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A journey into the world of medicine, as a first time patient with a life threatening condition, is frightening beyond comprehension. How you handle it and the ensuing black hole of medical jargon and actions, is critical.

If you think that there will be someone there to take care of things, don't fall prey to that illusion. You can't be sure and you can't count on those closest to you to not fall apart. So, where does the responsibility lie for taking the reins?

It lies with you, my friend. Whether you like it or not.

I am a native american with diabetes and while that's no surprise in this day and age, what does surprise me is the attitude of a large percentage of physicians who treat any diabetic with the same condescending and almost resentful attitude. There are very few physicians who look at the person anymore, with regards to patients as a whole.

In addition to diabetes, I have a hearing disability and a myriad of psychological issues related to the past 8 years of medical intrusion into my life and body. While I'm completely aware that it all could have been prevented with a better attitude towards my own disease and better care of my body, it didn't happen that way and what did occur gives me a very unique insight into the world of doctors and their gadgets and their administrative machines.

I have been hospitalized and operated on over 7 times in the last 8 years. I can't give you the exact count, as when I begin to sift through the memories my throat gets tight and I physically feel a lot of things I would like to forget.

The initial hospitalization ended up with a grotesque amount of flesh excised from my feet and removal of one toe. The next six months were spent with nurses coming into my home daily to change bandages and ask the same questions over and over.

I can't tell you how frightening it all was, and it was only the beginning, but through it all I've remained focused on one thing and that is to be informed and understand what they were doing to me and why. You cannot just lay there in that hospital bed and let them prod you, give you medications and not know why. If you do, then what happens to you is your own damned fault.

You as the patient, have the right to ask any question you have. You have the responsibility to take that information and make your decisions. You have the right to refuse or request different treatment options. You cannot leave it in the hands of physicians who are there simply to pay off their student loans, or to fund their next house renovation.

Am I being too harsh on the doctors in this country? You have your opinion and I have mine based on several years of dealing with my own medical traumas. I have found very few doctors who actually have that last spark of compassion and humanity. They are, unfortunately, jaded and apathetic for the most part. Just doing their jobs and if you're intelligent, ask questions and let them know that you are going to stand up for yourself, they often don't like it. It makes their job harder. But listen to me, my friends, it's your right and it's your body.

There are two things that doctors have the right to do and that is to diagnose, and recommend treatment options. Just because you are on their patient roster does not give them the right to bully you or lie for their own comfort or gain.

Sometimes it pays to think of the doctor's office as just what it is, a place of business, and just like any other business, they can be replaced with one that is more suited to your needs and personality.

Originally posted to One Thin Paradigm on Tue Dec 18, 2012 at 06:36 PM PST.

Also republished by KosAbility and Community Spotlight.

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Comment Preferences

  •  Tip Jar (30+ / 0-)

    You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

    by Kaos on Tue Dec 18, 2012 at 06:36:28 PM PST

  •  Darned straight. (14+ / 0-)

    Folks need to always remember that the best thing a patient can do is become an expert on their own conditions.  And while nurses are supposed to be patient advocates, the hierarchy of power in a hospital can leave them reluctant to buck doctors, and understaffing can leave them moving between patients too often to catch subtle changes, and stuck asking the same basic questions over and over.

    Not to mention that as you point out, hospitals are like every other business or organization and some have good personnel, some bad, and some a mix.

    •  Thank You (5+ / 0-)

      I appreciate you taking time to read and to sound out with your own thoughts. =)

      You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

      by Kaos on Wed Dec 19, 2012 at 12:03:48 AM PST

      [ Parent ]

      •  I'm lucky to have a good primary are doc (5+ / 0-)

        However, like you I am disabled and have seen a number od specialists over the years.  Some have been good, others mediocre and some were bullies who wouldn't listen to anything I had to say because they were so certain of their superior judgment that my input about my symptoms and health history was deemed by them to be superfluous (and I'm being generous to them with that categorization of their attitude).  They especially didn't like it when I pointed out that their diagnosis didn't account for all my symptoms.  Some doctors are, like many other people, assholes.  

        "If you tell the truth, you'll eventually be found out." Mark Twain

        by Steven D on Wed Dec 19, 2012 at 06:17:40 AM PST

        [ Parent ]

        •  Your experiences (5+ / 0-)

          sound eerily like my own, regarding doctors and their educationally driven superiority complex.

          In my last hospitalization, I had a foreign born doctor with his inherent attitude of female inferiority and an attitude towards me simply because he pre judged me and my knowledge of my condition. He argued with me and lost his professional cool, as did I and we ended up with mutual apologies and I believe I opened his eyes to the fact that simply because he is a doctor, instant respect and blind allegiance are not his automatically. Not when my life is the ante being put up for gambling purposes.

          You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

          by Kaos on Wed Dec 19, 2012 at 07:21:53 AM PST

          [ Parent ]

  •  Exactly. In the Global Economy of Hyperprofits, (7+ / 0-)

    corporations can't afford to pay their expert staff to spend time practicing that expertise. It's far too injurious to investors.

    Whether you're a clerk or a ditch digger or an accountant, you'll find that if you teach yourself to become an expert at whatever medical conditions ail you, draw up the correct diagnosis, work up the best treatment plan, and submit these to your nurse practitioner early during your 4 minute appointment, they're likely to forward your work to the physician and authorize your healing.

    It's really no different for any type of expertise. Expertise is paid by investors, and investors are never going to squander their hard earned profits on paying experts to waste the kind of time needed to put their skills to work.

    We are called to speak for the weak, for the voiceless, for victims of our nation and for those it calls enemy.... --ML King "Beyond Vietnam"

    by Gooserock on Tue Dec 18, 2012 at 07:12:35 PM PST

    •  Thank You (2+ / 0-)
      Recommended by:
      jessical, KelleyRN2

      You mention somewhat sarcastically, or so I took it, the 4 minute appointment.

      It's a reality unfortunately and the more you know about your body and what's wrong with it, in those four minutes you can capture your doctor's attention with intelligent questions and though it's difficult to challenge an authority figure, as we've been taught all our lives to respect them, your doctor will appreciate your interest in your treatment.

      It's a matter of building a relationship of trust and confidence and it goes both ways.

      You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

      by Kaos on Wed Dec 19, 2012 at 12:07:42 AM PST

      [ Parent ]

      •  Maintain a business-like relationship w/ primary (3+ / 0-)

        I find that keeping on an even keel with your primary care doctor is crucial. I go in with a written list, and we dispose of those items by what's needed - a referral, an X-ray, whatever. I try really hard not to waste their time, because the doctors are getting crunched by the insurance companies too - they don't like the "4-minute appointment" one bit either! But they are under a lot of pressure to line up six waiting rooms with patients, they go down the line bang-bang-bang and when they get to number six, the first five rooms are full with the next round...

        Unfortunately, if you go in with "I've got a funny pain here..." it gums them up, so if you can do some reading and research to narrow down the number of causes of THAT funny pain THERE - your doctor will love it! And do what he/she can to help. Everything goes through the primary care doc, so if you and that gatekeeper don't see eye-to-eye, the problems won't go away.

  •  A couple of comments from a physician (7+ / 0-)

    1) Fundamentally, you are correct about one of the glaring flaws of the American health care 'system'. It is procedurally oriented and profit-driven. Chronic illness is most efficiently and compassionately managed via a 'therapeutic alliance' with a primary care physician who knows you well and with whom you develop a good relationship. This gives far better outcomes than a rotating cast of sub-specialists each with financial incentives to perform procedures & order tests while spending as little time as possible with you.

    2) Diabetes in particular is not well served by our current non-system. It requires a lot of patient education, sustained attention to diet and lifestyle issues, and a lot of time-consuming attention to fine-grained details of medication/insulin dosing and multiple interacting treatments. It requires a lot of face to face time with a provider, rather than 5 minutes in the operating room. These are precisely the things that are reimbursed at very low rates nowadays.

    3) Many physicians do indeed get snotty about diabetics, because it's often a frustrating and tedious illness to treat, and compared to (say) 15 minutes in the cardiac cath lab to place a stent for $8,000 you get paid $87 for a 45 minute office visit managing it. Much of the management is based on education and behavior modification, which is notoriously difficult and can be very frustrating compared to simple technical procedures. Plus most physicians are basically affluent individuals who have absolutely no clue what it's like trying to eat healthy on a budget of $40 a week for food when you have no access to a decent grocery store or exercise facilities.

    4) It's enormously helpful to forge a bond with a provider (be it physician, nurse, nurse practitioner, diabetes educator, physician assistant), let them know you want to get better and want to work with them, and feel free to be assertive about what you need. If your provider is unresponsive, or rude, or just won't listen, find another one. Feel free to 'fire' your doctor if he's a jerk. But this road goes both ways. It's in your best interest to have a good working relationship with your provider. I really enjoy working with motivated patients who hit me with challenging questions. But being confrontational or irate won't get you better care. Providers are only human; give them a hard time and they will just go through the motions before moving on to the next patient as quickly as they can.

    •  Thank you (1+ / 0-)
      Recommended by:

      You make excellent points and yes, the most important thing you can do is research your condition and ask questions, as well as make the effort to take care of yourself and do what your physician recommends.

      I've got no problem with the four minute appointment, myself, as when I go in I know exactly why and what might be done. I'm informed and I know my body.

      I've got a problem with the health care system for all of the reasons stated in your comment and more. I've fought an uphill battle with many medical personnel and I've done it while seriously ill. I've tried very hard to not take things out on the people helping me, but when faced with pure ignorance and apathy, sometimes it's necessary to make noise to wake them up.

      I know that Diabetes is a disease with many side problems, one of which I will readily admit is Denial of Condition. This in itself makes it difficult to treat properly and it is, as I've written, the responsibility of patients to learn about their illness and to take action if the doctor you choose turns out to be one you'd rather not visit.

      You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

      by Kaos on Wed Dec 19, 2012 at 07:32:30 AM PST

      [ Parent ]

  •  I understand your feelings about doctors. (6+ / 0-)

    My grandmother hated doctors and hospitals.  She was unable to have kids after getting married and moving to the US due to ovarian cysts.  So she adopted.  Then about thirteen years later (1978), her cysts were then diagnosed as cancer, so they had to be removed.  I need to mention at this point that my grandmother was exclusively seen in military hospitals because her husband was in the air force (military police).  So she had a hysterectomy, and afterwards fell deathly ill with infection.  She was in the hospital, on her deathbed for nearly a year, as doctors came and went on her case saying all manner of things including that she was faking it or it was merely neurological (some even said it was her fault and yelled at her, as she laid in a bed so sick she couldn't lift her head).  Finally a doctor caught wind of her case, and after reading the notes knew exactly what the issue was.  He operated on her, and had to remove 8 feet of her small intestine because during her original surgery, it had been cut open by accident and nobody noticed.  When it was all said and done, her abdomen was covered in scars, and she survived, but that ordeal made her really start to hate the medical profession, especially because she felt she wasn't listened to.

    As she got older, she looked for a long time to find a family doctor who would respect her wishes.  She found one, and he was her doctor for twenty-some years until she passed away.  He would always tell her what her treatment options were, and if she chose to do nothing (which she did regarding COPD for many years before any of us in her family even KNEW she had it) then he was fine with that.  My older brother used to get really upset at the end of her life, when she refused treatment (even when hospital doctors would say "She's not as bad as other patients," and try to convince her to take treatment options she wasn't comfortable with) or chose to not as aggressively treat her illnesses as was possible.  I had to explain to him that she referred to doctors (in private) as "butchers," and that she knew just as well as us that her illness was terminal, and she didn't want to live out the rest of her life in discomfort and pain because of treatments they may extend her life, but not improve the QUALITY of her life.  She knew what SHE wanted, regardless of what the doctors around her wanted.

    So I get it.  And the big lesson I learned from her, and she repeatedly told me, was exactly as you are saying--be an advocate for yourself, ask questions, and don't just do what they tell you to.  Because they don't have your best interests at heart, but YOU do.

  •  Just a heartfelt thank you (2+ / 0-)
    Recommended by:
    KelleyRN2, worldlotus

    To everyone who has read, commented and/or recommended my diary today.

    It's been an honor to have one of my first contributions in the community spotlight.

    You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

    by Kaos on Wed Dec 19, 2012 at 12:15:12 PM PST

    •  Republished to KosAbility (0+ / 0-)

      Excellent diary and discussion, Kaos. I'm sorry I missed this last night - someone put your diary in our queue and I just now found and read it. Keep writing!

      "Do your little bit of good where you are; it is those little bits of good put together that overwhelm the world." ~ Desmond Tutu

      by KelleyRN2 on Wed Dec 19, 2012 at 04:44:26 PM PST

      [ Parent ]

      •  Thank you =) (1+ / 0-)
        Recommended by:

        You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

        by Kaos on Thu Dec 20, 2012 at 03:48:50 AM PST

        [ Parent ]

  •  You and Your Support Group (0+ / 0-)

    You are very right that you are your own advocate.  What is very important is today there is a group for any disease or problem you have.  Getting with them, probably online, is critical to your life.

    Living example.  In 1990 I went sick with something, the docs had no idea what.  I recovered a little and went back to work.  Shortly after that I was very sick again and the doctors still did not know with what.

    A few doctors came close but because I did not have the life style history for certain diseases those were not explored.  In 1993/4 a dermatologist going over my history and looking me over tried a skin test for a very rare disease.  It came back positive, not only for that disease but a rare form of it.  I started on medications to fight Mastocytosis.

    I found an online Mastocytosis group.  I learned much from them.  I am still on it because we share information and our lives.  

    However, that was not my main problem.  I kept getting sicker and sicker.  None of the docs had a clue as to my disease. Finally, I saw a few seconds on CNN regarding Hepatitis C.  I knew instantly that is what I had.  My docs were sure I did not.

    I joined an online group for HCV.  The docs were not helpful because I did not have the necessary history to get the thing - I did not do street injected drugs or have a tattoo.  That prejudice almost killed me.  

    The HCV support group taught me how to have the blood drawn and sent to one of the two labs that would perform the HCV tests.  Finally, I was on treatment for that killer disease.

    Besides myself, I had my online support groups to keep me informed and up to date on tests and treatments.  Along with people who know what is going on and will hold hands (online mostly) to get me through the roiugh times.  

    You need online, and local if possible, support groups.  If there are groups for one of the rarest diseases around, you can find a group that is just for you.

    I won't say much about doctors, I had a couple that were best not in the profession, and I had a dozen who were wonderful.  Going through the time I lost the Dr. Kildare myth about docs.  I learned to learn all I could about my diseases and prepare before talking to a doc.  You have to know yourself and defend yourself from a bad doc.

    Join one or two support groups.  They are for more than hand holding, they are where the knowledge is.

    Pam Bennett -6.95 -7.50

    by Pam Bennett on Sat Dec 22, 2012 at 03:07:49 AM PST

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