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HELP; proof of the problem here in Arkansas

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  • HELP; proof of the problem here in Arkansas

    This is from http://www.americanpaininstitute.org/letter6.html:


    PAIN PATIENTS ADVOCACY COALITION
    Tina Crenshaw, Chairwoman
    320 Benton Drive Salem, AR 72576 870-371-0611
    e-mail: [email protected]
    web site: www.AmericanPainInstitute.org



    AR Pain Patients Demand An Apology From AR Medical Board



    OCTOBER 12, 2010

    ARKANSAS STATE MEDICAL BOARD

    RE: TREATMENT OF CHRONIC PAIN PATIENTS


    DEAR PEGGY CRYOR:

    WE THE PAIN PATIENTS OF ARKANSAS DEMAND AN APOLOGY FROM THE MEDICAL BOARD IN WRITING AND PUBLICLY.

    THIS IS DUE TO THE DEGRADING STATEMENTS MADE BY THE CHAIRMAN OF THE BOARD MR. TRENT PIERCE AND SEVERAL OTHER BOARD MEMBERS. I QUOTE MR. PIERCE AS SAYING "WE HAVE TO TAKE HER PATIENTS OUT OF THE EQUATION, WE CAN’T LET THEM CLOUD UP OUR THINKING AND THERE IS NOTHING WE CAN DO FOR THEM ANYWAY."

    OTHER MEMBERS STATED THAT WE AS CHRONIC PAIN PATIENTS ARE EITHER DRUG ADDICTS OR ARE SELLING OUR MEDICATIONS. THEY DON’T KNOW ANY OF US, AND THEY SURE DIDN’T LISTEN TO THE FEW OF US WHO WERE THERE TRYING TO TELL THEM WHAT WAS GOING ON IN OUR LIVES. THAT WOULD HAVE BEEN A WONDERFUL TIME FOR THEM TO ASK QUESTIONS, TO GET TO KNOW US, BUT THEY ALREADY HAD THEIR MINDS MADE UP BEFORE WE EVEN SPOKE. IT SEEMS LIKE ACCORDING TO THE MEDICAL BOARD BECAUSE WE HAVE CHRONIC PAIN WE ARE SECOND CLASS CITIZENS.

    I DEMAND AN APOLOGY FOR THE CHRONIC PAIN PATIENTS WHO WERE TOLD THEY WERE NOTHING BUT DRUG ADDICTS OR DEALERS. THAT IS NOT FAIR OR ACCURATE.

    I WILL BE WAITING FOR AN ANSWER.

    THANK YOU,

    TINA CRENSHAW
    CHAIRPERSON: ARKANSAS PAIN PATIENTS ADVOCACY COALITION (APPAC)
    870-371-0611
    [email protected]

  • #2
    OMG, I have heard that AR is the worst place to suffer fromIC or ANY kind of chronic pain condition. That is SO demeaning. And I'm so sorry for anyone who has to deal with those kind of judgmental attitudes along with chronic pain. I would be very interested to find out if ever any reply to that request for an apology. I seriously doubt there will be if they've already closed their minds to such an extreme extent.
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

    Comment


    • #3
      Just curiously

      Are you in any position to travel for treatment. I know that traveling is hard to do. But suffering is inhumane.
      Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
      Lexapro-20 mg
      Aciphex
      Ambien-as needed
      Percocet-7.5 up to 3 per day as needed
      Valium-10 mg x2 per day
      Phenergan-1 at night
      Prelief w/everything
      Now recovering from acute pancreatitis

      Currents treatments that help somewhat:
      Heating pad
      Hot baths
      Ice
      Being VERY still while lying down with legs elevated

      Comment


      • #4
        I could travel; I really need help

        Thank you for reply. You could send me a PM or here on the board. There has to be a way somehow for me to get relief when I really, really, need it. I had done instills twice a day, had nerve blocks, nothing worked until I had a blood transfusion, which put it into remission for about a year, but it is back. I faithfully follow the IC diet, but I still have flares, about once every 2 or 3 weeks.

        Comment


        • #5
          We have the same problem where I live. I have to drive 5 hours round trip to find a pain clinic willing to treat chronic pain (like IC.)

          You may have to do the same thing. I think Memphis is about 130 miles or so from Little Rock. I know there are several members who live there and see pain Drs there and/or have Uros who r/x their pain meds. I know it stinks to drive that far once a month, but if things are as bad where you live as they are where I live, then you may have to do it too.

          As bad as it is for me to drive that far once a month, I look at it this way....it is better to have one miserable day a month than it is to be miserable all day, every day the whole rest of the month too! So, I just try to suck it up, and make the best of it that one day a month by buying a new CD to listen to on the way, calling friends from the car phone Bluetooth speakerphone to chat with on the way, taking a friend or family member along to keep me company, etc. It helps to break the monotony of driving, the boredom, and distract me from the pain of riding in a car that far. Ya gotta do what ya gotta do!

          Besides, if I find a closer Dr. willing to r/x them or a pain clinic opens up in my town who will treat chronic pain patients, I can always change Drs. Meanwhile, at least I have pain meds!

          Just something to consider!
          I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

          D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

          Meds: Estrogel (due to total Hyster)
          The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


          (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


          John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

          Comment


          • #6
            My health insurance is through an Arkansas-based company

            I don't mind traveling, but my health insurance in with Qual-Choice, an Arkansas based company. So that complicates things. I need to talk to them to see if they would pay anything, which I doubt. But if anyone knows of a pain specialist in Texarkana, TX or Memphis, Tenn. please PM.

            Comment


            • #7
              I will see what I can find although I live near Dallas. My PM is only treating my IC because I was patient of his before IC due to herniated discs in my neck. And he is the first to admit that his specialty is necks, backs and knees. So I'm not sure that he would take on another IC patient(I get the idea he's not nuts about treating me) But he does know about pain. I think with any pain management you're going to need an extensive referral from your treating physician. But if you would like I can PM you the name and number of my urogyno. He's the head of urogynocology at UT Southwestern Medical School. I can't give him a "glowing recommendation because we are still going thru all the testing phases. But I can tell you that since it's a teaching hospital, they are doing the newest latest treatments. BUT it takes a long time to get an appt. But he is very thorough And I felt as though he listened to me because he asked questions that would be appropriate if he were listening.

              Hopefully someone else closer to you will come on with more advice because Dallas is a LONG way from Little Rock. Also, he doesn't do pain management, as most uros don't.
              Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
              Lexapro-20 mg
              Aciphex
              Ambien-as needed
              Percocet-7.5 up to 3 per day as needed
              Valium-10 mg x2 per day
              Phenergan-1 at night
              Prelief w/everything
              Now recovering from acute pancreatitis

              Currents treatments that help somewhat:
              Heating pad
              Hot baths
              Ice
              Being VERY still while lying down with legs elevated

              Comment


              • #8
                One of the Administrators/Moderators of the ICN, SharonA, is from Memphis. You might try sending her a PM and asking her if she knows of a good Pain Clinic there. Also, ICLori used to live in Memphis, (if I am not mistaken.) You can also send her a PM. I know she knows of a great Uro there who seems to be willing to r/x pain meds. (I think she saw a female Uro that she loved. Possibly Ragi Dogwieller? But, send her a PM to find out for sure.) I know there are a few other members who are from that area. I cant think of their names right now, but hopefully one of them will chime in or PM you.

                Good luck! Hope your insurance will cover going out of state.
                I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

                D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

                Meds: Estrogel (due to total Hyster)
                The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


                (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


                John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

                Comment

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