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  • I may loose my disability. ACK!!!!

    Lord have Mercy!!! I may loose my disability shortly.

    They decided to do my review 3 years early. They want a full year of every doctors appointment and the kitchen sink - even though my doctor endorsed this permanently AND they want new endorsements. DANG!

    There is a good chance I may loose it, and if that happens, we could possibly loose the house and car along with it. There is no way I can work with living in the bathroom up to 40 times per day with interstitial cystitis and ulcerative colitis. Good grief. They ought to try my life sometime. I don't even get out much. I cannot even volunteer for things that I would like to do. I am also on TWO muscle relaxants per day for pelvic floor dysfunction... like okay.. like how am I supposed to drive?

    My regular doctor won't endorse me because she doesn't treat me for those conditions and wants my urologist to handle it. My uro is a new doc and is new to my condition, and she didn't not seem to agree with the old doctor who endorsed my SSD. (I had to wait a year to see her because it was a pre-existing condition before our insurance would cover it.) The old uro that endorsed me, is all the way in another state, and I can't afford to see her until January. Social security is giving me 2 weeks. That's it.

    I don't like my gastrologist who thinks my weekly episodes of diarrhea "are no big deal" and to just take immodium (which only puts a band-aid on it). I spoke to another gastrologist who had compassion for me and told me it will never go away, that I will always need to be on medication for it and that there is no cure for it. This practice I go to has many gastrologists and they won't let me switch to another doctor. I will have to go somewhere else but will be out of time. I hate all this red tape with doctors. Social Security is giving me two weeks. That's it. Anything they can do to get people off the system. I could always go back to another state to the original doctor who put me on SSD, but I can't get down there until January. Big mess. I may have to look into getting an attorney.

    So..... everything in our lives is at a halt and is up in the air at this moment. Whatever will be will be. It's out of our hands. God always gets us through somehow.

    Keep us in prayer please...

  • #2
    Pen,

    I'm at a loss here. My attorney explained to me that its much harder to take someone off disability than it is to get on. That they have to prove you are better and have improved. That this is the only way they can take you off is if they can show that you have actually improved. If you tell them that you have not improved and are actually worse or the same, they should not be able to just take you off like that! You are entitled to appeal any decision they make by the way and while that appeal process is going on, you will continue to receive benefits. What happened exactly?

    Did you fill out a questionnaire already and from that they told you they were going to take you off or have you only just now received the questionnaire and are just fearing the worst? What led to this because if you are still fighting this disease and still in pain, they would have to prove you are no longer in pain and if you have made statements to all your doctors that you are in fact in pain, legally they don't have a leg to stand on (although they may mess with people more who do not have an attorney's name behind them). Its not up to a new doctor to say you should have never been put on disability because we are past that you know. We won disability based on IC, so its a matter of proving that you have not improved (not that you should have never been put on it).

    This is why I refuse to include anyone that plays that way with me and doesn't understand how bad IC is. I simply do not return to them or list them on anything given to disability. If I do not return to them, I look at them as merely someone I consulted with and no relationship was established, so I do not even bother with jerks like these. I basically take my power back.

    I know its scary and frustrating. As I have said countless times, I am so sick of being held hostage to doctors and what they will or won't say that can harm our disability case. We are already fighting a horrific and painful disease. We should not have to fight the system too. My paperwork says that my disability runs through December 2009 and yet no questionniare or anything has even been sent to me yet. I'm already prepared to do battle when that day comes and I am guessing it will be very soon. Its a shame that we have to be put through this again and again and again.
    Medical Conditions:

    Severe IC
    IBS
    Vulvadynia
    Fibromyalgia
    GERD
    Polycystic Ovarian Disease
    Hypothyroidism
    Hashimoto's
    Epstein Barr
    Insulin Resistence
    Gout
    Breast Cancer survivor
    Monthly Vertigo (near periods)

    Current medications:

    Elavil 50mg
    Neurontin 300mg-600mgs per day
    Librax (lifesaver) as needed
    Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
    Hydroxyzine 25mg's
    Azo Cranberry 3 tablets per day
    Cipro as needed to keep UTI's at bay
    Xanax 1mg at night for sleep
    Levothyroxine 1.75 per day
    Prevacid 30mg's per day
    Zantac 150 mgs per day
    Mucinex 600mg's for Fibro
    Diflucan 150mg's after each period
    Goldenseal to keep UTI's at bay (it works)!
    Prelief as needed

    Comment


    • #3
      If you got your benefits with the help of an attorney, you might want to talk to that attorney for some assurance and to help with the forms.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

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      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        ICP,

        I was just curious about all that so I did get my approval letter out to see what it actually said and it "does" have a date that says I am "insured to Dec 31, 09" It hasn't been even 2 yrs since I was approved. I guess at the time I did receive my letter of approval it was just something I over looked. They also owe me money from the ins that they took out for Medicare that I did not want, they just told me almost 2 yrs ago to be patient and I'll get it soon!!

        I haven't received anything either from SS as far as a questionaire or anything. I'm going to call my attorney Monday to see what he says.

        Pen,

        don't give up. I know just how stressful living day to day with IC can be never mind the stress we have to indure from the system!!!! You're in my prayers!!

        hugs and blessings
        MARY


        Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

        Comment


        • #5
          Here's a few links that I found to be very informative and actually a bit soothing. They put things in perspective and offer a lot of hope regarding the review process. Hope this helps someone.

          http://www.hcvadvocate.org/hepatitis/hepC/CDRs_09.html

          http://disabilityblogger.blogspot.co...ty-review.html

          P.S. Mary I am in the same exact situation. My paperwork shows that my disability runs through December 2009 (although I was only given three years because they thought there might be a chance of improvement). I have yet to receive even a questionnaire, but the above links definitely shed more light on that situation. From everything i have read and been told by my attorney is this. They absolutely cannot terminate your benefits and stop sending checks without at least communicating with you and reviewing your case (and even then you can appeal the decision). I'm also very nervous, but bracing myself for a fight if need be.
          Medical Conditions:

          Severe IC
          IBS
          Vulvadynia
          Fibromyalgia
          GERD
          Polycystic Ovarian Disease
          Hypothyroidism
          Hashimoto's
          Epstein Barr
          Insulin Resistence
          Gout
          Breast Cancer survivor
          Monthly Vertigo (near periods)

          Current medications:

          Elavil 50mg
          Neurontin 300mg-600mgs per day
          Librax (lifesaver) as needed
          Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
          Hydroxyzine 25mg's
          Azo Cranberry 3 tablets per day
          Cipro as needed to keep UTI's at bay
          Xanax 1mg at night for sleep
          Levothyroxine 1.75 per day
          Prevacid 30mg's per day
          Zantac 150 mgs per day
          Mucinex 600mg's for Fibro
          Diflucan 150mg's after each period
          Goldenseal to keep UTI's at bay (it works)!
          Prelief as needed

          Comment


          • #6
            I just wanted to send my support!
            Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

            I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

            Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

            I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

            Comment


            • #7
              ICP,

              thank you, yes, it was very helping. The way mine read is that I was "insured to DEC 31,09" it kind of made it sound like I would be getting it up to then and my payments would stop.

              But the articles you sent put it all in to perspective for me. I guess we just have to wait and see what and when it happens and don't sweat it until then but still be prepared.

              Sending out positive vibes to you penpal and praying for the best!

              Hugs and blessings
              MARY


              Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

              Comment


              • #8
                Hi ICPRincess and everyone else :-)

                After being on SSD for 2 years, I got a letter from social security in the mail yesterday stating that they feel I am not disabled and able to work. This was because I had tried to apply for disability medicaid because I was not insured for the past year because Cigna labeled me as a "pre existing condition". Alot of other things are wrong with me too, and I was spending $300 a month and I needed financial help so that was why I applied for disability medicaid. Good grief.. can someone not even apply for help? So.. someone down the pipleline (maybe it was my PCP doctor?) obviously told them I was able to work. And all because of this, it sparked up this WHOLE new review!!

                ICPrincess you are correct about all that you questioned. That is why I am SO UPSET. I don't understand what gives them to right to do this to people. Maybe if I got an attorney, they would back off??? I wonder if they are trying to see what they can get away with?

                Theoretically, they should NOT be doing this to me but they are!!!! It was way more than a bubble questionare. They sent me a full 8 page review and they plan to contact EVERY doctor I have ever seen in the past 12 months - once again I am going through this BS.

                I called social security yesterday fuming. I was told that December could "possibly" be my last check, depending on what my doctor puts down. I don't know who the heck would hire me when I am in the bathroom every 20-30 minutes and on Norflex twice a day (that I am not supposed to be driving on). I was also told that they are now doing these full reviews and can choose to do them whenever they feel like - even once every year!! I guess this is something new??

                Hence, I have an appointment to get back to the state to see my original doctor who put me on SSD originally, but we can't get down there until Dec 2nd. Traveling 13 hours to see my original doc who put me on SSD is not something we can financially afford with Christmas coming, but we have no choice. In the meantime, I plan to file an appeal, but all of this has forced us to face some difficult decisions about moving, downsizing and things of that nature. My husband knows that there is NO WAY I can work with this. He is willing to downsize and stand by me in the event I loose it. This is not something we take lightly or want to do, and our first plan is to try to do everything possible to keep our kids stable. We have entertained the idea on moving back to the state where my doctor is at. Our mortgage company may work with us to get our mortgage lowered, but we won't know more about those options until mid-february. With our income tax we plan on paying all our credit cards and medical bills off (not something we had planned on either)- but we have to be proactive and prepare for the worst.

                Social Security never did this before. What the heck happened? It used to be every 5 years and a simple bubble questionare. But to my shock, I am now told they can now choose to do a full review as little as every year, even when one has an strong endorsement from a doctor. What gets me most upset, is that we would have never signed a 5 year car payment agreement if we had any idea that this was going to happen only six months later. None of this is good for those who truly suffer from a debilitating condition. Very upsetting.

                I will look into those links and try to be proactive about this. Thank you.

                I just looked up that questionare and they did send me the long form. (SSA-454-BK). My PCP is not cooperating with me and has already told them I am able to work when they investigated my case for medicaid, so I am may loose this.


                Much love -
                Last edited by Trei6y1952; 11-05-2009, 04:56 AM.

                Comment


                • #9
                  Mary - I forgot to mention that mine was to run out the same date .. Dec 31 of 09. When I called SS yesterday, they told me that they sent the forms to me early. I'm not sure if that means your and ICPrincess is on the way but I thought I'd let you know.

                  Comment


                  • #10
                    Penpal,

                    Why would your PCP turn around and say you were able to work now when he said before you were not?

                    I just don't know about our system? I just think that there are so many people trying to get SSD and they want to take the ones off of it that are not terminal?
                    I just don't know! It is all so upseting to say the least. Yes, I think my papers did say that they could review my case every yr? I'll have to get them out and see.

                    If anything, I'm worse now than ever. I wish that weren't the case though. I hoped and prayed that when I first started the whole SS process was that by the time everything came around that I would be back to work. However, that wasn't the case!!

                    I miss work so much!!

                    Hugs and blessings, I'll cont. to keep you in my prayers!
                    MARY


                    Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

                    Comment


                    • #11
                      God it seems this has been a bad week for everyone including myself. I just got back the test results of my bone scan yesterday and thank God I do not have a reoccurence of my breast cancer, but they did see some sort of inflammatory process in my brain (a little unsettling). I guess I will know more when I see the report but my oncologist is not pushing for an MRI, so I'm not sure what to think although I am just grateful that what they did see was not cancerous in nature (I do have to do an abdominal and pelvic CT in December though and not looking forward to that). Ironically it was my oncologist asking about my bladder. He seems to be more worried about my bladder than anyone else (I am lucky to have him because he really is a wonderful and compassionate doctor). I am definitely going to ask him for help with disability when they come a calling. I am also going to see my GP next Wednesday and going to ask them if they will be there for me when disability contacts them (Its awkward but must be done).

                      Pen, I literally felt like crying when I read your last post. This is outrageous and I am so sorry that you are having to fight the system again. I hope you know that they cannot stop your checks without going through an appeal process. Interesting how they left that part out because its the law. You have a right to appeal and usually only have a few days to do so (or a couple of weeks but I was told its not much time). I would send it certified with return receipt requested. Tell them that you are appealing the process and will be contacting an attorney. That's why I always think its best to contact your doctors in one way or another beforehand so they are ready and at least you know what they will or won't probably say. I was told firmly by my attorney some months back that its harder to get someone off of disability because they need to prove you are better and have improved.

                      Search your mind and try to think Pen. Have you mentioned anything to your PCP (by the way at the risk of sounding dumb, what is a PCP) or anyone else about feeling better? Did you say that something was working and you feel better to any of your doctors? The biggest question that comes to mind for me is this. Why are you not on Medicare? I was automatically put on when I received disability because I had been proven disabled for at least a year by the time they got around to my case. I could have turned it down of course but that would have been insanity. Why would you even need medicaid when you are supposed to receive medicare, which has been excellent for me by the way. (I use a Blue Cross supplemental also through Medicare and I get complete coverage or close to it). Are you on regular Social Security Disability?

                      Did you say anything on your Medicaid forms that could lead them to think you have improved? Do you have copies of what you sent (You should always keep copies of everything). They have to have some reason to do this (even though its deplorable and outrageous) because they can't just pronounce you cured like this on their own. I was a little nervous when you said what you said because if this is some new thing that Obama has implemented, we are all in trouble.

                      I think watching Michael Moore's award winning documentary "Sicko" was the most eye opening thing I have ever seen or read in my life. Every other country but ours takes care of their sick and they don't play mind games with them or try and leave them stranded, sick and alone. They actually want your pre-existing medical conditions not to trip you up like we do here but to offer you more help! I was stunned by that documentary. Here we are punished for being ill. I'm so sorry Pen. I wonder if Mary and I won't be out here with similar posts soon.

                      Make sure you appeal the decision!!!!!!

                      P.S. Pen one last thing if I may ask. How long were you given disability? It has to say on your papers. Most people get a review after three years, but you said they are doing a review three years early? Does that mean you were issued permanent disability or seven years? That sounds off to me. I know you mentioned you did not have an attorney and I know how confusing that paperwork can be without one. You might want to look over the material you were sent when you were given approval (more answers could be in there). See what they gave you because they have to tell you something there in that regards.

                      Try to hang in there until the appeal process is done. My prayers are going out to you.
                      Last edited by ICPrincess; 11-05-2009, 08:34 AM.
                      Medical Conditions:

                      Severe IC
                      IBS
                      Vulvadynia
                      Fibromyalgia
                      GERD
                      Polycystic Ovarian Disease
                      Hypothyroidism
                      Hashimoto's
                      Epstein Barr
                      Insulin Resistence
                      Gout
                      Breast Cancer survivor
                      Monthly Vertigo (near periods)

                      Current medications:

                      Elavil 50mg
                      Neurontin 300mg-600mgs per day
                      Librax (lifesaver) as needed
                      Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
                      Hydroxyzine 25mg's
                      Azo Cranberry 3 tablets per day
                      Cipro as needed to keep UTI's at bay
                      Xanax 1mg at night for sleep
                      Levothyroxine 1.75 per day
                      Prevacid 30mg's per day
                      Zantac 150 mgs per day
                      Mucinex 600mg's for Fibro
                      Diflucan 150mg's after each period
                      Goldenseal to keep UTI's at bay (it works)!
                      Prelief as needed

                      Comment


                      • #12
                        ICP,

                        Hooray for being cancer free. But a bummer about the possible lesion on your brain.

                        I have a tendency to fall alot and I get dizzy quite a bit. So, a few yrs back my (PCP) Primary Care Physican sent me for an MRI and it also showed lesions on my brain that could be possible MS. I went to a neuro at that time and she basically told me that even if I did have MS that she didn't see me in a wheel chair anytime soon. At that time I was in the process of having my bladder removed and she told me I had enough to worry about.

                        I know it's something I need to get checked but it's one of those things that right now with everything else going on health wise. I just forget to ask my new DO about.

                        But also I wanted to add that during my SSD hearing the uro that was present via phone, put in my report that he thought I had a neurogenic bladder consistant with MS. So, I don't know!

                        I'll keep you posted if I get my questionaire.

                        hugs and blessings.
                        MARY


                        Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

                        Comment


                        • #13
                          Thank you Mary.

                          I was actually really scared to be honest. I thought it was back because they saw a spot on my PET scan that glowed on my spine. I thought God not again. I was so happy to hear that it had not spread to my bones, however I still don't have an answer as to what they saw in my head. Its odd that you mentioned MS. I told my husband not that long ago that I seem to have some characteristics of MS. God I hope that's not what it is. I had an MRI of the head some time back and they saw an enlargement of my left temporal muscle, but nothing else of concern however I refused to use that contrast (not sure I made the right decision in retrospect as apparently much can be missed without contrast particularly MS lesions). Thank you so much for explaining what a PCP was! I've always heard the term GP which is what I use (general practitioner). It was driving me nuts trying to figure out what that meant...lol. Thank you!

                          I'm like you. There is only so much I can handle at one time so I let other things go. IC can monopolize your time, energy and anything in between.

                          You know I have been so curious about how this happened to Pen and forgot that she started that other thread about the doctor getting her taken off disability (I actually responded in there and forgot Pen was the author). I went in to have a look again and I am beginning to connect the dots here. Two things may have triggered this. One is that she moved out of state and that may have triggered them to notice her a bit more, but even more interesting is that she said her new doctor shook his head when he heard she was on disability and said that other things could have been tried (obviously a clueless jerk who has no idea how debilitating this disease really is). Bingo. If they have been in touch with him in any way and have his name, that's most likely what triggered this. He basically out and out told her that she should not be on disability.

                          I also saw another red flag from your other thread Pen. You are actively trying to have a baby and told this new doctor that. God bless you for that however they are probably thinking if she is in that much pelvic pain, how is she having sex regularly and trying to have a child. Its not fair that this should enter into it, but I have a feeling that's part of this. Its how they think and if any of this got back to SSDI in any form, this could explain a lot.

                          Pen, when you check back in, did you list him on a questionnaire? is there any way that they could know that you have seen him or have his name? If so, there's your answer. I think this whole situation reeks. Its so unfair that we are in this kind of unrelenting pain and yet we have to live in constant fear of them trying to get us off disability. So they take us off disability and make us homeless. Beautiful isn't it. For people like us its not "are we truly disabled" its will we also be homeless as well and not given disability because either way we can't work. We won't have a miraculous recovery if they take us off and deny us. We will simply add another more dangerous problem to our growing list and now be either destitute or homeless and only they can make that happen. I can see why so many have had to move to Britain, Canada or France to get out of this system when they are ill.
                          Last edited by ICPrincess; 11-05-2009, 12:06 PM.
                          Medical Conditions:

                          Severe IC
                          IBS
                          Vulvadynia
                          Fibromyalgia
                          GERD
                          Polycystic Ovarian Disease
                          Hypothyroidism
                          Hashimoto's
                          Epstein Barr
                          Insulin Resistence
                          Gout
                          Breast Cancer survivor
                          Monthly Vertigo (near periods)

                          Current medications:

                          Elavil 50mg
                          Neurontin 300mg-600mgs per day
                          Librax (lifesaver) as needed
                          Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
                          Hydroxyzine 25mg's
                          Azo Cranberry 3 tablets per day
                          Cipro as needed to keep UTI's at bay
                          Xanax 1mg at night for sleep
                          Levothyroxine 1.75 per day
                          Prevacid 30mg's per day
                          Zantac 150 mgs per day
                          Mucinex 600mg's for Fibro
                          Diflucan 150mg's after each period
                          Goldenseal to keep UTI's at bay (it works)!
                          Prelief as needed

                          Comment

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