The Last Thing I Expected

Marcia Frost
5 min readJul 18

Hope For My Health Came From Selena Gomez

The set up for my infusion.

As a writer who has interviewed sports and entertainment personalities for many years, I don’t get easily impressed with someone because they are famous. Selena Gomez did something that may change the course of my life through showing her pain, not her celebrity.

It’s been three years since it all started. I woke up during the night with burning and itching red dots on my ankles and wrists. They continued to spread but stopped with my legs and arms.

I was already under the care of a rheumatologist for Undifferentiated Connective Tissue Disease (UCTD). The simplest explanation for that disease is that tests and symptoms were positive for Lupus, but I also presented with the problems of Sjogren’s, Rheumatoid Arthritis, and Scleroderma. It was impossible to say I just had Lupus, but there weren’t enough symptoms to believe I had all four diseases.

It’s been three years since it all started. I woke up during the night with burning and itching red dots

I made an appointment the day after the rash appeared with my rheumatologist. It probably would make more sense for most people to go to a dermatologist, but I felt my autoimmune symptoms were getting worse and this might be related. The rheumatologist thought it was vasculitis and sent me to a dermatologist to confirm with a biopsy.

While the dermatologist initially agreed with the diagnosis, it was not that simple. From there, I had nearly two years of skin, finger, and nasal biopsies, a trip to Northwestern Medical Center to see more doctors, and a whole pile of biopsy results that were inconclusive. The only thing all of the labs agreed on was that it was some type of inflammatory disease. Two of the reports did said “possibly lupus.”

I was getting physically sicker and emotionally exhausted. I began to do my own research. Everyone I came in contact with and everything I read said that there was one infusion drug that was the best thing for helping the symptoms of Vasculitis. My rheumatologist said it was a dangerous drug. I said I wanted another opinion and the second doctor said it would wipe out my immune system and make me sicker. She said she’d never give it to a patient that didn’t have confirmed Vasculitis.

Marcia Frost

A lifestyle journalist forced to slow down sports, travel, health, music & food coverage when chronic illness changed her life & career.