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Living Well with Lupus
is something I have tried to do for many years now.

HOWEVER What I didn't realize was that hiding how sick I REALLY was each time I went to my DR. forced him to be under the impression I was stable (because I didn't want to be put back on steroids and anti-malarials) -
SEE BEV in 1988 on Steroids/Antimalarials and thus when I applied for CPP Disability I was turned down twice as the only info my Dr. had was that he thought I was stable because I wasn't complaining to him (for fear of meds again). SO although the key to Living well with Lupus is to not dwell on the pain and symptoms it's necessary for you to tell your Dr. EVERY symptom you have
EVERY time you go see one. (Write them all down).

THE KEY TO SUCCESS IS DON'T EXCESS!

* The LUPUS SONG I wrote and recorded
"The Key"

OTHER LUPUS LINKS

* Arthritis Society

* LUPUS CHAT/MSG. BOARD

* DAILY STRENGTH WEBSITE

WHAT IS LUPUS?

Lupus is a chronic, inflammatory disease that can affect any organ or system in the body. Although the cause is still uncertain, it is known that Lupus is an auto-immune disease which means something goes wrong with the body's immune system, the system that protects and defends the body against disease and illness. The immune system is comprised of antibodies that attack germs and viruses. In Lupus, however, the immune system becomes overactive and out of control, often attacking healthy tissue. The resulting inflammation gives rise to the symptoms that
characterize Lupus. Approximately 50,000 Canadians are living with Lupus today. Lupus is a member of the auto-immune family of diseases which includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes, scleroderma and others.
Lupus is NOT a form of cancer, is NOT related
to AIDS, and is NOT contagious. Lupus is a different disease for each person. Signs and symptoms tend to come and go. There are times when the disease goes into remission or "quiets down". At other time Lupus becomes active or "flares up". Each person develops a unique combination of symptoms ranging from mild to severe and life threatening.

The more common symptoms of Lupus are:

1.Pain in the joints of the hands, arms, shoulders, feet, legs, hips or jaw which may move from joint to joint and may be accompanied by swelling, redness and heat

2. A red rash across the upper cheeks
and over the bridge of the nose

3. An unusual and excessive reaction to sunlight

4. A red scaly rash on the face, scalp, ears, arms or chest

5.Small, usually painless, sores found on the moist lining of the nose and mouth

6.Chest pain that worsens when breathing in or lying down

7.Weight gain and swelling of the feet and legs which is caused by decrease in kidney function

8.Seizures or severe mental illness

9. A decrease in the number of red or white blood cells or platelets

10.Presence of certain factors in the blood, specifically the LE cell, anti-native DNA auto antibodies, anti-Sm auto antibodies or a positive test for syphilis. (A falsely positive syphilis test indicates an abnormality in the immune response. There is no relationship between lupus and venereal diseases.)

11. Presence of antinuclear antibodies (ANA) in the blood

Living WELL with Lupus    Controlling flares is the key in the day to day management of Lupus. Measures must be taken to avoid the triggers. Sun exposure, excessive fatigue, uncontrolled stress, poor diet, and lifestyle habits - such as smoking or excessive alcohol use - are factors that can contribute to Lupus flares. Lifestyle changes may be necessary to void these triggers.    Steps to be taken may include:
Avoidance of excessive sun exposure and regular application of sun screens. Regular exercise to prevent muscle weakness and fatigue. Eat a well balanced diet and avoid fad diets. Obtain adequate restful sleep Alleviate the effects of stress with support groups, member organizations, concealing, and talking with family and friends.  Eliminate negative habits such as smoking, excessive alcohol, not taking prescribed medication in correct amounts, and postponing regular medical check-ups.
        Learn about Lupus and it's management.
        Consult a physician about birth control and the timing of pregnancy, (I have had three sons after I was told not to have any). Use appropriate judgment about complimentary therapies.
        Be positive, have hope, and find joy in your life..    Most people can lead normal, fulfilling lives if they follow the instructions of their doctors, take their medication(s) as prescribed, and seek medical attention for unexpected side effects of a medication or for new symptoms.    New Research brings unexpected findings each year. The scientific investigation into the cause, cure, diagnosis and treatment of Lupus during the last decade by researchers around the world, including Canada, has been significant.    Extensive research is continuing today. In many treatment centers, patient information is collected and stored in data banks. Analysis of this information is providing insight into the disease and the tools to make treatment choices.    Greater awareness, better diagnostic techniques, new medications, and improved treatment regimes bring hope and the promise of a cure to all those afflicted by Lupus.    80% to 90% of persons with Lupus can now look forward to a normal life span.

LUPUS CANADA

LUPUS FOUNDATION OF AMERICA

LUPUS FOUNDATION OF ONTARIO

Lupuscanada.com

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