In spring of 2016, Jewel Medeiros was struggling with more stressors than ever before. She had left the job she loved. She finalized her divorce. She sent her daughter off to a prestigious (albeit pricey) university. And she had been diagnosed with Lyme disease and Raynaud’s syndrome. However, that was only the beginning of what would become a truly tragic tale.
After a relatively happy and healthy summer, Jewel started experiencing fatigue, weakness and weight loss. By fall, her new symptoms had taken their toll, and doctors discovered she also had polymyositis and scleroderma.
According to Jewel, the prognosis was vague and the decline was swift. The combination of her conditions quickly led to a resuscitation and intubation, followed by ventilation in the ICU at Rhode Island Hospital.
“Life as I knew it had ended,” she said.
Although non-mobile and non-verbal, she was still lucid – painfully aware of every complication that came her way (like troubles with her G-tube, an allergic reaction to an antibiotic and the need for a blood transfusion).
“I was feeling as if I may pass,” she said. “But I truly believe the visits from my sweet daughter, parents and siblings kept me alive.”
Four months later, Jewel was transported to Cura Health Rehabilitation Hospital, a considerable distance from her home, for an additional nine weeks. It was here that she received more heartbreaking news: Her eldest brother had died unexpectedly, and she would be unable to attend the funeral.
Understandably so, Jewel continued to face physical and emotional fragility. She was in and out of Rhode Island Hospital for the rest of the year… only to have the process repeat itself.
“The following spring, these diseases tightened their hold,” she said. “The hell began all over again.”
Jewel was intubated a second time, reliant on a ventilator once more. Her G-tube was reinserted, a port was protruding from her chest, and she was struggling with dysplasia and dysphonia (which she considers her most debilitating ailment). She then suffered another allergic reaction, which led to another blood transfusion – extending this hospital stay by three weeks.
In June 2018, she was released to a rehabilitation hospital, with respiratory therapies allowing her to be weaned from the ventilator (although the trach would remain).
“The PT, OT and speech therapists were some of the kindest folks I’ve known,” she said. “Their dedication to enhancing the quality of my life is forever in my heart.”
With their help, Jewel slowly started to regain her strength… just as her father was losing his. He died shortly after, undeniably devastating her.
“His death provoked a suffocating grief, eclipsing all that I had endured,” she said. “The cracks in my heart will never mend… and I am in a true state of melancholia.”
Surviving more trauma than one should ever have to, Jewel is currently living on her own in southern Rhode Island. She receives monthly IM steroid injections, bi-monthly IVIg infusions and bi-annual Rituxan injections, and she takes multiple medications to help keep her conditions under control.