feel that I am being punished for being sick. I would love to be able to do the things I have always done.(Like Work) Anyway, Thank You. I Hope that You ALL have a Very Happy & Safe 4th!!

07-01-2005, 05:45 PM
Hi Megan, just a quick question. If a person is getting benefits, but can manage to work a little- part time, how much can they make per month without being in danger of losing thier benefits? Thanks, Judith

07-02-2005, 04:36 AM
Leslye I am very sorry about the disconnects and repos. I was in your boat not to long ago. I came like very close to losing my house. So close you can reach out and touch the repo man. Its not a fun thing I know I hate it. It took so long for me to get, but I did not want to give up because I came so far. The only good thing was the back pay of over 2 yrs. I used the same drs and added 2. I had changed uros b/c my old one refused to see me b/c of lack of insurance and I think this might have helped some b/c his notes to the SS people were not the best. I also added my gyno whom I have seen since the beg. In fact his letter of disability was the only letter I got in my favor. But its a long hard road. I know and I am sorry.

Also for Judith I think I read in previous thread, not sure and I am sure Megan will be around but I think it was $800 or less. Not sure though.....

07-02-2005, 06:21 AM

Thanks for your input!!! I just wanted to add that any doctor COULD say that someone is disabled. In fact, some doctors do it for their patients all of the time. So Social Security/the Disability Determination office pretty much ignores that anyway. We do use our own criteria to make disability decisions.

Megan :)

07-02-2005, 06:23 AM

No, you do not have to list the same doctors in your appeal/reconsideration. When you fill out that SSA-3441 form, (the updated Disability Report) just list the doctors that you want us to get info from.

Best of luck!

Megan :)

07-02-2005, 06:26 AM

If you are receiving SSD benefits, you can make $840.00 per month GROSS, before your benefits stop. If you do decide to go back to work and you end up making more than that, we will give you a trial work period... This means that you can work for 6-9 months and make whatever amount of money before your benefits stop all together. If you stop working within two years of when you started, (and your SSD benefits have stopped) we can reinstate them without a new medical decision.

If you receive SSI, income from work is counted a bit differently. We also look at gross income, but we exclude the first $65.00 per month you make. The for every $2.00 you make at work, we take off $1.00 for SSI.

I hope that helps! Best of luck!

Megan :)

07-02-2005, 08:04 AM
Thanks for the input Megan!! I am just very Thankful that We do have both cars paid for. I am very afraid that I might lose my: washer,dryer,frig,furniture,computer,etc...But who needs All of these things when you are living in a car!!LOL:) Or when you do not have electricity. It's either Laugh or Cry!

07-04-2005, 07:28 AM
Thanks Meg and everyone else who replied! I have more hope now that the decision will not be on my Dr.'s NOT wanting to say I am disabled. I am going to go thru with the appt. with the occup. Dr. If it doesn't turn out well, then, my lawyers will not submit it to the determination person. Thanks again!

07-05-2005, 01:03 PM
Did you have a attorney when you won your case?,mine just dropped me ,Saturday i recieved a letter,so I may be going on my own.
thanks jibbajabba

07-05-2005, 02:26 PM
I do not know if this helps, but I know several people who filed for disability without using a Lawyer & they got it. I have filed once & was rejected, I will be appealing this without a Lawyer & will get a Lawyer if I don't win this time. Without being to nosey & you can ignore the question, why did your Lawyer drop you? I have gotten Alot of Helpful advice from this website & a few others. If you try to go it alone & would like I can give you 2 websites that I have learned A Great deal from. Is this your first try at it?

07-05-2005, 02:33 PM
These websites have Helped me out ALOT, the first one is the BEST thedisabilityexpert.com & severe.net They have taught me so much. I only wish that I knew about them before I filed the first time.

07-05-2005, 03:18 PM
jibbajabba317 No I did not have a lawyer during my appeals with the judge. Like you I had one in the beg. but he dropped me to. He was in a different city from where I had to go to court. He knew this in the beg but he took the case and we tried for several months to get the case moved to his city. I then had trouble finding another lawyer to take my case. I feel because of the lack of knowledge of IC (which was my main case) and not having much time left before I went to court no one would help me. But in the beg with the first lawyer I did all the work anyway. Getting letters from dr to medical files he really did nothing for me. When I went to court that morning I could have gotten my case in for a different day just in case I wanted another attorney but I told her no b/c it took 16 months just to get that day, I did not want to put it off another day.

But be warned MAKE sure your previous lawyer sends a letter to both the appeals judge and also you case worker and location stating he dropped the case and he is not owed any monies from your back pay. My lawyer sent a letter to the appeals judge (supposely) but when I got my check for the back pay they withheld money for the lawyer. And they took more than the normal 25%. I found out from SS that a lawyer can request a higher % and if the judge approves it he can get more. The bum of a lawyer did that to me. He told me he would only take 25% or $5300 which ever was more. And they withheld $1100 more than the 5300. But luckly they did not send him the money. But it took me another 3 months to get that money back from SS. So be warned.

I never needed him. My case was provable to begin with and the occupational expert was the deciding vote in my favor. Because although IC is reconzied it was not listed in the "bluebook of approved disease's" and although the judge and the doctor they had there that day agreed I was disabled they could not rule on that alone. So it came down to the occupational expert. I know of people who go to court and the judge never even talks to the attorney just the person who is trying to get SSD. Best of luck to you when you go to court. If you need to know anything else just pm or email me. I will help with what I know.... ;) I know things will work out for you...

07-05-2005, 03:31 PM
THANKS LES,JIBBAJABBA317 :bonk: :bonk: :loco:

07-05-2005, 03:40 PM
Thanks Patricia,
How True That Is My Attorney Too ,she Wanted Me To Do All The Work For Her ,i Mean What The Heck Are They Getting Paid For? SHE GOT THE RECORDS FREE FROM THE WELFARE DEPT.She Did Tell Me She Would Be Sending Me A Bill In The Future For Her Time And The Monies She Had Out Out For What Gas,this Will Be A New Appeal And I Dint Use The I.c. The Last Time Didnt Know What The Heck Was Wrong With Me For 4 Years I Suffered Until Last Year Finally At Last They Found The Problem,well Not They My Urooligist Which Is Great,i Am Going To Try And Get Him To Write A Letter About How Is Disables Me So We Will See...again Thank You

07-05-2005, 04:41 PM
You Are So Very Welcome jibbajabba317, If there is ever anything else that I can help you with just let me know! Boy, I would LOVE to have a Hearing on the 21st. Heck, I would LOVE to have one in the A.M. I WISH YOU THE VERY BEST of LUCK!!

07-06-2005, 03:45 AM
You are welcome to...I know how frustrating the whole SSD process is. Good luck on the 21st and also with the new attorney you are seeing.

07-06-2005, 06:04 AM
My husband is also going to my hearing I was wondering if I should take my daughter w/me to the hearing being she knows alot about my health issues.I also thought about taking my 12 year old grandaughter because she knows what I can and can't do with her beacause of this too,or would that be stupid?Is there a age limit?......

Thanks jibbajabba317

07-06-2005, 06:05 AM
My husband is also going to my hearing I was wondering if I should take my daughter w/me to the hearing being she knows alot about my health issues.I also thought about taking my 12 year old grandaughter because she knows what I can and can't do with her beacause of this too,or would that be stupid?Is there a age limit?......

Thanks , jibbajabba317
:bonk: :bonk:

07-06-2005, 06:27 AM
jibbajabba317 I dont know about your granddaughter. But I would take your daughter with you. I took my mom and she went into the hearing with me. Like you I took her because she has been there from the start and knows how IC affects my daily life. In fact the judge questioned her. Usually they dont tell you that day if you get it or not, but the judge said we were very crediable in my description and my moms. I did find out that day I won my case. Talk about happy. Also maybe your hubby and daughter can both be in there with you. I dont know if they limit the number of people. Also dont be afraid to stop the hearing if you need to go to the bathroom. Stress plays a major part in my IC and I was flaring bad that day. Before my hearing even started I kept seeing a man and he kept seeing my go to the bathroom in the waiting room. Turns out he was my occp. expert. I also had to stop the hearing 3 times to go. So dont sit there in pain. I also took a pain and voiding log. Showing how much I go in 24 hour period. I took about a weeks worth of the log. The judge liked that I bought that. I also had my notes and all the stuff I had but I did not have to refer to them. GOOD LUCK

07-06-2005, 03:13 PM
Thanks Patricia :)

07-07-2005, 11:06 AM
Does anybody know if there's a way to check the status of an appeal online?

07-08-2005, 12:50 AM
Today I will see if i have a attorney....They will be reviewing my records ,I'am so nervous about this hearing coming up,I have started a log too took your advice on that started one before then quit do you think that it is wise to ask my uro to write a letter for me saying how this affects my life?
Thanks ,jibbajabba317

07-08-2005, 03:27 AM
jibbajabba317 I hope things go well. Yeah if you urologist will write you a letter stating you IC causes disabling problems and how it effects your life will help alot. Make sure if you do get on keep a copy and send a copy to the hearing judge office right away and check up on it to make sure they get it. My old uro was not very helpful to me. After I got my interstim he made it sounds as though my freq was cut way DOWN from 40+x a day to maybe 8-10..Mine has never been cut that low. And I never told him that. This is one reason I had my mom go with me cuz she went with me to all appointments after I got my stim and I never once told him that. I got a great letter from my ob/gyn dr. He has been with me from the start of this disease. He knew what I had and tried to get my diagnoses 2 yrs before I got it. So his letter was great. I was very nerveous before my hearing to, but things worked out great and I am hopeful yours will to. GOOD LUCK!!!!!

07-09-2005, 03:28 AM
Super Megs,
Hi, If i win disabilty,how can you determine what you will recieve monthly? ;)
Thanks jibbajabba317

07-09-2005, 08:00 AM

No, there is not an age limit for people who can attend or testify in hearings. Wether or not you decide to bring your grandaughter is a personal choice. It depends on how articulate and mature she is, I guess. If she doesn't feel comfortable testifying, and talking in front of other people, then I wouldn't ask her to. I would definitely bring your daughter though... It does help to have people testify on your behalf. However, the judge will take it into consideration that this is your family, and they are going to be on your "side" of things... So one person from your family testifying will probably be enough.

Good luck!

Megan :)

07-09-2005, 08:02 AM

I can't determine what you would receive monthly... Are you applying for SSI or SSD? Or both? If you call one of your claims representatives/case workers at your local SSA office, they should be able to let you know... I could take a guess if you are applying for SSI, but I would have no idea for SSD... I don't even know what kind of formula they use to figure that out, but it would take about ten seconds for your case worker to look that up for you...

Good luck!

Megan :)

07-09-2005, 09:05 AM
Thanks SuperMegs.........

07-12-2005, 06:59 PM
Hi Megan,
Thank you for offering your help, that was really sweet of you!! I am currently on disability through the EDD. My benifits will run out soon cause for the year they go off of I only made nine thousand dollars, and that amount will be max out on the 2nd week of Sept. My question is, I am still very ill with my IC and also have Fibromyalgia to boot. My doc sugested permenant Disability cause I have been so sick for years now. Is there a criteria that I would have to have to qualify? For example how many years I have worked? How much I made? Or a time limit I worked? I am 31 and started working a 16-22. Then I was a stay at home mommy till 2 years ago. I did babysitting the whole time I was home but don't have nothing to prove that cause it was "under the table payments" Neither of us claimed them for taxes. I worked my last job for about a year as an office manager. I have been of EDD dis. for about 5 months. So when this is over(EDD dis.) in Sept. what do I need to do? I know you don't have all the answers for me but any will be apreciated!! Thanks in advanced!!!!!!!
God Bless You and take care, hope you are doing good, Cassandra :angel:

07-25-2005, 01:33 PM
No, you can't check the status of an appeal online, but we can! Just call the 1-800 number, or even better- your claims representative, and ask them to check!

Good luck!

Megan :)

07-25-2005, 01:36 PM

If you became disabled before you stopped working, we can take that into consideration, and your "onset" date may be pushed back to an earlier date. The onset date is what we use to determine when and if you have enough credits of work to qualify for SSD benefits. We also take it into consideration that you have been a stay at home mom. If you apply for benefits, be sure to mention this to your claims representative. We may be able to count that as "child drop out years," which means you stopped working to care for your children.

Good luck, and I hope this info helps! Feel free to let me know if you have any other questions!

Megan :)

07-26-2005, 05:26 AM
Dear Megen....
The fact that this thread has reached 7 pages in a relatively short time is testimony to importance of this topic to so many. Thank you again for making yourself available to answer questions for us - It's truly appreciated and has been a big help.

07-26-2005, 06:51 AM
Thanks, Tunia!

I'm glad that I can help people out! I know how bad IC is, and I am lucky that I'm even able to work at all right now... I don't know how I am going to keep working if my IC gets much worse, so someday I might be the one trying to file for SSD benefits! :(


07-26-2005, 06:57 AM

Child drop out years are when you have stopped working to stay home and take care of your children. It can only be for a certain amount of time though (like 2-3 years after each new child has been born.) Since I mostly work with the SSI program, and child drop out years has to do with SSD, I don't know much about it. I asked a couple of my SSD cohorts about it this morning, but they weren't too sure about the details of it either. LOL... I am going to have to do more research and get back to you on it... However, I can tell you that the reason we look at it is to determine if we can prolong your "last date of insurance." LDI (last date insured) is usually about 3 years or so after you stop working full time, depending on how much you were earning. You can only receive SSD benefits if you became disabled while you were "insured." So if we find out that you had child drop out years, and we can add that on to your work time, that will make your "date last insured" also move out to a later date. I know that sounds really confusing, and I'm sorry that I'm not explaining myself very well... I will try to get back to you with a more concise answer ASAP.

Megan :)

07-26-2005, 06:58 AM

When you check the status of your claim online, do you have to have a confirmation number? Or can you just use your SSN? I have never tried it before (since I have never filed a claim of my own!) so I'm not really sure how that works for you guys...


Megan :)

07-26-2005, 07:01 AM
Here is a little bit more that I found on child drop out years:


Where the number of regular dropout years for a DIB computation is less than 3 years, additional years, up to a total of 3, may be added to consider years the NH was caring for a child.

1. Requirement For Use
A child care drop out year may be granted if:

The NH had a child (either his/her own or his/her spouse's) under the age of 3 with him/her substantially throughout the year and the NH had no earnings (covered or non-covered) in that year.

The year must also be a year that would be selected as a benefit computation year.

2. Substantially Throughout The Year Defined
A child is considered to be living with the NH substantially thoughout the period as follows:

The child was alive and under age 3 and has lived with the NH for a certain number of days in each calendar year. For a calendar year to qualify as a child care year, the period(s) during the calendar year when the child was not living with the worker or cannot exceed 91 days, or one-half of the period in question, whichever is less.

For partial years (i.e., years during which the child was born, attained age 3, or died), the period during which the child was not living with the worker cannot exceed 91 days, or one-half of the period in question, whichever is less.

3. Effective Date
This provision is effective for benefits beginning 7/81.

07-29-2005, 08:11 AM
The website has actually said "Temporary Shutdown" for about a month.

07-29-2005, 08:32 AM
I never knew about these child drop out years. They must not tell you about this. I was reading this and was so shocked. I have three children that are grown not, but they were not grown when my SSD started. Two natural born and one adopted. I have never heard a word about being a stay at home mom. I worked off and on and was basically home to raise my kids. I can't get over this. Why do they not tell you about this?
Yes you are a great help to so many and thank you for taking the time to do research,look into matters your not sure of, and then to come on here after you have worked yourself and answer our questions. I am sure I speak for all when I say we appreciate it.

07-29-2005, 04:34 PM

If I understand this right, not only can the dropout years increase the amount of time that you may qualify for SSD, it also changes the date from when your benefits amount is calculated. For instance, I worked up until my first child was born and always had children under the age of three while I wasn't working before I filed for SSD for IC. What I gathered from reading the policy at ssa.gov is that my monthly benefits amount should be based off of what I was making when I left my job (there was a 3 year lapse from when I left to when I developed severe IC - during those 3 years, I had 3 children ages 3 and under (a 3 yo and a set of twins). If this is how it's calculated, then the difference in the benefit amount for me would go from about $1100 a month to $1700 a month, based off of the online calculator. Am I right in my thinking? I have called my case worker several times since reading your post and the policy the other day, but I can't get her to return my call. Regardless if it changes benefit amount, you have no idea how much you've helped me! My denial letter stated that they DID find my condition to be disabling, but that it became severe AFTER my SSD insurance coverage had ran out (b/c I had taken off time to spend with my kids). After reading the policy, I should still be eligible until Dec 2006, instead of Dec 2003 when I was told my eligibility ran out! I applied in July 2003. I did appeal the decision and am waiting on a hearing date ( it has been over 2 years since my initial application). I was told I should have a date by Jan 2006.

Dusty - If this child dropout policy wasn't taken into consideration when you filed, like you think it wasn't, then if I'm understanding this thing right, you may have been underpaid all this time (if you were home with your kids after 1981)! I would definately read the policy on SSA's site to see if that might be the case, and then call your case worker once you're ready to educate her on their policy.

It really aggravates me that my case worker didn't mention this and that no one else caught it in my application. It is written several times in there that the reason I originally quit working in 1999 was to stay home with my children and the reason I didn't go back to work in 2001 is b/c of severe IC and being on enough narcotics to sink a ship! :cussing:
OK, I'm done cussing now! :biglaugh:
Sorry so long Megan, but am I on the right track?

07-29-2005, 04:56 PM
Thanks sooooo much Megan for taking time out of your own busy life to care for others!! I and many others apreciate and thank you for helping us. Thanks for the info you gave me. It gives me an idea of what to expect more or less. How are you doing? I read you are still able to work and I am so happy to hear that!! I know it must not be easy though cause IC is so hard to live with! I hope you stay well and take care of yourself. Make sure you take care of YOU too. :) Well got to go lay down for a while, my bladder needs its best friend the heating pad :loco: :)
God Bless you, Cassandra

08-01-2005, 04:25 PM
can anyone please explain what the difference is dds,ssi,and ssd??

08-11-2005, 02:34 PM
hi supermegs!

i recently applied for the working disabled program in new york.

i applied last month and had to wait a month for my appt with a case worker, who was very nice and understanding.
he told me to have my primary care doctor fill out the paperwork so i promptly made an appt for this thurs to have him fill it out. i have an hmo throught my employer so i have to see him before all referrals...which are MANY MANY MANY because one doctor always leads to another.
i have been suffering for most of my life from IC, after having my cysto with hydro my IC changed from my regular dull pelvic pain and uti feeling to FULL BLOWN severe IC with chronic pelvic pain. i still work despite my chronic pain which on some days is so bad i spend A LOT of time in the bathroom vomiting at work and peeing 3 times an hour, though i have had to change jobs because my last job required a lot of standing and physical labor and at this job i can sit for most of the day and sneak off to the bathroom without much notice (basically telling them i am going to do something else and instead i go to the bathroom) i miss work a lot and am late to work a lot cause i am sick or i have doctor's appointments.
i do have insurance through my job....but have a very low income and am having a hard time making ends meet. the medicaid will be my secondary insurance so i can be reimbursed for my copays.

today i brought my paperwork to my primary care doctor to fill out where he told me that my urologist has to fill it out. the urologist i am presently seeing is located in manhattan.....an hour and a half away from me. of course i saw him yesterday and i wish i would have known...now he is not in the office again until next tues. my case worker told me i have an extra 10 days for my form to be filled out and returned because he is going on vacation next week. (instead of the normal 10 days he says)
i felt like my doctor didn't really understand how i could be disabled and working. i was explaining to him how i work because it is a distraction from being sick but it is affecting my work because i have had to change jobs and my current job i feel is getting fed up with my very many trips to the restroom and frequent lateness and sick days.
i am financially becoming unstable because of the many doctor's appts, some of which are not even covered by my insurance.
i would love to move out of my parents house so much but i can't afford to because i am sick.

i also don't understand how exactly this all works. my urologist has to fill out the paperwork...but i am also seeing a physical therapist for my pelvic floor dysfunction, also seeing a pain management doctor for my chronic pelvic pain and a psychologist for my anxiety and panic attacks.

i feel really helpless right now...i feel like no one believes i am sick. my urologist is now not in the office til next tuesday so i can't even discuss this with them until then...and then they have only 10 days to track down all of my problems with all the other doctors. i am very stressed out over all of this...i have been in an awful flare for the past 10 days and this is only making it worse.

i would love to hear your insight on my situation. i feel like going out on disabililty would make me even more sick because i have time to think about my illness but at times i feel like that is the only choice i have to financially get help and let me completely focus on getting better.

thank you so much for listening

xoxox kara

08-12-2005, 05:45 AM

I can't answer most of your questions, but I can tell you that working causes me to flare horribly. When I'm not working, I'm mostly under control. When I work I get severe pain which causes nausea, dizziness, shakiness and crying.

I still have bad days, even when I'm not working. But they are much more manageable and I don't spend my days thinking about being sick. I do everything I need to do in the am and then I can relax for the rest of the day. I have bad fatigue and this helps me have time to rest so I don't overdo it.

So I guess what I'm trying to say is that working causes the symptoms to be much worse than not working.

I'm lucky because I have a mom who's very supportive and a very good friend. She is helping me out while I'm not drawing any income. I do have to live with her, but that's okay because we get along so well.

However, as soon as I finally admitted I couldn't work, my boyfriend broke up with me and moved out. Honestly, leaving me was the best thing he ever did for me, he's a selfish jerk and was only making my life much harder, but that didn't make it hurt any less.

So it's tough, and I understand what you're going through. If there's some way you could stop working it would probably help immensely.

Also, try to get a uro closer to you! I can't drive 3 hours without having horrible problems of fatigue and pain.

08-12-2005, 05:50 AM
lisanki I am not sure about DDS but here is what the others are

SSI-Social Security Supplement Income***this is for people with disabilities but it differs from SSD. You can SSI from a child up until adulthood and not have to work to get it. Also it goes on income so if you have a spouse and say he gets a raise it has to be reported to SS and your SSI goes down. Generally you have to be low income to get. I could have gotten this during my SSD application process but hubby made to much money.

SSD-Social Security Disability***this is for workers that have become disabled. Worked a certain amount of calendar periods and etc. Your income level or that of a spouse does not affect what you get. If your spouse gets more money it does not have to be reported.

I am sure there is more I am leaving out but this is just general info.


I wanted to wish you luck. It can seem overwhelming in the beg process of SSD, but hang in there and if you get turned down the intial time appeal the decision and keep fighting. Most people get turned down the first time so dont be disappointed if you do. It took me over 2 1/2 yrs from start to finish...Keep you head held high...

08-15-2005, 05:41 AM
Hugs, Kara!

I'm sorry that it took me a while to get back to you. I haven't been around much on the boards lately...

Anyway, I guess the paperwork in New York must be a bit different from what we do in Oregon. We don't ask the claimants to have the doctors fill out paperwork. We have you sign medical release forms, and then our Disability Determination office gets your medical records and info from your doctors. So I'm not really sure what your SSA office has you doing... What kind of forms are you having the doctors fill out?

Anyway, it sounds like you are on the right track. If you only need one of your doctors to fill out the paperwork, it probably doesn't matter which one you choose. Because your disability is IC, your primary care doctor probably felt more comfortable having your urologist fill out the paperwork. Also, it's less paperwork for them! If you can't get in touch with your uro, call your primary care doctor back, and let them know that it's crucial that they fill out the paperwork for you... Or, if you want your uro to fill it out, but you don't want to make the long trip, you could probably fax it to them, and have them fax it back to your local SSA office...

Good luck with your situation. I really hope everything works out for you!

Megan :)

08-15-2005, 05:45 AM

DDS is the Disability Determination Service. They are the ones who make the actual disability decision for your case. They have trained analysts who go over your medical records to make their decision, and then doctors who approve the analysts decision.

Megan :)

08-15-2005, 05:55 AM

Sorry it took me so long to get back to you! I didn't realize you had posted to me! Oops!!! :-/

Anyway, it does sound like you're on the right track... I'm not sure how much your benefit is affected (as far as the monetary value) by child drop out years, but your case worker (or anyone who knows more about SSD) should be able to tell you. If you keep calling your case worker and they don't call you back, I would ask to speak to the supervisor. When you call the main line for your local SSA office, instead of entering your case worker's extension, press zero. That should transfer you to the phone attendant. That person could possibly answer your question, or if not, they could transfer you to the Title 2/SSD supervisor.

You might also want to ask when the Child Dropout Years provision began. I have only been with the agency for a few years, so maybe it hasn't been around for very long? I'm looking into that, but nobody seems to remember when it started for sure...lol...

I hope this helps, and I hope you get some more answers soon!

Megan :)

08-15-2005, 05:57 AM

Just a quick note to everyone that I might not be around much anymore. I will try my hardest to respond to all questions, but I may not be able to write back right away. My IC has been getting worse and worse, just over the course of the last few months. It's really zapping my concentration and energy, (not to mention my positive attitude...lol) so I am not able to get online "for fun" as much as I used to.

Again, I WILL continue to respond to posts and questions, however, I may not be as quick about it.

Megan :)

08-15-2005, 06:11 AM
Best of luck to you Megan! I hope you feel better soon.

08-15-2005, 07:21 AM
I'm sorry to hear that you're feeling bad. I hope that you start feeling better soon, and if there is anything to do to help you, please feel free to pm me or post.
Thanks so much for your help! The Childcare Dropout Provision started in 1981. I have found a copy of the policy online. I've yet to get someone to call be back from my local office. I did speak with the office mgr last week and am waiting for her to get back with me with answers. It's just so frustrating!

Again, I hope you start feeling more like yourself soon & thanks for all of your help! :kissing:

08-15-2005, 05:00 PM
Hi Megen ~
So sorry to hear that your IC is worsening, and hope you are able to get it under control soon. Are you still able to work?

You've been such a help to all, and will most certainly be missed. Even if you're unable to spend much time here, please drop a note from time to time to let us know how you are doing. Thanks for all you've done...it's greatly appreciated.


08-15-2005, 07:21 PM
If you guys have any questions about Social Security Disability or SSI, feel free to ask me. I am a case worker/claims representative with the agency. I also suffer from IC, so I can understand what a lot of you are going through...


Hi Megan.... I posted this question under my own thread called, WAS APPROVED FOR SSD, and now my LTD company wants me to pay them back!!

Anyway, here it goes, I am kinda at a loss, I have been getting Long Term Disability from my job for a little over a year now, Because my LTD Company pushed me to do so I applied for Social Security Disability, the first time I was denied, then The LTD company referred my name to a Attorney and the Attorney contacted me, They then filed an appeal for SSD, about 2 weeks ago I got a phone call about 8:45am saying that my Appeal had been approved, and that they would retroactively go back to Sept 2004 and pay me from them until now, and my monthly amount was $631.00 a month....and I would owe the attorney $1711.00, and my attorney told me NOT to tell my LTD company I was approved, so I didn't, after about 4 days I got a lump amount deposited into my checking account...I wrote a check to the attorney and sent it out, then about 2 days ago, I got a letter in the mail telling me that I owed my LTD company the remainder of my back pay as pay back for the months they had paid me before SSD started,I paid into that through my job, incase I would ever get hurt and need it, and now I have to pay them back????? Unfortunately I have a problem, after we got the deposit, I had numerous outstanding medical bills, and also had a large premium for COBRA on my medical insurance, so I spent the bulk of the money like all but a couple hundred, and now they say they want it.... I was NEVER told I would have to do this...There was no where in the agreement that I signed from the attorney stating this, I have never gotten a copy of my LTD policy, or been told by my LTD company I would have to do this, and now they come up and say they want their money, THAT I DONT HAVE?!?!?! Anyone know anything about this? What do I do? Can I ask them to let me pay them like $100 a month I cant afford to let them just take my checks until its paid in full, I wont have anything to live on... I just really need some input and help with this.... PLEASE!?!?!?!?!?!?!?!?

So Do you know anything about this?? If so What do I do??

Thanks Alot..... TRose :help:

09-02-2005, 08:22 AM
Can anyone tell me if you can call that 1-800 number to find out id you have been approved for ssd?and if so what is the number .....Thanks

09-02-2005, 08:35 AM
You can call it, but it would probly be better to call your local SS office. Here is the number 1-800-772-1213

09-02-2005, 12:08 PM
:angel: Thanks Pat...........i Will Be Praying For You All

09-02-2005, 06:22 PM
I was just diagnosed in May with IC and I am having trouble working. My boss has been good about it but I think in January he is wanting me to at least go part-time. My husband also brings in income. Can you tell me how much we can make as a household and still qualify for disability?

09-02-2005, 08:13 PM
Megan, I have a question. I am on social security disabiliity, and am going to have my bladder removed. My Dr. doesn't think it will get rid of my pelvic pain. I also have bad asthma, and it is so awful to have asthma trouble and be so short of breath and go to the bathroom all the time. My question is, will I still get disability without my bladder. After I was approved, I developed asthma and pulmonary hypertension, and I am 52. Don't get me wrong, I would love to work if I didn't have the horrible pain. I can hardely sit. I am just curious what happens when my bladder is removed. Do the social security people realize that even if your bladder is gone, you can still have a lot of pain. Thanks for your reply!

09-05-2005, 11:30 AM
Campbell & Carley,

Unless she has come back to the boards, Megan was going to stop posting for a while. She was having increased IC problems. :(
I don't work for Social Security, but have applied and am waiting for an appeals date, so I might be able to help based on my own experiences. I don't know the answer to your question Carly. I would call your case worker and find out.
Campbell - If your applying for Social Security Disability Insurance, there is no maximum hosehold income. If you have worked long enough and paid in enough credits to SS, this would be what you should apply for. However, if you haven't pd enough in, SSI Disability would be what you would apply for. There is a limit on the max household income. I think the limit varies by state (depending on cost of living, but I may be wrong). I know Patricia knows a lot about the whole process also, so she may be able to help as well. If you call your local office, or the 1-800 number, they can let you know about your eligibility. I would encourage you to apply as soon as you feel it is neccessary - It may take a long time. I have been waiting for over 2 years, which seems to be the norm.

09-05-2005, 11:44 AM
Campbell SSD (Social Security Disability) does not have an income bracket. They go by what you have paid in and how many calendar months/credits you have. Elle is right this is what you should apply for if you qualify. When you go to set this up either at your local SS office or online and even on the phone they should be able to know then whether or not you can get the SSD. SSI (Social Security Supplemental Income) is based on monthly income. If your hubby's income goes up then your SSI payment goes down and so forth. Like Elle said it is for those who dont qualify for SSD but still are consider disabled. I did not qualify for it when apply for SSD cuz my hubby made to much $$. Most people are turned down the first time they apply, but appeal the decision. Also sometimes it can take a few years from start to finish, it is not something that can get done in a couple of months. Alot depends on the state and how much they are trying to process at that time. It took me 2 yrs and 3 months from start to finish for me. I live in Louisiana and they were backed up then, and are probly really gonna be backed up now.

Carly does your case worker know that you have now developed Asthma and the pulmonary hypertension? If not I would let them know and maybe get them some paper work from your docs about that. It is hard to say if they realize the pain from IC. I know from my experience in all of this I had better luck with the Doctor that was at my appeals hearing than I did from the docs they sent me to in the beg. Maybe your uro can send in a letter after your bladder removal stating the pain you will still be in after having it done. I hope you are able to continue with your SSD after getting the bladder removed.

09-06-2005, 09:02 AM

Sorry for the delay in getting back to you. I was on a break from the board for a while...

I don't know much about LTD programs, or how to pay them back. I haven't heard of people having to do that before, but I guess all LTD programs are different... The only thing I can think of for you to do, would be to contact your lawyer and see if they have any suggestions. Or you could call up the LTD people and negotiate a payment plan. I think it's seriously messed up that you paid into your LTD in case you became disabled, and now they're making you pay them back because you got on SSD! I would definitely look into this some more, before you give them all of your back pay!

Good luck, and be sure to let us know what happens!

Megan :)

09-06-2005, 09:05 AM

Yep, the others are correct... We would look at your income, how much you paid into Social Security, and how much you have worked over the past ten years. There is a formula to figure out your PIA (Primary Insurance Amount- how much we would pay you) but I don't know what it is. The computer does that for us. ;)

You should get a statement once a year indicating how much you should receive, if you became disabled and started receiving benefits. It should be pretty close to that amount, but it could vary a little bit, depending on how much you worked in the past 12 months, and how much you made and paid into SSD.

I hope that helped! If not, you can call your local office, and they should be able to give you a rough estimate as to how much you would be eligible for!

Megan :)

09-06-2005, 09:17 AM

Patricia is right- if we are aware of your other disabilities, then IC probably isn't the only thing you are getting SSD benefits for. Usually we diagnose a primary AND a secondary disability. If your bladder is removed, you probably won't have to deal with your SSD being "taken away" until your next medical review. Those take place every 3-10 years, so I don't know when your next one is, (although your case worker or a service representative at your local office could tell you.) When they start the medical review, you will be notified because you'll have to fill out some disability update forms. At that time, you can show that you have other conditions, and that you are still in pain. If your doctors know about your pain, then their records will indicate it, and DDS (Disability Determination Services) will see that.

I hope that helps! If you have any other questions, feel free to let me know!

Megan :)

09-06-2005, 10:05 AM
Hey guys!

Thanks for all of your well-wishes! I have been doing a bit better over the past week or so, so I am back on the board for now! Feel free to let me know if you have any other questions about SSA and our programs!

Megan :)

09-11-2005, 02:44 PM
Can anyone tell me if there is away to check on the status of your appeal on-line?

09-12-2005, 06:43 AM

In some states, you can check the status of your appeal on our website, www.ssa.gov. You have to have a confirmation number for this to work, though...

If I were you, I would just call your local office and ask them to check on it. It's not going to slow your case down, or make anyone angry or anything like that... :)

Good luck!

Megan :)

09-12-2005, 04:12 PM
Hi Megan, I was denied my first application for SSD in February. I live in Pennsylvania so the next step for me is the ALJ Hearing. I immediately got an attorney and filed an appeal. My attorney contacted me on Friday and said that the judge was almost ready to make a decision on my case and all he needed to see was income verification from my Mary Kay business for the last 2 years. I was surprised! I'm not even going to have a hearing? I don't know if this is good or bad. The lawyer said that this is usually a good sign and they said my medical evidence was strong. My tax records should not be a problem as far as income, because I didn't have any. I showed a loss every year because I was not able to work my business very much, and with the deductions you can take for being self-employed, I have a loss. What do you think? Does this sound good to you? I'm a little concerned. I'm afraid of another denial.

09-13-2005, 06:13 AM
I was also denied my first time around and I'm kind of frustrated. I have bipolar and obsessive compulsive disorder so they're sending me for a psych eval. The frustrating thing is I've told them that the mental disorders aren't the problem. The problem is the pain and fatigue associated with the IC. The lady who is handling my case says that I have to have the psych eval anyway because it's the only way to get it "on the record" how bad my fatigue and pain is. Otherwise it's so subjective that they can't make a decision. Anyone else had this problem?

09-13-2005, 06:36 AM

Well, I really can't say for sure, and I don't want to get your hopes up, but it sounds like things might go through for you on this! If your attorney is getting a good vibe about it too, then that's definitely a good thing! Since we HAVE to have Hearings at that level of the appeals process, I don't know what it means when they decide to totally skip the actual hearing in other states... But the fact that your medical evidence is stong is excellent... As for your income, the fact that you don't have any will help. The ALJ (judge) will definitely be looking at it to see how much you were able to work over the past two years. If you had to take a loss because you weren't able to work much at all, then that would be in your favor.

Good luck, and I hope this works out for you! Be sure to post an update when you can!

Megan :)

09-13-2005, 06:40 AM

I have seen many people in the same position as you. Believe it or not, the majority of people who apply for SSD or SSI have multiple disabilities/conditions. So it's just routine for the DDS/OHA to look into it further if you have alleged other conditions, especially if they are mental or emotional conditions. I know it's frustrating, but that might even help your case... The DDS examiners like to come up with a secondary disability, and if yours could be OCD or bipolar disorder, then again, that could help your case. They aren't going to totally disregard the fact that you have IC. But if they can show that you have several conditions that are affecting you, then that can add up to one, big disabling condition.

Sorry if I am rambling, it's still early in the morning here!

Megan :)

09-13-2005, 05:53 PM
Thank you Megan, I'm really kind of unhappy about it. Psych eval's are really not fun. Talk about totally make you feel screwed up! But I'm going in there with both guns blazing and I'm going to make absolutely sure that he understands ALL the illnesses and their effects on my life.

Thanks again. I'll keep my fingers crossed and let you all know how it goes.

09-21-2005, 06:12 PM
Hi I am new to the boards my name is Rachel and as of today am being tested for Reheumatoid arthritis I have been diagnosed with IC for about 6weeks now.
Am being treated for that and am cutting things out of diet this week is dr.pepper and chocolate....My question is I work for SBC and have been there almost four years. They have disabilty and I can file with them for a bit who knows if they will approve me I am in so much pain anymore though it hurts to set at my desk for 8+hours a day I wake up feeling as if I have been hit by a mac truck I am so stiff and hurt so bad. And to top it off have not learned how to controll my IC yet either so there is pain there also. I work on the phone with three breaks two 15min and on 30 min lunch needless to say that is not enough for me and my potty breaks. I am just at a loss as what to do I do not want to lose my job but I cannot work and I need help and advice. Would disabilty through the goverment be the first place to start or start with sbc??
Any advice would be appreaciated greatly.

09-22-2005, 08:45 AM
It might be best to start with your job first. It can take along time for disability through the gov. It took me over 2 yrs. So maybe start with them and then start with SSD also...

09-22-2005, 08:47 AM
You should be able to file for BOTH govt and SBC for disability. If you get approved for both it will probably cause a reduction in both of them, but there's no reason that you shouldn't be able to get both. I was eligible for disability through my work, but I went to the Dr within my preexisting conditions time period. Otherwise I could have drawn both. If I ever get approved for SSD.

09-22-2005, 09:04 AM
It's been about four months since I filed my appeal and I just did my psych eval last week. Does anyone know about how much longer I'll have to wait? Ballpark?

09-23-2005, 07:16 AM
I am currently appling for SS. I have been denied 2x. I did get a lawyer this time and I am appealing. I could use any tips you can give me.

Thank You and God Bless,

09-23-2005, 09:23 AM
I applied 2 1/2 years ago and have been waiting on an appeals date since Nov of 2004. My case worker said I should have a date by Jan of 2006. Good thing I have a lot of fat stored up b/c I probably would have been dead of starvation by now!!! :biglaugh: Just kidding! It's isn't that bad. It's just frustrating that I can't work when the $$ would definately come in handy...and then for the powers that be to take this long just to give me a date - it's crazy! Hopefully neither of you will have to wait that long. I know every jurisdiction is different, so maybe your cases will be heard soon!

10-04-2005, 09:27 AM
Ok Guys I Didnt Win My Hearing From July 21st,this Was The 2nd One Not In My Favor.i Treceived A Letter From My Attorney Stating That ,they Believe To File Another Appeal Would Not Be In Order,but If I Was To File A New Claim They Would Persue It Now What Do I Do And What The Heck Do They Mean By Filing A New Claim Anyone Out There W/any Info Thanks...

10-04-2005, 11:27 AM
You got turned down a second time, I cant believe it. I got it the second time and this was in 1993 when they accused me of being crazy. How much did your lawyer know about IC? I hope it was contingent that he didnt get paid if you didnt win. I have no idea what he means by new claim. You did state you wanted SSI because of IC right?

10-06-2005, 11:19 AM
Typically it's better to appeal rather than to file a new claim. If you have any appeals left, I would say to file another appeal. If you file a NEW claim, then any back money that you would have received would be lost. Your date of application (and wait time, for that matter) would start over. I'm assuming that you've filed for SSDI and not SSI.

10-06-2005, 01:31 PM
I Applied For SSD,
and was turned down twice ,had 2 hearing in front of a judge .Not only do i suffer from I.c. I also have a list of other problems such as fibromyalgia,arthritis,ostopenia,depression and i have had 6 surgeries on my abdomen.I had a attorney who changed her mind 2 weeks before the last hearing and got another as quick as I could they are well known attorneys from Pittsburgh,they wrote me a letter and said if i was to open a new claim they would represent me,they din't feel a appeal would be in order, but not if I appealed only if i filed a new claim I've been going through this crap since 2002.I think I've had enough.Thanks gals fro the reply :cussing: :cussing: :cussing: :bonk:

10-06-2005, 01:33 PM
Ps. I also had 2 Doctors write up papers one was my urologist the other my primary care PHY.

10-11-2005, 09:16 AM
I'm really stressing out. I talked to my claim handler at SS last week and she said she expects to make a decision this Friday. I'm so worried I can hardly think straight. I'm sure all of you can relate, I need the money!

10-12-2005, 07:42 AM
Hi everyone,

I applied in July and just received my notice of disapproval . I have many other things wrong with me , so when I filed I included these but using IC as my main disease . Their reply was that my KIDNEY problem has responded to treatment ???? I am in pain 24/7 as everyone here knows. I opted out of the interstim for drugs but the side effects of these are overwhelming . I just had another hydro in August and since then I have been misrable . Anyway, they barely addressed the IC and even with that they couldn't get the right organ it affects .
They wrote there are different types of disability programs. A person may be receiving benefits under another program and still not be intitled under our rules. They wrote this may be true in your case. They also stated they have determined my condition was not disabling on any date through 12/31/2003, when I was last insured for disability .
I haven't worked because it has taken so long to finally get an accurate diagnosis . I live off of flomax,tramadol,valium,vicodin, and phenergan . I have had all my female parts removed thinking that was the problem and all along it has been this disease . Sorry, guys I am in a venting mood and I know yall understand. Megs, if you read this I hope you are feeling better .Should I file an appeal ????? Would it be worth it ???? I also have IBS, high blood pressure, high cholesterol, gerd , migraines, SVT/atrial flutter and mitral regurgitation . And I have to peeeeeeeeeee ALL the time . Thanks again for letting me vent, most people just don't understand the severity of this..... but through all this GOD BLESS EVERYONE and I will keep yall in my prayers..... :pray:

10-12-2005, 04:56 PM

Sorry that you are so ill--

File an appeal and keep appealing. Most people are denied the first go around.

Good Luck!

God Bless you also!!


10-13-2005, 12:49 AM
Thanks for the response . I will call for the appeals papers today !

The more I read on this site , it seems the laws are different in some states.

I guess it just depends on who goes over your claim.

Take care and hope you are feeling well.

Well wishes your way

Keptt ~~~

10-13-2005, 12:55 AM
Sorry ,
I posted under the wrong title, I guess.
I was reading and replied , I do not work for SSA .
Again,sorry :bonk: ~ kept

10-13-2005, 07:18 AM
By chance, have you been caring for your own children under the age of 3 in the last few years? The reason I ask is b/c there is a rule called "child Drop Out Years" which will actually extend the number of years that you're eligible for benefits. There is a section about it on this thread. Just a shot in the dark, but maybe it'll help!
As for the appeal - DEFINATELY appeal! I've noticed also that it seems some states approve fairly quickly for IC and others seem to frequently deny for it. Keep trying & I hope you have a pain free day soon!

10-13-2005, 08:24 AM
I have two grown children now but I did have my daughter and granddaughter living with me. I watched her from birth until about a year and half ago. We had to support both of them until she got out of college. Thanks for the tip.... she just turned 6 last week and she is the best drug I have ever found !!!!!!! :woohoo: When I am really feeling like poop, I can call and she makes me feel better . What a great drug and its free and has no side effects... Thanks for sharing,

God Bless,

10-17-2005, 08:45 AM
I was able to get my disabilty the first time I applied. I feel very lucky, listening to others that have been fighting for it. So there is hope .

10-17-2005, 03:02 PM
That's really great! I sometimes think that it depends on the part of the country that you're from. Just wondering...are you from the US? If so, what state?

10-17-2005, 04:03 PM
I live in oregon.

10-17-2005, 05:23 PM
My question is as far as disability and SSI goes are the requirements to be considered disabled the same...I applied for disability like 3-4 years ago and was denied and haven't worked since so have no credits now to get disability since I haven't worked much because of my IC and being bipolar...Wanted to know if I should apply for SSI and if I may be considered disabled for that or what...Both my kids get SSI for their disability and wondered if I could get it becasue they do...Thanks


11-02-2005, 08:15 AM
My question is as far as disability and SSI goes are the requirements to be considered disabled the same...I applied for disability like 3-4 years ago and was denied and haven't worked since so have no credits now to get disability since I haven't worked much because of my IC and being bipolar...Wanted to know if I should apply for SSI and if I may be considered disabled for that or what...Both my kids get SSI for their disability and wondered if I could get it becasue they do...Thanks


Hi Jen,

First I will comment and try to answer the above question. Of course to get a real answer one would have to seek an attorney in their state. Usually one should apply for SSI when they apply for Social Security Disability. If someone applies for SSI while they are still waiting for the disability money, they may goof that first claim up so check with a lawyer. It is real hard to get disability without the help of a lawyer, as most claims are denied like two or more claims. I have done plenty of research on this subject the last two years. I have many diagnoses and a long list of things wrong, and still they keep denying my claims.

Kids may get SSI if they are disabled as they have to have the required working hours in to get SS Disability Income, which of course as a child they did not work yet. I do not know what income they have to make, but most make about nothing then.

Next, I am going to quote what I had received years ago after I was denied on this SSI and what the letter said I will quote:

You cannot get Supplement Security Income for the reason given below.

Why We Can't Pay You

We find that you have resources worth more than $2,000.00 for (date) on.

For you to receive SSI payments, the resources that you own cannot be worth more than $2,000.00 for (Date) on. We call this amount the limit on resources.

Resources are the things that you own such as cash, stocks, bank accounts, certain types of life insurance, buildings, and land on which you do not live. We do not include as resources the home in which you live, one car used for necessary activities, and some other things.

Ends that quote

My opinion now, SSI is different from Social Security Disability. SSI is for things like rent or a place to live and food. It is for those truly in big financial need, without other resources, and it is also for those that are legally blind or those who have not worked the required hours to obtain Social Security Disability. One usually applies for SSI the same time they apply for SSDI.

With SS Disability, one needs to meet one of their Disability Listings on their SS Disability website. Read that site very thoroughly and check every single topic, even print it out.

One may or may not benefit from a doctor saying they should not work, sometimes that helps sometimes it does not. Some doctors are not willing to say you can't work any job at all. The higher the education you had, the younger you are, the harder it is to get the disability insurance. As then you could do more jobs.

To get Medicare Insurance, you have to first obtain Social Security Disability which is VERY hard to obtain (I've been trying for I think it has been two years now). If you don't get SS Disability, you don't get MEdicare (unless you are over 65).

I keep getting turned down and I keep appealing and reappealing, and now I have since filed a brand new claim with Social Security Disability and am now waiting a decision, which I heard should come in a few weeks as I just called to find out about the stats of the claim. There are e-books online to find support on this subject. That is good reading material and may help somewhat.

As most know, Social Security does have a website and they also have a toll free 800 number to apply. READ that listing area very carefully and see if one or more of your difficulties meets their required listing to qualify for Social Security Disability Income. One can apply online now or by telephone. Then they have a Functional Report that needs to be done on paper and sent in. Whether you get SSDI or SSI depends a lot on that Functional Report, if you can do too many things you might not have a chance. Have someone do one Functional form and you do the other form.

Basically it is my understanding after years of reading, you have to prove that you can't do ANY kind of work in your state, and you have to prove WHY your sicknesses prevents you from doing ANY kind of work. If they find you can do any work at all, you probably would lose. They don't seem to care what pain you are in or whether you can drive well or whether you can't afford to go to the doctor to get new treatment. You need to keep going to the doctor even though you can't afford to. Now how can you do that with no money and no insurance? They don't seem to want to pay for this, it is much harder to get than it was years ago. I had the hospital tell me to never return if I can't pay the bill.

Good luck and get a lawyer, do not do what I did and try to win without a lawyer. I even went to the Admin. Law Judge without a lawyer and that was a horrible experience, it was a nightmare and I lost of course. Lots of questions, he acted like a lawyer for their side and was not at all sympathetic. He made lots of mistakes on his form and so I used that to Appeal to the next level. To go to the next level after the ALJ, you need to prove that the judge made ONE mistake on his report. Then they may try it again, that process I have heard takes several years. In the meantime, one can reapply AGAIN for Social Security Disability Income while the first claim is still going on without affecting the payments, if you do win. Most the time I have read that the Appeal Court goes by what the Judge's decision said, unless you can prove he made a mistake. But again, go to a lawyer and find out what is true in your state.

11-03-2005, 05:34 AM

Heck yeah, I would definitely file an appeal if I were you!!! Your case will go to a different examiner, and they might find you to be disabled after all. It's at least worth a try!

Good luck!!!

Megan :)

11-03-2005, 05:36 AM

I live in Oregon too! (And I am from Gresham, even though I live in Eugene now...) I am so glad to hear that our Disability Determination Office decided to approve your claim! :)

Megan :)

11-03-2005, 07:47 AM
Just today got in the mail yet another letter from Social Security Disability this time on my brand new claim, they denied me!

We are writing about your claim for Social Security Disability benefits. Based on a review of your health problems, you do not qualify for benefits on this claim. This is because you are not disabled under our rules.

We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age, education, training, and work experience in determining how your condition affected your ability to work.

If your condition gets worse write, call or visit any Social Security office about filing about application.

You have 60 days to ask for an Appeal.

Well it goes on, but that's the main information. Anyone a lawyer specializing in Social Security Disability as I am going to start calling them.

11-04-2005, 05:25 AM

I am really sorry to hear about your denial. I understand how frustrating it must be... Good luck with your reconsideration appeal. Many people do like to get an attorney at this point in the process, but just to let you know, there is not much a lawyer can really do for you until the Hearings level. At the first appeal/Reconsideration level, all they're doing for you is helping you fill out your paperwork. If you are approved, then you have to pay them $5300, or 25% of your back pay.

If you have any questions about this, or if you need any more info, feel free to let me know!

Good luck, and hang in there!!!

Megan :)

11-07-2005, 07:04 AM
I just received my second denial and hired an attorney for the ALJ hearing. They're reason for denying me both times was that they recognize that I'm currently disabled but am responding to treatment and should be able to return to work by February which means I won't be disabled for a full year. And they had as part of my illnesses/diagnoses, chronic urinary tract infections. Did they totally miss the point?? They had IC down too, but they didn't seem to realize those chronic UTI's were a manifestation of the illness, not real UTI's.

11-07-2005, 07:27 AM
Hugs, Tigger!!!

I am so sorry to hear about your denial. I think you're right; they totally missed the point with your diagnosis. I would have your lawyer emphasize the point that IC is not just a bunch of UTI's... Hopefully the AL Judge will get it!

Good luck!!!

Megan :)

11-07-2005, 10:24 AM
Hi Tigersorenson,

I've been wondering if you had yet received any more letters. So sorry to hear you got denied yet again. Thanks for the update, I was real concerned as I know how the letters arrive and how upsetting it is to after like six months of waiting and being broke, you get a notice saying they won't help you out.

I was denied four times. The ALJ took 10 plus months to make a decision, and of course it wasn't favorable. He made so many mistakes. Find any kind of a mistake he makes, if he does make a mistake.

It seems they (SS Disability people) only want to look at papers or doctors that are in their best interest. Now I'm not saying they do this wanting to, maybe their bosses make them delay or find denials. Yes, they do put down wrong diagnoses! And they even make diagnoses when they aren't even doctors themselves! Yes they DO most definitely make mistakes, and I think almost on purpose, and they do tend to take longer than need to make decisions on purpose I think.

I heard they don't approve or pay unless the person gets a lawyer, as the State doesn't want to pay more than they have to. If a person is blind or mentally retarded, then they I think will probably get approved the first time otherwise, I doubt it.
It used to be much easier than it is now, I know people who got the disability income their first time without any trouble at all.

Have you been disabled for 12 months already? Your Bipolar I know about as I have that too and that does not go away. It is life long. Are you on Lithium or Depakote ER? That works! Have you tried light therapy or pet therapy? It may respond to treatment yes, but it won't ever just go away. The psych meds cause troubles and concentration and sleepiness usually are a result along with side effects. But they don't seem to care about any of that. I have a long list of other medical diagnoses as well as the mental health issues, use a cane now thanks to the side effects I have trouble walking with gait and talking, have chronic asthma, osteopenia, osteoarthritis, IBS, balance difficulty, constant abdominal pain due to fibroids and bladder pain, insomnia, and still they keep turning me down every single time. I spend a long time working up the paperwork and filling out forms and a very long time studying issues of SS Disability online, and still they keep turning me down. I send them the list of doctors and hospitals to contact each time, and what do they do each time - just seem to ignore the psych hospitals and the chiropractor and some other doctors as well that would be favorable for my case. They have the regular treating physician records and the local psych doctor records, but they either do not receive the rest or aren't looking at them or something. I sign releases and tell them who to write to each time. Still the same sort of answer in the denial. So now I have to find a lawyer, and I did find a lawyer referral service (PM me if you want to know where it is), that deals specially with SS Disability cases and did recommend a local lawyer. I contacted a place that says they do SS Cases for Bipolar and they will not take my case. That's because I already went to the Appeal Court, and I already went to the ALJ by myself. They told me months ago that if I started all over again with a new claim and re-filed, then they'd consider taking my case. So I called last week and the person said they still are not able to take it and that is because they were not lawyers and that I need to find a lawyer. I told them how they are all over the web saying how they are disability lawyers, no she said they are advocates. So do not just use an advocate for Disability and give them 25% of your income. Get a lawyer that is actually a lawyer and good at SS Disability claims.

By the way, you can send me a PM message at any time okay and I could even talk to you that way!!

If I can help even one person like you or any others who may be reading this forum, then it won't be time wasted. I can't stress enough how important to have a lawyer at the ALJ stage. Never go to any court room without a lawyer. Of course the law may be different in different states and some states I heard are easier to get it than others. And it may depend on who is reviewing your claim.

11-14-2005, 09:32 AM
I definitely hired an attorney and we had a long chat about everything before he took my case. The bipolar is a problem and I'm on lots of meds for that, I just started Lithium. I'm sleepy a lot. It's really hard, and I really think it's frustrating how everything gets handled. It's like they don't really listen to you. Do they allow you to make a statement at the ALJ hearing?

11-14-2005, 11:05 AM
Yes, you are allowed to make any statements you want to. (Unless you may want to lawyer to speak for you). At the Admin Law Judge Hearing, you can ask questions and you can talk all you want to. You are handed your complete file that they have at disability before you see the judge that his secretary hands to you. Then you go into the office of the Judge. There is a Career Expert that then later may at the end wish to speak. Her/his job is to find any kind of a job that you can do in the National Economy. Your job is to make sure you CAN NOT do any kind of a job in the National Economy. They only seem to want to know WHY you can't do any substantial work. They don't seem to care if you are in pain, or if you are sick, or anything at all. The Judge may ask if you have applied for a job or attempted to do any work. The Judge may try to make you feel like you are not important and pick on you. A lawyer may know what is allowed and what is not allowed and what they can object to. A lawyer may know why you can't do all the kinds of jobs that the Career Expert says you can do. Then many months later, they send you a notice saying whether or not you get disability and if not, a very long bunch of reasons why not. Your job then is to find even one single thing the ALJ said was wrong or incorrect or illegal. Believe me they make plenty of mistakes. Hopefully a lawyer will prevent the problems I went through for you.

Lithium may make you gain 30 pounds. It has to do with a salt imbalance in our brain. It will make you sleepy yes of course and calm you down. It takes awhile to get used to that sort of pill. My dad told me years ago that when he first went on Lithium, he felt like he was on the bottle of a fish bowl! He called that his hand cuffs. It kept him in line as his Bipolar was very dangerous, however, with the med he was manageable enough to live at home.

11-22-2005, 06:23 AM
Hello I recently one my SSI case. What are my benefits after winning my case? How much income can I have coming in? I f I work for cash do I need to turn anything into the Government? Is that legal to work for cash? Just trying to find out if I will benefit from this and what I am suppossed to do now that I have one my case.

11-22-2005, 06:32 AM
How in the world did you win SS Disability?? You're real lucky. Did you have a lawyer? If you have a lawyer, I'd ask him those questions.

But basically, each state has different laws.

I think a person can earn up to something like $800 and still get the disability, although I do not know. If you earn cash, then how can you keep it? That's up to you but I would think cash would count in the money you are earning.

It's usually only won if you can prove to SS that you are unable to earn ANY substantial income or gainful income, and they want to know WHY your health prevents you from working. If you are able to work, then I don't know how you got it.

11-22-2005, 08:11 AM
Hey Melissa,

The amount you get each month in SSI depends on several things. Since it's a needs-based program, we will ask if you or your spouse (if you're married) are receiving any other form of income. If so, we have to take that into consideration. Also, it will depend on your living arrangement. If you are paying rent, or you're responsible for making a financial contribution to your household, then you will get more SSI than if you're living somewhere for free.

Also, some states (like California, for example) pay extra SSI in the form of a state supplement. States with a higher cost of living ususally do this.

If you or your spouse are receiving income, then your SSI will depend on what kind of income you guys are bringing in. Is it from work, or is it unearned income? It makes a difference. Whether or not you have children in your household can also make a difference.

If you work for cash you DO need to tell us. Again, because SSI is a needs-based welfare program, we do look at any other income you have coming in. We make it worth your while to work, though. We exclude the first $65 of GROSS earnings that you make each month. Then for every $2 you make at work, we only take $1 off of your SSI. But if you don't report your earnings to us, you will get overpaid. That means that you will have to pay us back. And if you receive any income we WILL find out about it, because IRS reports earnings to us each year. You DO NOT get this type of exclusion if you are receiving unearned income, though. We look at unearned income differently.

Now that you have won your case, your claims representative from your local office should contact you, so they can update your information, and so they can tell you how much you will be receiving in SSI. You might also have some back pay due to you. If it's been a week or so since you received your award letter and you still haven't heard from your local office, go ahead and give them a call. You should be able to set up a time with them to review your case.

Good luck with all of this, and if you have any other info, feel free to ask!

Megan :)

11-22-2005, 08:14 AM
SSI has different rules for income than Social Security Disability (SSD) does. You're right though, SSD has a gross income limit of $830 per month. You can earn more and take a trial work period of 6-9 months though, if you are already receiving SSD benefits. We don't stop your SSD during this time, but we do stop it after nine months if you are able to continue working.

11-28-2005, 11:55 AM
Thanks for the information above it is real helpful.

I recently asked my State Senator for assistance, as it has taken way too long like three years or something. Gee if I could earn $30 a month I'd be thrilled. Now try to find a way to live on that. Can't do that. Luckily I have friends to stay with. And churches that helped out with food. And a pharmaceutical company that furnished free meds.

11-28-2005, 03:03 PM
I've been thinking a lot about SSI lately. I was diagnosed with IC just a couple of weeks ago when my urologist did a cystoscopy on me. I have also had multiple sclerosis for 2 years now. I'm a grad student going for my masters in art education, but I've had to go to part time now and I have not worked in years. It seems like I would qualify for it, but I know others with MS who do not. With 2 chronic illness' it doesnt seem like I would have a problem getting approved. What do you think?

11-29-2005, 05:09 AM

Talking to a congressperson may be your best bet right now. If cases are taking an unusually long amount of time, (and I'd say that three years is way too long!) then getting a member of congress involved will most definitely rush things along. It looks bad for Social Security if congress has to get involved, so we have our supervisors handle the congressional cases. That way, you'll get a decision quicker.

Good luck, and I hope you get your decision soon!

Megan :)

11-29-2005, 05:13 AM

I am sorry to hear about your recent IC diagnosis. I know what it pain it can be to handle, so I can only imagine how tough it must be on top of MS... (((Hugs))) to you!

Unfortunately, I can't say for sure whether or not you would be approved for benefits. Because you have two disabilities instead of just one, that would increase the likelihood that you are approved. But as you can probably see from reading these posts, our DDS (Disability Determination Service) has a difficult time acknowleding IC to be a true disability. The decision of whether or not you're disabled will rest on a disability examiner at your state's DDS office. DDS's vary from state to state, so it's hard to say what yours would be like. It may be worth a try, though. Now that we are moving to electronic claims, it's faster than ever to file an application. Also, if you are denied, you can appeal that decision right away. Appealing is easier than filing over and over again, and many people find that they are approved by or at the Hearings level.

Good luck with whatever you decide to do! If you have any questions, feel free to ask!

Megan :)

11-29-2005, 06:41 AM
I've been thinking a lot about SSI lately. I was diagnosed with IC just a couple of weeks ago when my urologist did a cystoscopy on me. I have also had multiple sclerosis for 2 years now. I'm a grad student going for my masters in art education, but I've had to go to part time now and I have not worked in years. It seems like I would qualify for it, but I know others with MS who do not. With 2 chronic illness' it doesnt seem like I would have a problem getting approved. What do you think?
Glad you posted looking for answers. That is a horrible diagnosis and one to fear and here you have MS and haven't even applied yet for SS Disability and SSI? You should and please do so - call their 800 number and apply for BOTH SSI and SS Disability at the same time. They'll have you file some electronic paperwork - print each page. Then they'll have someone call you and interview you by the telephone. (That's the easy part). Keep trying and yes do apply. You have a chronic and serious diagnosis there. It's real hard tho to get SS Disability, so keep trying and if they turn you down the first time which they probably do as they do just about everyone from what I have read. Keep appealing! You may need a lawyer if they send you to a hearing, do not go to that hearing without a lawyer!

You do though have something that may prevent you from getting disability real easily and that is that you have a college degree. The smarter you are, the higher the degree, the less likely they'd give it to you. The younger you are, the harder it is to get. Good luck.

11-29-2005, 06:47 AM

Talking to a congressperson may be your best bet right now. If cases are taking an unusually long amount of time, (and I'd say that three years is way too long!) then getting a member of congress involved will most definitely rush things along. It looks bad for Social Security if congress has to get involved, so we have our supervisors handle the congressional cases. That way, you'll get a decision quicker.

Good luck, and I hope you get your decision soon!

Megan :)

Thank you so much for your post - Senator sent a letter asking for the stats of the Appeal and to keep him informed, and Senator himself signed the letter. Senator will have someone contact me with a stats result.

Well I already had four decisions - all denials. I'll keep going tho as I have to.

11-29-2005, 04:17 PM
Oh man Domain cat.. that really stinks!! I didnt know if I had a degree they may not accept me based on that! Yes, I do have a bachelors degree and now I am going for my masters, but I have not worked in my field yet! I went straight from undergrad to grad school. I had my first MS attack my first year of grad school. I continued going because I didnt want to let MS get the best of me.. but I'm really not sure I am going to be able to teach. I'm barely able to take my part time classes now. I started out a full time grad student about 2 years ago and now I am down to part time because my disease has progressed some. It really is not fair if I am penalized for having a degree. Thank you guys for responding so quickly. Its nice to have people to talk to about this who understand.

11-30-2005, 05:26 AM
The higher the education, the more jobs you could do.
The higher the education or especially if you recently graduated, you can concentrate enough to learn a new job.
You could go to the SS website and look at the LISTINGS as there is some mention of your disease there and I do think it meets their listings. You have to meet one of their listings to get it from what I understand.
If you can have a doctor say you can't do ANY GAINFUL or Substantial Work in your state for 12 months, then you have a better chance.
It does depend on the State and it depends on the Judge or on the person who reviews your claim.
Usually they tend to find several jobs that you could do and they don't care if you are in pain, they don't care if you don't drive well any more. They seem to make the claims go on as long as they can and hope you give up.
Your best bet is to get a lawyer.
I filled out all the paperwork myself, but most wouldn't be able to do that.
I gave them all the medical records myself, but most wouldn't know how to even obtain those. Still I got four denials yes four.

12-08-2005, 11:49 AM
Thank you for your responce! I have called the Social Security Office and talked to the gentlman who is working on my case. At first I was told that I would recieve my money before X-mas and now I was told that it would be after the first of the year more than likely. He has to locate some of my husbands ex employers. I was also told that there may be some months that I would not even qualify for SSI because of my husbands income. I am still to sick to work so I do not have to worry about that at this time. It really doesn't seem fair that they go on your spouces income. Oh well thats the law.

12-09-2005, 06:45 AM
Hey Melissa,

Well I'm glad your SSI worker is getting everything worked out! Once you submit your husband's pay stubs (as far back as SSA needs them) you should be good to go. If you do not have direct deposit set up, it can take 7-10 days for your first check/back pay to come, though. All of the checks come from Central Office in Baltimore, Maryland...

Yeah, it can really suck that we look at your spouse's income, but since SSI is a welfare program, we have to do it... Based on your husband's wages, your SSI might go up and down every month. You will probably need to report his wages, or send in copies of his pay stubs at the end of each month. I'm sure your case worker will discuss that with you though...

Well, good luck with all of this, and I hope you are able to get your money before Christmas after all!!! If you have any other questions, be sure to let me know!

Megan :)

12-09-2005, 09:14 AM
There is something that bothers me about all of this, so I gotta ask the question.

Meg, if you would be please shed a little light here, I would be grateful. It almost seems as if the SSDI people are trained to turn you down the first time as a rule of thumb. It reminds me a little of a Laura Dern movie I saw on Satellite recently. It was a true story. She was the decision maker for a huge HMO. She was put under tremendous pressure to keep costs down. She began simply stamping "Reject" on stacks of claims because she knew that would be the only way to keep her job and look as if she is doing things cost effective and keeping costs down.

Are the decision makers on our cliams held to task if they approve to many people in a quarter for instance? Do they look better to their superiors if they are so frugal that almost no one gets by them and approved the first time? I think these are good questions. It's a little scary for those who are going through the process. I think people just want the truth and to know if they should even truly hope for the first time out. If I didn't know better, I would say SSDI are in cohoots with the attorneys since almost no one gets approved until they get to that level. I don't mean this literally. I am sure that there are many decent people working for the SSA but it looks funny. It really does when you think that nearly all get approved at the hearing level when you now must part with 25% of that money to an attorney. It's all extremely unfair. Why does it need go this far at all? Are they supposed to turn you down right away? I mean here we have worked our whole lives putting into this system so that god forbid we need it, its there for us and then you get a brick wall. So honesty is not important, slickness is and that's where an attorney comes in. After paying the IRS 25% and a lawyer 25% sure does not leave much now does it....I really feel for all of you...I think this stinks. It sounds very odd to me.

12-09-2005, 11:10 AM

Thanks for all the valuable information you have given us, it is truly very much appreciated here.


You're just lucky to have a spouse that is helping you and helping you by being there for emotional support as well. It's good he is there to help you out in more ways than one.


I hear you - I think maybe they have budgets to meet and the gov't is probably really hurting right now with so many of us out of work and having issues to deal with.

12-09-2005, 11:17 AM
I think alot of the turn downs really depend on where you live etc...I know some people who have gotten it the first time and then there are those of us who dont. But I also got mine from the judge without a lawyer. I have been told that sometimes it does not even matter that the lawyer is there. I mean in my case I did all the work. I did have one, but because I could not have my trial moved to his district he dropped me at the last minute and I did not have time to get another one. But during that time he did nothing other than write SS and asked that the trial be moved. I have been told at times the judge does not even talk to the lawyer they talk to you. Funny thing they are allowed 25% but they can request more. Mine did and he got way more than just 25%. I just think they want you to give up and go back to work. But I know all of SS is not like this. But it does suck that they are in no hurry to speed it up. For me I filed my claim in July 2002 I got my first check Feb 2005. Right at 3 yrs. If not for hubby supporting me I could not have done this.

12-10-2005, 02:50 PM

I actually saw that same Laura Dern made-for-tv movie a couple of months ago on Lifetime!

Anyway, no, the DDS does not have a quota of denails or allowances that they are supposed to meet. Of course they are supposed to be very careful when approving people for benefits, because it does cost a lot to pay out benefits... But like I said, there is no quota. I see lots of people get approved the first time around here in Oregon, so maybe it really does depend on where you live. Some DDS's may be pickier than others. But eventually, most people who get denied DO eventually get benefits. So it's not like we're gaining anything by denying them the first time around. Because if someone appeals and they get approved at the Recon or Hearing level, we almost always have to pay them all the way back to the date they first applied.

LOL, SSA is not in cahoots with lawyers. In fact, we don't like dealing with them ouselves! Attorneys cause more of a hassle, and often slow down the processing time on cases. On top of that, they take 25% or $5300 of people's backpay benefits. I know I don't like that!!! If people are truly disabled, then they deserve to have all of their money! As a case worker/claims rep for SSA, I am not supposed to recommend to my clients whether they should get a lawyer or not. But I always try to make them understand that the lawyers don't really do very much, other than to help file papers, and talk at the Hearing appeals... I wish people would not get lawyers any earlier than the Hearing level, because they really do nothing for you that we couldn't help you with...(filling out papers, and etc.)

Personally, I think so many claims are approved at the Hearing level, because the ALJ's are so thorough with the cases. I mean, cases are often there for several months or even years! So many people go through your medical evidence, and review testimony that they can often realize how disabled someone is, and how much they have been suffering.

SSA is in talks to get rid of the Reconsideration level of appeals all together. So if your claim was denied initially, it would go straight to a Hearing. This has already happened in several states, and it would decrease the amount of time it would take for a denied claim to get to the Hearing level. So maybe that will help change the system a bit...

If you have any other questions, please let me know!

Megan :)

12-10-2005, 03:23 PM
if you don't mind I have a question also. When I had my hearing in Nov of 2003 the judge said they would review my case in one year from that date, but I've never heard anything. I still get my check each mth and all. So i dont guess i really got anything to worry about.
Did they just check my medical records and see where i've had so many surgeries and been threw so much without me knowing? or did something else happen?
Thank you for taking the time to help so many people here.
I know you have so many question coming at you and your very kind to take the time after working and also suffering to help us.
Your an angel.

12-11-2005, 03:26 AM
Hi all, I just last night found a SS Disability link searching again and it was from the Social Security Board. It is very long and confusing and I think you'd have to be a lawyer to understand it, but anyways, I did learn a bit of more what the ALJ Judge's role is or what he/she is supposed to do. They are basically to look at the FACTS! Then look at the evidence for or against the person and come up with a decision somehow. Well so we all know we need as much facts and evidence that we can find. The more medical records or info the better.

And Supermegs, thank you so very very much again. We appreciate you more here than you can ever imagine. I have called that 800 number so many times and they really don't know a whole lot. You have helped here a great deal. The local number when I call just has a machine that says the office is closed! That is valuable info that you have shared with us. Here I always thought too that the government liked lawyers. I never heard that lawyers made it harder or longer. I always heard people telling me to go get a lawyer. I thought I can fill out those long forms myself. So I did. Well so now I am at the Reconsideration level yet again, and will have to wait for a few months. Maybe get a lawyer if I have to go to a hearing level again, as the last thing I'd want to do is go in front of the judge again. I mean the doctors tell me to stay away from stress, blah blah, well that judge caused more stress than 10 years of working would.

12-11-2005, 08:30 AM
Bless you Meg. You are truly wonderful to come out here and take your valuable time as you do. I was totally joking about the "being in cohoots with lawyers" thing. I knew better, but you can't help but sometimes think they ought to be since that is the time when most people get approval....once they have gone and gotten a lawyer. I don't understand why our word, our sincerety and our doctors word is not enough, Why an attorney is the one to get us what we deserve.

I wanted to ask you this. Do you think that we can still do fine on our own in a hearing or do you really feel we must get an attorney then? I had heard that some hearings are mainly the judge looking over what was presented and asking the person who has filed a bunch of questions. Is an attorney really necessary at any level? I just think it's such a shame that people have to get to that point. I was also curious if you happened to know how much the IRS takes from a disabled person. Is it the standard 25-30 percent or do you pay less because you are disabled (It astounds me that we tax our sick and unemployed.....fascinating). The reason I ask is that if you are paying the IRS 25% and an attorney 25%, it leaves the disabled very little. How sad. :(

In any event, thank you so much for taking time to answer me. You are so sweet and so decent to do this and to help those that are having such a hard time with this system :)

12-12-2005, 05:27 AM
In my personal opion I do not believe that the lawyers will help you anymore than doing it on your own....Only because I went through the appeals with the judge without a lawyer and won my case, in fact I found out that day. In fact I did the paper work for my case. I sent the stuff to SS. I got copies of my medical records and sent my doctors letters. The lawyer did nothing for me. All he did was to try and get my case moved from one district to another and he was not even able to do that. I mean who is going to know more about your illiness than your or a family member? You are still granted the same privilages with or without a lawyer. For example you still get a chance to review your file before your hearing. I took my mom with me. I also took a voiding and pain journel. The law judge asked me questions and she questioned my mom. She then talked to the Doctor that was there then finally she questioned the career expert. And even though both the judge and the doctor consider my IC disablling because it was and is not a listed disease in the "Blue Book" my case came down to the career expert as to whether was any job in the national ecomony I could do.

My advice to anyone going through the appeals process from the law judge:

1. Docuement, docuement, docuement everything. Keep copies of everything you send to SS. Letter, medical records etc.

2. When you go for your hearing take a voiding journal and pain journal. I took it for at least a 2 week period just for them to see what my daily life in the bathroom consited of. Maybe do 2 weeks on month and another 2 weeks during another time. Just so they can see that it varies.

3. Be honest and upfront with your answer. My judge asked me several questions, like when my symptoms started, what I have done as far as treatments go, what I can and cant do on a daily basis. Like grocery shopping and housework. Who cares for my kids. What meds I take. If you need to write all of it down. A history of your IC and other illness and how they affect your life. You can look at your notes should you need to.

4. Should you need to stop the trial to go to the bathroom, do feel embrassed to stop it. I mean that is what you are filing for right. I had to stop my trial 3 times and I went countless times before even going in the room. My career expert saw this prior to the hearing, even though at the time I did not know it was him.

Usually there is the judge, a transpcirptionist, medical expert and career expert. I thought for sure the medical expert would not know a thing about IC. After all the "medical expert" I went to for them in the beg knew absoultly nothing about IC and I received my first turn down 5 days later. But the expert at my trial had done his homework. Like Megs said they have months to review your file before you are even scheduled for your trial.

I was worried about not having a lawyer, and I could even reseculed my hearing for later to get one, but I did not want to do that. After all it has taken several years at this point.

One other thing, I dont know how true this is or not. Maybe nothing to it at all. But usually you wait a while before your hearing in the waiting room. I waited for an hour. Now a friend of my uncle had his hearing at the same place. He was there for a back problem. Stated he could not sit for long periods of times. Well he had to wait over an hour for his trial and did not move from his seat once. Did not appear uncomfortable or what so ever. They refuse his claim and told him that they had watch him in the waiting room and he did not have problems at all. Once he got in the room with the judge his back was really bothering him....Point big brother is always watching...

Anyways these are just my pers. of what happened to me.

12-12-2005, 06:43 AM

Hi! I have never heard of an ALJ reviewing a case after he/she has already made a decision in the case. If you were approved, the ALJ should not be looking at your case in a year and making a new decision. What they might have meant, is that DDS will review your case in 1-8 years. We conduct medical reviews on every single person who receives SSI or SSD benefits. It's kind of done randomly, most people have them done every 3-7 years. Sometimes it can take a lot longer if your local office or DDS is backlogged with CDR's (Continuing Disability Reviews) though.

If you want to know when you are scheduled for a CDR, you can always call your case worker at your local office. It says right on your record when we should be pulling your case for a review. You might even be able to call our toll-free number (800) 772-1213 to find out. I don't know if the tele-service representatives know where to find that on your record, though. But it may be worth a try to call and ask them!

I hope that helps, and if you have any other questions, feel free to let me know!

Megan :)

12-12-2005, 06:55 AM
IC Princess,

I know you were joking about us being in cahoots with the lawyers. But I'm sure it really does feel like that sometimes. And believe me, you aren't the first person to ask me that! My own clients ask me things like that all of the time. I'm not really supposed to tell them that I think lawyers are a pain in the butt to deal with, because I'm not supposed to make any recommendations to them about whether or not they should get one. So that is frustrating for me too!

I would say that most people do NOT need an attorney at the Hearing/ALJ level. If you can fill out forms, and you're not afraid to speak in front of the judge, then you're good to go. But some people want a lawyer, so their lawyer can coach them on what to say. But it's pretty obvious to me- you tell the judge how you feel, and how your disability affects your ability to work. That said, I know it can be a scary process for many people, and a lot of those people like the idea of someone else handling things for them. Of course they don't like it so much when we have to pay the lawyer 25% or $5300. (We pay whichever is less, 25% of the total backpay OR $5300. I should know this, but I don't know if that's a national policy, or just specific to Region 10, where I work...)

Anyway, I would recommend that people get a lawyer if their case makes it to the District Court level. Becuase in these cases, you would actually be suing Social Security for making the wrong decisions at the prior levels. You have to go to a real courtroom and handle a lot of legal documents. I'm not sure if I could handle all that by myself, especially if I were severely disabled by IC and/or other disabilities, so at that point, I'd hand it over to an attorney.

There are several appeal levels before the District Court level, though... There's the Reconsideration level, then the Hearing Level, then the Appeals Council level, then District Court. I think Supreme Court is the only level after District Court... I don't see very many district court cases, though. I think most people must get approved before that level. I have probably only adjudicated 5-6 District Court cases in my time here... It's amazing how much backpay those people get, though!!!

Well, I hope that info helps... Feel free to let me know if I can answer any other questions!

Megan :)

12-13-2005, 03:59 PM
Meg, thank you so much for taking the time to get back to me on this. I was glad to hear you feel that we don't necessarily need an attorney at the first hearing level. I cannot believe what they take from us and yet they do so little. I thought maybe it was 10 % or something but Good Lord......

I am sure you relieved a lot of people when you said that they do not have quota's and stuff like that because that was a viable concern. Its bad enough when you don't feel well and are ashamed to file for something like this as is, but to be put through the ringer just to get what is rightfully yours to have under these circumstances, is rather sad. I hope Sosial Security has more like you. You sound like a really neat lady. Someone like you can only be an asset because you truly care about people and that's rare these days.

Anyway, thanks again :)

P.S. Oh by the way, do you have any idea at all what people on disability are typically taxed? I mean are they in a different bracket then regular income. Again,. I find it fascinating that the government taxes it's sick and unemployed....unreal....

12-13-2005, 05:57 PM
I have one question. I have been with my atty for over a yr & still no hearing, would it be wise to try to find another atty - one who could get my hearing asap? Is it even possible to get an emergency hearing even tho the courts are backed up? My atty right now is saying It looks like I won't be getting a hearing until spring/summer 2006 but they keep changing that farther & farther away.

12-13-2005, 06:30 PM
Gee I got my hearing earlier without even trying to get one, I guess I was lucky heah?

Here are some ideas for some of you. (This is only my opinion, you'll need a lawyer do not think you will not). Instead of trying to hurry that hearing up, prepare, prepare, prepare, ask questions of your lawyers. In other words, do your homework online!!

Find out some idea of questions that the ALJ Judge may ask of you. Think of some possible answers or strategies/plan of what you'd say.

Do you have an opening and closing statement?

Have you reviewed all of the Reports that your doctors and hospitals sent into SS Disability? SS Disability listed the reports that they received and from whom in the denial letter, go get that. Then go ask the various Medical Records offices to review and hand write that down! (It's simple simply call or visit the Medical Records Department and tell them who you are and that you want to see your file and that it is for applying for SS Disability. You'll need to sign a release. You'll need to show them proof of i.d. (license). PHOTOCOPY as much as you can of that - have them copy it of course. They may charge you something though to do that. Some do, some do not. It may be cheaper to have your lawyer ask for the copies.

You'll need those Medical Records(in my opinion now) when the ALJ Judge puts you on the spot (if he/she does), you'll have an idea what they said! Or you can say on such and such a report from this certain medical provider, they said such and such. Be full warned (as I did not know this), that although you will be allowed to review your Social Security Disability file AHEAD of time before you see your Judge for perhaps a half hour or so, that may NOT be enough time!! ASK/Demand MORE time. Why do I say this? Because that ALJ (at least mine) did NOT see that file ahead of time and had no idea what was in it until I got there! He TOOK that whole file from me and I only had my notes and my brain to go by.

ASK for MORE breaks if you need them to think of answers or go to the restroom! Need time to think? Then ask for more time to think.

Please, please, do not be offended by any of this. I am only trying to offer suggestions that would have helped my case, should someone had told me ahead of time what went on at that Judge's hearing level.

And you could also perhaps ask a lawyer what sorts of questions that YOU could ask the Judge back, and what sorts of questions perhaps the Judge may ask that you could say you'd rather not answer, and only let the lawyer answer for you on your behalf.

If you are unable to pay for all the medication that you could/should be on due to lack of money, if you are unable to go to all the doctors that your medical provider requested that you go to due to lack of financial resources, what would your answers be? If the ALJ asks you why you are not taking such and such a medication (even though you could have serious side effects and makes fun of you for that), how would you cope and what would you say to him?

Believe me, these ARE questions (not word for word), but these ARE the types of questions that the ALJ Judge DID ask of me months ago. If I had known what to correctly say or not to say (which a lawyer could suggest), I may have had a better time.

If the Judge asks if you have applied for work since your last employment on such and such a date, what would you answer? Yes or No. If you say No and he asks you why not, what would you say?

If he/she asks you do you clean, do you garden, do you socialize, do you go to church, do you have any friends come over to see you, what would YOUR answers be to those (and yes he/she may ask you that sort of thing).

Just an idea here okay: I read someplace on line that we (person trying to get disability) should not answer ANY questions regarding our past jobs/careers, and that we should let the lawyer answer those questions? Will the lawyer answer questions for us and if so, what would he say? If they say you can do sedentary work that is low in stress, what would you say? If they say you can prepare food, what would your answer be to that? If they say you can work at a factory doing simple work, what would you say? And no, you do not need any type of training to do a job they say you can do. And no, it does not matter whether there are openings in that city or not.

When I told him I hardly drive at all and how would I get there? You'd get there any way you could get there. No sympathy, no empathy, no concern at all.

What questions can we ask of a Career Expert, if and when the Career Expert lists the sorts of jobs that they feel we would be able to do?

12-14-2005, 04:15 AM
I remarried and so I no longer qualify for my supplemental social security. I called the office two days after my marriage and made all my changes. They argued with me that I was not even in the system. I said well I am as I collect S.S.D. and S.S.I..they continued to argue I was not there. I said well you need to record I have I married and when the documents get here I will send them in for a name change..in the meantime you need to record this because I do not qualify for the S.S.I. anymore and I don't want them to send the check. He still argued with me and I left the information and figured if the S.S.I. check came I would keep it and then make arrangements to send it back as I no longer qualify. I did keep October and Novembers
checks and figured they would contact me when they realized they made these mistakes. Even after I had sent my marriage license and name change asap..I finally got a letter yesterday..the one that states you owe them back. I still have those checks as I was not going to deposit or use them as I was not entitled to them. I was
married in early September..the letter I got said I needed to pay them back from the months of September through October and November as they finally stopped sending it in December. I still have no clue how to send them back or to whom to make sure they get where they are suppose to. I also had asked them numerous times to please tell me how to send these checks back uncashed as they are. Do you have any idea where I send them? I have been on social security disability for many years and on social security supplemntal income and know when you are not entitled to the latter one. I can't get anyone to tell me where to send these two checks and make sure they are credited to me as they should be. I also do not feel I owe back for September as my marriage came after my September one arrived and had not been planned at that time. I never thought about September as I figured it would start after I married. My late husband had died of cancer. I just remarried my dearest friend. Can you tell me who I need to contact to make sure these checks get back and to see what can be done about paying back the September one. I don't have the income to pay that one back. Had I thought they would do that too..I would of kept that check also. Those come out on the first and I wasn't married yet.
thanks for your help,

12-14-2005, 06:08 AM
IC Princess,

The Social Security Benefits are taxed using this method:
-If you are single, your SS Benefits are not taxed if your total income is less than $25,000, including Social Security

-If you're married, your SS Benefits are not taxed if your total income is less than $32,000 (You spouse's income, any income you may have had & SS income).

If your total income is more than what's listed above, the amount of tax you pay on your SS benefits varies depending on the total amount of household income. For a typical family, usually 1/2 of the SS income isn't taxable and the other 1/2 is.

If you receive any back $$, there are several other factors that come in to play to determine how much is taxed.

I agree with you about it being crazy. When you think about it, it's a way for the government to lower the total amount of benefits you receive without saying it directly.

12-14-2005, 08:54 AM

That is really weird that they couldn't find you in the system! Maybe they were looking under the wrong Social Security number or something(?) That is very strange!

As for the checks, you should return them to your local office ASAP, and get a receipt. I know it's a pain to go into the office, but it's the only way to be absolutely sure that you will get a remittance receipt for returning your checks. That will keep you from being overpaid. If they still say you're overpaid, you can submit a copy of your receipt showing that you returned the checks.

Good luck, and let me know if you have any other questions!

Megan :)

12-14-2005, 08:55 AM
IC Princess,

Elle beat me to it, but the info she gave you was correct...

Megan :)

12-14-2005, 09:08 AM
I know that was weird as I have been on disability for many a years..and they suddenly can't find me.
thank you for your help on that one.

12-14-2005, 12:40 PM
Elle, Thank you for that! Major help. I was wondering how that worked. The thing with back pay could be confusing because you get that all at once so it must make the year look big.

P.S. By the way, I am still using that Band Aid Wash and it really does help! Its the oddest thing but yes, it does soothe. I am so glad you brought it up in those other threads. I would have never tried something like that...lol.... :)

Thanks again Meg :)

12-14-2005, 02:44 PM
IC Princess- Band Aide wash is my best friend!! I'm really glad it's working for you as well. :)

12-18-2005, 05:08 AM
HI all,

It sounds like some of you here have had bad luck with attorneys and so now I am even more less willing to turn my case over to some big shot attorney that may take now $5300 or more from me, if I ever get it that is.

Here are only some ideas from what I am thinking now, input appreciated.

Do you think we should write or call our local SS office or our person who is doing our claim regularly and keep them informed on our progress? Do you think we should keep track of our sick days and our sick schedule and write it all down and send it to SS Disability? Do you think I should send them a copy of my asthma peak flow chart which shows I am always in the red alert go to the doctor or hospital range? Do you think we should ask the SS to send us to more doctors for further proof from doctors that they should take as good proof and as facts?

12-19-2005, 07:49 AM

Here are my responses to your questions:

Do you think we should write or call our local SS office or our person who is doing our claim regularly and keep them informed on our progress?

*By your progress, do you mean your health? If so, no, I don't think you need to do that. Most claims representatives would just take this info, and forward it on to the DDS or the OHA. Or it would get filed away, and nothing would be done with it. If you want to make sure we track your progress, then you should send your info directly to DDS/OHA, or you can ask that your claims rep send it to them.

Do you think we should keep track of our sick days and our sick schedule and write it all down and send it to SS Disability?

*Sure! More info is always a good thing!!! I don't think you need to put yourself out by doing this, though. A simple log will work fine.

Do you think I should send them a copy of my asthma peak flow chart which shows I am always in the red alert go to the doctor or hospital range?

*Yes! Like I said, the more info we have, the better!!! Again, I would send this directly to DDS/OHA, or ask your claims rep to send it to them, though.

Do you think we should ask the SS to send us to more doctors for further proof from doctors that they should take as good proof and as facts?

*You can ask us to, but we won't do it unless we don't have ANY information for you in regard to your disabilities. In some cases, we will also do this if your doctors haven't responded to our requests for medical info, or if you haven't seen a doctor for two years ore more. Otherwise, it is very rare that we would pay for someone to go to the doctor. Sorry. :(

01-11-2006, 03:31 AM
Thanks again, Meg, and everyone else for all of this fine support. I was away a bit with the holidays and was busy doing other things.

Yes, I am keeping track of my sick days symptoms each day writing things down, and do have a peak flow chart to prove things, and will have to re-write some papers as I have two psych appts with two different doctors this month. The disability is sending me to another psychologist fortunately and that is very good, as sometimes they give different diagnosis and sometimes things change. Since they are sending me to the doctor, they have to pay for it. Hopefully they will send me to some medical doctors as well. At least they are doing something.

Did talk to Disability on the phone yesterday, the lady was very nice, knew her job well and helped do what she could. My first case she found Virginia just got the appeal Jan. 6th, although I sent it many months ago. She said to allow 90 days or up to 120 days I think she had said for an answer. I asked her what a person is supposed to do in the meantime, when they have waited three years and can't work and can't pay their bills. She was very understanding and said how sometimes people have financial issues. She asked if I had went to my local Welfare office. I told her I did, that I knew those people and that they couldn't help as they had their budget cut by 2 Million Dollars. Then I realized that I forgot to tell her that actually our Social Services isn't Welfare any more as we have no Welfare in this state.

I told this lady that evidently Social Security needs more money for Social Security as they do not seem to have enough workers in Virginia, as it takes too long for answers (she said sometimes five years). Also told her they need more workers as my local SS office does not answer their phone, and that they are always closed so they need more workers there. I expressed my concern that we need more money for Social Programs not less, and that my local Social Offices at Human Services is having to cut their budget by 2 Million Dollars. Then I thanked her for listening and for doing what she could do. As always every time I have called that 800 number, I get a kind person with a good listening ear, although they do not make the decision they at least do their job well. Nor do these people make the rules.

On another note, I know two people that tried to get Food Stamps, and both are sick, and they could only receive $10.00 per month and that was only if they applied for work and kept applying and went through Job Service to do that. So neither of them did go through to try to get Food Stamps. I am lucky I have a good boyfriend and my mom that is supporting me or I'd be out in the streets or out getting Food Pantry.

01-11-2006, 04:47 AM
Domaincat I am sorry for such the long wait. But it is not just where you lived. From start to finish it took me 3 yrs and 3 months. I got my denial in the right amount of time, but my appeal took the longest. My state of Louisiana is mighty slow also in processing the claims. I honestly think that they hope you will give up and go back to work. We came like within days of losing our home and vehicle because of it all. Just dont give up keep up the good fight and it will pay off in the end.

01-11-2006, 06:52 AM
I've been a year already and am waiting until roughly June '07 for my ALJ hearing. That would be 3 years 3 months for me. It is hard, I have no income, I can't get help from the state. I did get food stamps - $152 a month. Otherwise, my mom pays for everything and she's been going into debt $1200 per month because of it. I lose my insurance 3/31 and I'm on about 10 different prescriptions. Don't know what I'll do about that, but it'll work out somehow I'm sure. My mom did recently get a raise and she's refinancing her mortgage to pay off some credit cards. We'll still be in the negative about $600, but that's better than before.

It's so hard and I get so frustrated so I know where you're coming from domaincat. About two days after I received my state denial (because my condition isn't severe enough and I'm not disabled for 90 consecutive days) I tried to vacuum our house. 1500 square feet and it took me an hour and half because I have to do it in pieces with breaks in the middle. I was so frustrated I was bawling. It's so tough and it's so defeating. I keep waiting for someone to acknowledge that I'm disabled and I don't think it's going to happen anytime soon.

01-11-2006, 07:24 AM
Hugs, Domaincat!

I'm glad to hear that your SSA workers have been kind to you! That is great! However, if your case is taking too long to process, then you might want to consider going to your Congressperson and getting them involved. Believe me, it definitely speeds up the process on our end!

Good luck!

Megan :)

01-11-2006, 08:02 AM
Not to discourage, but I did get my congressman involved, but it still took me over 3 yrs. If he helped sped the process up I would have hated to see how long it would have taken.

01-11-2006, 02:21 PM
That's terrible!!! I'm glad you got your congress person involved, it probably would have taken you 10 years!

01-11-2006, 02:50 PM
Ok I Have Lots Of Questions About All This Ssi And Disabliity Stuff. I Make A Nice Amount Of Money, Problem Is Have Worked At My Job For Ten Years And My Boss Has Asked Me To Cut Or Give Up My Hours To Better Myself. It Is Really Hard To No That Your Boss Thinks That. How Do You They Work All That>>>>>> Is It Based On Money? My Husband Does Not Make Alot. He Is A Realitor, And Tax Manager. Any Info??? How Do They Pay, Weekly, Monthly, What????

01-11-2006, 04:45 PM
Thanks to those that just have posted, it means a great deal as this is good support for all of us to share and help each other cope with all of this.

Usually there are pharmaceutical companies that may help somewhat with some of the medications, ask your doctors if any of the meds you are on are covered by a pharmaceutical company. Then just show you had applied for SS Disability or Medical Assistance and were turned down, they need your denial letter. Then they need to know your income. If it changes, then the next time you order the meds you just show them the income made. Waiting until 2007 sounds like a super long time for a ALJ judge hearing, way too long. More of us need to call and keep calling that 800 number and tell them to get more people working at Social Security, and more of us need to contact our State Representatives our Senators and tell them what we think, etc. Like tell them that the Social Programs need more funds for those in need, and less could be spent on other things like space travel (for instance).

Meg, thanks again - I did already previously send an email to my Senator and he sent a very nice letter in the MAIL! That was over a month ago, he was to check it out and have them contact him with any update and he wants to know what's going on with my claim through disposition. Someone from his own is supposed to contact me, when they hear anything of course. I'm still waiting for the Senator to find out something about my claim thought he could do something that I can't. Usually when I would call the 800 number, the person can't figure out anything about the Appeal in Virginia, but this smart lady DID know all about it. As I said previously, we do deeply appreciate all of the hard workers in Social Security and those that talk to us on the phone, those that interview us, they are all nice and professional and do their job well. The only person I had a problem with was the ALJ Judge person as he was real tough and really could care less about my pain and suffering, and he could care less about my mental illness. He only wanted me to give up the fight and go back to work, or at least that's what I think he wants so then they don't have to pay us. Well they'll have to pay us as I'll have to keep fighting this until I get it, as I can't work due to my mental condition and my chronic asthma and other pains and conditions. At least not enough to make enough money to make $830 a month that they allow.

May still have to go get a lawyer, but do not want to say I can't do it on my own.

And to the person that was asking how all of this works, we can chat about that later. For now, please simply go read the whole thread here it may take awhile as well as other articles in this forum under Social Security. As you and your husband combined being you are married, can only make a certain amount of income for you to be granted either SSI or SSDI. If you make too much, you aren't going to have to file for any benefits. One can work part time up to something like $830 a month and perhaps still APPLY for disability, if they are disabled. They can't just get it because their employer lays them off or lessens their hours. Then they may be able to file for unemployment, but that's if they are able to work and are looking for work each week. More on that another day.

01-11-2006, 05:31 PM

It also depends on which state you live in. I know some Congressmen/women get involved and push SSA more than others do..

01-11-2006, 05:42 PM

Oh man... I just wrote out the longest explanation and it didn't post!!! I'll try to explain myself again, though...

Based on what you have told me, I do not think you would qualify for SSI. SSI is a needs-based disability welfare program. Most people who have worked steadily for as long as you have are not able to get SSI. Your SSD would be too high, and most likely your husband's income is too high as well.

Most likely, we would focus on the Social Security Disability portion of things, since it's a work-based disablity program. However, you must be earning less than $860 per month GROSS to qualify for these benefits. If you are earning more than that, we would deny you based on Substantial Gainful Activity. (Which basically just means that you are still able to work and earn more than $860 per month...) If you have stopped working, or you're earning less than $860 per month, we would take a disability claim from you.

Basically, the disability claim just involves a bunch of paperwork. It is not hard, but it can be time consuming. Your case worker/claims rep at SSA would walk you through all of that, and they would explain all of the details of the program to you. Then we would send your case to your state's Disability Determination Service. That is where they request and go over all of your medical records. They make the decision about whether or not you are disabled, for Social Security's purposes.

From what I have read on this board, most people with IC seem to get turned down the first time around... I think it is because IC is still a fairly unknown disabiling condition. So if you have other conditions that affect you, be sure to let Social Secuity know right away. If you are denied anyway, you can appeal that decision. Most people who appeal DO receive a favorable decision at the Reconsideration or Hearing appeals level. I know all of this sounds complicated, but your claims rep at SSA will be able to help you, and I can too. :)

If you are approved for benefits, then you will be put into pay status, and we will begin sending you benefit checks. If you file a Disability claim, you can find out ABOUT how much you would be entitled to, right after your application is all filled out... The benefits are paid monthly, usually on the 2nd, 3rd or 4th Wednesday of the month...

I hope this info helps you out! If you have any other questions, just reply to this message and let me know!

Good luck!

Megan :)

01-12-2006, 01:18 AM
Hi Megan
I saw where you were talking about someones husband making too much money to apply for SSD. Can you tell us how much money is considered too much for your husbands income?

01-12-2006, 03:03 AM
Dawnmarie, I see you're in the same state that I am. Good luck plan on a long way.

Try to get to the doctors often the more the better, if you have health insurance to update them and to get any symptoms checked out, x-rays, etc. to get any diagnoses done while you still have health insurance at your job. Better yet if you can get to several different types of doctors, see if one of them will say you cannot work for a year for gainful employment (good luck trying to get one to do that).

If you have more than $3,000 in total assets with your being a married couple, you will not be entitled to SSI although they will indeed request that you still sign up for that the same time you register for SSDI. (Single person it is $2,000). This is all what I have heard from others and read online.

Yes, it may be $860 that one can earn and still be able to continue receive benefits, I know some that have volunteered and some that have worked part time hours and they still do receive their disability checks each month.

Please see the limitations/rules on the Social Security website links of which are here someplace or I'll look it up. You can find a lot of information on this subject in search engines and also by simply calling that 800 number.

Fill out those functional reports on an example of a BAD day, not a good day! On a bad day, could you do much? What could you do on a bad day when you were in a lot of pain? Do not fill the forms out as a day you had a good day, use a bad day type of example.

Get copies of ALL medical papers that you can YOURSELF for now at least, go to your doctors and hospitals and other treatment care providers. Ask for Medical Records Dept. (call or visit them in person). Tell them who you are and why you are there (that you need copies of your whole record for purposes of applying for Social Security Disability). They will have you fill out a Release of Information and sign it, and they will ask you for proof of identification (drivers license). Then make photocopies of all of that, and send to disability (or give to a lawyer). The more paperwork the better.

Remember most people get turned down at least the first time, it would be very very rare to get accepted the first time. Then you simply APPEAL and fill out a simple form again, and again wait many months for another answer. If you get another denial, then you simply appeal again. If you can work at all by all means keep working, as this takes many years and it is almost impossible living on almost no money, when you at one time had a nice salary. Since you had a good job as you do now and are making a good deal of money, it would be quite hard I think for you to get it, as they'd probably give you a list of jobs that you can still do.

The ALJ do not go by the pain level nor do they seem to care what pain you have. They ask you so many hard questions it is hard to answer them. They may ask you have you looked for work, have you done any work, do you socialize, do you do any yard work, do you do any cleaning, etc.

A lot has to do with that functional report that we must fill out. You can do that online and print every single page. It takes a very long time to do all of that. What the ALJ wants to know (from what I have read) is WHY you can't work, WHY is your illnesses preventing you from working. Now that's a bit hard to answer when there is a judge, a career expert, as well as a court reporter in the room all sitting and listening to your answers. It's hard to think when you are there, so please take a lawyer with you if you have to go to the ALJ Hearing level in Madison, as they are very tough there. Sometimes there are free lawyers to go to, but most lawyers can charge up to 25% or up to $5,300 (this is from what I understand I could be wrong), although they only get paid if they win the case for you.

01-12-2006, 06:33 AM

Sorry for any misunderstanding... But we don't look at a spouse's income/wages for the SSD program. We only look at it for SSI, since SSI is a needs-based program. The only income we care about for SSD is your own wages, and possibly worker's compensation.

Let me know if you have any other questions!

Megan :)

01-12-2006, 02:13 PM
Domainecat...........this All Sounds So Hard, I Am Like Is It Worth All This.........but On The Other Hand, My Boss Has Asked Me To Cut My Hours, I Know He Feels Bad, I Have Been There For Ten Years. My Husband Does Not Make Much Like I Have Said Before, If You Sell A House You Make Money. That Is How It Works. I Have Looked At What They All Say About It On Here. It Just Sounds So Confusing. Well And As Far As Docters, I Just Started To See A New One Actually Yesterday. I Have To Go For Another Cystoscopy, And Hydro, Also I Guess He Wants To Biopsy Stuff Again To. Then After That He Was To Do Interstim. It All Sucks..........i Remember The Good Old Days!!!!!!! Eating,drinking, Sex!!!!!!!!!!! Anybody Remember That??? Where Are You From??? Ok So If You Are Reading Is Anybody From Wi? And Has Filed? ALSO THANK YOU TO SUPERMEGS, YOU HAVE BEEN A GREAT HELP.

01-13-2006, 08:55 PM
Hello! My name is Amy. I have IC, Fibro, Endo, IBS, Migraines, Peptic ulcers, and a hernia. I haven't worked in 4 1/2 years due to the unremitting pain. It took so long to get diagnosed that I kept thinking they'd find out what was wrong with me and I'd get better, but of course, like everyone else, it took years to be diagnosed. Then, I guess I was in some serious denial and didn't want to admit that this was it and I was not going to be able to return to work. All the way, I have met with DRs who thought I was just a chronic complaining hypochondriac and some who actually told me that the only Dr I needed to be seeing was a psychiatrist. The day the last one told me that, I finally broke down.....literally. I had been to 7 differant Drs and no one knew what was wrong and I felt so helpless and hopeless. I don't remember the next 2 days, but my first memory was sitting on a Port-a-pot in ICU doing #2 in front of my mom, husband, cousin, and sister-in-law!!!! (To put this in perspective, I have been married for 7 years and am so modest that I have to turn on the fan in the bathroom every time I pee if my husband is within earshot and still sometimes cant go, b/c I am too embarrassed!) Anyway, after that , my Gyno finally belived my pain level and did laproscopic surgrey and had the Uro do the cystoscopy w/ hydoro at the same time and lo and behold, they found extensive endo, an ovarian cyst that was larger than the overy, and IC. (I had also had the PST test.) NOW I was believed, so they did not put me on the Psych Ward. However, now I do Bladder washes 2x wk and am on 19 different meds. Here's the catch, though, they made me see a psychiatrist. He did a routine drug test to see what I had taken and found traces of marajuana in my system. (Since none of the Drs had given me any help at all, I had tried it 4 the 1srt time the week before to see if it would help.) (It did.) And to be honest, I probobly would have done it again just to get out of the pain, but it is prohitively expensive, hard to access, and I'm terrified of getting caught. Now though, I have a few more problems. #1 If Social Security reads that on my psychiatrists notes, (and yes, it's there), will that knock me out of disability even though I haven't done it since? .....I am scheduled for a hearing with an ALJ in 3 wks. And yes, I have an attorney who doesnt know this part. #2 The other problem is that now out of 19 meds, the only thing I can get for pain is an anti-inflammatory, Neurontin, and Lidocaine patches. The meds arent controlling it or even taking the edge of it, and I am getting desparate for refief. My doc wont give me anything stronger b/c he says they are too addictive (ie he thinks I would have a problem with this b/c of the one time pot thing.) I have explained to him that I will be glad to submit to random drug screens from him to prove I am actually trustworthy and, but that having untreated, unremitting pain for the rest of my life was not a viable option for me. SO now what? I am scared about the hearing. What if they know? What do I say? What if they say, " If you hurt as much as you claim, and if your DR believed you, why wouldn't he treat your pain. I mean I know you guys understand that most Docs dont care if youre in pain, but most people wouldn't belive that. Would a judge? Thank you for your time and patience reading all this. I am sorry it is so personal, but I had to explain so you guys would understand. I appreciate your doing this so much, Meg. You are my hero. And thanks to all of the rest of you who look out for each other on this board. You guys are the BEST!!! :help:

01-14-2006, 04:35 AM
First of all, you need to tell your attorney what you have told us. Better that he know you dabbled a bit with pot than to find out at a hearing.

Are you following an IC diet? The Patient Handbook at http://www.ic-network.com/handbook has information about which foods and drinks are potential problems, along with which ones are usually safe. There's also information there about treatment options.

Also, it may be that you need to see a pain specialist to help get your pain level under control. They are specifically trained in that area and can usually help.

Sending healing thoughts,

01-14-2006, 07:18 AM
If you took an overdose, no wonder they made you see a psychiatrist. They have to. You're lucky they didn't commit you to go to one and make you take certain kinds of psych meds.

Sorry to hear you are in pain. No, sorry to tell you but the judge won't care whether you are in pain or not and he probably won't be very sympathetic about it either. So why does this pain stop you from working? Pain isn't a diagnosis, it's a symptom. At least they were able to find out the real causes for your pain now and you are getting some relief perhaps. At least now you have some real diagnoses that prove you were/are in pain, as sometimes people don't believe us. Perhaps your pain will go away, perhaps your pain will not be so bad if you go through therapy. Perhaps a therapist could help you talk over your problems and issues that are troubling you so that you can feel better. (I'm not saying that, I'm just saying that because they sometimes say nonsense like that to us).

01-14-2006, 03:45 PM
Thank you for your replys. Yes, I do follow the IC diet. I have been diagnosed with the IC since 9/2003, so I have followed it since then. My biggest thing against working (or even going hardly anywhere for that matter) is the gazillion trips to the bathroom, and the pain. For me at least, when I start having problems in one area of my body it causes the other parts to act up. Like my bladder will cause the fibro and IBS to act up. And vice versa. I dont know if everybody is like this or if that is just me. I am just really nervous about the hearing. But i will be taking your advice and telling the attorney about the pot. My brother knows about it, and he's an attorney (but not a disability one) he said that it shouldn't matter, after all, we have a President who tried cocaine and he gets a govt check to run the whole country! But I honestly think its harder to get on Disability than it is to get elected President! LOL!! Oh well, all I can do is hang in there like everyone else and hope for the best.

01-15-2006, 04:46 AM
Meg & all,

The Senator of our State is coming to our area today, and if I have a chance to speak, I hope I can say my two words with him to get more funding for social programs. The County cut 2.2 Million dollars from our Human Services budget, and that is causing a lot of trouble here. We do not have a Welfare office to go to. I don't know how long we'll get to speak, and I'll be sending him another email as well telling him what the Appeals Court in Virginia said, as yesterday I got a letter saying they would not go any further with the case (they won't even send it to another ALJ as I had hoped, they are agreeing with the decision of the ALJ they did not find that he did anything wrong) so thus another denial, my fifth denial (is that a record)? I'll have to go to a lawyer now for sure. Do not want to have to go to DC for a lawsuit. But will have to see what a lawyer says at least to try to get my new case going better. I am feeling real sad about that right now, as the Appeals in Virginia was like the last hope I had left and all that time working on all of those forms, all the time and expense with paper and ink on the printer, all that time with photocopies and sending the forms back and forth.

kelly McC
01-15-2006, 05:38 PM
I have 2 questions do you have to file social security disability papers before a lawyer will look at your case? I have tried a few offices that say I must file first. I was hopeful a lawyer would be able to assist me in filing the papers.
Second questions I am not understanding the working part. You must be completely out of work before you can apply for benefits. I had worked fulltime for 13 years about 3 years ago I had to go to 2 days a week. It has put a burden on us financially I still am not able to return fulltime and specialist are saying that it probably will be permanently. They have suggested on every level I quit working entirely but have said its my choice. From what I'm reading it sounds like you ccant have worked for a entire year?

01-15-2006, 08:35 PM
Hello! I, like you, spoke to a lawyer first. But, like you, all I spoke to said to go at it alone first. So, I applied on my own and got turned down. Then they were willing to take my case. I got turned down at the appeal, and now we are going to the hearing before the ALJ in a couple of weeks. I personally feel it is best to try on your own first, even if an attorney aggrees to assist you. I say this because for starters, who knows, you might actually get it on your first shot. (Yes, this is unlikely, but it is possible.) Secondly, as far as the paperwork goes, you will still be doing it all, even with an attorney. Mine has done next to nothing. From everything I have read and been told, they bascially benefit the most in coaching you in what not to say at the hearing, and how to phrase answers to questions that you will asked in a way that puts your disability in a way that is consise but still explains it in a way that the layperson can understand how debilitating it can be. The lawyer has also been beneficial in scheduling appts with our own psychiatrists and our own people to do a functional capacity exam. They also arrange the medical records so that the tests are in one section, diagnoses in another, etc. so it is easier to extract info from on the spur of the moment in front of the judge. I haven't met with mine yet for the pre-hearing consult, but his staff has told me this is what he does among other things. They also got my date moved up 8 mo for me on a needs basis. Hope this helps!

01-16-2006, 04:54 AM
Usually you file on your own the first go around then when you are denied they will look at your case and either accept it or not. Like ihurttoo stated you might win the first go around. I did get a attorney after my denial and he did nothing for me. In fact he dropped my case like a month before going before the Judge. So I went in without an attorney and won my case. I did all of the paperwork anyways and even he could not get my case moved up. I contacted my Senator dont know if that helped or not, cause I still waited almost 2 yrs for a court date. Mine from start to finish took almost 3 yrs. I have heard some say the attorneys dont do much for your case, and others state that they do. It may depend on the attorney. Even though the judge and the doctor there agreed my IC was severe and disabling, because IC is not in the Blue Book they could not rule on that alone. So my case came down to the career expert who testified there were not jobs in the national economy I could do.

01-18-2006, 04:25 PM
I was awarded SSI a year and a half ago after a two denials and then getting a legal aid lawyer which was over a three year period. It definately is not enough to live on. The judge I had in the end actually lied and said my doctor never diagnosed me with fibromyalgia and my lawyer caught it and appealed. He had me journal for about a month and sent in the paperwork proving the judges wrong decision based on the legal guidelines and we won.

I am on a waiting list for low income apartments now for five years and my son and I have lived in both of my daughter's basements while waiting. I did live with my mother for about a year until she died which broke our hearts cause she was the greatest mom. Her house had to be sold cause of our big family and I ended up remarried and separated and just up and down the river in life for the past three years as far as making ends meet.

Anyway, I do have a question for SuperMegs. I am temporarily, until summer, helping my daughter out by watching my four year old grandaughter part-time unti she goes to school in the afternoons. She pretty much takes care of herself and gives me quite a lift, the little blessing.
It took a long time before I got a check from the state for watching her and I called SS to report it about ten days after the first check. The man said "ok, I'll call your city's office and notify them and they will be giving you a call. That was at the end of October. I still have not heard anything, does it take this long to follow up?
It's about $200 a month sometimes less, will they take half of everything I've made since then, out of one check?
Also, will they review my case thinking it could be "substantial work"?

I am in an apartment right now that is taking most of my check and I have to get food from charity every month so these checks have helped a lot.

Thanks for the time you take to answer!

01-18-2006, 09:37 PM
Okay, now this is weird. My attorney's paralegal called me today and tells me that my attorney wants to know what I said to the ALJ to get my hearing moved up. I have NO idea what she is talking about. I told her that and that I thought that they were the ones who somehow got it moved up. When I had gotten denied on the appeal, back in October, my attorney orginally told me that it generally takes anywhere from a year to a year and a half to get the hearing. So when I got a letter this past week saying they had me scheduled for Feb 1, I was thrilled. I just thought it was either coincidently early, or that the attorney did it somehow. But I haven't talked to anybody! I didn't even know who the judge was going to be untlil I got the letter that scheduled the hearing. Now I am totally confused. She said, well somebody has talked to somebody b/c the judge's offices letter to my attorney stated that they moved it up because they have concerns about my emotional stability (I attempted suicide last April b/c of the unremitting, uncontrolled pain and the hoplessness of never getting better). So if the office told my attrorney this, is there anyway that the SS examiner may have told the judges office I am unstable? And if they think I am unstable, is this going to make them look at me unfavorably? I am pretty scared. I mean how on earth can it be good that the judges office thinks I am "emotionally unstable"? Please tell me your thoughts. Do you think I need to get a letter from my MD or a psychiatrist saying I am not unstable? Please advise.

02-28-2006, 04:02 PM
First of all thank you for being here to answer so many questions about disability. It is such a long, frustrating process.
Here is my story. I have been receiving disability for three years because of IC and numerous other health conditions. When I was approved I was told that I would not be up for review for seven years. I had been approved at the State level and then before I received official notification via award letter my file was pulled for federal review and sent to PA. Lucky huh!
Anyway, yesterday in the mail I get a Disability Update Review form. I called the "800" SSA number and was told that my records show that I was not up for review until 2010 but I needed to go ahead and fill out the form that there might be something that I could report that was happening now that might not be happening in 2010, etc. I called our regional office and was told that I was not up for review, according to their records until 2010. They said that it could be that there was an "input" error and I got the review form - or that at the federal review a different date for review was placed on my case. I would think if that were the case that the SSA would know wouldn't they? I have a tendency to get wordy so bear with me please.
I got on the SSA site this evening which says that a "review" is done when you have started working or your condition has improved - neither of which has happened. I am physically "sick" after getting this review form. As you know, any stress makes IC so much worse and then with the worsening IC comes even more pain and depression. I am one of this IC'ers that has constant, severe pain. I also have had to start doing self catherization because of high residuals. My condition has actually worsened - instead of gotten better.
It takes so much out of you going through the initial process of disability -getting turned down, appealing, getting approved and thinking that finally you can go without worrying about it for seven years and then have this happen. I don't think that I can go through all of that again.
It isn't enough that this condition takes time out of your life dealing with it, time taken away from things that you enjoyed doing and can no longer do, time away from family gatherings, etc. that you miss because of your health, your relationships suffer, everything - and then to have to go through this again with disability. I am so angry and upset. I just don't understand.
I have worked all of my life. I am not proud to be on disability, this isn't how I thought that things would turn out for me and my family. I don't like it but that is the way it is - it is enough just having to make it through one day to another without having to worry about your benefits and a review. I am not a "slacker" I have worked hard througout my life, I enjoyed working but I can't do it anymore. This morning it was 5 am when I finally got to sleep, this happens all of the time...
Will SS go through the whole thing like they did before and request records from all of the treating physicians, etc. AND, have you known of any of these reviews to be politically motivated? I know that maybe sounds strange - but I know how powerful politic's can be. I just find it strange that I get in touch with a politician about something concerning SS recently and now this.
Thank you for listening.

03-01-2006, 09:43 AM
Dear Megan,
I Was Turned Down For Ssd Now I Have Submitted A Appeal To Virginia Appeals Court,how Many If Any Are Ever Approved From There? {appeals Court In Virginia**....thank

03-01-2006, 10:59 AM
Hugs, Susan!!!

I'm sorry that you're having to go through this, and that it's stressing you out so much. I know it can be scary to have your case pulled for a CDR, (continuing disability review.) First, let me tell you that very few people are ever found to NOT be disabled anymore during the CDRs. I would say that MAYBE 5% of people who have a CDR are found to no longer be disabled. And if that happens, you can always file an appeal right away. If you appeal within ten days, you can also request payment continuation. So your benefits would continue while the appeal is taking place. I am not telling you this to scare you... I am just letting you know what would happen in the worst case scenario type of situation. Again, only about 4-5% of disabilities are found to have ceased during CDR's. (I just confirmed this with a woman who sits by me- she does all fo the CDR's for our office.)

As for the paperwork that was sent to you, yes it could totally be an error. You might not have to worry about this at all. I would find it VERY odd if they were trying to do a CDR on you now, when you were set to have one done in 2010. Ususally, they are done a year or two LATE! If I were you, I would call your local office, and ask to speak to the person who handles CDR's. That person will have a list of all of the clients who have CDR's pending. They will be able to let you know what is going on with your case, and if you need to fill out any paperwork. If there has been a mistake, they will be able to let you know. Calling the Regional Office or the 1-800 number don't always work, because they don't all have access to CDR 2000, the program that is used to control all of the people who are having a disability review. I would call your local office ASAP, if I were you. The sooner you find out what's going on, the better you will feel!

Good luck with all of this, and let us know how it goes. If you have any other questions, or need any more help, just respond to this message, and let me know! (I usually only check the board when I get an email saying that someone has replied to one of my messages, or if I get a private message.)

Best wishes, and hang in there!!!

Megan :)

03-01-2006, 11:47 AM
Hugs, JibbaJabba!

I am sorry to hear about your denial. I have only received about 10-15 decisions back from the Appeals Council (all of the AC cases go to Falls Church, Virginia) and only one of those cases was denied at that level. Then that person took their case to the District Court level, and they won.

Good luck, and let me know if you have any other questions!

Megan :)

03-01-2006, 12:18 PM
I'm up for a state ALJ hearing sometime around June of '07!!!! I can't believe how long I have to wait.

03-01-2006, 01:54 PM
Thank you so much for getting back to me so quickly. Our Regional office is in Covington, Virginia. They told me that I wasn't up for review until 2010 BUT there was a notation that a CDR would be due by August 2006. The worker at Covington said that she would check on this and get back to me by next Monday and let me know what is going on.
So what I need to do is call the State office in Charleston, WV in the state where I reside?
The CDR was mailed from Wilkes-Barr, Pa. It didn't come from Charleston, WV. Would it normally come from Charleston, WV?
The SSA-1099's were late. There were three of my relatives that did not receive theirs on time as well. We could not do our taxes until we received the SSA-1099 and really needed to get them filed so we could get our tax money back. I didn't receive my 1099 until around February 16th after I requested a duplicate and after contacting Senator Byrds office concerning the matter. I am really concerned that this might be, as I said, politically motivated. I hope not, because if that is the case then I might not be in the 4-5%. I know that politics aren't supposed to be an influence in these matters but you know as well as I do that they can play a big part in everything from determination, appeals - everything.
I will call the office in Charleston tomorrow and see what I can find out.
Thank you again for your help. It is wonderful that you take the time to answer questions here. It is wonderful to have someone that knows the disability process and can help people here.

03-02-2006, 05:24 AM
tiggersorensen I understand your frustration. I was denied in June 2003 filed my appeal and did not get a court date until november 2004. 17 months later. I was told alot depends on the state and the back log of claims they have. I enlisted my congressman to help me. If you have not done so you might think about that. The back pay was nice when I got it, but I came like this close to losing my home and everything.....Goodluck and DONT give up :grouphug:

03-02-2006, 07:30 AM
Patricia, how did you enlist your congressman to help?

03-02-2006, 10:43 AM
I found out which congressman was in my district and wrote a detail letter explaining my situation with him and seeing if he could help me out any. After that he stayed in contact with me and anytime he recd info from SSD he would let me know.

03-02-2006, 03:11 PM
Thanks Meg,

03-03-2006, 02:35 PM
Hey SuperMeg, I was just wondering if you have any advise about what to take to my SSD Hearing. My hearing is March 14, 2006.
Thank you, dlbarnes

God Is Good All The Time. No Matter What You Have To Go Through!

03-04-2006, 03:32 AM
Hi Megan,
Can you tell me once i have appealed to the courts in Virginia can i submit any other info to them again afterwards?

03-25-2006, 08:35 AM
i'm new to this,in my frist stage of interstim4-10-06
been hurt 4.5 yrs.&now this!!been deniled 2times
while wait'n 4 hear'n.just try'n to stay'n hopeful

03-25-2006, 08:56 AM
Hi great to have you. Good Luck with whatever you choose to do.

03-25-2006, 03:16 PM
curlycue,thank you for e-mail will be in touch,feel free to e-mail
anytime.how was the surgery for you?

03-26-2006, 04:30 PM
agodbelove, I have not had any kind of surgery, I have been on Elmiron for 3yrs and I do the heparin cocktail I see dr lowell parsons in san diego.

03-27-2006, 05:54 AM

I don't think you will need to take anything with you to your hearing. If you'd like, you can bring your medications/prescriptions that you take. However, they should have that information in your claim file. They will also have all of your doctor's records and medical evidence in your file. If you would like to bring a character witness, such as a friend or family member who can attest to the pain and struggles of your medical condition(s), you can bring them along, but be sure to talk to your attorney about this first. If you do not have an attorney, just let the judge know at the beginning of the hearing that you have brought a witness with you.

Good luck with your hearing! Be sure to let us know how it goes!

Megan :)

03-27-2006, 05:57 AM

Yes, once you have sent a request to the Appeals Council in Virginia, you can still send in medical records and/or other evidence. You can drop them off with your claims representative at your local office, or you can mail them directly to:

Appeals Council
Office of Hearings and Appeals, SSA
5107 Leesburg Pike
Falls Church, VA 22041-3255

Just be sure to include your name and SSN on anything that you send in.

Good luck,

Megan :)

03-27-2006, 06:05 AM

Good luck with your hearing! It seems like a lot of people on this board got denied until they got to the hearing level... So hopefully you will get approved this time around too!

Megan :)

05-11-2006, 09:25 AM
Hey guys!

I just wanted to let you guys that I am still around... I was MIA from the board for a few weeks, but I'm back! :)

05-14-2006, 06:22 PM
I've been reading most all of this thread and it has helped me understand alot. Thanks for taking so much of your time Megan to help everyone. I never thought I would be asking questions about disability, but here I am at age 25. :(

I have IC, POTS, GERD, IBS, chronic joint pain, chronic folliculitis, and congenital heart defects (no symptoms from that). My main problems of course are POTS and IC. I have worked full time with the IC symptoms for over 2 years. I was just recently dx'd with the POTS (postural orthostatic tachycardia syndrome). In my case the POTS outweighs the IC, but both are very hard to work with, almost impossible.

I make double what my husband makes, which is why I continue to suffer through each working day. If my income isn't there, we will probably go bankrupt. My husband is finishing CDL training and will be looking for his new job by the end of this week. Once he starts his new job, he could be making more than I do, which might let me be able to quit my job, or at the least cut my hours dramatically. After my PCP suggested maybe it's time for me to consider diability, I've been seriously doing just that.

Most of my POTS symptoms are worsened while at work because of being on my feet for so long (I'm a nurse). Of course my bladder is swollen, painful, full of pressure, retension, and my frequency is up while at work. Some days I have found myself in tears in the back of the nursing desk, hiding myself from the other employees and residents because of how severe my symptoms are (either pain from IC, or feeling faint from the POTS).

I am worried about taking this step, but I think my time has come. I was thinking that I would hire an attorney, but after reading from this thread, I'm considering doing it myself. I didn't know if I could sit through all the paperwork, or even understand it all without making myself dizzy...but, it seems I might end up doing that with an attorney as well.

I still work at this time. The only evidence at my work that something is wrong with me is the fact that I have stopped working overtime completely, that I had to leave early to go to ER twice, and had to go home early once, and just the witnesses who have seen me suffering there. I have still never called off work (though I'm starting to consider doing that when it's neccesary, instead of trying to stick it out).

Will I have to stop working for one full year before even applying? I mentioned that to my doctor when he suggested disability for me, and he said that's not always the case. He feels I would easily be approved, but it seems with all the info I've been reading, that it's not so easy. I know that money will be tight if I make nothing.

I also don't know what to do about my insurance if I quit my job. There's absolutely no way I can survive without insurance. If I got another kind of cheaper insurance, I probably won't be able to continue to see the same specialists or primary...and they are fantastic. They all try so hard to get me well, and seem to care alot.

Thanks for listening. I'll give everyone's eyes (including mine:dizzy: ) a rest. Any suggestions from anyone would be appretiated. Thanks alot!


05-14-2006, 07:41 PM
dear Jen,
agodbelove here,keep your head up!Appling for SSI is a Process!!!
i have a lawyer thats part of it,you need time.Money is hard to come by
stay connected until you know if you can.I've been wait'n 4.5 years,been
denial 2 times,now wait'n for hear'n,maybe June or July.my back was hurt
at work,after surgery they had cut the nerve to my bladder.Now i just had
interstim implant,4-10-06&4-24-06 sooo now i'm healing!!!:headbang:
I pray for you:pray: you pray me:pray: STAY IN TOUCH!!!!!!!!!:welcome:

05-15-2006, 05:02 AM
Thanks agodbelove for your quick reply. I think you're right. It definetly seems to be a long process. I just hope I can make it finacially throughout the long wait.

All I know, is that somethings got to change. I can't continue to drag myself to work each day and suffer through the hours until I can get home to rest. I has become way to much for me to handle.

I believe I might be becoming depressed from all the stress it puts me under, though I haven't taken any steps yet to help with that yet. I don't believe at this point that it's a medical condition. I think it's my life, and that I'm burnt out from trying to continue to live normally while inside dealing with pain and suffering. Sometimes I can barely make it up the stairs to get to the bathroom because I become so weak, dizzy and SOB...and I expect myself to go to work and be on my feet for at least 3 hours at a time before I can sit down, just to get up and do it again.

Okay, I'm rambling now...sorry. Thanks for your support and trying to make me understand that it could take a while.

I know I have the support of my doctors so that helps. (Well, I know I have support from one, I've yet to discuss this with my Cardio and Uro, but I believe they will also support this decision).

Any advice about the not working for a year, and insurance issue?

05-15-2006, 06:27 AM
I suffer from depression,i fought a good fight.After about 3 years,one day
i just started to CRY....couldn't STOP!!!!knowing my self..something was
wrong!!!I take paxil 37.5 &now it's WHATEVER....Really helps.The times
i feel overwhelmed with it all..pain,paperwork,pills:headbang: :headbang:
Keep on top of it all.Alot of times it's in the wording of your Drs.:woohoo:
There is athing called general assist-not sure how it work-need to know
myself.:confused: need all the help i can get!stay in touch:pray:

05-15-2006, 06:27 AM
I suffer from depression,i fought a good fight.After about 3 years,one day
i just started to CRY....couldn't STOP!!!!knowing my self..something was
wrong!!!I take paxil 37.5 &now it's WHATEVER....Really helps.The times
i feel overwhelmed with it all..pain,paperwork,pills:headbang: :headbang:
Keep on top of it all.Alot of times it's in the wording of your Drs.:woohoo:
There is athing called general assist-not sure how it work-need to know
myself.:confused: need all the help i can get!stay in touch:pray:

05-15-2006, 08:33 AM

Hugs!!! It sounds like you have been going through a lot, and I'm so sorry that you are dealing with so many different medical conditions right now! It's great that your husband may be earning a lot more money soon, though! I'm sure that will help out a lot! And if you were to stop working, Social Security Disability could definitely help to supplement your income!

I know you weren't really asking me, but I would NOT recommend going to a lawyer. Yes, there is paperwork to fill out, but it should not be very difficult to complete, especially when you are first filing... If you need help filling out forms, the case workers or service representatives at your local Social Security office should be helping you with that!!! Lawyers who want to help you out in the beginning are usually HOPING that you will get denied the first couple of times... After all, the longer you have to wait to get paid, the more they receive for helping you out. It's terrible, really. So I NEVER recommend a lawyer to anyone, unless they have to go to a Hearing. Even then, it can be done without a lawyer, but many people prefer having someone else take care of everything for them. If you ever have questions about the paperwork that Social Security were to send you, you could always Private Message me and ask me. :)

From all of your conditions and their symptoms, it sounds like you could be a good candidate for receiving Social Security. We are starting to recognize IC more and more, and we definitely take heart conditions very seriously. So I would encourage you to look into filing for benefits, especially if you are continuously in pain on a day-to-day basis...

To answer your question about working, NO you do not have to stop working for a year before you can file for benefits. However, there is a five month waiting period. So for example, let's say you stop working in May, and you file for benefits with us in June. We would look at May as your onset date; the date your disability became so bad that you had to stop working at a substantial level. If you became approved for benefits, you would receive your first Social Security check five full months after May. And although you don't have to be off of work for a year, what our Disability Determination Service is looking at, is whether or not your disabling conditions will continue to last for a year or more into the future.

As for insurance...well, that's kind of the yucky part of Social Security Disability. I swear, if I ever go to law school, I am going to Congress to get this changed! lol Anyway, there is a two year wait from your date of onset before you can get Medicare benefits through us. So again, if you quit working in May of this year, and we used that as your onset date, (as described above) then you would have to wait until May, 2008 to get Medicare. However, you can always talk to your state's Senior and Disabled Services office, (it may be called something else where you live, I could look into it if you want...) to see if you qualify for Medicaid. Based on your Social Security benefit, and/or your husband's income, you may qualify for medical assistance through the state. If that is not an option, you could always look into getting insurance through your husband's work, or through a private plan.

Another option would be to see if you could take medical leave from your job. You may be able to continue getting insurance benefits from them while you're on leave...even if you have to take leave without pay. You can also file for Social Security Disability benefits during this time. As long as you are not working, (or if you're grossing less than $860 per month from actual work) then we don't care if you're on disability or medical leave, or even if you're receiving disability pay from work. We do have another program called SSI, and we do look at other income for that program, but I don't think you would qualify for SSI anyway... Based on your work, and that you're only 25, I'm sure your SSD benefit would be too high for you to qualify...

Good luck with all of this... If you have any other questions, feel free to let me know. I know it's tough, and it can be scary, but your local office should be helpful with answering your questions or helping you with paperwork too. And if not, then I'm around! :)

Megan :)

05-15-2006, 02:52 PM
wow how quickly my thread with a simple question disappeared. it was only a few hours and it was gone. that has happened before but i thought it was just a mistake but i am not upset or angry just disappointed. i have had a rough time of this past winter up to now but won't bore you with details again. just a quick question i am thinking about disability since i have been diagnosed with more autoimmune disorders and can't work. just wondering if there is still a disability kit available in the icn shop? all i found was a book. thanks for just one answer.

05-15-2006, 06:09 PM
Thanks so much for your reply Supermegs. I PM'd you. I appretiate your help very much, and you did help alot! Thanks again.

05-16-2006, 06:28 AM
I'm sorry your thread was lost! As for your question, I don't know if the ICN store sells a disability kit. I'm not really sure what a disability kit is. I will look around for it, and if I see one for sale, I will let you know!

Aside from that, I know that Social Security gives out disability kits for free... But they might be a lot different than the ones the ICN sells. I have no idea...

I'll let you know if I find it!

Megan :)

05-16-2006, 08:22 AM
thanks megan. maybe i am wrong. by the way my younger sistes name is megan.

05-18-2006, 04:24 AM
is their a disability kit available in the icn shop or was it there before and not sold anymore or am i mistaken.

05-23-2006, 11:05 AM
I need some help. Im trying to apply for long term disability thru my company and then eventually Social security.

Im so beyond mad. I asked the NP at my urologists office to fill out the form, she said she would if i had the hydro/cysto done. WEll she passed this on to the office mgr. The office mgr said based on my age im not disabled ..hunny nothing in your chart says you are disabled lots have IC and are not disabled.

I fliped out on this woman told her i cant stand to cook, cant walk, cant drive etc. She said i dont have IC until the pathology comes back (my uro diagnosed me by the pics of the bladder last wed)

Any advice on how i can get my dr to fill out the forms and provide the documentations necessary. I dont understand why this office mgr gave me such trouble saying im not disabled.....i cried for hours after i hung up the phone.

Im only 30 and yes disabled and my life is over......its sad i agree but the truth.

05-24-2006, 09:52 AM
First let me say...Your life IS NOT OVER!! I understand the frustration you are feeling, but don't give up on the possiblity of regaining control of your well being. As for the office manager...just tell her that as soon as she walks in your shoes or becomes an MD who truly understands IC, she is not qualified to determine who is disabled or not! Or, just tell her to kiss off...which ever makes you feel better! :smile tee Then when you feel like taking the time to educate her, maybe print out Social Security's ruling on IC and take it to her. Maybe that would help her to be more compassionate in the future!
I'm in my early 30s and was just approved for Social Security based on IC. I have a whole bag of autoimmune crap, like most of us do, but was approved for "complications due to IC". So, yes, a person in their 30s with IC can be disabled!
I wouldn't wait on your Doctor to fill out paperwork before applying for disability. True, it would be better for your case if you had your Dr on your side, but you don't have to wait for him to agree to support you. It's going to take a long time to complete the process. My case took 4 years! So the sooner you begin the process, the better.
One other thing I would suggest is to visit a pain clinic, if you're not already. Not only would a pain clinc be more willing to help you w/ your disablility case, but you would also most likely benefit greatly from the care and knowledge that they provide when dealing w/ chronic diseases. Let's face it, most uros aren't really interested in treating IC that doesn't respond to traditional therapies. Don't give up!

05-24-2006, 09:56 AM
One more thing...
Talk with your Dr at your next appointment. Explain how this disease has impacted your life and why you can't work. Don't bother with the NP or Office Manager. Chances are, you'll get more help by going to the Dr directly.