The Cutest Dramatist...

So as I type, Maia is playing her heart out.  But, alas just a few short minutes ago, she was beside herself with grief and I really wasn't sure how to handle it.  It seems that she just noticed there is something wrong with me.  I think she has always recognized that my gait is different and that I require help walking sometimes, but she never equated that as aberrant.  I don't really know why today was any different: her friends have pointed out that I walk differently before or asked about the walker/crutches.

Of course there is no right way to handle this problem.  My solution (at least right now) is to keep her talking about her feelings, which at 5 are pretty hard for her to articulate.  My goal is to keep her talking so if there is something I can do, I will know. And as a parent, who wouldn't want to keep an open dialogue?

Lupus Awareness Month

May is Lupus Awareness Month

Here is a fact sheet I snagged from the Lupus Research Institute  

Lupus Fact Sheet

Overview

• Lupus is a chronic, complex and prevalent autoimmune disease that affects more than 1.5 million Americans.
• Lupus is difficult to diagnose because its symptoms come and go, mimic those of other diseases, and there is no single laboratory test that can definitively identify the illness.
• Early detection and treatment is the key to a better health outcome and can usually lessen the progression and severity of the disease.

Mainly a Woman’s Disease

• Lupus is one of America’s least recognized major diseases. While lupus is widespread, awareness and accurate knowledge about it is lacking.
• More than 90% of lupus sufferers are women, mostly young women between the ages of 15 to 44.
• Women of color are two to three times more at risk for lupus than Caucasians.

Serious Consequences

• In lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body’s own tissues and organs — the kidneys, brain, heart, lungs, blood, skin, and joints.
• Lupus is a leading cause of premature cardiovascular disease, kidney disease and stroke among young women.

Three Types of Lupus

Although "lupus" is used as a broad term, there are several different types of lupus: systemic lupus erythematosus (SLE), cutaneous affecting only the skin and drug-induced lupus triggered by a few medications.

• Systemic lupus erythematosus (SLE) is the form of the disease that most people refer to when they say “lupus.”  The word “systemic” means the disease can affect many parts of the body — including the kidneys, brain or central nervous system, blood and blood vessels, skin, lungs, heart and joints. Skin involvement occurs in up to 80% of patients.

Under- and Mis-diagnosed

Lupus is very difficult to diagnose. No single test can definitively determine whether a person has lupus — but several laboratory tests of blood and urine along with clinical assessment can help make a diagnosis.
Signs and symptoms that suggest systemic lupus include:

• Painful or swollen joints
• Fingertips and/or toes become pale or purple from the cold or stress
• Sores in the mouth or nose
• Low blood count
• Red rash or color change on the face, across the cheek or bridge of nose
• Unexplained fever for several days
• Chest pain associated with breathing
• Protein in the urine
• Extreme fatigue — feeling tired all the time
• Sensitivity to the sun
• Depression, trouble thinking, and/or memory problems
• Unusual hair loss, mainly on the scalp

Difficult to Treat

• Lupus is usually treated by a rheumatologist who specializes in treating diseases that affect the joints, muscles and bones. Specific manifestations of lupus, such as heart and kidney disease, may be treated by other types of physicians specializing in that field.
• Since lupus is highly individualized, and no two cases are exactly alike, the treatment also varies depending on the symptoms and needs of the patient.
• Anti-inflammatory drugs, anti-malarials, and steroids, such as prednisone, are used to treat lupus. Cytotoxic chemotherapies similar to those given in the treatment of cancer are also used to suppress the immune system in lupus patients.

Reason to Hope

• While there are no known root causes or cure, the progress of recent discoveries and treatments in development is encouraging.
• In addition to funding studies paving the way for treatments to suppress the disease, the Lupus Research Institute initiated the Distinguished Innovators initiative to support research specifically aimed at finding the causes of lupus and driving towards prolonged drug-free remission — a cure.