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  1. #1
    ICN Member icandme's Avatar
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    How Do You Stay On SSD?

    I have a question regarding Social Security Disability? Like so many IC patients, it took me 2 long years to get approved from Social Security. Started process in 2005 and approved in Oct. 2007. Im wondering if there is something I should be doing to make sure I continue to receive my benefits? For example, see my dr more often? I was having bladder tx's weekly but had little-no improvement and he's located 38 miles ea. way from my home so I stopped. I do see him every 6 months along with all my other drs (Fibro Dr, General Dr & Therapist). I was going to a Pain Clinic but since approved, Medicare wont cover the treatment. Since becoming disabled my husband of 20 years abandoned my 3 kids & I and is behind in support payments (loser) so Im concerned about doing whatever it takes to stay covered. If anybody has any suggestions it would be greatly appreciated. Thank you.

  2. #2
    ICN Member ICPrincess's Avatar
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    I'm in a similar situation. I've been on disability due to IC since 2006 with the paperwork stating that it runs through December 2009. I have been nervous as well since I have not even received a questionnaire yet. I spoke to my attorney and asked him about this. He said that sometimes they get backed up or may not even send it to me until December, but that they can't just take me off disability without being able to prove that I have improved (he made it clear that it's much harder to lose disability than it is to attain it). He said that even if they found me to be improved (which I am not), I could appeal it and that takes time and that they still cannot take me off of it until a decision is made from the appeal process. That gave me some relief, but not much. Its sad that we have to fight the disease and the system at the same time when all we are trying to do is just make it through each day. The last thing we should be worrying about is disability and what they may or may not do to us.

    I just saw Michael Moore's "Sicko" (excellent documentary) and shook my head in disbelief because it really hits home just how screwed up our country is when it comes to taking care of its sick and disabled. Nobody who is in this kind of daily pain should have to live in fear like this from their own government. I worked through breast cancer and the death of both my grandmother and mother in the same year. I have worked for nearly 35 years and paid into the system, so that God forbid I ever needed something like disability, it would be there for me. I'm sick and tired of being afraid of doctors and the power they may or may not wield at any given time.

    The best advice I can give you is this. I am like you in the sense that the urologist who was instrumental and helped me win my disability case, is almost three hours away from me in Maryland (I now live in PA). That's a 6 hour car trip and not fun for people with iC, however I made sure to see him at least once a year (you really should do this at least twice a year). I make sure to keep him in my corner and part of my case so that he will help support me again when the time comes. He's a very decent man and a wonderful doctor. He even wrote a letter on my behalf when I was going through all of this. That's the first thing you want is a champion. At least one of your doctors who will be there for you if and when disability comes a calling again.

    I wrote a letter to the appeals court when I was first denied and about to go to a hearing (I never had to because the judge didn't see the need after reading my letter and the supporting documentation). I explained more about the disease and how it has affected my daily life. I explained why I am not at the doctors office every couple of months. That my disease is an insidious and painful one that there are no real treatments for. That instills failed me, That Elmiron failed me (I am allergic). That Hydro's only cause me more pain. That everything we have tried has failed. That driving three hours in each direction every few months just so a doctor can smile weakly and refill my prescriptions was not always an option for me. That there is nothing more to be done but drug therapy to keep me as comfortable as possible. That they are welcome to my home at any time to see that I am not out partying and doing the town.

    When you explain why you do not see a doctor constantly due to the nature of your disease, that will at least help them to understand why you don't pop in every few months like you might do with other types of diseases or illnesses. Make sure that you explain how much pain you are in each time you visit with your doctor. You want it noted everywhere. I let every physician I see know that I am disabled due to chronic and debilitating Interstitial Cystitis. I always bring pictures of my bladder just to show them so that they can see that this is no garden variety case of IC (a picture can speak a thousand words and the looks on their faces when they see mine, makes those pictures worth their weight in gold).

    Cunning you might say, but the sad reality is that we need to be cunning and sharp (they are). If we aren't, they will trample us underfoot and deny and reject us in a heartbeat. We should not have to do this. We have a terrible disease that is widely misunderstood. We must be our own advocate. We are in pain and we are on disability for a reason. We should not have to continuously defend ourselves, but because we have to, look sharp my friend (and do not be afraid to ask your doctor if he or she will write a letter on your behalf explaining how debilitating IC is for you). You would be surprised at how many will do this for you if you make a passionate plea for their help. Both my GP and my urologist both wrote "To whom it may concern letters" for me.
    Last edited by ICPrincess; 10-25-2009 at 08:02 PM.

  3. #3
    ICN Member icandme's Avatar
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    Talking Thank you Thank you Thank you!

    :woohoo: Dear IC Princess, Thank you for responding so quickly to my question. Your letter was graciously thorough and much appreciated. Im so happy to hear that it is harded to take someone off Disability than it was getting approved, cuz that was a huge task! (Maybe I can get a good nights sleep with one less thing to worry about) My doctors have written letters of reccomendations in the past and Im sure they would do it again if needed. How do you know that you are up for review in December? Nothing in my paperwork mentions anything about a "review date". I was just assuming SSD would just pick a random date to check on me. Should I ask my Dr. if he has heard anything from SSD? Should I call SSD and ask when Im up for review or just sit tight? Again, thank you so much for your help!

  4. #4
    ICN Member ICPrincess's Avatar
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    I'm so glad it helped you. I know how it feels to be scared and not know what the heck is going to happen next in this situation.

    Usually they do not give you permanent disability, however they may have in your case if you have no date (in which case they still send questionnaires to ask if there has been any improvement). I would definitely pick up the phone tomorrow and place a call to your attorney. Tell them that you have a question regarding your case and want to know if you received permanent disability or what the run through date is. Most of us have a date (or at least that is what I found when I was researching things). The magic number seems to be three years which is what I got. That is because they are expecting that you might improve. There is no way to know unless you ask and I would definitely do that. I had not spoken to my attorney in almost three years but he was more than happy to look it up and answer a couple of questions for me.

    That's actually very good news that you already had letters from your doctor (that was probably the thing that really cinched it for you). They know that its hard to go up against doctors which is why they are so important to use with our cases. Again I hate the power they wield over us because they can just decide that IC is not that severe and can't imagine someone not being able to work from it. When I get one of those. I walk out and never return because they can only waste my time or harm my case and I never even list them.

    Stay strong!

  5. #5
    ICN Member Janie88's Avatar
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    Janie88;533613]Do you have to hire a lawyer in order to file for Disability? The rumor mill has told me that I will be fired this coming week at my review because of my absenses from work due to IC. My supervisor who is a nurse, said IC is nothing more than a bladder infection and I needed to toughen up, She said she has read about IC, and there is no way I should need to be away from the office during a flare. During my flares I usually go from 40 to 60 times a day. Even if am at work I can't stay in my chair long enough to work - so that is why I try to be out when I have a severe flare. And since am approching my mid fifties, lets be honest - who wants someone who will be out of the office as much as I am in office. I have recently been moved up to the drug MSIR, and kadian for oral meds, volteren gel, amtriptline(sp) cymbalta, trazodone I also take xanax as needed, and I do my instills in the morning and night. I am sorry for writing so much, I am surounded by people who says IC is nothing more than a UTI, but they have never been awaken 20 times a night and go to work feeling like I have not even been to bed yet.
    Today has been especially bad, and this site is so comforting to know I am not alone, and you all give me the strength to keep going ever day.

    One thing I forgot to mention, I have had an interstim implant back in November 2008 - What a waste of money.

    My son is back from Iraq, but still remember all of our men and women serving their country.
    Jan

    Diagnosis: IC, Lichen sclerosis, Vulvar vestibulitis (All diagnosed at the same time), IBS,Migraines, Fibromylagia, Asthma

    Meds: Nuycenta, Cymbalta, Nabumetone, Lyrica, Clonazepam, Alprazolam (for panic attacks only) I have an Inter-stim device implanted in my spine to help with the pain.

  6. #6
    Support Volunteer sailawaygrl's Avatar
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    Jan,
    Have you had your Dr fill out FMLA paper for you? If you have them do intermittant FMLA you can use your time anytime you need and they cannot question that or fire you for it. Even if you have to leave work due to IC, I would have FMLA papers first so you don't have the worry of being fired.

    Just a thought,
    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

  7. #7
    ICN Member Janie88's Avatar
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    I am on intermitten LOA now, and was told Thursday that the only keeping my job is that they cannot fire me while I am under the protection of the FMLA. It is so hard to be stuck in this - my bladder dictates where I go, where the next (Clean) bathroom is. As far as being fired this week, I think it is hard to believer before I was diagnosed, I had started working with this company 7 years ago, and during 7 years, I have earned an additional $7.00 dollars in raises - so I am a very good worker, a great assest the company, until I was diagnose with IC and began having to take time off, suddenly, that just dosn't
    Jan

    Diagnosis: IC, Lichen sclerosis, Vulvar vestibulitis (All diagnosed at the same time), IBS,Migraines, Fibromylagia, Asthma

    Meds: Nuycenta, Cymbalta, Nabumetone, Lyrica, Clonazepam, Alprazolam (for panic attacks only) I have an Inter-stim device implanted in my spine to help with the pain.

  8. #8
    ICN Member ucarpent's Avatar
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    things will work out

    what is flma paperwork? I pay for short term dis. at my work they say my IC may have been preexisting and I may not get disability because of it. What do you think?

    For you, take care of yourself my boss said that health comes first and i always give a doc. note for my weekly absents for rescues! but i dont get a doc note for flares unless i go to see the doctor! expensive.... but my immediate supervisor is disappointed in my absents and relates it to a poor work ethic - very sad

  9. #9
    ICN Member icandme's Avatar
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    Janie, I had to hire an attny due to several denials. Good news is you dont have to pay a dime unless you win your case and @ that time the attny's fee gets deducted from your pay and there is a max that an attny can charge. Regarding you losing your job... I was in the same boat & can sympathize. I supervised an ER Admit Dept for 16 yrs and was "laid off due to restructuring the department". Yeah right, at the time I know it was due to my IC. I missed several days, than I was put on FMLA than tried to come back part time. It was extremely difficult and could barely do part time! Regarding the FMLA there is a timeline that an employer does have to hold your position for you but it also does eventually have an experation date. Cant remember for sure, but mayber 18 mos? Dont let anyone tell you your pain in not real! They have no clue what it feels like & how dare they judge! Losing my job ended up not being the end of the world. It reassured myself in what Im physically capable to do & therefore I know for a fact I cannot work thanks to IC. So, hang in there girlfriend

  10. #10
    ICN Member DianeRN's Avatar
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    I was just denied social security for the second time. The disability company from my job is representing me to appeal. That way I won't end up paying money to a separate lawyer. If I get SS, the disability people automatically get half from the amount they've already paid. They state that most people get it after appearing before a judge. My question is, who do I submit my letter and my doctor letters to? Do I send them to my attorney? They also stated that because of my age (45) and previous occupation (RN), it's more difficult to get social security.

  11. #11
    ICN Member icandme's Avatar
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    DianeRN, Im confused because the "disability co" from your work that is representing you should be taking care of your letter & dr. notes and know what to do with it. If they dont... HIRE A LAWYER! As i wrote previously when hiring an attny there is a cap that they can collect, cant recall exact amount but think it was no more than $5,500. They cant even ask for a retainer fee. An attny cant receive a dime unless you win so they fight for you cuz they want their $ just as much as you want yours. As for myself, it took 2 yrs worth of denials & appeals so when i finally was approved i received a HUGE backpay amount so paying the attny was worth every penny. And social security paid my attorney directly out of my backpay. Also, hate to tell ya this but i did get denied by a judge. Than had to file an appeal. Shortly after that i moved to different city so i was assigned to a new judge (new county) to review my case & was approved My attny even traveled to the new city to represent me in front of the new judge. Surprisingly, that judge made a comment that he couldnt believe that I had been put through so many denials and should of been approved a long time ago... go figure! Im 45 now and was apprvd in 2007. I started the process in 2005. During those painful, stressful years I lost my home, my husband of 20 years due to an affair with his bestfriends wife and supported my 3 kids on nothing but credit & family support. Today, im more at peace with myself than i ever was and life is awesome!!! It was a long scarry road & in reading ICN website i just tried my best to keep positive & to keep fighting. So, didnt mean to sound like a debbie downer but want ya to know that it may be a long ride but please hang in there, stay positive, DO NOT GIVE UP!!!

  12. #12
    ICN Member pen2005pal's Avatar
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    DianeRN.... Wow. I would feel just as frustrated as you do about the part that because you were 45 and an RN? Good grief. I don't understand their logic and my heart goes out to you!! Hugs.

    ICPrincess.. that SICKO movie was a real eye opener. I now only see doctors who are from another country for that reason. I find they have more compassion. But yeah, it is HORRIBLE here in the USA.
    Sariah

    [SIZE="1"]I pee (a teaspoon and drops) on average 60 times per day (still). Pelvic Floor Dysfunction (urinary retention due to a botched urological surgery) and chronic pelvic pain 40 years.

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