Be Your Own Advocate

For patients to get good care, they need to partner with their doctors and be actively involved in their own care in a constructive way that makes things flow more smoothly for everyone. In particular, patients must do some basic things: keep an organized record of their medications, list their current problems, and know their medical history. These simple things will take some of the time stress off the doctor and help the patient get the quality health care they need and — hopefully — also accomplish it at a reasonable price for the patient and a reasonable fee for the doctor. I urge you to learn the tricks in this book about ways to organize yourself and your own medical information so it will be easier for you to get the best treatment and also to learn useful information about more effective management of issues like prescription costs, how to look around for the best care for your problems, when to consider getting a second opinion, how to deal with your insurance company, and so on.

I cannot stress enough that you must be the one most vested in your health (and, sometimes, that of your loved ones). You are the only one whose health you have to worry about; your doctor has to worry about hundreds — or sometimes, thousands — of patients. You know your history up one side and down the other because yours is the only one you are focused on. However, even you will not recall every detail at any given time, so it is not realistic to expect your doctor to remember every detail of your history in the same depth you do — no matter how much she cares. In fact, patients all too often come for a visit and omit important complaints because they "just forgot" and bring up the issue on the way out of the room, or later on with the nurse — or not at all. It can be especially difficult for you to relate even all your current symptoms, much less past history, if you are really sick or in serious pain. The doctor's recordkeeping helps, if you are seeing the same doctor, but some things probably have changed since the history you gave the doctor a year or two ago. You might have remembered something important you hadn't remembered to share previously. Even though it may be in the chart, doctors rarely have time to sit down and review your entire chart, and you must be an active partner in the whole history and the whole treatment process.

It is important for you to have and to maintain a good record of your own history. Don't take it as an insult or a lack of caring on the part of the doctor, but rather be alert and point out to them things they may not remember. Medical care needs to be a teamwork situation, and teamwork does not mean you dump out a few facts and then the doctor takes care of everything else. You must be aware of how your disease is affecting you and how your meds or other treatments are affecting you, and report your observations to your doctor. It is up to the doctor to question you further, as needed, to decide how those threads may be tied together. While you could be having a reaction or side effect to a medication you have been on for ten years, for example, it is much more likely to be something else — like a more recent medication or something totally unrelated. The doctor needs to take your observations against his internal and external databases of facts and work to come to the best next step in your treatment. You, as a patient, need to understand that any given symptom you have could be an indicator of many different problems, not just a single one. Think, for example, of how many things you already know about that can cause a fever.

Ironically, it is amazing how little some patients seem to know or care about their own illness, medications, treatment of their illness, costs, etc. It is frustrating to ask a patient for a list of all of his medications, and he refers to a "little pink pill" or uses some equally unhelpful description. The patient not only doesn't know the name and strength of his medication, but he often doesn't know how he is supposed to take it, even though it is on the prescription bottle, and he doesn't know what it is for. Patients often know and care even less about their disease and what it means for them.

Thankfully, not all patients are that passive, but the percentage is high enough to be frustrating, especially when they are intelligent enough and educated enough to be able to do much better. It is also one more issue that takes up doctor time when meds have to be looked up, and research has to be done to determine information the patient should already know.

It is equally frustrating to deal with patients who come in, have heard a TV commercial touting a specific medication, and want to tell you what their diagnosis is, and what they should be taking — all based solely on that commercial. How much easier life would be if they paid that much attention to what the doctor tries to tell them. As a patient, you need to understand that those commercials are designed to sell you a disease you probably don't have which their medication will fix.

Also, some patients, to their credit, have been doing some research on their illness, so they understand it better. Using that information as a springboard for discussion can be productive. But when the patient comes in and acts as if the information he got off the Internet is the whole picture and that he knows more than the doctor does about the illness, it can be unproductive at best and destructive at worst.

Think about how you would feel if someone came in, armed with a small amount of information in your area of expertise, and wanted to tell you how to do your job. Advertising, and even valid medical articles, rarely present more than a small segment of relevant information. If medicine were as simple as TV commercials make it appear, doctors would not be needed at all. Few symptoms, alone or in a cluster, will tell you or the doctor that there is only one disease that could be causing your problems.

Educating either group of patients, be it the ones who need to be taught what they don't know or the ones who need motivation to learn something, can take a great deal of doctor time, which doctors often simply do not have. Sometimes the doctor or her staff can help, or she can refer you to useful and appropriate resources to study your issues further.

Many other issues in managing your health are your responsibility, not anyone else's. You are the one who has to keep your appointments, take your medications, make the lifestyle changes, and basically take those daily steps to care for your own health under the guidance of a physician. Doctors are with you only briefly. The rest of the providing of care is in your hands.

Part of the issue for all of us is to plan ahead so that family members will have each other's information in case one of you happens to be too ill, too young, or too old to do so for yourself. Obviously, parents provide this service for children until they are on their own; hopefully, you will keep a record to pass on to them.

The information in this book can help you do a better job of caring for yourself and/or your loved ones. Many issues I discuss will seem like no-brainers to some of you, but they are brought up here because they are issues that are seen in doctor's offices on a regular basis.

Your Important Issues to Manage

• Keep your appointments

• Know your medications

• Know your current complaints or problems

• Know your history

• Talk to your doctor openly and honestly

• Learn about your illness

• Learn about your meds and other treatments

• Follow your treatment plan; write down the instructions

• Monitor yourself for how well you do or don't respond to treatment

• Get adequate sleep and rest

• Get help with your stressors

Prevention, Prevention, Prevention!

The most important strides made in health care over the centuries have not been made in treatment; they have been made in prevention. That should be your main goal in terms of your health. Everything else that follows this chapter addresses what to do when prevention has not worked. I will list some of the many preventive things done by society and things you can do yourself, or with the aid of doctors and others, that should help you avoid the need to go to the doctor for more than well-person evaluations. Know, of course, that the whole of the Medical Industrial Complex (and probably many other big businesses in the world) would be much happier if you didn't do these things, because it will cut drastically into their income. The choice is yours to look out for them, or to look out for you.

The first thing you must do is to stop looking for a magic cure to anything that ails you. Instead, start looking for the magic in yourself, and the magic that can be accomplished by our society working to promote preventive maintenance. Some major steps to improve health have been the simple issues of clean water, sanitation and waste management, immunizations, removing trash, and removing sources of disease spread, such as mosquitos, fleas, and rodents.

Shortly after I started medical school, the doctors and the garbage collectors in New York City went on strike at the same time. In case you aren't sure, the garbage collectors were missed the most. Not only have we kept more people alive by those methods than with all our antibiotics, but you will read later how antibiotics are betraying us.

The human body is an incredible piece of equipment with marvelous abilities to heal itself under many difficult circumstances with a minimum of help. It can survive incredible insults, especially with some of the incredible tools we have now for treatment and healing — things that no one could have imagined surviving in the past. The presence of all those healing tools may have made people lax and lazy in terms of what they can and should do to protect this wonderful body so it has a minimal risk of disease to begin with.

Most people do not practice nearly the preventive care on themselves they practice on their cars!

If you have a new Mercedes or any other nice quality car, and if you are a reasonable, sensible person, you are going to do the maintenance on it that prevents serious breakdowns. You will take it in for fluid changes, make sure the radiator has water in it and the tires are full of air, and take it to the shop if it starts acting strangely or a button lights up. You will not throw corrosive chemicals on or in it, participate in demolition derbies just to see how tough it is, or try to jump the Grand Canyon with it. You will feed it the proper fuel, oil, water, and air for the tires and whatever else it needs to help it stay functioning and minimize the chances for things to go wrong. When things do go wrong in spite of all that, that is the time to take it for "treatment."

I am going to list, and briefly elaborate on, some of the choices you can and should do to maintain your body and your brain in good operating condition and minimize the need for medical care.

Water purification and trash control are items maintained by our government for a large part of our social system. Despite this, each of us needs to control our own personal trash, so we don't let it pile up and expose us to problems. Whether it is piles of trash attracting rodents and snakes, standing water that can breed mosquitoes, or items providing hazards in terms of falls, fires, and so on, we need to control our personal trash. There are water quality standards (which are much stricter in large cities than they are in small special utility districts) that tend to protect us from the more severe issues of dirt, bacteria, other life forms that could bring us harm, and some chemical contaminants. We face more problems now with chemicals that get into our water that are not checked for. These include things like pesticides that can leach into the aquifers, medications and illicit drugs that get into our water via our sewage system, and toxic chemicals dumped from manufacturing plants. These can be what gets cleaned out in the normal water purification process. However, I live in a rural community; all they do is add chlorine to the well water. The water not only is very alkaline, but has so much sodium in it that it kills my orchid plants and is a risk to people with heart disease. If you live in an area where there is any kind of concern like this, there are in-home water purification systems you can use to prevent problems in this area. These range from the water pitchers with filters you can get in the store all the way to reverse-osmosis systems from companies like Culligan that take almost anything you can imagine out of the water so it is nearly like distilled water.

Sanitation and waste management have been quite important in the prevention of the spread of disease in a wide array of different ways.

Proper sleep is a critical part of staying healthy. It helps your mind and body cope and heal. It is an extremely important part of treating patients with any physical or mental illness. Poor sleep can cause a wide array of problems all by itself, whether for the short term or the long term. It has been known to cause people to have hallucinations, anxiety, weight gain, depression, cardiovascular problems, poor work and school function, increased pain, delayed healing, and a wide array of other chronic wear-and-tear problems for both the body and the brain.

Take time to relax and enjoy yourself, your family, and your friends. We are human beings, not human doings. Any failure to take care of the human side of ourselves — the emotional side of ourselves — is a major cause of both physical and emotional dis-ease. Good mental and emotional health is a cornerstone of ongoing good physical health. Failure to take care of yourself emotionally often causes you to neglect yourself in many of the important preventive areas listed above. It also lowers the ability of your immune system and other parts of your body to be able to maintain a state of good health. (See section on mental health in chapter 10.)

Hand washing is an important way to avoid spreading many kinds of organisms. If you are dealing with your own health issues, such as wounds you are in contact with, if you are covering your mouth while coughing, or if you are around people who are clearly ill and contaminating surfaces around you, then washing your hands well with soap and water is a good procedure to follow and is more effective than other kinds of hand sanitizers. However, you do not need to be frantic about the fact that everything you touch has germs. Germs are a normal part of life, a major component of our bodies and everything else on the planet, and exposure to them is an important part of developing a healthy immune system that helps us fight off those few types of bacteria that are harmful.

Immunizations are important. There is no significant evidence that they, or the thimerosal that has been used as a preservative in vaccines, causes autism. (We will discuss autism later.) The evidence is indisputable that millions of lives have been saved by preventing those severe diseases (with the possible exception of influenza). Although I was fortunate enough not to live in the era of smallpox, polio was an issue when I was young and too many people died, were crippled, or wound up in iron lungs. Those things don't happen with polio now because of the ability to immunize people. The vast numbers of the lives that immunizations save are well worth the risks they represent in terms of fairly rare complications. Frankly, you will be hard pressed to find anything in life that doesn't have some risk of complication — even breathing.

When I was in medical school in San Antonio, Texas, we had an outbreak of diphtheria that sickened and killed many people. It occurred because a segment of the population did not understand the value of immunizations and had never been immunized for diphtheria. They also didn't understand that sharing water from a common drinking vessel at a community well could spread disease from a sick person to a healthy one. These were totally preventable cases of illness and death.

We currently have a grossly underpublicized recurrence of whooping cough in this country. It occurs because so many parents are refusing to immunize their children; immunity tends to diminish as we get older, especially into our fifties. In babies, whooping cough can be fatal. In older children and older adults, it presents the problem of a severe chronic cough for about six months, one that cannot be treated with medication and that may lead to things like hernias and broken ribs.

England is currently having epidemics of measles because about 20 percent of the population has not been immunized, and the country is now mandating immunizations. Measles can and does kill people. One doesn't need to see many events like this to appreciate how such a simple thing saves many lives from being needlessly lost.