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Thread: Losing faith in the medical community

  1. #1

    Angry Losing faith in the medical community

    I would like to say first off, that I truly respect and empathize with all of you. I'm a 27 year old, single mother of a 7 year old daughter, as well as 27 weeks pregnant with my 2nd baby girl. I have been battling autoimmune disorders ever since my daughter's birth in 2007. I have active rheumatoid/psoriatic arthritis, fibromyalgia, and degenerative disc disease. I have been through the ringer with these disorders and medical professionals( or unprofessionals), pretty much since the onset. I had a pretty decent R.A dr, but upon unexpectedly and somewhat miraculously becoming pregnant, he decided that he was too inexperienced with pain meds and pregnancy to proceed. I have been managed on opiate pain meds for years prior, so obviously my body had a chemical dependence on these things, but there had NEVER been and addiction, any aberrant behavior, and I always maintained a very open line of communication with my prescribing dr and surgeons, of which I've had almost 20 surgeries to correct joint degeneration, bone cysts, and repair tears in cartilage, all stemming from the destruction that this disease is causing. I have also been on every biologic, from oral, injections, and infusions. Unfortunately, I have been treated VERY poorly throughout this pregnancy. I have been placed on a medication called subutex, that basically does nothing for my pain and from everything I've read, really isn't meant to. This is what they give addicts and now I'm on it? Not to mention, the fact that I'm not benefiting from a medication that could cause my poor innocent baby to withdrawal after birth? I have been discharged by OB care because I refuse to participate in drug addiction therapy, why would you force someone who isn't a drug addict to do that? I've never failed a urine screen, I've never abused my meds, if anything I've always taken the bare minimum that would address my pain. I'm scared to death at this point. I have to locate an OB that is going to take me on at this stage in my pregnancy, let alone the fact that I will need to have my pain and disease managed after her birth and am scared that now I'm going to be labeled as something that I've never been. I mean, I am in college for psychology online and have been on the dean's list for 4 years, take care of my 7 year old completely on my own, and have never been in any sort of trouble with the law in my life. To be labeled as a drug addict has catastrophic repercussions on my life because I need to be treated adequately. It doesn't help that I have caresoure insurance through the state, but it's only because i haven't been able to work since 2011, due to the surgeries and the joint deformities that cause me great pain in daily tasks. I have obtained a lawyer because I feel like this is blatant medical malpractice or at least negligence. I'm running out of places to turn and getting nowhere. I live in ohio, near cleveland. If anyone could offer up and advice or suggestions, I'd really appreciate it!

  2. #2
    The hardest thing to come to terms with is there is really no hope. you will not get relief, you may find some things that help a little, to make it endurable. When my pain Doc hugged me looked me in the eye and said I am so sorry, you have full blown Central Pain and several other complications. CP...there is no cure but I will try, and never give up trying to help. Headed back into Beth Israel for a week for her to play guinea pig. Has some ne ideas. Not for CP but the chronic spasms and maybe help with the nociceptive pain from multiple broken back incidents and a broken neck. I take any little bit she can give and I am regressing rapidly. Been down the narcotics and many other routes with zero results except for a 17 month reduction in spasticity after 12 years. I'm old military 25 spinal procedures shattered a shoulder shattered a leg, there are folks here still worse. You are welcome here but there is no magic happy ending.

    There is no one to sue, you need to take control of your life as best able, understand where you are. FWIW I haven't been able to, so I don't suggest this lightly. what are your options?

    I am so sorry for your situation, I wish you peace.

    Kindly,

    Ket
    Last edited by ketamine kitty; 05-20-2014 at 05:25 PM. Reason: tipe like shit

  3. #3
    You might share your story with the local medical society in your area and ask them for assistance in finding a physician.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    There is no one at the Cleveland Clinic that will take you on even as a primary care physician? Are you taking any of the ATNF drugs for your rhuematoid and psoriatic athritis? If you can get rhuematology care but not OB I would head to Planned Parenthood. Yes, they love it when they get planned pregnancies. They may also know a bit about withdrawal for you and your baby. This is an important time for brain development and needs addressed quickly. Get moving and after your baby is born I would file charges against the doctor who dropped you into straight withdrawal from needed and prescribed pain meds. For now concentrate on any non-toxic pain modalities like heated pools and gentle exercise there, relaxation and meditation or distraction and anything else you've found that is helpful but less likely to hang in your body long. If ultraviolet light helps for the psoriatic that seems very baby safe. And remember most doctors at PP volunteer there but practice full time elsewhere. You might find one who will take you on or might know someone else who can. Good luck!
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #5
    a boatload better than my response, that why you're a supermoderator

    ket

  6. #6
    Super Moderator Sue Pendleton's Avatar
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    Ket, you know more about serious pain then I ever will. I am going on the assumption that since she knows she need only hang on until the baby is born that the less toxic pain control meds might help enough. You know how long it has been since you've been pain free and how likely that state will be in the future for you. When I had the bad pain early on I did respond after several unsuccessful drugs to methadone until the worst of my nerve pain faded mostly away. I know about the ATNF drugs because my husband suffers from another arthritis disease and I never saw any heavy pregnancy warnings on the injectors. Right now at months 6 through 8 is when withdrawal can effect the baby's intellectual and emotional/mental processes. PP is not a huge abortion mill. I was one of thousands who went to them in between insurance coverages as a student when I didn't have a PCP in a new town for strep throat and the flu. Men use them too and for more than STD testing and condoms. Years later a friend's daughter said she went to them for a virus too. She got all her vaccines including flu on her dime but when she got really sick she went there because the campus clinic was packed. This is why so many college grads support the organization.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  7. #7
    Super Moderator Sue Pendleton's Avatar
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    And you're sweet.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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