As I read the emails from many readers who are going through a bit of craziness called health care, the pattern of testing is emerging. Women are given standard blood tests, then thyroid panels then hormone panels. Men are given standard blood tests, then drug screening and then metals, then hormone panels, then thyroid panels. Very few people are getting these tests done at ONE time and many are returning to doctors repeatedly, hoping for an answer, only to be given one more round of blood or urine examinations. Most of these tests aren't being done properly, and it's not the labs making the error.
Every test ordered needs to be consistent and it needs to include at a minimum, infection testing, metals testing, hormone testing, and thyroid testing. Each test needs to also have a tracking of urine, which should have proteins as well as blood levels included. The tests need to be the same AT ALL TIMES so that those which show variances have a level that is PATIENT specific, not just "normal" as noted by ranges determined by the National Institute of Health.
A patient needs to discover patterns of response to be properly diagnosed. Each female patient still in menses, needs to be tested cyclically. Iron levels on a luteal phase will be different than iron levels during ovulation. Women with perimenopausal symptoms whilst still in their twenties should be given the same tests as those who are in perimenopausal conditions during their forties. This either confirms or dispels the idea that she is having early onset menopause. Body temperature needs to be taken daily for a minimum of six months to determine ovulation patterns, pituitary and thyroid regulation, and even eating disorders and malnutrition.
Patterns determined when a patient is in the best possible health will rule out the issues found when in ill health. Normal for Mary may be a 98.1 degree temperature, a body weight of 136 lbs, and a blood pressure of 101/65, with a resting pulse of 62. Whereas, normal for Joseph may be 98.9 degrees, 176 lbs, 120/50, and 72 for a pulse. If Mary is at the clinic with a 98.9 temperature, there may be a serious infection going on, and if Joseph has a 98.1, he may be anemic. Both would be dismissed by most clinics. The problem lies in the misinformation of the tests themselves. No one can expect normal for one to be normal for another; not doctors, not patients, and NOT the NIH which determines "normals" on blood work. Testing needs to be consistent, and it needs to be at a level that is PATIENT specific, not "general population" specific.
Most of us aren't fond of visiting a lab, getting blood drawn and waiting for some unknown physician to determine our results. However, most of us aren't aware that we can request the results of our tests, and should keep track of them. Free services, such as Google Health, allow patients to monitor their testing by filling out simple forms that include test results, exam results, hospital visits, and medications taken. The Veterans Administration allows patients in their system to use MyHealthEVet, which keeps track of the doctor input information as well as the patient's own tracking. Know your own "normal" and it will help a doctor determine a prognosis if you are ill.
In recent years labs are now accepting requests from private citizens, who aren't handing in Physician signed requests. People can monitor their own metals, thyroid panels, metabolic levels, and hormone panels. The tests are costly, but can save thousands of dollars in medical bills. A $300 blood exam every four months, when in good health, can give you and your doctor a better sense of your wellness. And, it can monitor if you have levels of cortisol, estrogen, or even copper which seem out of whack.
Blame the legal system. Doctors are now almost completely reliant on testing rather than listening to patients relay symptoms. The world is peppered with the Malpractice Lawyers just waiting for the chance to debunk a doctor's credibility. The tests are supposed to keep a Doctor from misdiagnosing a patient. In fact, most tests results, designed through the averaging of the general populous, miss illnesses that show up later in tests, long after early detection and healing would happen. HMOs, PPOs, and even national health care systems such as the Veterans' Health in the US, or Canadian Health Care, are the primary promoters of this thought process because class action lawsuits, and lawyers who thrive on mistakes. In fact, millions of people are dead, or close to it, because SYMPTOMS are being avoided.
The best ammunition against a lawyers' designed health care program is to arm yourself with tests from reputable labs. Knowing your health patterns, hormone patterns, thyroid patterns, and keeping records of this information is going to help your doctors. It's going to help you. It's going to save money. And, it's the only protection we have against a failing health system. But, what if you haven't had a pattern of good health in some time? What are your options?
Keep testing. If you are under a doctor's care ask her to run full blood tests EVERY time you are scheduled for an appointment. Even if you are battling a genetic disorder, a chronic disease, a chemical disorder, or reactions to medication, you can start to see patterns. Does your migraine increase during menstrual cycle? Does cutting out fats or eggs from your diet affect your platelets or protein levels? Do you find that your pain increases in the morning, or in the evening? Make notes of ALL your patterns. Patterns are as truthful as blood tests because they help determine what is NORMAL for YOU. Make sure you get the SAME tests each time so you can see consistent levels. Take the tests at the exact same time of day, so you can see if the levels are related to your sleep, level of activity, or even diet.
Today's questions: Do you feel your doctors are missing key blood tests that need to be included when you are at the lab? What do you feel is the biggest mistake in the testing process? Are there times you feel more "normal" than others? Do you find that you are compared to other people, rather than to your own level of "normal?"
Thirty years of misdiagnoses, bad doctors, and medications led me to the thousands of people who are of the same mindset- Our doctors are killing us. Let's find out what we can do for patient advocacy, and help educate and be pro-active patients.
Monday, February 16, 2009
Monday, February 9, 2009
Doctors Who Research
I searched for a new doctor when my insurance company dropped my current doctor's practice from their plan. The new insurance is supposed to be less expensive in the long run but I have far fewer choices for physicians. The first doctor I considered was put into a drug treatment program, and had his license stripped away. The second doctor had been through an indictment, and lost his license. The third was listed as a marathon runner, and that was my green flag that this person may know a little bit about joint conditions and the way bone disorders operate.
I wasn't exactly charmed by our first encounter. The office is decidedly efficient, with little room for warmth. There isn't any banter between staff and doctors. The place isn't peppered with sales items, and the sales person who bothered to show up when I was there was quickly shuttled away. That was a selling point, though. I was shuffled into an office, and then a few moments later, was bombarded with short, sharp questions from a woman who didn't bother introducing herself. I assumed she was the doctor as her lab coat had imprinted names, but I still have no idea if she knows I hadn't even seen her for less than five minutes before she stomped out again.
This is the first doctor's office I had been to in quite some time where I wasn't handed a bunch of sales items, or viewed notepads from drug companies. There was no indication that there was a single drug pushed here. The doctor looked at my forms, said, "I don't administer THOSE medications" when she came upon the morphine, and then proceeded to ask ten or so questions that didn't really tell me anything about her except she was business, and nothing but.
But, after about 15 more minutes, she returned and asked even more questions. She had read up on Ehlers-Danlos syndrome, and wanted to know about my previous treatments. She had researched my issues specifically. Everything was done as if I was in an interview for a high power managerial job. But then she said the one thing I hadn't heard in about eight years. "You've been given a lot of medication that is contraindicative, and I think we need to start from scratch."
I started to explain that every doctor I had since since 2002 has done nothing but hand me pills for side effects of other medications. I've gained 58 lbs in total, and I am feeling miserable about not being heard by anyone, including her. I saw her reaching for a document. She said, "we need to get you the right tests to find out the right diagnosis." And, left it at that.
The next ten minutes, I waited for her assistant to hand me a lab sheet. I saw tests that I have been requesting for YEARS suddenly become the first line of offense for this doctor. She has been doing research on my condition before the first visit. In fact, her partner helped the assistant by saying, "She has Ehlers-Danlos Syndrome, you'll need to look under 'syndrome' for the coding". Her partner had also been made aware of my condition. I hadn't even walked through their doors, had only researched them via the Medical Licensing bureaus, and the insurer's site. I was floored.
I know that I'm going to at least be seen as a patent who is trying to be healthy, rather than someone who only wants drugs. I know that my doctor is interested in the issues that arise from my conditions. And, I now have a better feeling, that this time, I won't be stuck in yet one more cycle of side effects. Who knows, maybe this time next year I will be back to my normal size AND walking on my own. But I do know, this is a professional who is interested in one thing- keeping me on a road to true health.
Today's questions: Have you done research on your health professionals? Do your doctors take time to learn about you and your conditions? What do you wish your doctor would understand about you, and your illnesses?
I wasn't exactly charmed by our first encounter. The office is decidedly efficient, with little room for warmth. There isn't any banter between staff and doctors. The place isn't peppered with sales items, and the sales person who bothered to show up when I was there was quickly shuttled away. That was a selling point, though. I was shuffled into an office, and then a few moments later, was bombarded with short, sharp questions from a woman who didn't bother introducing herself. I assumed she was the doctor as her lab coat had imprinted names, but I still have no idea if she knows I hadn't even seen her for less than five minutes before she stomped out again.
This is the first doctor's office I had been to in quite some time where I wasn't handed a bunch of sales items, or viewed notepads from drug companies. There was no indication that there was a single drug pushed here. The doctor looked at my forms, said, "I don't administer THOSE medications" when she came upon the morphine, and then proceeded to ask ten or so questions that didn't really tell me anything about her except she was business, and nothing but.
But, after about 15 more minutes, she returned and asked even more questions. She had read up on Ehlers-Danlos syndrome, and wanted to know about my previous treatments. She had researched my issues specifically. Everything was done as if I was in an interview for a high power managerial job. But then she said the one thing I hadn't heard in about eight years. "You've been given a lot of medication that is contraindicative, and I think we need to start from scratch."
I started to explain that every doctor I had since since 2002 has done nothing but hand me pills for side effects of other medications. I've gained 58 lbs in total, and I am feeling miserable about not being heard by anyone, including her. I saw her reaching for a document. She said, "we need to get you the right tests to find out the right diagnosis." And, left it at that.
The next ten minutes, I waited for her assistant to hand me a lab sheet. I saw tests that I have been requesting for YEARS suddenly become the first line of offense for this doctor. She has been doing research on my condition before the first visit. In fact, her partner helped the assistant by saying, "She has Ehlers-Danlos Syndrome, you'll need to look under 'syndrome' for the coding". Her partner had also been made aware of my condition. I hadn't even walked through their doors, had only researched them via the Medical Licensing bureaus, and the insurer's site. I was floored.
I know that I'm going to at least be seen as a patent who is trying to be healthy, rather than someone who only wants drugs. I know that my doctor is interested in the issues that arise from my conditions. And, I now have a better feeling, that this time, I won't be stuck in yet one more cycle of side effects. Who knows, maybe this time next year I will be back to my normal size AND walking on my own. But I do know, this is a professional who is interested in one thing- keeping me on a road to true health.
Today's questions: Have you done research on your health professionals? Do your doctors take time to learn about you and your conditions? What do you wish your doctor would understand about you, and your illnesses?
Monday, February 2, 2009
Pain and Stress - Sibling Rivalry
Those of us who battle chronic pain are often confronted with depression- caused either through the medications designed to bring us relief from the ache, or caused by the illness for which we are being treated. Depression is still an unknown in the medical community, and yet medications are given to chronic pain patients that were once considered mind meds, only. Not surprisingly, the side effects from the anti-depressants are often those that mirror illnesses such as Lupus, Crohn's Disease, and even bronchial disorders. But, the one factor that seems to cause enhancement of both pain and depression is the stress of every day life.
The country is experiencing financial failures. Our families are in constant battle between job security, cost of everyday items, health care rates and insurance premiums. The education system seems to be constantly put aside for more bailouts for wealthy banking systems. The housing market hasn't been stable in many years, and Social Security is not very secure at all. With all the issues of life unavoidable, and certainly unmanageable, it appears the health of pain sufferers is greatly reduced. Stress and pain are married. We are the ones who have to wonder, what can we do to stop this stress so that the pain is at least somewhat under control?
Life is not a managed state of being. It's moments strung together by events, people, unexpected moments, and certainly unexpected health issues. We don't have a say from one day to the next in anything that happens around us, but we DO have a say in how we respond to these events, people, locations, and situations. Our response is the one thing that can help stop unnecessary pain. There are specific stress triggers and responses we can elect to have that will help us cope better.
Road rage- as someone who experienced it as a passenger, as a driver, and on the roadways with others who seem to lose their minds once driving- I know it's part of the stress of anyone who is behind the wheel. Twelve or so years ago, I was living in San Francisco, and battling a commute that although was short in distance, was hours in time. My left knee dislocated many times as I used the clutch to lower gears and I found the pain unbearable. Add the anger of those who are in no mood to be behind a slower driver, (riding in the right lane, by the way), and you'll see a lot of grumpy gas guzzling SUV's swerving in and out, fingers flipping, and dozens of near accidents, and a few on-purposes. Back then, as traffic slowed, I'd blow kids Bubbles out the window. Generally that was distracting to me, and I never felt the ire as others would huff around me.
Everyone has SOMETHING that is of interest-whether it be music, sports, television shows, puzzles- whatever it is, you have something that you enjoy that's not car related. By simply tuning your radio, MP3 player, or CD player to the one thing you enjoy, you can help reduce your own aggravation on the roads. For those in public transportation- it's a great time to pick up hobbies like knitting, reading, word games, and even learning something through the free college courses found on the podcasts online. If the place you are in causes you stress, mentally remove yourself from that place.
People- We all have someone who may talk too loudly. There may be someone who has a habit of rambling when you want silence. There may be someone who never talks and you need to be socially active. Someone may be a busy-body, while another may be distant and misguided about your life or intentions. Whomever it is, or however you know them...people cause stress.
The one thing you can do to prevent people causing stress in your life is learn that people are who they are no matter what we want them to be. The only way we can let people NOT affect us is to completely remove them from our lives. If that's not an option, such as a co-worker or a family member, your only option is to find something within yourself that will distract you from the other person. For instance- if you see the color blue and enjoy it, start to look for the color blue when that person is getting on your last nerve. The distraction puts you in the moment- and being in the moment is about not letting things build up in your emotional closet.
What about situations? Can you really take your mind off of situations such as job loss, bill paying, taxes, broken cars, or even insomnia? Does hearing the news about Iraq, seeing an animal abused, or knowing about a kid losing a parent become part of your every day life? Worry is the primary source of stress for most people. Worrying only leads to two things- an outcome that is exactly what you pictured, and were unable to change despite your worry, and an outcome that was absolutely wonderful, and you worried for nothing. Worry is a self-perpetuating emotion. We worry and we worry about what we worry about, and we worry about not worrying. It's an emotion that eats at us the way children wolf down Halloween Candy.
We are going to be faced with life issues that are completely out of our control. Someone may be laid off because the company is laying people off. A car may break down simply because it's had one mile too many. We may be unable to pay our bills. This is a life that is full of events and trauma that isn't within our control. But, we can do small things that make us feel a little bit more centered, and a little bit more part of the solution instead of a victim of our circumstances. If you can't earn money, find small ways to save money instead. If you can't find a job, find ways to make the skills you have more marketable. There are free university courses on line, and even more through podcasts. If you find that you have limited transportation, think of it as a way to improve your health by giving you a chance to walk, ride a bike, or even run.
Stress doesn't have to run your life. It doesn't have to add to your chronic illness or chronic pain. It can be as much controlled as your hair color, your diet, and your choices in friends. All you need to do is understand that you will have times that feel out of control. You will get through them. You will learn to live life as if the days you have are the greatest days you've ever had. If you don't, you'll find the pain stronger. You'll accept that you are not a person who can grow and learn from the life around you.
When all of these factors are present, and you still have issues with pain that are exacerbated by the stress around you, there is a method of relaxation that was studied and proven effective by the Deaconess Hospital, Harvard Medical, the Dana-Farber Cancer Institutes, and even Tufts. The method is called The Mind/Body Technique. Using simple breathing exercises, and cognitive recognition, you can learn to handle stress by learning how to live in the present. Several books exist on this, and can walk you through the techniques. Many people intuitively talk themselves down from feeling overwhelmed, but for those of us with chronic illnesses and pain it sometimes helps to attend workshops and meet others with similar issues. You won't need medication, you won't need equipment. You just need the ability to sit quietly for a few moments.
Today's questions- What ideas do you have for removing stress from your life? Do you find a hobby or a pet distract you from your pain? Do you have a friend, co-worker, or even an acquaintance you find able to listen to you when you are feeling overwhelmed?
The country is experiencing financial failures. Our families are in constant battle between job security, cost of everyday items, health care rates and insurance premiums. The education system seems to be constantly put aside for more bailouts for wealthy banking systems. The housing market hasn't been stable in many years, and Social Security is not very secure at all. With all the issues of life unavoidable, and certainly unmanageable, it appears the health of pain sufferers is greatly reduced. Stress and pain are married. We are the ones who have to wonder, what can we do to stop this stress so that the pain is at least somewhat under control?
Life is not a managed state of being. It's moments strung together by events, people, unexpected moments, and certainly unexpected health issues. We don't have a say from one day to the next in anything that happens around us, but we DO have a say in how we respond to these events, people, locations, and situations. Our response is the one thing that can help stop unnecessary pain. There are specific stress triggers and responses we can elect to have that will help us cope better.
Road rage- as someone who experienced it as a passenger, as a driver, and on the roadways with others who seem to lose their minds once driving- I know it's part of the stress of anyone who is behind the wheel. Twelve or so years ago, I was living in San Francisco, and battling a commute that although was short in distance, was hours in time. My left knee dislocated many times as I used the clutch to lower gears and I found the pain unbearable. Add the anger of those who are in no mood to be behind a slower driver, (riding in the right lane, by the way), and you'll see a lot of grumpy gas guzzling SUV's swerving in and out, fingers flipping, and dozens of near accidents, and a few on-purposes. Back then, as traffic slowed, I'd blow kids Bubbles out the window. Generally that was distracting to me, and I never felt the ire as others would huff around me.
Everyone has SOMETHING that is of interest-whether it be music, sports, television shows, puzzles- whatever it is, you have something that you enjoy that's not car related. By simply tuning your radio, MP3 player, or CD player to the one thing you enjoy, you can help reduce your own aggravation on the roads. For those in public transportation- it's a great time to pick up hobbies like knitting, reading, word games, and even learning something through the free college courses found on the podcasts online. If the place you are in causes you stress, mentally remove yourself from that place.
People- We all have someone who may talk too loudly. There may be someone who has a habit of rambling when you want silence. There may be someone who never talks and you need to be socially active. Someone may be a busy-body, while another may be distant and misguided about your life or intentions. Whomever it is, or however you know them...people cause stress.
The one thing you can do to prevent people causing stress in your life is learn that people are who they are no matter what we want them to be. The only way we can let people NOT affect us is to completely remove them from our lives. If that's not an option, such as a co-worker or a family member, your only option is to find something within yourself that will distract you from the other person. For instance- if you see the color blue and enjoy it, start to look for the color blue when that person is getting on your last nerve. The distraction puts you in the moment- and being in the moment is about not letting things build up in your emotional closet.
What about situations? Can you really take your mind off of situations such as job loss, bill paying, taxes, broken cars, or even insomnia? Does hearing the news about Iraq, seeing an animal abused, or knowing about a kid losing a parent become part of your every day life? Worry is the primary source of stress for most people. Worrying only leads to two things- an outcome that is exactly what you pictured, and were unable to change despite your worry, and an outcome that was absolutely wonderful, and you worried for nothing. Worry is a self-perpetuating emotion. We worry and we worry about what we worry about, and we worry about not worrying. It's an emotion that eats at us the way children wolf down Halloween Candy.
We are going to be faced with life issues that are completely out of our control. Someone may be laid off because the company is laying people off. A car may break down simply because it's had one mile too many. We may be unable to pay our bills. This is a life that is full of events and trauma that isn't within our control. But, we can do small things that make us feel a little bit more centered, and a little bit more part of the solution instead of a victim of our circumstances. If you can't earn money, find small ways to save money instead. If you can't find a job, find ways to make the skills you have more marketable. There are free university courses on line, and even more through podcasts. If you find that you have limited transportation, think of it as a way to improve your health by giving you a chance to walk, ride a bike, or even run.
Stress doesn't have to run your life. It doesn't have to add to your chronic illness or chronic pain. It can be as much controlled as your hair color, your diet, and your choices in friends. All you need to do is understand that you will have times that feel out of control. You will get through them. You will learn to live life as if the days you have are the greatest days you've ever had. If you don't, you'll find the pain stronger. You'll accept that you are not a person who can grow and learn from the life around you.
When all of these factors are present, and you still have issues with pain that are exacerbated by the stress around you, there is a method of relaxation that was studied and proven effective by the Deaconess Hospital, Harvard Medical, the Dana-Farber Cancer Institutes, and even Tufts. The method is called The Mind/Body Technique. Using simple breathing exercises, and cognitive recognition, you can learn to handle stress by learning how to live in the present. Several books exist on this, and can walk you through the techniques. Many people intuitively talk themselves down from feeling overwhelmed, but for those of us with chronic illnesses and pain it sometimes helps to attend workshops and meet others with similar issues. You won't need medication, you won't need equipment. You just need the ability to sit quietly for a few moments.
Today's questions- What ideas do you have for removing stress from your life? Do you find a hobby or a pet distract you from your pain? Do you have a friend, co-worker, or even an acquaintance you find able to listen to you when you are feeling overwhelmed?
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