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  • #280239
    L
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    Hi Lara,

    What you experienced is unfortunately normal in our health care system today, regardless of what type of insurance you have.  A health care advocate is what you need, and it can be really tough if you don’t have a friend or relative able to do that for you.  I am a health care advocate for my husband, 2 friends and myself!   So here’s how you handle being an advocate for  yourself:  First, write down a list of your questions.  Second, knowing that the doctor is scheduled for just a few minutes with you, you need to work hard on your list to get it down to 3, no more than 5 of the most important questions.  The questions need to be simple and direct.  It always takes me a couple of days to work on getting the final 3 or 5 questions figured out to be sure they don’t overlap and that I haven’t missed anything important.  Have the questions written on a piece of paper when you go in, and have a copy that you leave at home.   Then, tell your doctor that you have written questions and that you want them to help you understand the answers.  Give them the written questions and ask the doctor to answer the questions in a way that will become an official part of your medical record.  A few doctors will still write separate letters that they send to their patients that become part of their official medical file, but most doctors offices now have laptops where the doctor can talk and type type and then print out the record of the visit right then and there.  Your medical record legally belongs to you, so by presenting the questions in writing and requesting that the answers be made part of your medical record, you will always have access to the answers.  And you can read and understand the answers better when you get home after the visit, which may help you understand future questions that may arise.  If the office has a patient email system, that is another great way to get your carefully written, top priority questions answered in writing, ultimately establishing a strong dialog between you and the doctor.

    It can be so terribly stressful to go to the doctor to begin with, especially when you are riding the emotional rollercoaster fueled by fear and pain, but to be so very rushed through the visit in our health care system today makes it extra hard.  Don’t give up – get the information you need in writing!   L

    #271493
    L
    Participant

    Dear Lara,

    Anita’s response is absolutely spot-on about your inner critic.  But there is more to your situation than meets the eye —  I went through the exact same thought process as you did after my fall, and I have since learned a lot about how physical pain, even if not severe, can put fear in the driver’s seat.  After I fell, I got up and thought I was OK.  I pampered and rested and bought myself a brace for several months and then started gentle exercise to improve my strength.  I had nagging pain at times, but convinced myself that it would resolve.  And maybe it would have with enough time, but then I fell again.  With enough pain limiting my daily activities, I finally made an appointment with an orthopedic specialist who told me that I probably had age related issues in my knee that were not fixable and that I would have to modify my activities.  Which really means modify my life and who I am — quite a terrifying thought!  He offered me steroid shots to relieve the pain, which he then ridiculed me for refusing!  If I wasn’t willing to take the shot in my knee, I must not be in that much pain (obviously I am a hypochondriac).  But I was scared to start any treatment without knowing what was wrong.  I understand the emotional rollercoaster!

    At that moment, I finally realized that my fears, swinging wildly from fear of being a hypochondriac to fear of being permanently disabled by my own stupidity, prevented me from getting good information about my knee.  So I swallowed hard, worried I would piss off the doctor (who already thought I was a hypochondriac), and asked for an MRI.  When the MRI came back, that same doctor had to call me and tell me that I had blown my knee so badly that he wasn’t willing to do surgery!  It’s important to recognize that not all doctors are knee experts and not even all knee experts are going to get it right.  That uncertainty makes the process even more challenging, but in our complex health care system where doctors see a different patient every 20 minutes, you have to be your own health care advocate if you want to make decisions based on knowledge instead of fear.

    I had to face my fear of permanent disability (at least I was down to only one, more rational fear based on the MRI), and I was finally able to move forward by gathering a lot of information on surgical options and probable outcomes.  Ironically, the surgeon who did take my case reported that during surgery he found that part of the MRI interpretation was incorrect!  Uncertainty is guaranteed in this life, even with the best data, and every person’s decision will be different, but my decision to ask for that MRI was based on needing knowledge instead of fear.  Fear is always there, even now after my surgery, but I stopped letting it drive my decisions about my knee.   Take a deep breath, take a hard look at your fears, and try to move forward bravely with whatever path you choose to take in the New Year.  Hang in there!

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