Slowing down, looking up, surviving lupus
She’s a single mom to two teenage sons. She is an ambitious woman and has held positions in marketing and as a human resources director while comfortably supporting herself and helping to provide for her boys.
In the past, Rhonda would leave her 9 a.m. to 5 p.m. job, hustle downtown and spend the evenings fulfilling her passion of performing in local theater and acting in commercials. The go-go-go lifestyle was one that Rhonda thrived in and enjoyed.
She liked the nightlife, beautiful clothes, and maybe a drink to bring the day to a close.
Juggling a hectic schedule, responding to the demands of a high-stress career and mothering two children were challenges Rhonda could handle.
But it’s her recent experience with lupus that has her feeling frustrated. Rhonda was diagnosed with lupus in 1994, but it is these last two years that have really seized her. Pain, fatigue, skin rashes and flare-ups are a part of her life now, as are doctors visits and prescriptions.
“There’s no way I can work full time anymore,” she said. “It takes all of my energy to get myself some breakfast, showered, made up and dressed. By then I’m about ready to go back to bed.”
The time of her life where she wore a sassy pair of pumps and sipped cocktails with colleagues are behind her – for now. With lupus, she’s not sure what the future holds in terms of her ability to work 12 to 16 hours days ever again.
The disease has left her unable to work full time for more than a year. She is on disability and most her money is given to doctors or pharmacists because she has no health insurance.
Lupus affects each individual in a different way, when Rhonda’s lupus is flaring, her polymyositis acts up and limits her mobility. Polymyositis is a manifestation of Rhonda’s lupus. It is an inflammatory muscle disease causing weakness and pain. Weakness may cause difficulty walking, standing, and lifting objects. Sometimes Rhonda feels the pain in her shoulders and chest, but pain in her hips, thighs and calves is something she’s learned to tolerate every day.
This fall, for 13 days straight Rhonda could not leave her home. One of her sons – just 16-years-old — help her prepare meals. Jewish Family Services sent women over to help clean the house every two weeks.
“The physical limitations really played on my psyche,” she said. “Being isolated for so long gets depressing. I have a hard time accepting that I can’t always do the things I’d like to do.”
So how does she cope?
“My boys,” she said. “I feel rewarded when I’m around people I care about. My sons make me proud.”
She described Thanksgiving. Though she wasn’t able to cook her signature dishes, she directed the boys, who are resourceful and accustomed to working in the kitchen, on how to make her pecan pie and sweet potato pound cake.
Though Rhonda needed to modify her traditions, she glows when she talks about the three of them working together.
“One of my sons said, ‘Mom, I just really appreciate all the things you did to help me be the person I am today,’” Rhonda said. “That’s priceless.”
Rhonda said she still dreams of winning an Academy Award or sitting on Jay Leno’s couch for an interview. In the meantime, she’s going to share her story of lupus with others.
“Sometimes it’s funny. Sometimes it’s hear-wrenching, but it’s real life,” she said.
The lupus story is unique to each person who has it.
“I want to bring more awareness to lupus. People need to know about it, to know that just because I look healthy one day doesn’t mean I feel good; just because I can walk today doesn’t mean I could walk last week.”