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  • Afraid new doc may take me off SSD

    I was approved 2 years ago (we all know how hard it is to get approved in the first place). We move out of state and I see a new urologist who didn't seem happy that my last uro put me on SSD. This doctor shakes his head and states there are other things that could have been tried. We are also trying for a baby so that didn't help. I've struggled with this IC for 37 years. So much has been done. He prescribes me 2 muscle relaxants for PFD ... how the heck does this doc expect me to drive and work on 2 relaxants daily????

  • #2
    I am so sorry you are dealing with this. Don't even get me started on doctors. Most of them are truly useless, careless and arrogant creatures (rarely helpful). You have to keep looking until you find the good ones and they are out there (you just have to look harder to find them). Don't give all your power to this man. Why would you even return to this man let alone list him as a doctor you have seen on your disability questionnaire? You have the power at this point, not him. You need to take back your power now and see another urologist who is not in the same practice and act as if you have never even seen this useless jerk. Thats how I would play it. You go into the other urologist and tell him that you have a truly debilitating case of IC and are on disability. That your former urologist was very compassionate and even helped you with your case because he understood how bad it is for you and that now you are hoping to find someone just as helpful and compassionate (by saying something like this you are setting the bar high and making him jump to meet this expectation instead of the other way around). Do not even mention this other doctor to anyone. I would not even say goodbye to him. Just do not see him again.

    You keep going till you find someone who does understand. It may take you two or three tries but its worth it (and you may get lucky and be fine with the second one). Do not take this lying down and take back the power you have. If this man even tries to hurt your disability case, you let him know that you are contacting an attorney and that if he isn't careful he may find himself in a malpractice suit by trying to hurt your case because he has no understanding of how crippling this disease really is. You can give it right back to his sorry behind.

    Nothing has been hurt yet. If you have not reported him as a new doctor of yours to disability, nothing is lost. Simply restart again. Wipe him and your visit from your memory because he is obviously a nut who has not even an inkling of what he is talking about. Perhaps one day he will come down with something as crippling and painful as this and remember days like the ones he spent with people like you. One can only hope. Be your own advocate and never give your power away ever.
    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
      IC Princess... you are such an inspiration. Thank you.

      Comment


      • #4
        I say "DIDO" to what IP said. We are the ones that are paying for their service AND we have the power to choose someone competant that knows what it's like dealing with IC on a daily basis.

        I was just discussing the possiblity of changing uro's with my husband. It's not that I dislike the one I have, I love him. He is so compassionate when it comes to his patients. He is really gettting up in age, and the other day when I was there he looked so tired and I thought then, He should retire. I didn't say anything to him about it. Also, he's 2 hrs away and my husband usually has to take off work or I have to try and get someone else to take me. My daughter took me down Friday and the traffic was horrific inwhich it makes my tension sore and thus my pain. So, I though maybe it's time to just start "interviewing" someone closer. And I do mean interview. I'm a lot smarter now about my disease and I know now what I want in a uro. My uro now taught me a lot about what I want and need.

        So yes, when you do go to another one. Take in a list of questions for him. That's my plan. And if it's not a good fit? Check them off your list and move on until you get what you want and need in a uro.

        Hope this helps. Keep us posted.

        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
          I truly and genuinely hope it was inspirational to the point where you see who is actually in charge here and that's you (not him or any other doctor). I have been on disability since 2006 because of this disease. I was fortunate enough to have a urologist who not only understood the pain I am in, but wrote a letter on my behalf regarding my condition. Personally speaking if I were you, I would write a heartfelt letter to your old urologist now and ask him if he could take a moment and write a short letter on your behalf regarding your painful condition and mail it to YOU, so that any new urologist you might see out there, will understand that you've already tried what could be tried and all options have failed for you. That a letter of introduction from him could mean the world in establishing with a new urologist how painful and devastating this disease has been for you. I did that and made several copies of that letter. I bring it with me to any doctor I see that might be contacted by SSDI.

          I also asked my former GP to write a letter on my behalf before I moved out here to a new state (lord knows she saw me more than anyone with all the things I had going) and those letters are pure gold. I also bring with me a letter that was written by the ICA on my behalf when I filed for social security that explains just how debilitating this disease truly is (and its a "to whom it may concern" letter personalized with my name etc on it). I always hand a copy of all three letters to every new physician I see so that we can get past the nonsense right away. That I am not on disability because I thought it would be fun and help me lead a fancy free lifestyle. That I am in mind numbing pain that is hard to for anyone to truly understand until they've been there or have perhaps an ounce of foresight and compassion.

          If you can get your old Urologist to even write you that one letter, it could help a lot. Say what you have to say and do what you have to do to protect yourself because only you can do that.

          I make sure that any new physicians I meet understand that I was found to be disabled for a reason (that disability has a new ruling as of 2002 for people suffering from IC for a reason). That I have already jumped through all the necessary hoops. That I have already been under a microscope the size of a continent and that I am past that part of the disease now. I am no longer in the "prove it" mode anymore. That instills only cause me more pain because of the catheters and method of delivery involved (my urethra spasms for days and days on end no matter what they have tried). That I am allergic to Elimron (which I am). That I have tried every drug you can think of and that unfortunately my bladder lining is deteriorating leaving me more prone to pain and infection. That organ pain is the hardest to control. Very few drugs can reach it. You have to set it up before you go into a new urologist or they will eat you alive.

          See they think they are GODS and that's partly our fault for allowing them this delusion all these years. They make a declaration like they are GODS and for the most part we have allowed ourselves to be trampled uner their feet and scatter like frightened and helpless bunnies. I can't tell you all the times I have seen doctors who either misdiagnosed me or couldn't be bothered to realy help me because most doctors allow ten minutes tops to see a patient (they need to pay for all those vacations). If they can't figure out whats wrong with you in those ten minutes, then the internet becomes your doctor as it has for millions of Americans.

          I went to a Rheumatoid specialist who was an honest to goodness nut case not too long ago. I went because my oncologist (a doll) really wanted me to see someone about my fibro (I am a breast cancer survivor for now). After waiting for nearly two hours to see this obnoxious and pious creep, he proceeded to cut me off every time I tried to explain my condition and barely read the file I provided him (I Made all the copies and came prepared). He went on to say that I sure didn't look sick. He then proceeded to ask me how it was that I managed to get disability for IC. I literally clenched my fist and lowered my voice and had a few choice things to tell Mr. Obnoxious so I don't think he will be asking that question of someone again (I actually had marks from my nails pushing into my hands I was so friggin furious).

          I said you wanna know why? because I had compassionate physicians who understood how incredibly painful it is to have a bladder with a lining that is deteriorating and that would not even hold up (according to my current Oncologist) if I have to go through cancer treatment a second time. That I got disability because out of the thousands of horrific diseases that a person can get out there, only a handful are ones that make themselves known by way of physical appearance (my mother was a wonderful example looking gorgeous as ever three months before she was diagnosed with Acute Leukemia and given three weeks to live). She looked so beautiful that we just assumed she must be fine (looks are everything right). She sure didn't look sick!

          That just because a person is not in a wheelchair or coughing up phlegm is not indicative of how sick they are or what their conditions may be. I then told him that he had already wasted two hours of my time in his waiting room alone (and that was not counting the hour and a half that it took to drive there) and that I certainly did not want to waste another moment of his precious time and got up and left. Those types of doctors are never listed on my disability paperwork. If I am ever asked about them in the future which I doubt, I will honestly tell them that I thought the physician was a nut case and didn't think a doctor/patient relationship had been established as I had no plans to return.

          The icing on the cake with that one is that he proceeded to tell me that he thought IC was a component of Fibro anyway and all this while he was rifling through my extensive file. He then came across pictures of my bladder showing all the scars and bleeding and asked me what it was that he was looking at! I held back as best I could because I realized I was dealing with a complete buffoon. After I listened to him make all these comments about IC and the bladder, I answered him and told him that he was looking at pictures of my bladder under surgery. He then said Oh heck I wouldn't know a bladder from a hole in the wall! I can't make this stuff up folks. This is what the freakazoid said.

          Like I said before I go into a doctors office courteous and smiling and shaking hands and hope for the best, but expect the worst. I am leery of them and always will be. I take half of what most of them say with a huge grain of salt and do the research on my own. Its sad what the medical profession has come to, but never let them do that to you ever.

          How dare him shake his head and act like more could have been done (that's like you being raped and someone telling you that you should not have worn those clothes and could have done more to prevent it). You did all you could and then some! There are some diseases like cancer for instance that you can only do so much for and that's just the way things are. He's lucky he didn't get me. I may look cute and sweet, but I am a barracuda to jerks like him. I actually enjoy taking them down blow by blow because jerks like these deserve that and so much more.

          I don't know about anyone else, but I am sick to death of being held hostage by these idiots. Because I am on disability I also wonder will they hurt my case and so on when I have to see someone new. Its bad enough to battle this horrific disease, but we shouldn't have to continue to defend ourselves and battle the system as well. I look at it this way (have to). If they want to try and hurt my case which is based on honesty and what I am dealing with? Fine then I hurt them back and take them to court for causing me to lose my disability that was earned through pain, sweat and the support of my former doctors. Plain and simple. Its called fighting fire with fire.

          P.S. My new urologist here in PA is awful. Not only did he stretch my urethra when I told them I had decided against this and made that very clear before my hydro August 27th of this year, but not once have they even called to check up on me (and I let them know I was in terrible pain for three weeks after wards)! I wrote him a letter explaining what had transpired after my surgery and not once have they even bothered to call or anything! Nobody can believe it when I tell them this. What the heck!! My local GP had to step in and do everything for me. I actually wrote my old urologist who I adore back in Maryland and he called me (and he is an extremely busy urologist who didn't even perform the surgery)! He felt terrible for what I have been through and was shocked to hear of how I had been treated by this new office.

          Since we live out in the middle of nowhere now, we have made the decision to drive the three hours in each direction twice a year to keep him as my urologist and pay the co pays. Its disgusting and disappointing and so unnecessary (this is not how things should be). Good doctors are nearly impossible to find. I have to say that in my experience, I find most urologists to be odd ducks. Very hard to find one that can even begin to comprehend the complexities of IC and how it relates to us and the pain we are feeling. If anything, we seem to be the experts on this disease (not them and that's a bit scary).

          The last thing a patient wants is to be smarter than their doctor. Thank God I have a wonderful Oncologist and GP or I would lose my mind.
          Last edited by ICPrincess; 10-12-2009, 09:25 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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