This book is for the more than 600,000 women and 60,000 men in the United States who suffer from lupus. I write from firsthand knowledge. I am a nurse and also a lupus patient. As a nurse with lupus, I don't minimize suffering or pretend that only physicians know what is best for the individual. Lupus is a strange and terrible disease. One day a person feels fine and the next day she can't get out of bed. She may have pain so excruciating that she spends the whole night in the bath tub, crying as she works to keep the water as hot as she can stand it. Another night, for no discernible reason, she may feel well enough to go dancing. Lupus may attack a patient's kidneys, heart, or brain, or her only symptoms may be joint pain or that lupus rash on nose and cheeks. Lupus causes depression. So do sortie of the medications that treat lupus. Whatever the symptoms, lupus is a chronic and as yet incurable disease. What is lupus? What are its manifestations and how is it diagnosed? Which physicians specialize in this disease? What medications do they use, and why? What about the alternative or complementary treatments? LUPUS WHAT'S IT ALL ABOUT? answers these questions and many more. Three physicians, lupus specialists, share their thoughts about lupus and lupus patients. Arheumatologist explains what a patient can do to help her physician provide her with the best treatment. An internist, who uses herbal medicine and acupuncture as well as traditional medicine, describes his holistic approach. A research physician shares the exciting research he is doing. Psychological well-being is an essential part of lupus treatment. My co-author, Mary McClure Goulding, an internationally recognized teacher of psychotherapy, presents techniques for improving the quality of life by using breathing exercises, relaxation, imagery, and story-telling. She teaches assertiveness, and how to substitute self-caring for worry and unhappiness. In the chapters, "Your Work Life" and "Your Home Life," everyday issues are presented and discussed, such as short cuts in housework and whether to keep your job or apply for disability benefits, pins a step by step guide to applying for these benefits The mysteries of computer use are made easy, so that readers can join chat groups and get the newest information about lupus. To me the most inspiring section in this book is 44 women and Men with Lupus Tell Their Stones." Each lupus patient is unique, and responds uniquely to this disease. One woman is now able to joke about a honeymoon that ended in her near total paralysis, and tells of her long and successful struggle to regain mobility. Four women, whose kidneys failed, describe their quite different experiences with dialysis. A woman who is legally blind, disabled, and almost seventy years old, survives on only $660 a month Supplemental Security Income, but nevertheless manages to go to college. Some men and women are employed and others have been forced by their illness to quit their jobs. Some have children, some are childless, some have partners, and some live alone. Two women reveal how their marriages were strengthened as their husbands helped them cope with the trauma of lupus. Two women were deserted by husbands who wouldn't tolerate their disease, one while she was hospitalized in the intensive care unit. One woman ended a seven year relationship with her lover, when she realized that she needed a more peaceful life than was possible with him. A man, who couldn't even hold a glass or step over a tiny bump on the sidewalk, put all his effort into an exercise program that made him strong enough to compete again in sailboat races.

These women and men, Mexican-American, Black, Japanese-American, and White, belong to lupus Support groups sponsored by the Lupus Foundation of America. They have become intimate friends, as they tell each other their joy and pain. I am one of them. Although I was a registered nurse when I was diagnosed with lupus, I knew nothing about the disease. My physicians did the right tests and then prescribed the right medications, but when I mentioned that I needed fourteen hours of sleep every day, and that I often cried on the way home from a perfectly fine day at work, their faces went blank. Usually, they changed the subject. I began reading everything that was written on lupus, and started a local support group for lupus patients. I wanted to learn what others did to cope with this disease. It's taken years, but I think I now understand what we lupus patients are going through physically and emotionally, and what we can do to optimize our health. This book is my first, and the writing of it has been demanding and sometimes awesome. It's also been plain fun, especially when my family started sending ideas for book titles: Don't Be A Dufus, Read About Lupus. Thrown For A Lupus? The Straight Poopus On Lupus. The Lupusite's Guide To All Things Lupusitical. And, finally, Ask Not What Your Lupus Can Do For You, Ask What You Can Do For Your Lupus. It is a serious subject, and at times I can laugh about it. My goal is to share what I have learned with lupus patients, families, friends, and health care providers, as well as with ill people who have not yet been diagnosed but think they might have lupus. All of these people are still trying, as I have tried, to find out:

* In the past male pronouns were used to designate men and women. Because most lupus patients are women, in this book the female pronouns may refer to both male and female patients.


What is Lupus

The official name of Lupus is systemic lupus erythematosus or SLE. It is a chronic, inflammatory disease that affects different parts of your body. For some unknown reason, your auto-immune system has gotten permanently out of whack. In addition to doing its usual jab of attacking germs and other unwelcome invaders in your body, it has begun attacking your body's own tissues. It may be waging war against your skin, glands, bone marrow, blood, connective tissue, or such organs as your kidneys, heart, lungs, or brain.

The symptoms are confusing, contradictory, and ever-changing. You may feel pain in your hands and then in your gut, be very sick for days at a time and then suddenly become almost symptom-free, without having the slightest idea why your symptoms appear or disappear. That's the reason lupus is called "the disease with 1,000 faces." Each person's experience with lupus is unique, as you will see as you read what fourteen women and men say about their lupus in the following section.

What else about lupus?

It is a chronic disease for which there is no known cure. It is not contagious. You didn't get it from someone else, and you can't pass it on to your children, loved ones, or anyone. No one can catch lupus from you.

A few men get lupus, and very rarely lupus shows up in females before adolescence or after menopause; however, more than ninety percent of lupus patients, are women of childbearing age. No one knows why this is true, although researchers suspect that female hormones are in some way involved.

Since lupus is not contagious, why does one person get lupus and not another? Perhaps certain diseases, contracted earlier her in a person's life, may leave her susceptible to lupus. There may be genetic explanations. Lupus may be caused by a virus or a "cluster of viral influences." Environmental causes are a possibility. Researchers are looking carefully at patients' medical histories and also are seeking genetic, environmental, and viral causes. So far, unfortunately, the cause or causes remain undiscovered.

Hereditary factors are difficult to trace, because in the past lupus was rarely diagnosed. Although a very old disease, until quite recently lupus was known only to rheumatologists and the type of physician whose hobby was reading about esoteric illnesses.

Now, every physician in America, and many lay people, know of lupus. In the United States today it is estimated that more than 600,000 women and about 60,000 men have systemic lupus erythematosus. More than 15,000 new cases are diagnosed each year.

Before lupus was well-known, physicians and the general public used to say, "She's just the ailing type," or "She was born weak," or "It's all in her mind." Surely, these remarks did not do much to make the life of a lupus sufferer happier. Imagine what it is like to be unable to get out of bed, or to hurt in every joint, and be told you are just weak or neurotic. Even today women are called "hypochondriacs" when their diseases cannot be diagnosed. A number of these women suffer from lupus.

Lupus is difficult to diagnose because of its changing and contradictory symptoms. No one has all of them, but all lupus patients have some of them from time to time. Most people with lupus have experienced the big four: exhaustion; pain, usually in the joints; sun sensitivity; and that red rash that supposedly reminded a French physician, almost 150 years ago, of "wolf bites on the face." Where in the world did he see people with wolf bites on the face, especially bites that didn't break the skin? Other medical historians believe that he named the disease lupus because the rash looks like the darker shadings on a wolf's face. Anyway, lupus is Latin for wolf.

That French physician wasn't the first to discover lupus. Good old Hippocrates described the rash in about 400 BC.

If you suspect that you may have lupus, read the list of symptoms to see if some of them apply to you.

Malar Rash. This red rash, for which lupus was named, appears over the bridge of the nose and across both cheeks. If you are the type of person who likes to imagine that rashes look like something other than just a rash, its form might remind you of a butterfly. It may be visible for only an hour or two, or for days or weeks. Usually, it comes and goes.

(Some people get a different rash, round and scaly spots that may show up on any part of the body exposed to the sun, though it, too, is most common on the face. If it isn't treated, it may leave white spots or scars. This is a different disease, called discoid lupus.)

Sun Sensitivity. You may notice your rash for the first time after you've been in the sun. You think you have a sunburn, except that it is different from sunburns you've had before. Instead of pealing or turning into a tan, it remains red and may have raised patches. Perhaps you were healthy until you got a mild sunburn, and then the burn turned into welts and your joints began to ache.

The sun is your enemy. Whether or not you have been a sun lover in the past, your days of seeking the perfect tan are over. Even short exposures to the sun may make your symptoms worse. And it's not just bright sun. Any exposure to the sun's UVA and UVB rays, such as those reflected off sidewalks, sand, or snow, are harmful to you. If you are one of the minority of lupus patients whose skin is not sensitive to the sun, you may believe that the sun is good for you, because its heat on your body makes your joints feel better. The truth is, no matter what is happening to your skin, the sun's rays are stimulating the production of auto-antibodies which activate your lupus. You cannot be outside even on cloudy days without a longsleeved shirt, sun hat, and gloves, especially between 11 am and 3 pm, when the sun's rays are strongest. For some people, even prolonged exposure to halogen lights or copy machines may cause a lupus flare.

Pain. Lupus pain may be very mild or may be terrible. "I hurt all over," some say. One adolescent told her physician, "Even my hair hurts." The pain may be sharp, a steady ache, or a burning sensation, and it probably is located, like arthritis, in your joints, especially the joints of hands and fingers. Some people also have swelling and tenderness in their joints. Some have pain in their muscles rather than their joints. The pain may move around. One day it is in your ankle and the next day in the back of your neck, and another day it is everywhere. Or you may be lucky and not have much pain at all. Even if your pain is severe, it is not constant and your physician can prescribe medicine that will bring you relief, so don't despair!

Exhaustion. Exhaustion, like the pain and the rash, comes and goes, and almost always is worse during the early stages of your illness. What's the exhaustion like? In your pre-lupus days, you may have been the sort of person who raced home from work, grabbed a mountain bike and rode ten miles before supper. Or you may have ended the day tired, but able to go to the grocery store, fix supper for the children, and throw a load of laundry in the washer before you collapsed in front of the TV.

Lupus exhaustion is something new. As Tom (chapter 15,) said, "All of a sudden, I got so tired I'd even have to rest on my way back from taking out the garbage. How do you explain to anyone that you can't take out the garbage without resting?"

You may wake up in the morning too tired to get out of bed. Other days you go to work, but you have to lie down almost as soon as you arrive. On the way home from work, you pull over to the side of the road to nap, before you can continue your drive home. On bad days, grocery shopping and cooking are impossible, and doing anything with children beyond reading to them is from another lifetime. You may be too tired even to hold a book.

Again, everyone is different, some people feel vaguely tired, but can carry on their usual activities. One of the strange aspects of this disease is that the exhaustion, for no known reason, comes and goes. You may not be able to get out of bed one day, and the next day you are again energetic.

Later, when you and your doctor have figured out what medications are best for you, and when you have learned some simple ways to reduce stress and care for your body, you'll get back your enthusiasm for living. You still will need lots of sleep. Most people with lupus sleep at least ten hours out of every twenty-four.

There are other symptoms besides the four most prevalent ones:

Depression. Depression is common in lupus patients. Anyone who suffers the pain and exhaustion of lupus might be expected to be depressed, but a lupus depression is more than simply a response to a chronic and very difficult physical illness. It seems to be organically based, meaning that your body produces your depression, just as it also produces rash, exhaustion, or pain. The classic symptom of this type of depression is an overwhelming feeling of despair. Patients may or may not verbalize this despair, but the words that go with such despair are, "There's no hope for me," "Nobody can help me," and "There is nothing worth living for."

In reality, there is help and hope for you, and you'll find much to live for. A lupus depression is curable, but in the midst of your depression, you may not believe this.

Easy Bruising. You don't know that you bumped your arm or leg, until you see your black and blue bruises. Sometimes lupus medication causes this condition, but it may also be a sign that your lupus is attacking the platelets, which allow your blood to clot.

Hair Loss. You notice that your comb or brush are full of hair, and you may find hair on your pillow. This is an occasional occurrence during lupus flares, and won't be continuous.

Fever. Some people run a consistent low-grade fever, perhaps 100 degrees. Others run high fevers that come and go for no apparent reason. Check your temperature when you think you are running a fever.

Chest pain. You may feel a sharp pain in your chest that is not a heart attack. Usually, the cause is inflammation of the connective tissue between your ribs. However, the pain may be due to inflammation of the lining of your heart or your lungs. This needs immediate treatment. A physician can differentiate easily between heart, lung, and connective tissue inflammation.

Edema. If your kidneys are affected, one of the first signs is swelling (edema) of your legs, ankles, and feet. You may see in the mirror that there is also swelling around your eyes. Again, see a physician right away, preferably a nephrologist, a physician who specializes in kidney diseases. Early treatment can save your kidneys.

Cold hands and feet. As with other lupus symptoms, coldness in the extremities can be caused by a variety of physical problems, so it is not by itself a test for lupus. If your fingers turn white when cold, and bright red when warmed, you may have Raynaud's syndrome, or Raynaud's and lupus together.

Dry Eyes and Dry Mouth. This symptom occurs in about ten percent of lupus patients, and sometimes means that your lupus is involved in the glands that produce saliva and tears. You may have Sjogren's syndrome, a different, usually quite mild disease that often accompanies lupus. Or, as with other symptoms, your dry eyes and mouth may be caused by something that has nothing to do with lupus.

Confusion. Driving your car, you suddenly don't know where you are going, or how to navigate streets that in the past you knew well. Routine jobs you've done dozens of times become impossible to figure out. Usually your confusion is shortlived, but for some people it hangs around for a longer time. Some medications can clear up confusion, and others actually cause it. No wonder lupus patients need good doctors and lots of emotional support! If you have symptoms of confusion, you need someone to help think for you, so you don't make precipitons decisions, as Vera (Chapter 9) did, when suddenly she couldn't remember how to run the computer at work. She fled from her job out of fear and shame, instead of taking the sick leave she deserved. In a short time, her memory returned, but it was too late to get her job back.

Neurologists are finding other symptoms in addition to confusion, including inability to remember words, coordination difficulties, and headaches. These symptoms, now grouped together, are called neuropsychiatric lupus.

Pre-Menstrual Flares. Whatever your lupus symptoms, you will probably notice that premenstrual flares are common. Just before your period is due, your symptoms become worse. You'll learn to take special care of yourself, and not plan difficult or taxing activities at this time each month.

Those are the common symptoms of lupus. To know which symptoms apply to you, you need to be aware of your own body and what is going on with it. Perhaps in the past you were a person who took your body for granted. Most people do. From time to time they exercise, go on diets, or lie in the sun to get a good tan, but mostly they don't concern themselves with their bodies. If you have lupus, you must concern yourself with your body. Your life may depend on it.

No one has every symptom, and each of the symptoms, seen alone, can point to problems other than lupus. If you have three or four of these symptoms, or if any one of these symptoms is severe, you'll want a physician to order laboratory tests to help diagnose your illness.

A few people with lupus, especially those who are on steroids for treatment of other diseases, have such minor symptoms that they hardly even know they have the disease. Others feel very ill right from the beginning. In the past, the majority of lupus sufferers died within a few years, but today almost everyone with lupus can live out a full, active life. You can, too, especially if you and your physicians do a good job of taking care of you.

Probably you don't need urging to make an appointment with your physician. Even if in the past you've been the type to avoid doctors, this time you know from your level of pain, fatigue, and general distress that something is very wrong with you.

But when you get to the doctor's office, you may feel much better and your rash may have subsided, You may be a bit embarrassed that you are taking a physician's time with something that has already "gone away." On the other hand, you may be too exhausted and depressed to explain satisfactorily what you are experiencing. It may seem hard to speak convincingly about how much you hurt or how tired you are.

In order to give a complete report to your physician, reread the list of symptoms, and write down all of them that you have experienced, plus any others that are not listed. That way, you'll be able to present a clear picture of what has been going wrong with your body.

Although no one can cure your lupus, much can be done to alleviate your symptoms and prevent permanent damage to your vital organs. Remember, more and more studies and experiments are being undertaken to find new ways to treat systemic lupus erythematosus. In the future, who knows what new treatments or even cures will be available? If you and your physicians do everything possible for your health today, you'll be ready as the newer and better treatment methods arrive.

In the following chapter you will learn more about how physicians diagnose and treat systemic lupus erythematosus. You'll learn which medical specialists you need, and how to find them. You'll learn about medications, as well as complementary or "new age" medicine. In addition, you'll discover many simple, enjoyable, and effective methods for helping yourself.

You'll also get to know some lovely, exciting women and men, who report on how they have managed to live with lupus. Each person describes her particular symptoms, and her own unique methods of coping with problems at home and at work. They are members of lupus support groups, which meet regularly to share information about lupus, and have fun together.


Finding a Doctor and Getting a Diagnosis

First of all, let's assume that you have some symptoms of lupus, and are looking for a good physician. Perhaps you have a primary care physician. You may want to see this person for your first appointment, or you may have no choice for the first appointment. If you are hurting badly and have frightening symptoms, you don't want to dally around, looking for a new physician. It is understandable that you need someone right now. With luck, you have a primary care physician whom you like and find easy to talk with.

If not, make an appointment with a rheumatologist, because these doctors specialize in diagnosing and treating lupus. Remind yourself that you can choose a new physician at any stage of your treatment. More about that later.

Now you need to prepare for your appointment. In the old days, that meant only that you should take a bath and wear clean, nice underwear so that the doctor would think well of you. That was what your grandmother was told, when she was a child. In her world, her family doctor knew her entire family well, and made treatment decisions that everyone obeyed. In today's world, the practice of medicine is more technical and scientific - - actually, it is far better medicine - - but physicians are busier, may not know your family or you, and they definitely need your help.

You can do your part by gathering the necessary medical information ahead of time. Before your appointment, write down your family medical history, your medical history, a list of past and present medicines that have been prescribed for you, your current symptoms, and your questions about your symptoms. Use four sheets of paper.

On the first sheet, write the significant diseases that members of your family had. If you don't know what is significant, put down all the diseases you remember. Include on the list the causes of death of your grandparents, parents, aunts and uncles, and brothers and sisters.

On the second sheet of paper, write your own medical history. Write the names of all illnesses and all surgeries you have had, with approximate dates, as well as the names and phone numbers of physicians you have seen recently. If you are allergic to any medicine, don't forget to list it, too! List each medicine you are currently taking, the dosage, and how long you have been taking it. Also list medicines that you have taken during the past year or two, and are no longer taking If you are uncertain of the names of these medicines, put all your medicines in a bag and bring them with you.

On the third page, list the symptoms that you have experienced during the past month. Re-read the symptoms listed in the first chapter of this book, to help you remember, and be sure to write down any symptoms that are not on that list. Underline the symptoms that led you to make this appointment, the ones that are especially troublesome or painful.

The fourth sheet of paper, which you need for every visit no matter how often you see a physician, is your list of questions. Always, keep a written list of questions that you want to discuss with your physician. Otherwise, during a brief, hurried appointment, you may forget them.

Now that you have the information your physician will seek, plus your own questions, you need to put yourself in the right frame of mind. Some people are afraid of doctors because of past experiences, or because their parents were afraid. Some go into a doctor's office as if they are peasants being brought before the King or Queen. It is important that you maintain your self-esteem and dignity. Ignorance and poor self-esteem lead to poor treatment and, therefore, a worsening of your symptoms.

Tell yourself, as you walk into the office, "I am not a little child. I am a competent adult." You are not in a physician's office to please the physician, or to prove that you are sweet, lovable, respectful, or brave. Remind yourself that the physician is neither your parent nor your god. You don't have to prove that you are ill. You already know that fact. You are there for the physician to use her* expertise to diagnose your illness correctly and begin treatment. You are there to get relief from your symptoms.

You are keeping an appointment with a physician in order to receive expert help for your body. It is similar to seeking expert help for your home, if the roof leaks or there is a strange odor under the house. Whether you are hiring someone to repair your body or your home, you are in charge. You are talking to a doctor who is your employee, not your judge. And you will decide whether to continue to hire this person or seek another physician.

Someone in the physician's office will ask for your family history and your personal medical history, and, of course, what is troubling you that led you to make this appointment. You will take out your notes, and begin.

(If, after you have been seen by your doctor, she merely suggests 'rest and aspirin," find another doctor immediately. Even today there are physicians who overlook the disease of lupus, or the seriousness of the disease. They still believe that their patients are depressed or hypochondriacal. These doctors should be avoided like the plague!)

Your physician will conduct a physical examination. In addition to the usual physical examination you've had lots of times, this physician will pay special attention to the areas of your complaint. She will be checking for signs of lupus. She will look for oral ulcers, which have the appearance of cold sores and are caused by inflamation. To give an example of the contradictoriness of lupus symptoms: some patients have oral ulcers so small that physicians can't see them, but they hurt so much that patients know exactly where they are; other patients have large, painless ulcers they didn't know existed

The doctor will palpate for tenderness around joints and areas of suspected inflammation. Your legs will be checked for signs of swelling. The doctor will examine your rashes, and order a biopsy if there are welts. Some lupus patients have serositis, which is an inflammation of the linings of heart, lungs, or intestines. The physician will listen through a stethoscope placed on your chest, for abnormal sounds such as those made by fluid, rubs (friction), or murmurs.

After the physical examination, your physician will order lab tests, and prescribe medication for relief of your symptoms. There is no reason for you to keep on hurting. You do not need the results of tests to be given medication for symptomatic relief.

Laboratory work is necessary for diagnosis; lupus is well known for mimicking other diseases, so you may seem to have lupus when in fact you have something else. You need tests that are specifically designed to find the lupus autoantibodies, as well as tests that will specifically rule out rheumatoid arthritis, MDS, Lyme's disease, leukemia and lymphoma, neurologic disorders, tuberculosis, chronic fatigue syndrome, and other diseases.

You may be hospitalized for the laboratory work or you may he able to have the work done as an outpatient, depending on the seventy of your symptoms.

Perhaps your doctor prefers not to order these tests but instead immediately refers you to a specialist: an internist, dermatologist, nephrologist, rheumatologist, neurologist, or cardiologist, depending on your symptoms. The specialist will order these tests.

A complete blood count is necessary. You've had this test before, because it is given as part of mass annual physical exams. This time, the physician is on the alert for a low white blood cell count, low red blood cell count, or a lower than normal level of platelets. A low red count will show that you are anemic, and the cause might be lupus. About half of all lupus patients have a low white count and/or low platelets; which indicates a chronic, active disease.

Blood chemistry tests, which differ from the complete blood count, will be ordered to assess liver and kidney function, nutritional adequacy, and the presence or absence of infection.

ANA (antinuclear antibody test) is performed on serum from your blood. It is an important test for diagnosing lupus. The titer (strength) of the ANA gives an indication of the severity of the patient's disease, as it shows the presence of antinuclear antibodies in the bloodstream. Not all positive ANA tests indicate autoimmune disease; in fact, some perfectly healthy people have a positive ANA. If your ANA is positive and they suspect lupus, more specific autoantibody tests will be performed, such as Anti-Smith, anti-DS DNA to predict which organ systems may become endangered from your lupus.

A urinalysis will be ordered, to check for diabetes as well as to look for the presence of protein, or red or white blood cells in the urine, all of which are signs of impairment of the kidneys. To diagnose lupus nephritis (kidney disorder), the physician will do a urinalysis, including an analysis of a twenty-four hour urine collection, blood studies, and perhaps an X-ray to determine the size and shape of your kidneys. Sometimes a biopsy is needed to assess the extent and severity of kidney disease.

You will be given a serologic test for syphilis. For some reason, a false positive result on this test is an almost sure sign of lupus. A false positive result means that the test says you have syphilis, but you don't have it. On the other hand, you can have a negative result and still have lupus.

Because lyme disease and systemic lupus erythematosus have very similar symptoms, it's a good idea to run the lyme titer test, Unfortunately, some lupus patients get a false positive result, so a follow-up blood test, called Western Bloc, will have to be ordered.

If the results of any of these tests indicate the possible presence of lupus, other tests may he ordered, such as complement level, sedimentation rates, and tests that have names like addresses on E-mail: IMMOO6.JPG, IMMOO7.JKPG, IMMOlO.JPG, etc.

In 1982 the American College of Rheumatology issued the criteria for establishing a diagnosis of Systemic Lupus Erythematosus. Officially, to be diagnosed with SLE a patient must have four of the following eleven criteria, though not necessarily at the same time:

  1. Butterfly (Malar) rash
  2. Discoid lesions, the reddish, raised patches that leave scars. If this is the only symptom, the diagnosis is discoid lupus rather than SLE.
  3. Photosensitivity, specifically, a rash following exposure to sunlight.
  4. Ulcerative sores in the mouth.
  5. Arthritis with joint pain, tenderness, and swelling.
  6. Evidence of either pleuritis or pericarditis: inflammation of the membranes lining the chest cavity or surrounding the heart.
  7. Evidence of renal or kidney disorder.
  8. Signs of a neurologic disorder: seizures, psychosis, or acute loss of memory, occurring without any other explanation such as drug toxicity or injury.
  9. Hematologic abnormalities: specific deficits in various types of blood cells.
  10. Immunologic disorders: false-positive reaction to the test for syphilis, positive LE cell test, presence of anti-DNA or anti-SM antibodies. Any one of these constitutes an immunologic disorder.
  11. Abnormal level of antinuclear antibodies.
To prepare for your second medical visit, in which you will learn the results of your laboratory work, you should update your list of symptoms and include changes you've experienced in the symptoms, reactions to the medicines you were given, and all of your questions. You should be feeling much better, because at your first visit your doctor will have prescribed medication for the relief of your symptoms.

When you are faced with a potentially serious disease, or when you are feeling very ill, it's hard to concentrate on what a physician is saying. For that reason, it is a good idea to take a friend with you for this important second visit, so that both of you can understand what is being said. It is also a good idea to bring a tape recorder. The two, a friend and a tape recorder, can prove to be invaluable.

Your physician will want to know if your medication has been effective, and if you have had any side effects. She'll tell you the results of your laboratory tests. Perhaps she will order more tests.

Do not pretend to understand your doctor when she uses words that are unfamiliar to you. Ask her what these new words mean. Ask her to use words that you understand. Do not let yourself be intimidated by your own lack of knowledge or your fears of doctors or diseases. If you don't have a tape recorder, write down the laboratory results and the physician's explanation of them. Ask, "And how would I look this up at the library?" Explain that you want to read about your illness. Ask, "Does everyone call this medicine and this disease by these names, or are there other names that lay persons use?" It is important that your physician listen to you, believe you, and address each of your concerns.

If your doctor cannot establish a diagnosis of lupus according to the accepted eleven criteria, she may continue your medication and simply wait to see what develops. She may say you have "a connective tissue disorder," which is a very general term for what way or may not be lupus. That is, of course, frustrating for you, but often symptoms do not point clearly to a diagnosis. Although it is natural to want immediate answers, sometimes they aren't forthcoming, because the tests are not always definitive.

Physicians don't want to label your illness prematurely, treat you for an illness you don't have, or subject you to a false diagnosis that may remain attached to your medical record forever.

Whatever your diagnosis, you may choose to get a second opinion. If your physician is not a specialist in lupus, ask for a consultation with a specialist.

Your local lupus society has a list of physicians who specialize in the treatment of lupus. Get the list, and then ask health professionals in your area, such as nurses or medical social workers, "What doctor would you want for your loved ones, if one of them had the symptoms I have?"

You want a rheumatologist to go over the test results, because rheumatologists specialize in treating patients with lupus. Afterwards, you may continue with that specialist, or seek a different one. If you have severe kidney involvement, you will be referred to a nephrologist, In addition, you may need to see other physicians for specific problems. With neurological disorders you'll be referred to a psychiatrist or neurologist. If you have mouth or jaw pain, see a dentist with experience in treating lupus, because lupus patients' jaws sometimes develop changes that cause great pain until treated by a dentist who knows about this problem.

A few lupus patients develop vasculitis, an inflamation of blood vessels. This can occur in your eyes, kidneys, brain, abdomen, and almost anywhere in your body. If you have eye problems, vasculitis, or are taking the drug Plaquenil you need to regularly consult an opthalmologist who can visualize "cotton wool spots" on the back of your eyes which are caused by vasculitis.

You have a right to the best medical care you can find physicians have chosen their vocation because they want to help people live well. They want to save lives. Basically, they care deeply about their patients' and they have spent hard years learning to do their jobs to the best of their abilities. With a chronic disease, you want to have confidence in your physician, and know that the two of you can work well together. It's going to be a long, difficult road, which is infinitely easier when you travel it with someone you trust.

In the following fourteen chapters, women and men with lupus tell their own unique stories of their struggles with both the symptoms and the disease itself.

* In the past almost all physicians were men. Male pronouns were used when referring non-specifically to men or women. Now many physicians are female, and in this book female pronouns will be used to designate male and female physicians.

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