She will not be ignored anymore: How Shawnee Shilling got her power back
Not every patient who needs opioids has a substance use problem, and not everyone who asks for painkillers is a “drug-seeking patient.” On paper, that seems quite obvious. But that’s not how it plays out in real life.
Take Shawnee Shilling, 48. More than a decade ago, she says, her ex-husband beat her blind—literally.
“I've had over 20 surgeries on my eyes to try to save my vision. As a result, they are extremely damaged. I mean very, very, very badly damaged.” And they often cause excruciating pain. “I had been stable on Vicodin for nine years. At that point, I only took them when I badly needed them—not every day.”
Then, suddenly, her medicine became unavailable, leaving her in tremendous pain. It happened earlier this year when she tried to switch practices; she didn’t feel her physician respected her, she says. Maybe it was the pain meds, maybe it was because Shawnee was a Medicaid recipient, maybe it was because she was blind or maybe it was just a personality clash. Whatever the reason, Shawnee just wanted a new doctor. She started putting out feelers.
When her original physician found out she was planning to switch, she refused to authorize any refills, Shawnee says. She needed to find another doctor to get her meds reinstated. She couldn’t.
Finding a provider who saw her—a person who legitimately needed pain medication—was a rough journey, she says. It sapped what little energy she had. “I would get up in the morning. I would have coffee and then I would just sit on the couch.” Even if she had the energy to go out, the pain in her eyes made it unbearable. “Bloodshot times a thousand. To the point I could barely lift my eyelids.”
She could not find relief. So many physicians won’t accept pain patients, she says. She felt dismissed. “It was as if they were annoyed that I was interfering with their day.”
More than once, she was told to go to a pain clinic for physical therapy. “You can’t do physical therapy for an eyeball,” she says—almost laughing.
Making the connection
Because Shawnee wasn’t taking the medicine, it showed up in her file and someone from Rocky Mountain Health Plans called to find out why. Shawnee explained her predicament, and she was connected with Kelly Cavanagh, an experienced RMHP case manager.
It’s Kelly who eventually helped her find physicians who would treat her pain and manage her medication. It was tricky even with Kelly’s help: Seek out a new doctor too many times, and it starts to look suspicious.
But Kelly found the care Shawnee needed at Marillac Clinic. “I cannot say enough good about Dr. Lovett and Dr. Shanahan. They are two amazing ladies. Absolutely amazing ladies.”
It’s Kelly, however, for whom she has the highest praise.
“She definitely deserves huge props. I mean, my case is very unique, very unusual and quite complicated. And my God, she went over and beyond the call of duty,” Shawnee says.
Her struggles didn’t begin with the search for a new physician, of course. That was just the most recent chapter. But this time, she found an advocate.
“Over the years I had slowly fallen through the cracks to the point where I was almost not even visible anymore. Kelly is the one who recognized that and pulled me out of that crack; she said ‘No, she will not be ignored anymore.’”
Kelly arranged for the referrals—and travel funds—necessary for an evaluation at the UCHealth Eye Center in Denver. She was treated well—respectfully—but the news was devastating: The doctors told Shawnee it was too late to repair the damage.
The only real hope she has to restore her vision is stem cell therapy, she says. But it's inaccessible. “There's no insurance that pays for it. Our government won’t fund it. I can't go to Germany to have it done. My golden ticket is floating around out there in space and it’s completely inaccessible.” The window is closing: As long as she has some vision—and right now, she can see very bright light—the stem cell treatment can help, she says. “But my vision goes away more every day. Every day I lose more.”
But, after months without her medications, she’s back on track. She’s doing her own research on the possibilities of stem cell therapy. Shawnee still stays connected to Kelly—she considers her a friend as well as an advocate. And, for now, a least, Shawnee’s a full partner in her own care.
But that doesn’t change what came before. “It was as though my entire life were being held for ransom and I was just a nobody. A number. Just another piece of flesh. I had no say-so. I had no control. I was powerless; doctors had all the power.”
She never wants that to happen again.