* WOOD SHOP DESIGNS A Memorial to my Dad
* BLESS THE CHILDREN
* WOLF BITTEN
* FIVE WAYS TO MINIMIZE STRESS
* SEVEN SUCCESSFUL SECRETS
* ANGRY ABOUT YOUR PROBLEMS?
* SELF-HONESTY ~ To Thine Own Self Be True
If someone were to tell you that they had been bitten by "the Wolf", would you know what they meant? The Latin word, Lupus, meaning "Wolf" was given to the disease in the 18thcentury as the red rash known exclusively to Lupus was thought to resemble the wound of this wild animal's bite. While this rash which can appear on any part of the body is actually a symptom of "Discoid", as opposed to "Systemic" Lupus, it can also appear in patients with the latter form of the illness. Discoid Lupus is limited to skin disease while Systemic Lupus destroys organs, entire body systems, joints, muscles, and other connective tissues. However, these two manifestations of the same disease often over-lap and while one form is primary, most patients experience conditions of both. In later years, the butterfly became our international emblem, symbolizing the facial rash which is also an exclusive symptom of Lupus. This bright red discoloration forms the pattern of a butterfly over the patient's nose, spreading its "wings" across both cheeks.
I must also wonder if you have ever even heard the words "Systemic Lupus Erythematosus"? If so, then chances are, either you or someone very close to you has the disease. Very few have heard the word "Lupus" and fewer still know much about it. Yet, this progressive and potentially fatal disease is more common than Multiple Sclerosis, Cystic Fibrosis, Sickle Cell Anemia, and Leukemia, combined. An estimated 1.4 million Americans suffer from SLE, not to mention all those in other countries around the world. Even so, Lupus suffers more from lack of awareness than any other major disease.
Although SLE has been quite simply defined in theory, the actual presentations and experiences of Lupus patients are as individual as fingerprints, resulting in the widest array of symptoms known to any illness. The number and variety of auto-antibodies which can appear in SLE are unsurpassed by any other disease. These facts, combined with the lack of professional awareness and sufficient laboratory testing, makes Lupus an extremely difficult disease to diagnose. In addition, there is a real shortage of physicians who are well-educated in recognizing the many masks the "Wolf" can wear. They therefore put entirely too much emphasis upon the person's lab tests, which are often quite deceiving in Lupus patients. While blood tests are useful in diagnosing SLE in some patients, many others have severe disease involvement with insignificant lab results. The presence of auto-antibodies is known to fluctuate, which was once thought to represent the level of disease activity. However, it has been realized that a Lupus patient can be extremely ill and still present with unremarkable blood test results. This phenomena is probably due to the fact that the disease itself can cause false-positive and false-negative laboratory results. This is especially true in individuals with the Lupus Anticoagulant Syndrome. For these patients, symptoms are often different from those considered to be common to the disease and usually present with normal or near-normal lab tests, with exception to high levels of Antiphospholipids. In such cases, a decision is eventually made by a differential diagnosis, in which the likelihood of all other diseases is ruled out. Ideally, physicians should rely more heavily on the patient's report of symptoms, especially those which would be difficult to feign, and the consistent recurrence of repetitive complaints. While Lupus can damage any part of the body and its effects are different from patient to patient, SLE is usually a self-repetitive disease, meaning each individual experiences recurrences of the same symptoms.
In short, Lupus is a disease in which the body's immune system becomes over-active, producing mass quantities of antibodies which are designed to fight against foreign agents entering the body. However, in such cases, these natural defenses go awry and attack the body's healthy cells, thus labeled "auto-antibodies", meaning "against the self". The disease process consists of inflammation within and surrounding organs, blood vessels, nerves, and connective tissues. The varied symptoms can come and go over a long period of time, may occur simultaneously or independently, and mimic many other illnesses. Depending upon the system(s) affected, relapses (also knows as "flares") can become more frequent and last for longer periods of time. Internal damage often worsens with each subsequent flare, eventually leading to permanent organ damage, functional disabilities, and even death.
While SLE is technically categorized as: 1) an auto-immune disease; 2) a collagen disorder; 3) a connective tissue disease; and, 4) an inflammatory disorder, it is known by its hosts as "The Wolf", "The Great Imitator", and "The Invisible Disease". Lupus is widely referred to as the Imitator because the majority of its symptoms are "borrowed" from other illnesses. While there are a few signs and symptoms exclusive to Lupus, even these are found in less than 40% of all known case histories. Take for instance, the "butterfly rash" which appears in no other disease, is experienced by only 15% of Lupus patients.
Photosensitivity, (an adverse reaction to UV exposure) is among the listed criteria for diagnosing Lupus, and yet this peculiarity occurs in a mere 30% of patients with SLE. Systemic Lupus, as opposed to Discoid Lupus, has been labeled as the "Invisible Disease" due to the fact that most patients without skin involvement "appear" to be healthy individuals. With exception to those experiencing rashes, lesions, scaring, and hair loss, the detrimental affects of Lupus occur internally — quietly and unseen — increasing the person's frustrations in diagnosis and general human understanding.
Most Lupus patients experience symptoms three to tens years prior to a proper diagnosis and treatment, and are often labeled "neurotic", recommended for psychological evaluation. Many, like myself, suffer permanent organ damage before the proper diagnosis is finally made. Five thousand Americans die from SLE each year, and yet one out of three deaths could be prevented with earlier diagnosis and treatment. Ninety percent of its victims are females during child-bearing age, resulting in males being tested for Lupus even less often that woman. Though the cause of the disease is not known, definite factors have been identified which exacerbate the symptoms. Among these triggers are environmental factors such as sun, flourescent lighting, temperature changes, and common chemical fumes like hair sprays, perfumes, and household cleaners. Additional elements include physical and emotional stress, and infections. Childbirth is among the leading causes of heightened disease activity. While all symptoms of this mysterious disease cannot be listed here, some of the most commonly shared are as follows:
joint pain muscle weakness a persistent physical exhaustion which is out of the ordinary from what one would expect from any given activity Sores in the mouth and nose Headaches Cognitive dysfunctions, such as memory impairment, disorientation, and thought-process disturbances Unexplainable rashes anywhere on the body low-grade fever nausea and vomiting chest pain, due to inflammation around the lungs and heart swollen and painful lymph glands Kidney involvement hair loss frequent infections
The most commonly-shared symptoms of these listed are Fatigue (90%), Muscle Weakness (80%), Cognitive Dysfunctions (75%), and Joint Pain and Stiffness (50%). Aside from these, the presentation of symptoms in SLE is as diverse as the people who have it. Lupus is by far the most misunderstood of all major illnesses. Should you or someone you know experiences such problems, a physician should be asked to test for Connective Tissue diseases. If you are ill and still running through the medical maze trying to receive a definite diagnosis while being told there is nothing wrong with you, don't give up! You know your own body better than anyone else, so please don't allow yourself to submit to self-doubt and apathetic responses from your doctor. Keep searching until you find a competent physician who will listen and follow-up on all your symptoms. Prior to a proper diagnosis, the vast majority of lupus patients have been through the humiliation, despair, and anger of being made to feel like hypochondriacs, not only by physicians, but by our own friends and family. We have become secretive about the seriousness of our symptoms and have known the utter aloneness of both social and emotional isolation. I wish to give the assurance that you are no longer alone. I spent many years and thousands of dollars, shuffled in and out of exam rooms while being told I was a perfectly healthy young woman. I eventually went blind in one eye before I was finally diagnosed with and properly treated for Systemic Lupus. Fortunately, I was forced to learn how to overcome my sense of impending doom, self-pity, and anger, and find a way to live happily regardless of life's circumstances.
In light of my experiences with the disease, the medical community, and with the spiritual recovery which affords me peace of mind, I have built a web site to help other chronically-ill people. It is my hope that this virtual home will bring you compassion, laughter, fun, and camaraderie.
VISIT ISSYMISSY'S HOUSE OF FINE REPUTE!
For personal use of any material contained in this publication, permission may be requested by contacting
