Posted by on Apr 14, 2015 in Blog | 11 comments

What’s Wrong With Me?

“The therapist thought a ‘nose job’ would improve my self-esteem,” Amanda Greene remembers.  He could never have guessed that the suggestion of surgery would finally result in a diagnosis of the cluster of strange symptoms that she was experiencing. amandagreeneAt 15, Amanda bruised easily and was constantly tired. “After school, I needed to nap before I did my homework.  While many of my friends had jobs, I took naps.” The doctors couldn’t find anything wrong, “I failed over 10 mono tests,” she recounts.   Thinking Amanda was just making up her symptoms, her physician sent her to group therapy.   “The therapist said I’d be prettier with a ‘new nose’.”  Only when lab work (ordered in preparation for the surgery) returned at abnormal levels, did her healthcare team investigate further.  Even then, “it took another 4 months to figure out that I had lupus.” For Amanda, “the diagnosis was a relief.  My stepbrothers had been calling me a hypochondriac.  I was glad to know that ‘it was not in my head.’”

Life with Lupus

Amanda’s been on her “lupus journey” for 33 years now. During that time, she required extra time to complete her college education, “I was on the 6-year college plan” enduring a few professors “who thought I looked fine so ‘how could I be so sick?’” Lupus also impacts her ability to make a living. “Due to lupus, I work from home part-time.  I’m unable to work a traditional 40-hour a week job.”  However she has been able to incorporate one of her healthy coping mechanisms into her work.  She is one of the creators of the web site and social network,  Its mission is to share “what fans can accomplish through music.”   “Music is a big part of my warrior tool kit as it helps me deal and cope with pain, as well as assists me in shifting emotions and moods.”

What Is Lupus?

In lupus, like other autoimmune disorders, the body’s immune system cannot discriminate between foreign particles–bacteria and viruses–and its own healthy tissues.  The immune system creates antibodies to attack healthy tissues, causing inflammation and pain as well as damage to skin, joints and a variety of organs.  “My symptoms vary from acute chronic pain and inflammation to skin rashes, mouth sores and gastrointestinal distress,” Amanda relates.  She also suffers from “painsomnia” a condition in which the severity of pain impairs sleep. Lupus is predominantly an illness of women; in fact, nine out of ten lupus patients are women.  Most are diagnosed between the ages of 15 and 45.  Women of color are two to three times more likely to be diagnosed than Caucasians.   Yet men and people of all ethnicities can get lupus. The causes of lupus are both genetic and environmental.  Lupus runs in families and siblings have a 20 times more likely to get lupus than the rest of the population.  Environmental factors include exposure to the Epstein Barr virus (that causes mononucleosis), herpes zoster virus (which causes shingles) and the cytomegalovirus (which weakens the immune system).

“Smiles are contagious. Lupus is not.”

Lupus is a serious, though non-contagious conditionDiagnosis involves having four or more of the following symptoms:

  • a butterfly-shaped rash across the cheeks and nose (malar rash)
  • sun and light sensitivity (photosensitivity)
  • oral or nasal ulcers; arthritis of multiple joints
  • chest pain when breathing deeply (caused by inflammation of the lining of the heart or lungs)
  • kidney disease
  • neurological disorders, seizures and psychosis
  • blood disorders such as a decrease in the number of red (anemia) and/or white blood cells (leukopenia, and lymphopenia.)

A blood test that narrows down the diagnosis is called the ANA (for antinuclear antibodies) test. If you have a negative ANA test, lupus is more likely to be ruled out as a diagnosis. In addition to the above symptoms, other common symptoms of lupus are fatigue, fever, painful joints, hair loss and headaches.   Periods of remission and symptom flares are part of life with lupus.  Moreover, people with lupus are at higher risk than the general population for lymphoma, breast, lung, cervical and endometrial cancer.  The lupus advocacy symbol is a butterfly, which is the shape of one symptom of lupus, a butterfly-shaped rash across the cheeks and nose.

Learning to Cope

cape in LAOver 16,000 new cases of lupus are reported each year in the US.  Coping with chronic ‘but you don’t look sick’ conditions can be challenging.  “Learning about Lupus is a great idea but often the ‘medical jargon’ and information available can be overwhelming.  Finding online and local support groups can be a critical part of learning to live with Lupus,” Amanda believes.  To that end, she has found to be a valuable website.   She also belongs to several Facebook groups and is co-moderator (@lalupuslady) of a Twitter Chat called #LupusChat that meets bi-monthly on Sundays at 3pm ET. “I have discovered that a positive attitude helps me.  I strive to find the flair of living with Lupus and “fighting (or avoiding) the flare” – switching it up and shifting my perspective helps me cope with the chronic issue on a daily basis.” “I am not defined by Lupus, but Lupus is a part of who I am.  I have brown eyes and I have Lupus.”