Thursday, February 28, 2013

Doctor Who? Doctor You!

This is Part Two of "Impatient," above.
It's not a stretch to assert that your body is YOUR wonderland.
     It's time we had a "patient liberation movement." Become your own #1 best doctor! Those who are well informed should be granted greater latitude in taking charge of their own health care. But even now, there is much you can do to avoid or minimize your entanglement in the bloated, exasperating, often pointless Dictatorship of the Medical Elite. You can save time and money, but more importantly, you won't feel so helpless, angry and confused, if you become the Boss of Your Own Body. It's exhilarating!

    To become your own Primary Care Physician, plunge into the World Wide Web of excellent, detailed, up-to-the-minute information on medical care. Any honest doctor will admit that he does exactly that when he is uncertain about how to address a patient's problems.
     The best place to start is with your symptoms, or with the part of your body that is causing you distress.
    More than 90 percent of Internet users specifically search for information on health and illness. More than a third are looking for a diagnosis, and nearly 40 percent of those people find information that enables them to take care of their condition without seeking medical attention.

     I don't take on faith the first opinion or treatment plan I come across, even if it's from the Mayo Clinic or Johns Hopkins. I look through lots of them, until I find some consistency.  After I've developed a tentative diagnosis, I  consult sites that offer "alternative" or "holistic" approaches, as well as conventional ones, before coming up with a strategy. Dr. Andrew Weil's site is one of my favorite holistic sources, but there are several I use regularly. Even the federal government has finally gotten into the act, with its National Center for Alternative and Complementary Medicine, and the Mayo Clinic site offers lifestyle and home remedies and alternative medicine, along with its conventional strategies. 
    For years, I avoided the health-related message boards, where ordinary people asked if "anyone else out there" has one problem or another. I thought, "Why pay any attention to the responses they get from other ordinary people when I can just go straight to a reputable, medically vetted source?"

    I was wrong to be so elitist. Although I still don't consult these sites very often, because you have to wade through a lot of extraneous dialogue,  I have found excellent exchanges of both solid information and mutual support on them.  A lot of the information is misguided or confused, but it's easy enough to disregard it. A lot of the questions are never credibly answered, but that happens when you go to a doctor as well. 
    Ultimately, the boards can be employed as a form of crowdsourcing: If enough people say "Try black currant oil," I may well try it.  When I first saw Vicks Vapo Rub recommended as a cure for fungal toenails, I thought it sounded ridiculous. Since then, I have come to believe that not only Vicks but also tea-tree oil, vinegar, Epsom salts and garlic oil can probably be effective, because so many people have had good results with them. I  believe in the intelligence and good faith of those who seed and provide suggestions on message boards.
    There are also many blogs that promote an alternative or complementary approach to wellness. Some are produced by hucksters trying to sell you overpriced pills and potions (just like the big pharmaceutical companies do), but they are easy enough to sort through. The good ones -- some by credentialed people, some not -- are a wonderful resource for those of us who wish to maintain or restore our health with diet and exercise, nutritional supplements and herbs, and by stress management, which might include massage, yoga, aromatherapy, meditation, mindful breathing, and hydrotherapy. These sites are produced with a wonderful sense of community and sharing. They truly do represent people trying to inspire others, and many do a beautiful job.

    When I am unable clearly to visualize a physiological process or an aspect of the body that is pertinent, I immerse myself in the fascinating world of medical imaging, drawings and animations. 
 Medical illustrations can be very helpful in understanding your pain.
Once you know your body, you can sense when you're using it as intended.

It's nice to see how it all fits together. Quite ingenious!
     I have gained tremendous admiration for the work of medical illustrators, who produce such beautiful, detailed pictures of our anatomy in all its wonder. By examining these artworks -- detailed portraits of the knee, shoulder or spine, for example -- I have been able to derive a tentative diagnosis of an injury, or to better understand a known diagnosis. I am also able to develop a visceral feeling about how that part of my body ought to function. I believe this helps me with visualization, as I try to rehabilitate my body. Visualization is a strategy that I have found to be helpful in many aspects of life.   
    Look at how great these illustrations are:

Sorry I tore you, but I fixed you myself, guided by YouTube.

So that's my meniscus. Sorry I tore you, too!

This captures tennis elbow perfectly. I healed it using a "flexbar" I read about.

Achilles tendinitis hurt like hell. Then I found a solution on a podiatry web site.

You are driving me crazy with pain, dude! The $3,000
 epidural didn't help, so I figured out my own therapy.

  Sinuses used to be such a mystery. (They still kind of are, but less so.)  
The more I know, the more I feel. It's awesome!
    UPDATE New York Times July 3, 2014: "A widely used method of treating a common cause of back and leg pain — epidural steroid injections for spinal stenosis — may provide little benefit for many patients, according to a new study that experts said should make doctors and patients think twice about the treatment. Hundreds of thousands of injections are given for stenosis each year in the United States, experts say, costing hundreds of millions of dollars.
    "But the study, the largest randomized trial evaluating the treatment, found that patients receiving a standard stenosis injection — which combine a steroid and a local anesthetic — had no less pain and virtually no greater function after six weeks than patients injected with anesthetic alone. The research, involving 400 patients at 16 sites, was published Wednesday in The New England Journal of Medicine."
    Then, via web sites or YouTube videos, I find instruction from physical therapists, certified fitness trainers, massage therapists and chiropractors on how to handle my own rehabilitation. I have also found very helpful advice from plain old people like me, who figured out what works and have chosen to share it with the rest of us. It is an incredible feeling to learn how to heal yourself, and then actually to do so. Thank you to the thousands of professionals and others who have given us their expertise online.
     I watch videos of functional magnetic resonance imaging (fMRIs) and surgeries to learn how the body works and how it is repaired. I watched a video of knee surgery before I had mine done. It's quite otherworldly in there.

Surgery of the knee before arthroscopy. Ick!

fMRI images show real-time changes in the brain.
Having heart surgery? You can watch it online first, but maybe you shouldn't!
        Using the Internet properly allows me to produce, direct and star in my own "Bodyworks" show. It is incredibly liberating.
I save a lot of time and money, but the greatest thing is that I am receiving a wonderful education. 

    If my research indicates that I need some blood work done, why can't I order it myself? I am tired of having to make an appointment to see a doctor before testing can be authorized. I am tired of having to call the doctor's office repeatedly to get my lab results. And I am appalled that when I do finally get my results, they are summarized for me on the phone by a "medical assistant" who almost never knows what she's talking about (It's not her fault -- she's poorly qualified -- "minimal on-the-job training" -- and poorly paid) (a competent person would cut into the doctor's profits)
    I have repeatedly been given inaccurate or absurdly incomplete information during these conversations. It's scandalous. One medical assistant told me that I had an adrenal tumor. I suffered with this diagnosis for a week before seeing the doctor and being told that this was completely  false.
     Most recently, I was told by an assistant that I had low-normal thyroid. That was all she mentioned. When I asked that the full report be mailed to me, it clearly flagged the fact that I had hemoglobin and blood-oxygen abrnomalities, an elevated liver enzyme that I had been informed in the past needed to be monitored, extremely elevated B12 and B6 levels, a doubling of my antichromatin antibody levels (related to lupus) and a CRP level that, if the reading is correct, puts me at high risk for stroke. NO ONE told me any of this. (I had the CRP redone, and it appears that the original reading was flawed. My CRP is very low, as it has historically been.)
    If we want anything to get done properly, we have to do it ourselves anyway. Why not make it a formal policy?

    One of my readers provided some excellent information for those of us who want to take greater charge of our health management. He referred me to, which allows you to request any bloodwork you want, without an order from a doctor. It sends you a requisition form, which you can take to one of several independent labs in your area. Your results will be emailed to you as soon as they are available. Isn't that great?
My bloodwork is MY bloodwork. Just let me have it!
    It wasn't that many years ago that my doctor himself called to review my lab results with me. I didn't realize at the time that I was experiencing "the good old days." He went through the lab tests one by one, explaining the implications of those that were "out of range." He asked if I had any questions. It was all very civilized.
    Since the Medical Monolith has gotten so rich, we can't afford these quaint niceties.
    I now insist that copies my lab reports be mailed to me. I keep them, along with imaging reports, etc., in  a file. It's very interesting, and it's helpful to be able to compare results over time. The lab's analytical terminology may look like gobbledegook initially, but you'll learn quickly what it all means.  

    You don't need any medical knowledge to make use of your reports. They ought to be headlined: Lab Results for Dummies. They don't just list your numbers; they also thoughtfully include the normal range for each test, and they clearly highlight any of your results that are of out of range. Results that can have serious implications often are accompanied by helpful explanations and suggestions. In any case, you can readily see, without any costly and time-consuming hand-holding, what needs further investigation. No doctor required!
     If you don't know what the abbreviations mean, the web site -- a peer-reviewed, noncommercial site -- will tell you, and it will also let you know the implications of either a high or low reading.  
    What about prescriptions? I want to write my own, except for controlled substances, and I feel particularly qualified to be objective about it, since I haven't been courted relentlessly by Big Pharma.
    (I hope my doctor enjoyed the trip to New York! And the honorarium for talking to his peers about a great new drug. I hope his staff enjoyed the catered lunch! And all of us love the free goodies the reps hand out! Darling notepads, ergonomically appropriate pens, with logo -- of course -- plastered everywhere)
    A New York Times article in early March documented how physician prescribing practices are dictated by their ties to Big Pharma. A former doctor of mine received $200,000 last year in "gratuities" from the drug companies. Surprise, surprise. It's costing Medicare billions, and patients billions more. Let's disentangle ourselves from this corrupt swamp and prescribe our own meds.
The more you read about your drugs, the more you'll want to find alternatives.
   UPDATE July 15, 2014: Oh great -- Big Pharma is getting even bigger -- and evading billions in U.S. taxes -- by buying smaller overseas competitors and reincorporating abroad — a maneuver called inversion. Medical device firms are doing the same. (
   There are several excellent web sites that detail the chemical makeup of every drug out there, providing its brand name as well as the various generic names that are used. These sites include straightforward information on how the drugs work (if they've figured it out -- often they haven't), approved uses, off-label uses, black-box warnings, side-effects (categorized by frequency and safety), interactions and symptoms of overdose. 
    I am already the one who is doing all this research before I agree to take a medication, and it's a good thing that somebody is watching out for my well-being. This is handled in an appallingly negligent way by doctors. I have saved myself from countless potential interactions, some of them serious, by doing the job my doctors are being very well paid to do.
     Before we had access to the World Wide Web, I experienced a lot of unnecessary suffering due to their dereliction. I endured a number of mysterious, disturbing maladies, and spent lots of time and money having tests to diagnose them (including an ultrasound of my heart, upper GI endoscopy and a brain scan), only to discover months or even years later that they were just side effects of medicine I had been prescribed. My doctor should have known. If he didn't he should have looked it up in his Physician's Desk Reference.

    It is also the doctor's responsibility to report drug side effects and device malfunctions to the Food and Drug Administration, but few take the time to do so, as I documented earlier. It's "too much paperwork."
     "There is no more wasteful entity in medicine than a rushed doctor." (
    Thank god, once again, for the Internet: A March 6, 2013 New York Times article revealed that by studying the online searches of millions of patients, scientists at Microsoft, Stanford and Columbia University have been able to detect evidence of unreported prescription drug side effects before they were discovered by the FDA's warning system.
    This is stunning proof that we, as patients -- using a sort of crowd-sourcing -- have left the health-care system in the dust and expanded the ways in which ordinary people have been sharing medical expertise online for years. And it is huge that patients are simply bypassing their grossly deficient doctors and the FDA, and instead relying on each other. 
    I have come across extensive discussions of interactions and side effects of antidepressants on the message boards. Many of the writers have been taking various medications for years, and are very wise about what to expect and what to watch out for. Their nuanced understanding of how these chemicals can make you feel has a depth and vividnesss that you'll never get from a doctor.
    It's yet another bit of dramatic evidence that we're in many ways on our own as patients. We are looking out for ourselves, and each other, because the health-care system isn't doing its job. 
    What about imaging? Don't I need doctors for that? 
    Scanning has become a multibillion-dollar business, and it's grossly overused, according to one study after another, inflicting unnecessary costs on patients and their insurers, as well as massive doses of radiation (by CT scans). It has become the "go-to" diagnostic method -- the favorite widget in the doctor's toolbox -- because it is so profitable. 
    I don't need a doctor to decide NOT to get a scan.
    If I decide I need a scan, I want to order it myself instead of wasting several hours and a few hundred dollars to see a doctor and get his authorization. 
    But unless it's an emergency, I will do my wait-and-see thing before considering a scan, trying simple, less-expensive approaches to address the likely problem, ie. a rotator-cuff tear, herniated disc or a sinus infection. Just read up on this stuff, and you can probably take care of it yourself. 
    If you can't obtain relief, you may well find that seeing doctors, getting scans, taking pills, going to one physical therapy appointment after another and being injected with steroids won't help either. You may find that you are going to have to live with some degree of chronic pain, as millions of people do -- including me. There are steps you can take to minimize it, but otherwise you just work around it, and be thankful that you don't have ALS or something like that.
My poor knee. It's been so good to me all these years.
    But what if I do need a scan to figure out what's wrong? Won't I need a doctor after I've had it done? Obviously, I'm not competent to "read" an X-ray, ultrasound, CT scan or MRI. 
    I don't need to be. Neither does your doctor. A radiologist, who is an MD, provides a full (and pricey) written report on what the screening reveals. Hundreds of dollars for a few moments' work.
    So after I get a scan done, I shouldn't need to make another  appointment with the doctor, get dressed, drive to a medical complex, waste 30 minutes in the waiting room and spend another $330 to have him read the report's conclusions to me. I can read them myself. If I don't know what to do next, I may decide to consult a doctor. I may not! Most of the time, scans discover nothing. Most of the rest of the time, they discover something that does not require a doctor's intervention.
You don't need to understand it. That's what the radiologist is for.
    I now routinely get a copy of the report from the imaging facility, and sometimes they send a disc or film as well. 
    After enduring extreme knee pain for several months, I finally submitted to an MRI. It indicated, the report informed me, "a medial tear in the meniscus." The meniscus is the cartilage formation inside your knee, behind the kneecap and between your thigh and shin bones. I used the Internet to learn how to rehabilitate a meniscus injury, but my pain remained substantial. I went to an orthopedic surgeon, who said (of course) that I needed surgery. So I had surgery. My knee is still a major problem for me.
    Surprise, surprise:  A March 2013 article in the New England Journal of Medicine reports that there were no significant differences in outcome after six and 12 months between patients assigned to arthroscopic partial meniscectomy with postoperative physical therapy, and patients assigned to a standardized physical-therapy regimen. In other words, the surgery is unnecessary, at least most of the time. Moreover, among those who do have the surgery, there are several possible complications, including an increased risk for needing  a complete knee replacement and an exacerbation of osteoarthritis. There was a subset who just did physical therapy, and weren't satisfied with the results. When they went on to have the surgery, their satisfaction did not improve.
    Whenever I break my vow to run like hell from doctors, I regret it.  
    Even getting the MRI probably wasn't necessary. I could have done exercises that are generally used to fortify the musculature that supports the knee. It might have helped if my doctor had performed a solid physical examination, which is how they diagnosed us in "the good old days." Touching patients is kind of icky, apparently. It's so much faster and easier to dispense with you by sending you straight to imaging. Plus: they get more money if they order imaging. And: Several doctors have confided to me that they just love those beautiful, detailed pictures of our insides. ("It never gets old," one doctor told me recently, as he gazed at my mother's lovely pelvic bone on the screen.) I love them too, but that's not a valid medical reason to undergo them. 
    Physical rehabilitation is yet another massive growth industry that has added billions of dollars to the nation's health care costs. Spa-like elements have been incorporated into the experience that keep patients from being totally bored and irritated, but when you see an itemized bill (which you very likely won't, unless you request one), you realize that every little nicety, every steamy towel or interlude on a traction couch, every five minutes with an electrode stimulator on your knee, every unnecessary ice pack or heating pad, every rehearsed spiel about how your joint works, every five-word assessment of your gait, every cheap, stretchy rehab band or foam roller they "give" you to take home, gets piled onto your bill
    Some people really do need the structure and guidance of professional rehabilitation, and I think that people who become physical therapists are unusually kind, supportive people who are highly motivated to help you. 
    But many, if not most, of us can readily figure out how to do it ourselves, saving thousands of dollars and dozens of trips to a clinic. Once again, YouTube and physical therapy/sports medicine sites provide excellent guidance to enable you in managing your own rehab. They are great!
You're very kind and totally cute, but I can lift my own knee!
     It's not uncommon for months of thrice-weekly sessions to be prescribed by your doctor. (Guess who owns the physical therapy practice. The surgeon who operated on your knee and referred you here! He owns the outpatient surgical center as well! See how this all works? It's diabolically ingenious!)
    Therapists bill for each session as if you were their sole focus for the entire 30 minutes or hour, when in fact they've got got several patients going at once, lying there doing leg lifts or knee bends, pelvic tilts or calf raises, that they could easily be doing at home, for free, courtesy of instructional rehab material online. That's my modus operandi, and it works very well.

    (An April 28, 2014, New York Times article highlights the money machine that physical therapy has become. "Physical therapy has become a Medicare gold mine. Medicare paid physical therapists working in offices $1.8 billion in 2012 alone, the 10th-highest field among 74 specialties." the article reports. "Unscrupulous practitioners bill Medicare for unnecessary treatments or procedures they never perform — something that is often easier to do in physical therapy than in fields like oncology or cardiology.
Whatever the case, as the nation’s population ages and increasingly gets knees, hips and other joints repaired or replaced, demand for physical therapy treatments has been on the rise — and so has fraud. Billing for physical therapy services has come under heightened scrutiny by regulators and law enforcement in recent years, leading to numerous crackdowns and raids of physical therapy clinics around the country." (
   I am a revenue stream. Whenever I can, I refuse to flow.


    To supplement my Rumble Roller regimen (see below), I use Beastie Balls, made by the same firm. I love them. I have been trying to massage my pectoral muscles, triceps, biceps, trapezius, deltoids, and the area around my knees for years, using my hands. It’s been frustrating, because the relatively minor arthritis in my hands makes this quite painful and tiring. The Beasties gave me an exhilarating feeling of “rightness” and relaxation after my weight workout. I was amazed at how effective they are at penetrating the muscles, even if I don’t apply a lot of pressure. They give you a sparkly feeling. Great before or after a workout or shower, or to treat a particular area of pain (lower spine, sacral area).

   Get a roller and keep your body feeling loose and supple without a masseur, physical therapist or chiropractor:

I think everyone would benefit from this one. It relaxes spinal muscles beautifully.


The Rumble Roller hurts so good! It tenderizes your meat!
This is a new-generation roller with a whole new range of benefits.

   Of all the many extraordinary benefits I’ve gotten from three months using the Rumble Roller (I graduated to the firmer black model) (which hurt so much it made me scream for weeks): It has “remade” my back – I am most astonished that it could relieve a serious condition that it can’t possibly correct (I don’t think): herniated discs with annular tears that leak inflammatory fluid continually. My pain is essentially gone. My renewed flexibility is a miracle. My neck, which has been arthritic for at least 20 years, has been restored nearly to full range of motion by using the roller to create both traction and deep massage. Now I can turn around and see who’s coming up behind me, those lusty bastards! The roller even relieves my sinus inflammation. That would seem weird, if I didn’t know quite a bit about chiropractic medicine and holism. Even so, it was totally unexpected. 
    The Rumble Roller has firm, inflexible protuberances that provide a mind-blowingly deep massage. Watch out -- it's addictive. But in a good way. I feel that it confers health benefits that have probably not even been documented yet.

     What will it do for me next? Cure me of my obsession with e-cigarettes? Reverse my suicidality? Purge me of my tendency to be profane and impertinent? Improve my willingness to tackle domestic chores? Incite me to be more politically active, instead of just sitting here, hating our government?
    Online information about rehab has been incredibly helpful to me. Experts from all over the country have created web sites that help you to diagnose your physical pain and then provide both written and illustrated directions for rehabilitating that joint, tendon or muscle yourself. The YouTube videos that educate you in proper function, stance and posture -- and then carefully demonstrate the elements of a rehab protocol (including common mistakes people make) are an invaluable resource. 
    As with my other medical use of the Internet, I don't just call up one site and assume it's authoritative. I look at several of them, and soon I am confident that the consensus I'm seeing reflects some real expertise.
    A couple of times, I did everything the online material recommended. It didn't work. My pain persisted. So I paid hundreds of dollars to see specialists. They didn't help either. I can't think of one instance in which Modern Medicine has helped me after I did everything I could to help myself.
    In my mind, this is a sweeping vindication of the Internet as a solid partner in personal health. It also reminds us, once again, that the medical establishment doesn't have all the answers. I don't think it has half of them!  I have learned to work around my various medical problems, as most people are forced to do as they age. Staying out of doctors' offices gives me a healthy glow.

    "If we are to control our own destinies, we have to switch our brains back on and come to our medical consultations with plenty of research done, able to use the relevant jargon. If we can’t do this ourselves we need to identify someone in our social or family network who can do so on our behalf.
Anxiety, stress and fear — emotions that are part and parcel of serious illness — can distort our choices. Stress makes us prone to tunnel vision, less likely to take in the information we need. Anxiety makes us more risk-averse than we would be regularly and more deferential.(