To Nicole Tasby, lupus is a blessing and a curse.
She says this because to look at her, one does not know her body is sick. She says her body is sick but she is not sick. She refuses to give in to the condition. She has it. It does not have her.
When she tells people what she’s been through, few can fathom just how much she has overcome to be standing before them looking as normal as one would expect a professional woman to look in this day and age.
Each and every day is a challenge, but she thanks God through her lupus.
There are days when she can’t get out of bed; days when the very thought of the act is impossible. Days like this, she stays in bed, but she’s still fighting. She’s excited and thankful that she’s awake and aware, despite the temporary failure of her body.
Tasby wasn’t diagnosed until age 21 after years of seeing doctor after doctor to try to get to the root of why a seemingly healthy young woman would be so sick, so tired and in so much pain so much of the time.
When she first found out she had lupus, she took it as death sentence, because everyone she knew with the condition was almost dead. Their skin looked burned, they were physically and mentally debilitated, and some even using illicit drugs to cope while selling their prescriptions on the side.
Less than a week after her diagnosis, she decided she wanted to live and not just exist .She decided she was not going to go out without a fight. Lupus was not going make her a victim.
Tasby’s form of lupus is called SLE, Systemic Lupus Erythematosus. Simply put, lupus is an autoimmune disease affecting the body’s ability to properly and intelligently defend itself against pathogens. The body sees itself as a pathogen and thus creates abnormal antibodies that attack certain critical system within the body. SLE is one of the more aggressive forms of lupus and if not properly treated can be terminal.
Because of lupus Tasby has been struck with rheumatoid and osteoarthritis. She also has sciatica and lumbar spinal stenosis.
SLE presents more often in women than men. In women, pregnancy causes lupus to go in remission in most cases. However, the slightest exposure to pathogens can reverse this process. A urinary tract infection -undetected because of her high tolerance for pain until 48 hours after the fact- tragically caused Tasby to go into pre-term labor with her son, Nicholas Leone Tasby Steele. He was born alive on May 22 at 7:54 p.m. and took his last breath at 7:59 p.m.
According to medscape.com “SLE increases the risk of [sic] preterm birth. Prognosis for both mother and child are best when SLE is quiescent for at least 6 months before the pregnancy and when the mother’s…renal function is stable and normal or near normal.”
Tasby met this criterion for optimum gestation with her lupus. However, it takes very little to kick off a negative autoimmune reaction. She hadn’t had a UTI since her teens.
She and her family were shocked and horrified that something so simple and so treatable resulted in the death of the child they had been so thrilled to have coming into the world.
While seeking an answer for her condition, Tasby was told she had everything from bursitis to fibromyalgia to rheumatoid arthritis. She was put on a vast array of drug therapies that did nothing to permanently end her symptoms. She had one doctor who disputed the arthritis diagnosis because she was so young. It was heartbreaking for him, because he didn’t want to believe someone so vibrant could be crippled by such a condition, which can in and of itself prove terminal.
She saw over 20 specialists from age 16 to 21 when she was finally diagnosed with SLE. Since then, she has been on and off of about 9 different treatments, dropping many because of the side-effects of the drugs.
One drug required another to treat the side effects which required another to counteract those side-effects. Tasby became tired of the merry go round and stopped taking any medication at all for about 2 years.
Tasby and many of her family members believe lupus has contributed to a lifetime of mental and emotional health issues including anxiety, major depressive disorder, panic disorder and bipolar disorder. The drugs prescribed in the various regiments don’t abate these symptoms and often aggravate them to the point of requiring hospitalization.
So not only does lupus physically affect her, it reaches into every aspect of her life. It affects her in her sleep, at work and at play every day all day.
Looking at her, meeting her, one sees a happy, stable, comfortable and capable woman who has embraced her life and lives to the fullest. She is a hero.
Tasby is not fighting lupus alone. Her family is fighting with her. Lupus will not take her easily. She has it. It does not have her. And that is how she gets through each day.
Written by: Brandi Tasby