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    Daisy Mae
    ICN Member

  • Daisy Mae
    replied
    Re: SS ruling on IC

    Originally posted by Samm3327 View Post
    Hi Daisy. If you could give me your information and I can let you know what my lawyer said and additional information about me.

    Thanks
    Shari
    Hi! My email address is [email protected].

    Leave a comment:

  • Samm3327
    ICN Member

  • Samm3327
    replied
    Re: SS ruling on IC

    Hi Daisy. If you could give me your information and I can let you know what my lawyer said and additional information about me.

    Thanks
    Shari

    Leave a comment:

  • Daisy Mae
    ICN Member

  • Daisy Mae
    replied
    Re: SS ruling on IC

    Samm, I just wanted to touch base with you because I went through that. I kept being told you can't apply for SSDI if you're still working.
    I was stubborn, thought I'd be able to go back to work so I didn't apply.
    I had 6 months short term disability, during which time I never applied for SS because I was "going back to work."
    Well, guess what? I couldn't. I learned a hard lesson. I should have applied from the get-go and be well into the application process while I was on short term disability. As it was, I waited too long, and had to go the full 2 years it took with no pay. If I'd have been smart about it, if have stayed off work and gone from short term disability long term disability and has income.
    I don't know your situation, dear one, but I know you've got to be scared. 😔
    If you have access to STD and LTD, maybe you can draw them consecutively while you're in the application process?
    If that's not possible, and you do end up having to go without okay during the waiting period, SS will give your back pay once your approved.
    It can be a difficult process, but it can be done. I never thought I'd make it through, but I did. If I can help you in any way, I'd be glad to. Please reply, and I'll get you my contact info.
    Sorry for any typos. I'm on my phone and autocorrect is not my friend. I just took a Foley out after a difficult flare and I'm not all here, lol.
    I do hope that the one thing you will do if use this time the doctor has you of work that you'll rest and take care of you!
    Daisy Mae

    Leave a comment:

  • Samm3327
    ICN Member

  • Samm3327
    replied
    Re: SS ruling on IC

    I'm the same way, over the last several months I have felt as if there was something wrong, I thought I had several UTI and been on so many antibiotics that never worked and was in pain that it has really made working hard to do. I have been in and out of my bosses office due to these minor screw ups that has piled up. The stress of the job and not feeling good just does not mix. I have an appt with a lawyer tomorrow to see about this. I've been off for over a month and doctor has me out until end of October for right now. He says has to see how the meds work. I don't know how to function with this pain and peeing all the time. I'm scared of getting fired because of this.

    Leave a comment:

  • Cbod77
    ICN Member

  • Cbod77
    replied
    Re: SS ruling on IC

    Donna I can't find the disability packet in the shop, does it still exist?

    Leave a comment:

  • dolph964
    ICN Member

  • dolph964
    replied
    Re: SSDI approved twice, no judge

    Thanks! I found it on SS website.

    Originally posted by ICNDonna View Post
    You should be able to get the forms from the Social Security Office if you can't find them on the internet.

    Donna

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Re: SSDI approved twice, no judge

    You should be able to get the forms from the Social Security Office if you can't find them on the internet.

    Donna

    Leave a comment:

  • dolph964
    ICN Member

  • dolph964
    replied
    Re: SSDI approved twice, no judge

    Thanks for all of this. I just got my 1st denial saying that I only have limitations but can work. So starting my appeal. I was wondering where do I get the functional reports to have Doctor's fill out?
    Originally posted by Taramc View Post
    Hi,

    I think my experience with SSDI has been a little different than most. I've been approved twice with no court or judges or any of that. I'll just do a re-cap here and maybe I can be helpful.

    I got IC from a hot tub infection in 2007, got fibromyalgia (or neuralgia) with it and by 2010 I had all the other symptoms of fatigue, dizziness, brain fog, migraines. The fog and fatigue were more disabling than the IC, as I was doing instills frequently and adjusting my diet. But the IC pain warrants narcotics about twice a week and Lyrica made me s.t.u.p.i.d.

    After being written up at work a couple times for memory and accuracy problems, I quit, sold my car, and filed for SSDI online. I have a history of PTSD and other psychiatric issues that included a couple hospitalizations in my 20's (I'm 44) I included all of that when I filed. Simply because the IC pain was making it worse.

    Then I saw a psychologist who did some IQ testing and included his 5-page report, which I sent to Disability Determination Services myself. And I sent in some notes from a previous therapist who diagnosed me with a Dissociative Disorder. The psychologist's report and those old notes seemed to confuse the issue. My first denial letter (after 6 months) stated I was denied due to "marijuana addiction" and "Borderline Personality Disorder." I admitted trying marijuana to the psychologist, and the disorder was only suggested in some old notes.

    Since I have neither - I smoke about twice a month (it flares, btw) and that disorder was ruled out, I got the idea they must just be BUSY. They probably just skimmed what was being sent in, looking for reasons to judge against me. It was really hard not to take it personally. Drug addict? And I've known people with that disorder... very selfish. Not applicable. But they are just in a hurry, obviously. And of course they don't care. Why should they?

    At this point I started soliciting letters from my doctors. They stepped up. My primary care doctor vouched for the decline in health. For my urologist, I printed out the SS rulings and highlighted what applied to me. She dictated a letter based on that. 10 months after I originally applied for SSDI, I got an approval letter and my benefits kicked in starting January of 2011. I got an easy part time job, got on with my life.

    Social Security then reviewed me in 2014. By then I had developed gastritis in my esophagus, lactose intolerance, and some IBS. I thought for sure they would continue my benefits. They sent me to their doctor and their psychiatrist. Then they reversed my benefits starting in 2015. The reversal letter said I had been approved for PTSD that was expected to improve. And that I could perform simple work. NO mention of the IC. Again.

    SO, I immediately filed an appeal, in person. I got the same lawyer I had before. Then I got busy seeing my doctors and letting them know what happened. My rheumatologist and psychiatrist were quick to fill out 'functional reports', which I hand delivered to the lawyer and Social Security. Then I got my urologist to write another letter. I had to remind her 3 times, but she did it. Remember the doctors are 'just busy', too. Nothing personal. I used the 'new SS ruling' as a reason to re-remind her. Once again I printed it out, highlighted what applies to me, wrote in the margins about what surgery was when, all that.

    Now 6 months since my reversal, Social Security has simply written me and said my benefits will be re-instated!! Along with like 3 pages of re-cap on the information they have.

    The denial letter mentioned a 'disability hearing officer' was the first step. Then my lawyer said they want to do an 'informal hearing.' These both sounded like something I would have to participate in. But I think what happened is they just kept getting doctors letters and functional reports so they had a hearing without me and made their decision.. maybe to avoid more work?

    Um so the point of this big long story? I guess BUG your doctors and BUG Social Security Disability Determination Services. Don't take their lack of interest personally. Get a lawyer. If you get approved, then later reviewed and sent to their doctors, let their doctors know how miserable your life is. I think I was too positive with the Social Security doctors.

    Definitely keep track of your symptoms and your medications. I bring in a list of symptoms and medications to every single doctor appointment. These get scanned into my records and seen by Social Security. Be nice and 'helpful' in your routine doctor appointments, even though everything seems hopeless and there's no way they could understand the symptoms. They are just people, too. Stressed out, easily distracted, and squeezing you between two prostrate surgeries.

    Okay now I'M rambling haha. I hope this helps.

    Leave a comment:

  • Taramc
    ICN Member

  • Taramc
    replied
    SSDI approved twice, no judge

    Hi,

    I think my experience with SSDI has been a little different than most. I've been approved twice with no court or judges or any of that. I'll just do a re-cap here and maybe I can be helpful.

    I got IC from a hot tub infection in 2007, got fibromyalgia (or neuralgia) with it and by 2010 I had all the other symptoms of fatigue, dizziness, brain fog, migraines. The fog and fatigue were more disabling than the IC, as I was doing instills frequently and adjusting my diet. But the IC pain warrants narcotics about twice a week and Lyrica made me s.t.u.p.i.d.

    After being written up at work a couple times for memory and accuracy problems, I quit, sold my car, and filed for SSDI online. I have a history of PTSD and other psychiatric issues that included a couple hospitalizations in my 20's (I'm 44) I included all of that when I filed. Simply because the IC pain was making it worse.

    Then I saw a psychologist who did some IQ testing and included his 5-page report, which I sent to Disability Determination Services myself. And I sent in some notes from a previous therapist who diagnosed me with a Dissociative Disorder. The psychologist's report and those old notes seemed to confuse the issue. My first denial letter (after 6 months) stated I was denied due to "marijuana addiction" and "Borderline Personality Disorder." I admitted trying marijuana to the psychologist, and the disorder was only suggested in some old notes.

    Since I have neither - I smoke about twice a month (it flares, btw) and that disorder was ruled out, I got the idea they must just be BUSY. They probably just skimmed what was being sent in, looking for reasons to judge against me. It was really hard not to take it personally. Drug addict? And I've known people with that disorder... very selfish. Not applicable. But they are just in a hurry, obviously. And of course they don't care. Why should they?

    At this point I started soliciting letters from my doctors. They stepped up. My primary care doctor vouched for the decline in health. For my urologist, I printed out the SS rulings and highlighted what applied to me. She dictated a letter based on that. 10 months after I originally applied for SSDI, I got an approval letter and my benefits kicked in starting January of 2011. I got an easy part time job, got on with my life.

    Social Security then reviewed me in 2014. By then I had developed gastritis in my esophagus, lactose intolerance, and some IBS. I thought for sure they would continue my benefits. They sent me to their doctor and their psychiatrist. Then they reversed my benefits starting in 2015. The reversal letter said I had been approved for PTSD that was expected to improve. And that I could perform simple work. NO mention of the IC. Again.

    SO, I immediately filed an appeal, in person. I got the same lawyer I had before. Then I got busy seeing my doctors and letting them know what happened. My rheumatologist and psychiatrist were quick to fill out 'functional reports', which I hand delivered to the lawyer and Social Security. Then I got my urologist to write another letter. I had to remind her 3 times, but she did it. Remember the doctors are 'just busy', too. Nothing personal. I used the 'new SS ruling' as a reason to re-remind her. Once again I printed it out, highlighted what applies to me, wrote in the margins about what surgery was when, all that.

    Now 6 months since my reversal, Social Security has simply written me and said my benefits will be re-instated!! Along with like 3 pages of re-cap on the information they have.

    The denial letter mentioned a 'disability hearing officer' was the first step. Then my lawyer said they want to do an 'informal hearing.' These both sounded like something I would have to participate in. But I think what happened is they just kept getting doctors letters and functional reports so they had a hearing without me and made their decision.. maybe to avoid more work?

    Um so the point of this big long story? I guess BUG your doctors and BUG Social Security Disability Determination Services. Don't take their lack of interest personally. Get a lawyer. If you get approved, then later reviewed and sent to their doctors, let their doctors know how miserable your life is. I think I was too positive with the Social Security doctors.

    Definitely keep track of your symptoms and your medications. I bring in a list of symptoms and medications to every single doctor appointment. These get scanned into my records and seen by Social Security. Be nice and 'helpful' in your routine doctor appointments, even though everything seems hopeless and there's no way they could understand the symptoms. They are just people, too. Stressed out, easily distracted, and squeezing you between two prostrate surgeries.

    Okay now I'M rambling haha. I hope this helps.
    Taramc
    ICN Member
    Last edited by Taramc; 05-25-2015, 05:36 AM. Reason: wrong title

    Leave a comment:

  • regina007
    ICN Member

  • regina007
    replied
    Re: Handicap Placard

    hello ruth! you are not a crybaby...your pain from IC and your other medical conditions are REAL and just because one cannot "see" the medical conditions like one would if you were using a wheelchair or had an amputation...something visible...does not mean you are not suffering greatly....for a permanent placard...I would talk to your local independent living center (ILC)...all counties in the US are required to offer services to people with disabilities at no charge...they can help advocate for you to get your placard....the Americans with Disabilities Act (ADA) defines a disability as "an individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment"...and having to use the restroom as much as IC makes us have to go...as you so eloquently stated above, makes doing regular daily activities almost impossible...and with IBS and Fibromyalgia.....the ADA is there to protect you from discrimination...with your rights to employment, education, state and local government, public accommodations, commercial facilities, transportation, and telecommunications...it is shocking but even though the ADA has been a federal and state law since 1992....people still have to fight for their rights...

    also, get your medical records together and lots of documentation from your medical providers regarding your medical conditions and how they affect your daily activities of living (ADL's) and your quality of life (QoL).....good luck and dont' give up you are not alone or a cry baby

    Leave a comment:

  • mary124
    ICN Member

  • mary124
    replied
    Re: SS ruling on IC

    After 35 years working with one disability or another IC, heart, back surgeries and now having pain in my feet retired and filing for disability. ( the pain in my feet is the reason that I am filing for disability ( can't stand or even sit with pain). Mailed my packet in about a week ago. I know it's going to be a long road ahead but in the end I think it will be worth it ( I went straight to a SS lawyer as I didn't want to go thru that messed of probably being denied-- helped both sister and a friend).

    Leave a comment:

  • Amy Sue
    ICN Member

  • Amy Sue
    replied
    Re: SS ruling on IC

    Hi
    I don't post on here very often but I have I.C. ,severe pelvic floor dysfunction, vulvadyna, OAB, and anxiety and depression. I was approved for Federal Disability and it only took 8 months. I just want to say don't give up and find a good lawyer. I was approved at my hearing it took a matter of 15 minutes. I also see Dr. Ken Peters at Beaumont Hospital who is incredible. I drive 3 hours to see him and to get physical therapy at the Womens Urological Center and Trigger point injections. If you have any questions I will gladly answer just inbox me! I am in no way in remission but I am taking it one breathe at a time.

    Leave a comment:

  • NishQuiche
    ICN Member

  • NishQuiche
    replied
    Re: SS ruling on IC

    Originally posted by Jaime123 View Post
    I am new to the site, but I have been fighting to get my disability case finished. I have been at it over 2 years. I finally got to the final step and went to court. I won my case. I still haven't seen a penny. But I did win!! I was about to give up. The reason they say it took so long was because they thought I was filing for anxiety and depression. It was a long hard road, but I did it. Now they owe me all the money from when I first applied. I got a free lawyer unless you win, then he gets his cut. Which I must say was well worth it. Don't give up hope. I live in savannah Georgia. If you want I can give you his name. He was so kind and compassionate. He did all the work, and researched the disease, I didn't need to get anything they did all the work for me. I hope this helps, SSA just added IC to the disability list. I was in misery and almost didn't want to live anymore, I couldn't keep a job, didn't know when I'd be sick, need installations, in bathroom every 15-30 min. Had surgeries a lot and missed work for that too, when I got pregnant with my 2 yr old I had a horrible time and my IC had never been that bad before. I also have tendinitis. But I finally won my case and unfortunately they won't have a hearing until you have had a certain number of declines.
    I hope this helps,
    Jaime
    Hi there, I'm almost wondering if this is what is happening with me....I applied with the condition that I have both IC and Endometriosis, but I also have anxiety and depression. They sent me to a therapist to confirm my condition, but never sent me to see a doctor to examine my physical conditions, which I thought was odd. I asked my doctor if they requested my paperwork from her as well, and she said she never heard anything from SSI...so Im thinking they are basing it solely off of me applying for anxiety/depression, though I CLEARLY stated OVER AND OVER that it was for IC, so they must not have bothered to read it correctly...but Im glad you pointed this out...Im hoping mine doesn't take that long...I applied at the beginning of May, and was denied beginning of August... I wasted no time in seeking a lawyer...and within about 3 weeks, am now working on my case...I am now moving forward on my case and am now needing to get some paperwork filled out by my doctors... Im keeping my fingers crossed and hoping it goes well.

    Leave a comment:

  • NishQuiche
    ICN Member

  • NishQuiche
    replied
    Re: SS ruling on IC

    Hi there,
    Im actually applying for SSI now. This is actually very helpful! I wound up being denied my first time...and rather than messing around, I got a lawyer to appeal my case. I emailed that link to him asking if it was helpful at all. I hope it helps. I find it very frustrating when I can sit here in pain for a week straight barely wanting to get out of bed from being in pain, and have SSI tell me that what I have "isn't considered disabling." Who are these people making these judgement calls anyways?! I bet none of them have HEARD of IC, nor have had to live with it, and they sure as hell woulnd't be making that call if they did! I have a friend who wound up getting SSI because one of his arms is slightly shorter than the other...yet, I was denied...Im very bitter about the whole situation at this point and slightly sad that they get to make these sort of judgement calls on people without even closely examining them...they didn't even send me to see a doctor....I sincerely hope that I, and all other of those who need it can get it, because I am struggling very much right now and truly need it! My life has essentially been put on hold by IC and its many flares and its causing me great depression...can't leave the house much anymore and struggle with the idea of work and school. I hope I can get help soon!

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Re: SS ruling on IC

    Originally posted by statesboro View Post
    I woke up from my nap feeling like a buffalo had been standing on my back and neck. OK. I went and used the bathroom as well. My mother came up with my letter from the SSA about my hearing. Anyhow, it stated that the decision was highly favorable. (disabled since November 29, 2010) OK. I have not read all of it, but the last couple of sentences on the last page do state that improvement can be made and that a review should be scheduled in 24 months. By the way, I don't feel improved any now. I happen to be using a neck massager with heat now. Yep.
    I think it's routine for anyone on Social Security under age 65 to have a status review every two years. I'm glad this is finally happening for you. You should have a pretty good back pay reimbursement soon.


    Donna

    Leave a comment:

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