Living with Lupus
I was diagnosed with Lupus last December 2005. My initial reaction was of pure shock since I do not know anything about it but I had a friend from college who died from it. I read a book that we have at home entitled "You and Your Health."
I had all the symptoms of lupus like the rash on my nose, weakened joints, oral ulcers and thinning hair. I felt more depressed as I read that lupus has no known cure yet and that its chronic and fatal. The thought of an early death and leaving
my two kids was more than I could bear...
"It is a matter of life and death, a road either to safety or to ruin. Hence it is a subject of inquiry which can on no account be neglected". - The Art of War by Sun Tzu
Living with lupus for 2 years I learned how to cope and fight this treacherous enemy. It has been a constant struggle but it made me a stronger and yes, a better person. I feel that I have a responsibility to share every information that I could acquire about this disease.
I don't want others to dwell in the dark and fear this disease only because they don't know anything about it. I will continually educate myself about lupus and share whatever knowledge I will acquire about it.
Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues.
No one knows exactly what causes the body to attack its own tissues. A person may be born with a certain genetic makeup that affects how the immune system functions or makes him or her at risk for lupus. A combination of factors can trigger the autoimmune process, some of which may affect one person but not another.1
Exposure to ultraviolet light, usually from sunlight, is known to trigger the disease process and symptom flares. Hormonal factors are linked to autoimmune disease, though the link is poorly understood. Some research shows an increased risk of lupus with higher levels of estrogen. But a separate study did not find evidence that the hormones estrogen or prolactin taken for hormone replacement therapy or birth control, or taken previously for fertility treatments, increased the risk of lupus.2 A more recent study showed that women with stable lupus had no increased risk of symptom flares from taking birth control pills.3
Smoking may increase the risk of getting lupus and may make the disease more severe. Some medications are suspected triggers of lupus and symptom flares. Some infections are suspected triggers. Some people who have cytomegalovirus (CMV), parvovirus (such as fifth disease), and hepatitis C infections eventually develop lupus. The Epstein-Barr virus has been linked to lupus in children.
Chemical exposure has been known to trigger lupus. Suspected chemical toxins include richloroethylene in well water and silica dust. Hair dyes and straighteners, linked to lupus in the past, are no longer considered to be lupus triggers.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include: Fatigue, Fever, Weight loss or gain, Joint pain, stiffness and swelling, Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose, Skin lesions that appear or worsen with sun exposure, Mouth sores, Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon, Shortness of breath, Chest pain, Dry eyes, Easy bruising, Anxiety, Depression, and Memory loss.
There is currently no way to prevent lupus (systemic lupus erythematosus, or SLE). But people who smoke may be more likely to develop lupus. Avoiding smoking and perhaps other tobacco products may decrease your risk of developing lupus.
Your treatment will be tailored to control symptoms and slow the damage to your organs. Medications can help -- but so can stress reduction and a healthy lifestyle.
Your treatment will depend on how severe symptoms are, whether organs are involved, and if your daily life is affected.
It may take some time for a patient to be definitively diagnosed with lupus. During this time, patients may be confused or frustrated by the seeming inability of the doctors they visit to confirm the diagnosis. They may ask, "Why don't the doctors know?" Part of the difficulty, both for the patient and the doctor, rests in the fact that the diagnosis may seem to be hiding in a forest of confusing, vague, or changeable symptoms. A patient may express some of the following sentiments or frustrations:
"My symptoms are bizarre -- they're here today and gone tomorrow."
"I can't put a handle on my symptoms. I'll have one today and a totally new one tomorrow."
"No one seems to believe me. My family thinks it is all in my head and they want me to see a psychiatrist. I am beginning to wonder if it is all in my head."
Before a diagnosis is made, many of a patient's primary needs are emotional. A lupus patient will, in all likelihood, be on intimate terms with her or his symptoms long before their cause is known. Realistically, she or he is the best authority on these symptoms. A patient may feel frustrated if, after describing symptoms, others do not respect her or his knowledge or do not share the conviction that something is wrong. If the doctor, family, or friends are unsupportive, the patient's fear, anger, and sense of isolation will only increase. These feelings add stress, which in turn can exacerbate the disease.
Health professionals can help ease these feelings by showing empathy during this difficult time and by reassuring the patient that the symptoms are real and merit serious attention. In addition, treating the patient as a whole person, and not just as a subject with a disease, can be immensely valuable in establishing a trusting relationship with the patient. Such a relationship will help the patient speak freely about symptoms or concerns that she or he may have been unwilling to discuss previously.
Inflammation caused by lupus can affect many areas of your body, including your:
Kidneys - Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. A blood test called serum creatinine level is used to monitor kidney function. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and weight gain.
Central nervous system - If your central nervous system is affected by lupus, you may experience headaches, dizziness, memory problems, behavior changes, even seizures.
Blood and blood vessels - Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
Lungs - Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy) that can make breathing painful. You may also be more susceptible to a noninfectious form of pneumonia.
Heart - Lupus can cause inflammation of your heart muscle (myocarditis and endocarditis), your arteries (coronary vasculitis) or heart membrane (pericarditis). Having lupus also greatly increases your risk of cardiovascular disease and heart attacks. Controlling high blood pressure and high blood cholesterol, not smoking, and getting regular exercise are essential to help reduce the risk of heart disease.
Infection - People with lupus are vulnerable to infection because both the disease and its treatments , corticosteroid and cytotoxic drugs, in particular , affect the immune system. And in a vicious cycle, infection can bring on a lupus flare, increasing the risk of infection even more.
Cancer - Having lupus appears to increase your risk of cancer , especially non-Hodgkin's lymphoma, which affects the lymph system; lung cancer; and liver and bile duct cancers. Immunosuppressant drugs that are sometimes used to treat lupus also can increase the risk of cancer.
Bone tissue death (avascular necrosis)- This occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is commonly affected, although avascular necrosis can occur in other bones as well. Avascular necrosis can be caused by lupus itself or by high doses of corticosteroids used to treat the disease.
Pregnancy complications - Women with lupus have an increased risk of miscarriage. Some women with lupus experience a flare during pregnancy. Lupus increases the risk of high blood pressure during pregnancy (preeclampsia) and preterm birth.
Inflammation caused by lupus can affect many areas of your body, including your:
Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. A blood test called serum creatinine level is used to monitor kidney function. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and weight gain.
Central nervous system. If your central nervous system is affected by lupus, you may experience headaches, dizziness, memory problems, behavior changes, even seizures.
Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy) that can make breathing painful. You may also be more susceptible to a noninfectious form of pneumonia.
Heart. Lupus can cause inflammation of your heart muscle (myocarditis and endocarditis), your arteries (coronary vasculitis) or heart membrane (pericarditis). Having lupus also greatly increases your risk of cardiovascular disease and heart attacks. Controlling high blood pressure and high blood cholesterol, not smoking, and getting regular exercise are essential to help reduce the risk of heart disease.
Infection. People with lupus are vulnerable to infection because both the disease and its treatments , corticosteroid and cytotoxic drugs, in particular , affect the immune system. And in a vicious cycle, infection can bring on a lupus flare, increasing the risk of infection even more.
Cancer. Having lupus appears to increase your risk of cancer , especially non-Hodgkin's lymphoma, which affects the lymph system; lung cancer; and liver and bile duct cancers. Immunosuppressant drugs that are sometimes used to treat lupus also can increase the risk of cancer.
Bone tissue death (avascular necrosis). This occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is commonly affected, although avascular necrosis can occur in other bones as well. Avascular necrosis can be caused by lupus itself or by high doses of corticosteroids used to treat the disease.
Pregnancy complications. Women with lupus have an increased risk of miscarriage. Some women with lupus experience a flare during pregnancy. Lupus increases the risk of high blood pressure during pregnancy (preeclampsia) and preterm birth.
Even if you take medicine for lupus, you may find that there are times when the symptoms become worse. Learning to recognize that a flare is coming can help you take steps to cope with it. Many people feel very tired or have pain, a rash, a fever, stomach discomfort, headache, or dizziness just before a flare. Steps to prevent flares, such as limiting the time you spend in the sun and getting enough rest and quiet, can also be helpful. Learn to recognize that a flare is coming. Talk with your doctor. Try to set realistic goals and priorities. Limit the time you spend in the sun. Maintain a healthy diet.
Develop coping skills to help limit stress.
Get enough rest and quiet. Moderately exercise when possible. Develop a support system by surrounding yourself with people you trust and feel comfortable with (family, friends, etc.).
Take steps to care for your body if you have lupus. Simple steps can help you prevent lupus flares and, should they occur, better cope with the signs and symptoms you experience. Try to:
1.)Get adequate rest.
- People with lupus often experience persistent fatigue that's different from normal tiredness and that isn't necessarily relieved by rest. For that reason, it can be hard to judge when you need to slow down. Many experts recommend eight to 10 hours of sleep a night and naps or breaks during the day as needed. Friends and family members need to understand and respect your need for rest.
2.) Be sun smart.
- Because ultraviolet light can trigger a flare, wear protective clothing such as a hat, long-sleeved shirt and long pants, and use sunscreens with a sun protection factor (SPF) of at least 15 every time you go outside, even if it's just a quick trip to the mailbox. Be sure that your ears, scalp and the backs of your hands are protected. Avoid tanning beds and stay out of the sun entirely when it's strongest, from 10 a.m. to 4 p.m. Because fluorescent and halogen lights also can emit UV rays and thus aggravate lupus, you may need to wear sunscreen and protective clothing indoors or use plastic devices that block UV emissions from indoor lights.
3.) Get regular exercise.
- Exercise can help you recover from a flare, reduce your risk of heart attack, help fight depression and promote general well-being. Exercise as much as your body allows , aim for 30 minutes of activity most days of the week. You'll likely feel fatigued and not up to exercising sometimes, and that's OK. Rest when you need to. Time outdoor activities so that you avoid the sun when it's most intense, and if you're having a flare, stay out of the sun entirely.
4.) Don't smoke.
- Smoking increases your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
5.) Eat a healthy diet.
- A healthy diet emphasizes fruits, vegetables and whole grains. Sometimes you may have dietary restrictions, especially if you have high blood pressure, kidney damage or gastrointestinal problems. And although no specific foods have been shown to cause or worsen lupus, it's best to avoid any food that seems to make your symptoms worse.
Coping with lupus can be stressful. People with lupus often experience anxiety, depression and frustration because the disease is unpredictable. Knowing you have a serious disease can also be scary. To help you cope with lupus, try to learn all you can about lupus. Write down all the questions you have about lupus and ask them at your next appointment. Ask your doctor or nurse for reputable sources of further information. The more you know about lupus, the more confident you'll feel in your treatment choices. Gather support among your friends and family. Talk about lupus with your friends and family. They may have questions about lupus and how it affects your life. Answer their questions honestly. Explain ways your friends and family can help out when you're having flares. Lupus can be frustrating for your loved ones because they usually can't see it and you may not appear sick. They can't tell if you're having a good day or a bad day unless you tell them. Be open about what you're feeling so that your friends and family know what to expect.
Take time for yourself. Cope with stress in your life by taking time for yourself. Use that time to read, meditate, listen to music or write in a journal. Find activities that calm and renew you.
Connect with others who have lupus. Talk to other people who have lupus. You can connect with other people who have lupus through support groups in your community or through online message boards. Though your friends and family love you, sometimes you'll feel as if they can't quite understand what you're feeling. Other people with lupus can offer unique support because they're facing many of the same obstacles and frustrations that you're facing.
references: MayoClinic.com
Medline Plus
niams.nih.com
I had all the symptoms of lupus like the rash on my nose, weakened joints, oral ulcers and thinning hair. I felt more depressed as I read that lupus has no known cure yet and that its chronic and fatal. The thought of an early death and leaving
my two kids was more than I could bear...
"It is a matter of life and death, a road either to safety or to ruin. Hence it is a subject of inquiry which can on no account be neglected". - The Art of War by Sun Tzu
Living with lupus for 2 years I learned how to cope and fight this treacherous enemy. It has been a constant struggle but it made me a stronger and yes, a better person. I feel that I have a responsibility to share every information that I could acquire about this disease.
I don't want others to dwell in the dark and fear this disease only because they don't know anything about it. I will continually educate myself about lupus and share whatever knowledge I will acquire about it.
Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues.
No one knows exactly what causes the body to attack its own tissues. A person may be born with a certain genetic makeup that affects how the immune system functions or makes him or her at risk for lupus. A combination of factors can trigger the autoimmune process, some of which may affect one person but not another.1
Exposure to ultraviolet light, usually from sunlight, is known to trigger the disease process and symptom flares. Hormonal factors are linked to autoimmune disease, though the link is poorly understood. Some research shows an increased risk of lupus with higher levels of estrogen. But a separate study did not find evidence that the hormones estrogen or prolactin taken for hormone replacement therapy or birth control, or taken previously for fertility treatments, increased the risk of lupus.2 A more recent study showed that women with stable lupus had no increased risk of symptom flares from taking birth control pills.3
Smoking may increase the risk of getting lupus and may make the disease more severe. Some medications are suspected triggers of lupus and symptom flares. Some infections are suspected triggers. Some people who have cytomegalovirus (CMV), parvovirus (such as fifth disease), and hepatitis C infections eventually develop lupus. The Epstein-Barr virus has been linked to lupus in children.
Chemical exposure has been known to trigger lupus. Suspected chemical toxins include richloroethylene in well water and silica dust. Hair dyes and straighteners, linked to lupus in the past, are no longer considered to be lupus triggers.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include: Fatigue, Fever, Weight loss or gain, Joint pain, stiffness and swelling, Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose, Skin lesions that appear or worsen with sun exposure, Mouth sores, Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon, Shortness of breath, Chest pain, Dry eyes, Easy bruising, Anxiety, Depression, and Memory loss.
There is currently no way to prevent lupus (systemic lupus erythematosus, or SLE). But people who smoke may be more likely to develop lupus. Avoiding smoking and perhaps other tobacco products may decrease your risk of developing lupus.
Your treatment will be tailored to control symptoms and slow the damage to your organs. Medications can help -- but so can stress reduction and a healthy lifestyle.
Your treatment will depend on how severe symptoms are, whether organs are involved, and if your daily life is affected.
It may take some time for a patient to be definitively diagnosed with lupus. During this time, patients may be confused or frustrated by the seeming inability of the doctors they visit to confirm the diagnosis. They may ask, "Why don't the doctors know?" Part of the difficulty, both for the patient and the doctor, rests in the fact that the diagnosis may seem to be hiding in a forest of confusing, vague, or changeable symptoms. A patient may express some of the following sentiments or frustrations:
"My symptoms are bizarre -- they're here today and gone tomorrow."
"I can't put a handle on my symptoms. I'll have one today and a totally new one tomorrow."
"No one seems to believe me. My family thinks it is all in my head and they want me to see a psychiatrist. I am beginning to wonder if it is all in my head."
Before a diagnosis is made, many of a patient's primary needs are emotional. A lupus patient will, in all likelihood, be on intimate terms with her or his symptoms long before their cause is known. Realistically, she or he is the best authority on these symptoms. A patient may feel frustrated if, after describing symptoms, others do not respect her or his knowledge or do not share the conviction that something is wrong. If the doctor, family, or friends are unsupportive, the patient's fear, anger, and sense of isolation will only increase. These feelings add stress, which in turn can exacerbate the disease.
Health professionals can help ease these feelings by showing empathy during this difficult time and by reassuring the patient that the symptoms are real and merit serious attention. In addition, treating the patient as a whole person, and not just as a subject with a disease, can be immensely valuable in establishing a trusting relationship with the patient. Such a relationship will help the patient speak freely about symptoms or concerns that she or he may have been unwilling to discuss previously.
Inflammation caused by lupus can affect many areas of your body, including your:
Kidneys - Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. A blood test called serum creatinine level is used to monitor kidney function. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and weight gain.
Central nervous system - If your central nervous system is affected by lupus, you may experience headaches, dizziness, memory problems, behavior changes, even seizures.
Blood and blood vessels - Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
Lungs - Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy) that can make breathing painful. You may also be more susceptible to a noninfectious form of pneumonia.
Heart - Lupus can cause inflammation of your heart muscle (myocarditis and endocarditis), your arteries (coronary vasculitis) or heart membrane (pericarditis). Having lupus also greatly increases your risk of cardiovascular disease and heart attacks. Controlling high blood pressure and high blood cholesterol, not smoking, and getting regular exercise are essential to help reduce the risk of heart disease.
Infection - People with lupus are vulnerable to infection because both the disease and its treatments , corticosteroid and cytotoxic drugs, in particular , affect the immune system. And in a vicious cycle, infection can bring on a lupus flare, increasing the risk of infection even more.
Cancer - Having lupus appears to increase your risk of cancer , especially non-Hodgkin's lymphoma, which affects the lymph system; lung cancer; and liver and bile duct cancers. Immunosuppressant drugs that are sometimes used to treat lupus also can increase the risk of cancer.
Bone tissue death (avascular necrosis)- This occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is commonly affected, although avascular necrosis can occur in other bones as well. Avascular necrosis can be caused by lupus itself or by high doses of corticosteroids used to treat the disease.
Pregnancy complications - Women with lupus have an increased risk of miscarriage. Some women with lupus experience a flare during pregnancy. Lupus increases the risk of high blood pressure during pregnancy (preeclampsia) and preterm birth.
Inflammation caused by lupus can affect many areas of your body, including your:
Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. A blood test called serum creatinine level is used to monitor kidney function. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and weight gain.
Central nervous system. If your central nervous system is affected by lupus, you may experience headaches, dizziness, memory problems, behavior changes, even seizures.
Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy) that can make breathing painful. You may also be more susceptible to a noninfectious form of pneumonia.
Heart. Lupus can cause inflammation of your heart muscle (myocarditis and endocarditis), your arteries (coronary vasculitis) or heart membrane (pericarditis). Having lupus also greatly increases your risk of cardiovascular disease and heart attacks. Controlling high blood pressure and high blood cholesterol, not smoking, and getting regular exercise are essential to help reduce the risk of heart disease.
Infection. People with lupus are vulnerable to infection because both the disease and its treatments , corticosteroid and cytotoxic drugs, in particular , affect the immune system. And in a vicious cycle, infection can bring on a lupus flare, increasing the risk of infection even more.
Cancer. Having lupus appears to increase your risk of cancer , especially non-Hodgkin's lymphoma, which affects the lymph system; lung cancer; and liver and bile duct cancers. Immunosuppressant drugs that are sometimes used to treat lupus also can increase the risk of cancer.
Bone tissue death (avascular necrosis). This occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is commonly affected, although avascular necrosis can occur in other bones as well. Avascular necrosis can be caused by lupus itself or by high doses of corticosteroids used to treat the disease.
Pregnancy complications. Women with lupus have an increased risk of miscarriage. Some women with lupus experience a flare during pregnancy. Lupus increases the risk of high blood pressure during pregnancy (preeclampsia) and preterm birth.
Even if you take medicine for lupus, you may find that there are times when the symptoms become worse. Learning to recognize that a flare is coming can help you take steps to cope with it. Many people feel very tired or have pain, a rash, a fever, stomach discomfort, headache, or dizziness just before a flare. Steps to prevent flares, such as limiting the time you spend in the sun and getting enough rest and quiet, can also be helpful. Learn to recognize that a flare is coming. Talk with your doctor. Try to set realistic goals and priorities. Limit the time you spend in the sun. Maintain a healthy diet.
Develop coping skills to help limit stress.
Get enough rest and quiet. Moderately exercise when possible. Develop a support system by surrounding yourself with people you trust and feel comfortable with (family, friends, etc.).
Take steps to care for your body if you have lupus. Simple steps can help you prevent lupus flares and, should they occur, better cope with the signs and symptoms you experience. Try to:
1.)Get adequate rest.
- People with lupus often experience persistent fatigue that's different from normal tiredness and that isn't necessarily relieved by rest. For that reason, it can be hard to judge when you need to slow down. Many experts recommend eight to 10 hours of sleep a night and naps or breaks during the day as needed. Friends and family members need to understand and respect your need for rest.
2.) Be sun smart.
- Because ultraviolet light can trigger a flare, wear protective clothing such as a hat, long-sleeved shirt and long pants, and use sunscreens with a sun protection factor (SPF) of at least 15 every time you go outside, even if it's just a quick trip to the mailbox. Be sure that your ears, scalp and the backs of your hands are protected. Avoid tanning beds and stay out of the sun entirely when it's strongest, from 10 a.m. to 4 p.m. Because fluorescent and halogen lights also can emit UV rays and thus aggravate lupus, you may need to wear sunscreen and protective clothing indoors or use plastic devices that block UV emissions from indoor lights.
3.) Get regular exercise.
- Exercise can help you recover from a flare, reduce your risk of heart attack, help fight depression and promote general well-being. Exercise as much as your body allows , aim for 30 minutes of activity most days of the week. You'll likely feel fatigued and not up to exercising sometimes, and that's OK. Rest when you need to. Time outdoor activities so that you avoid the sun when it's most intense, and if you're having a flare, stay out of the sun entirely.
4.) Don't smoke.
- Smoking increases your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
5.) Eat a healthy diet.
- A healthy diet emphasizes fruits, vegetables and whole grains. Sometimes you may have dietary restrictions, especially if you have high blood pressure, kidney damage or gastrointestinal problems. And although no specific foods have been shown to cause or worsen lupus, it's best to avoid any food that seems to make your symptoms worse.
Coping with lupus can be stressful. People with lupus often experience anxiety, depression and frustration because the disease is unpredictable. Knowing you have a serious disease can also be scary. To help you cope with lupus, try to learn all you can about lupus. Write down all the questions you have about lupus and ask them at your next appointment. Ask your doctor or nurse for reputable sources of further information. The more you know about lupus, the more confident you'll feel in your treatment choices. Gather support among your friends and family. Talk about lupus with your friends and family. They may have questions about lupus and how it affects your life. Answer their questions honestly. Explain ways your friends and family can help out when you're having flares. Lupus can be frustrating for your loved ones because they usually can't see it and you may not appear sick. They can't tell if you're having a good day or a bad day unless you tell them. Be open about what you're feeling so that your friends and family know what to expect.
Take time for yourself. Cope with stress in your life by taking time for yourself. Use that time to read, meditate, listen to music or write in a journal. Find activities that calm and renew you.
Connect with others who have lupus. Talk to other people who have lupus. You can connect with other people who have lupus through support groups in your community or through online message boards. Though your friends and family love you, sometimes you'll feel as if they can't quite understand what you're feeling. Other people with lupus can offer unique support because they're facing many of the same obstacles and frustrations that you're facing.
references: MayoClinic.com
Medline Plus
niams.nih.com
I was healthy one day and sick as hell the next. Thank God I recovered just fine, and life is back to normal save the continuing malignancy screening (one possible cause for the abnormal tendency to clot) but lupus is one of the possibilities. So far I don't have enough of the symptoms to be diagnosed, and some of the tests are negative, some positive, so its anyone's guess...
My 32 yr old sister died of renal complications from lupus 15 yrs ago, and I fear this illness. No two cases are alike, and I feel blessed to have had so many years of good health even if it turns out to be lupus. Besides, so much more is known now compared to then, and your grasp on this subject is impressive. I know apheresis is investigated as a possible treatment to keep symptoms at bay with many autoimmune diseases, including this one. This is new. It sounds like your attitude is amazing, I will keep you in my thoughts and prayers. Thanks for sharing.