How Moving to a Small Town Helped Me Stretch My Healthcare Dollars
Key takeaways:
Rogue Edwards, 37, has lupus and was recently diagnosed with epilepsy.
Even with health insurance, she can’t afford all the treatments her doctors recommend.
Moving to a smaller town helped Rogue save money and gave her a better quality of life.
My Bill of Health is a series of stories about the financial strain of healthcare. To share your story, email patientstories@goodrx.com.
Rogue Edwards has dealt with pain and fatigue for most of her life. But she says her lupus diagnosis caught her by surprise.
Growing up, Rogue remembers her family calling her “lazy” and telling her to “tough it out.” As an adult, she says doctors dismissed her symptoms and told her to lose weight.
She relied on energy drinks and the stimulant Adderall she took for attention-deficit hyperactivity disorder (ADHD). But by the time she turned 30, the fatigue was overwhelming.
“I was tired of being tough,” she says.
Rogue also has polycystic ovarian syndrome (PCOS), so she visited a women’s health clinic to check for a hormonal imbalance. After running tests, the doctor asked her, “How are you treating your lupus?”
Rogue was stunned. None of her other doctors had mentioned lupus or tested for it. But the diagnosis made perfect sense to her.
Managing the cost of treatment was challenging. And the bills piled higher after her husband developed symptoms of long COVID. Then, in 2023, Rogue was diagnosed with epilepsy, which she says is related to her lupus.
To save on healthcare costs, Rogue has made difficult choices. That included moving to a town with a lower cost of living. And she still can’t afford all the treatments she needs, so she has to set priorities.
Even with insurance, affording healthcare is a challenge
Rogue, who’s 37 and now lives near Enid, Oklahoma, works remotely as a medical coder. Her job includes health insurance, but it doesn’t pay for all her care. She says tests like MRIs come with hefty copayments, if they’re covered at all.
And there’s a $4,000 annual insurance deductible. “It might as well be $4 million,” Rogue says.
Her husband works as a contract laborer with no benefits. After he developed long COVID, the couple drained their savings paying his medical bills.
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Rogue has a side business making and selling folk art, which helps pay for her healthcare. Her husband works when he’s well enough. But they still struggle with medical debt.
Moving to a smaller town paid off in big ways
As Rogue’s health expenses skyrocketed, she says housing costs in her hometown of Oklahoma City were rising, too. Rogue and her husband owned a mobile home, but it became unlivable after two pipes burst during a cold snap. “There were literally mushrooms growing on the wall,” she says.
Apartments in the city cost more than the couple could pay. In desperation, they searched in smaller towns, found an affordable rental house, and snapped it up.
“I was scared,” Rogue says. “I had never lived so far away from my family.”
She worried about being outsiders in their new community. But instead, she found acceptance and support. After she had a seizure, neighbors brought meals. When she had an episode in a grocery store, the store owner stayed with her until she recovered.
“I’m able to have more of a life here,” she says. “There’s more of a social support system.”
Affording healthcare is easier in her new community, too.
Rogue says health professionals might charge the same, but they’re more willing to work out payment plans. If she’s too sick to come for an appointment, they waive cancellation fees or offer telehealth visits. There’s also a sliding-scale clinic that offers dental, mental health, and basic medical services.
Making tough choices about treatment and prescriptions
Even after the move, Rogue says she still can’t afford all the treatments her doctors recommend.
Right now, her main goal is treating her epilepsy. That means paying for care from a neurologist. She stopped seeing the rheumatologist who was treating her lupus because she can’t pay for two specialists.
Rogue says her doctors have been supportive. They work with her to determine which treatments she needs most. When she urgently needed an MRI and an electroencephalogram (EEG), her doctor recommended they be covered as emergency care.
Rogue says affording her prescriptions sometimes requires a balancing act. Several of her medications are inexpensive. These include Keppra (levetiracetam) for seizure control and Zestril (lisinopril) to help lower her blood pressure. She takes over-the-counter medications such as ibuprofen for pain and inflammation.
She also budgets for a small amount of medical cannabis every month. She says it takes the edge off the pain and allows her to relax.
She rotates between prednisone, a steroid, and Toradol (ketorolac), a prescription-strength nonsteroidal anti-inflammatory medication. Both these medications cost more, so Rogue limits how much she takes.
She also manages her health with good nutrition. She has switched to an anti-inflammatory diet that includes mostly raw foods.
What it feels like to have an invisible disability
Looking at Rogue, a stranger wouldn’t guess the toll her chronic illnesses take.
“It genuinely feels like my bones are being pulled apart at all times,” she says. “There is not a day, there is not a moment where I do not have pain.”
She loves horseback riding, weight lifting, and storm chasing. Now, she says, every adventure involves choices. Is it worth the pain? Will her health issues put other people at risk?
As a result, Rogue has cut back on many activities she once enjoyed. She says people don’t always understand when she can’t participate. “If they could just be in my body for 10 minutes,” she says.
A trip to the city can exhaust her for days, and a recent brush with the flu took months of recovery. Sometimes, she has to decide whether she has the energy to stand up and wash the dishes. “There are a lot of checks and balances” with lupus, she says.
Life with ‘a pet monster’
Rogue says the lupus diagnosis terrified her at first. But she learned to stay present with her illness instead of running away.
“I treat lupus like my pet monster,” she says. “I can’t get rid of him. He’s my pet. But some days, he does have to be put in a cage for a little bit.”
She relies on her friends, husband, and online spiritual community for support. “They have saved my life,” she says. “Without them, I wouldn't be strong enough to do this.”
Some of her supporters have fur. Her mixed-breed dog, Fenrir, developed epilepsy before Rogue did. Managing the dog’s seizures helped her cope with her own. And three orphaned kittens found her last fall, as she dealt with depression after the epilepsy diagnosis. Caring for them forced her to get out of bed and keep going. She kept one kitten, named Little Foot.
Rogue says her epilepsy is well managed with medication. But the lupus will never go away. At some point, she says, she’ll need immunosuppressive therapy to help manage her symptoms. Her goal is to delay that treatment as long as possible.
“I refuse to be a victim,” she says. “I don’t allow the bad times to overshadow the good times.”
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