By: Monica Victor
How Nazy found out she had lupus, her battle to tame the wolf and the last year of her life.
3.18.84 — 3.2.15
Two dates separated by a dash etched on her headstone. The first, the day she was born; the second, the day she breathed her last. And the dash in between — well, it represents the life that she lived. From childhood to adulthood to the invasion of the “Wolf”, the Lupus, that ended her life at 31.
Nazy had not been feeling well. She was always tired and in constant pain, her ankles and feet puffy and her joints pained from inflammation. There were days when her hands were so white they looked like all the blood had been drained from them. A tiny rash took up residence in just that one spot near her left eye and tiny bumps hid beneath her thick dark hair.
“I think I have lupus,” she nonchalantly said to me as she walked down the stairs of our apartment one morning back in June 2013. The cadence in her voice was natural and from the expression on her face, I couldn’t tell whether she was alarmed, devastated or worried. But she looked tired. Tired and spent from staying up all night doing research on the Internet that led to her self-diagnosis.
A visit to the doctor, numerous tests and blood work confirmed that she indeed had lupus —Systemic lupus, the more severe form of the disease. While the family agonized over the diagnosis in silence, Nazy didn’t sweat it. She always embraced challenges with grace and by nature was courageous, strong, and resilient.
In the ensuing days Nazy sprang into action and followed doctor’s orders to a T. She stayed out of the sun, exercised, tried to eat well, took her prednisone to keep the inflammation down and kept all her doctor appointments. She seemed to have had it under control. But as per the nature of the beast, one minute the lupus would be in remission and Nazy felt OK, the next minute the wolf within awakened and all hell broke loose.
Chest pains, shortness of breath, and incessant coughing were usually among the symptoms of a flare. All day and all night she’d spit out the white and foamy saliva that accumulated in her mouth. The doctor said fluid was accumulating around her heart and lungs. This autoimmune disease affects virtually every organ in the body.
One minute she was losing weight the next she was gaining. There were days when the rim of her fingernails were so black and blue they looked like someone had taken a hammer to them. She said it’s a condition called Raynaud’s disease — a condition common in lupus patients when they’re either cold or stressed out. The blood flow to these areas are reduced.
Her hair was beginning to thin out, due to either the tiny bumps in her scalp, stress or the medication she was taking. Sleeplessness and restlessness were a constant and getting out of bed was challenging. There were days she’d lie in bed motionless to avoid the pain that accompanied the slightest movement.
There were times when we’d ask her to get out of bed and come be with us but she just couldn’t. On some days she pretended to be OK just to appease us but little did we know how debilitating a beast lupus was. The angry wolf was preying on her, depleting her strength, eroding her courage to go on and even shaking her faith at times.
Music and dance and laughter used to give her life. But in the throes of pain she just smiled at even the funniest jokes with an, “I tell y’all don’t make me laugh. I cannot laugh. It hurts when I laugh.”
Lupus was stealing her joy. To say it broke our hearts to see her struggle, her constant pain and sometimes despair is an understatement.
It was a Saturday morning and Nazy had been released from the hospital the day before. She was given a laundry list of new medications that she now had to administer to herself. She had also found out that her aunt’s husband who had also been hospitalized had passed on. She sat on the couch in the living room and in true Nazy fashion read the side effects of each prescription before popping them. Then suddenly she got up from the couch and rushed towards my mom who was standing a few feet away, holding on to her tightly like someone hanging on for dear life. The fear in her face was palpable. I called 9-1-1.
The Request That Reduced Our Hearts To Bits
As she lay on the hospital bed and clenching my mom’s hand, I looked into her eyes and saw fear, confusion and despair. She was still freaking out as impending doom and gloom consumed her. Nazy thought she was dying so she made numerous requests. Among them, “Call everyone, tell them to come so I can say goodbye.” Our hearts broke. We thought it was the worse day of our lives.
The doctor reassured her, “We all have our day to die, but I assure you, today isn’t your day.” It wasn’t.
In the following days a bout of depression,(very common in lupus sufferers) ensued. Nazy was never the same. Consumed with sadness, hopelessness and uncertainty she tried to carry on with life as a lupie (someone who has lupus) but it was an uphill battle. As the battle continued, Nazy’s hospital stays became more frequent; pneumonia, bronchitis, fevers and infections, chest pains and shortness of breath were becoming the norm. The results of each biopsy showed more deterioration and inflammation to her lungs.
The pain and suffering intensified and the frustration mounted.
“Every time I tell the doctors I have a new symptom they’d put my hand down and say, ‘It’s the lupus, it’s the lupus.” She felt she wasn’t being heard so she penned all her symptoms and handed it to the doctor. He glanced it over and turned it into a paper boat. A few days later she was released from the hospital.
She left home again and never came back
It was a Saturday morning in February 2015. She had recently been released from the hospital after a flare-up. Despite taking her medication it appeared that she wasn’t getting better. And an ER visit was the next step. But as Nazy tried to get out of bed she was so sick that she could barely stand. We dialed 9-1-1.
As the EMT wheeled her away, our precocious 4 year old niece Makaela blurted, “Spoiler alert, spoiler alert! aunty Nazy is not coming back.” We were shocked at her words, however, three weeks later, we find out that little Makaela was right.
At the ER
“This is a very sick girl,” the doctor said as he endearingly rubbed her leg. “Her numbers are sicker than she looks. We’ll take her to the ICU.”
The Intensive Care Unit?! Oh God! She had been admitted to the hospital before but never in ICU. This was disconcerting. As the doctors words hit my ears, it felt like ice water running down the back of my neck. My heart thudded in my chest hard and my eyes like a well filled up.
“I always tell people it’s not how I look, it’s how I feel,” Nazy responded.
An infection was to blame, possibly because the doctors had not adequately treated the one she had about a week prior. About a week and a half later and now unable to walk, Nazy was transferred from the ICU to a rehabilitation facility to learn to walk again. In less than a week of being at the rehab, she had to be rushed to the ER.
“CHF!CHF!CHF!” My sister who was with her at the time said they frantically announced on the PA system – code for congestive heart failure. While in the ER, staring at us Nazy whispered, “I’m scared, what can the doctors do for me?”
With tears in my eyes and hope in my heart, I reassured her that the doctors would do everything they can to make her well again. But…
The last few months of Nazy’s life were traumatizing, heartbreaking and nail-bitingly brutal. And the last three days, well…
The Last Three Days…
“I feel like everything inside me is dead except my brain, it refuses to die,” Nazy often said. She was convinced that the problem was with her head and had been asking for an MRI for the longest. So the Saturday night before she passed the doctors honored her wishes. Turns out her head was fine. It was the cruel, troublesome wolf and its complications messing with her head. She thanked everyone — her nurses and doctors — and was unusually talkative that night.
We were hopeful — she was bouncing back!
But Sunday morning at about 8 am, a call from the hospital came in and the very contented Nazy from the night before was now intubated — on life support and unable to speak. How could this be?! The doctors said her lungs had collapsed. A machine was now responsible for her breathing.
Then Monday came. She held on as long as she could but around 1:15 pm…
Life hasn’t been the same and never will be.
Our hearts are broken but we take comfort in knowing that she is now resting in the arms of our Lord. In a place devoid of pain and sadness and Lupus. We lost our beloved but gained an angel. An angel guiding us through the despair. She gave her all in all that she did and wouldn’t rest until it’s done. So, we know she will carry her angelic role and will not tire until we’re all okay!
There may be no end to grief but we also know that love endures forever. When we find ourselves in a stupor of sadness, we conjure up the fond memories to help us through the despair.
While some people live with lupus for many years, within a year and a half of being diagnosed Nazy passed on. She was a very selfless person and remained ’til the end. I am convinced that Nazy knew she was dying but in an attempt to save us from the agony of her impending demise, she bore the burden alone.
In her quest to kill this wolf, hers and others, Nazy participated in a drug trial study to help find a cure. Although a cure wasn’t found in her lifetime, her efforts were not in vain. Join the fight. Help find a cure, help raise awareness, kNOw lupus.
Lupus is brutal. Although there is no cure for lupus yet, it can be controlled. Albeit no easy feat, there are many people with lupus who lead a full life. Like Felicia Leon — a very courageous and inspirational Manmay LaKay, who has mastered the art of coping with this debilitating disease.
Lupus is an autoimmune disease where the body attacks its own self. The symptoms vary from person to person and masquerade as other illnesses making it very difficult to diagnose. The cause is still a mystery. For more on Lupus visit Sante Nou.
About the Author:
Monica Victor is the executive producer of Manmay LaKay Magazine. She’s a copywriter, social media and reputations manager at a financial services company. Her writings there aim to help folks make good use of their dollars and sense. Her writings at Manmay LaKay Magazine seek to celebrate her fellow St.Lucians, empower and inspire folks to live their dream, raise awareness on the diseases that afflict us, connect all St.Lucians globally and to keep her St.Lucian heritage alive.
Connect with Monica:
Email: firstname.lastname@example.org or email@example.com.
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