Crystal Springs resident Shan Copeland suffers from pseudotumor cerebri, a condition in which pressure inside the skull increases for no obvious reason. Copeland credits Medicaid with saving her life
Before she went under the knife for life-saving surgery, Shan Copeland sat down with her 9-year-old son and talked about the possibility that Mommy might not come home.
“When I say I was scared, I was scared,” she said. “The only thing I could think about was, ‘If anything happened to me, what’s going to happen to my children?’ Nobody can love your children like you do.”
But she never would have been able to have that life-saving surgery if she hadn’t had Medicaid.
A single mother of three, Copeland, 28, has had multiple surgeries relating to Pseudotumor cerebri, a condition that causes fluid to gather in her brain. The condition can lead to a multitude of issues, including debilitating migraines and blindness.
In 2015, Copeland began having trouble focusing on her job in furniture sales. She exercised regularly and maintained a healthy diet, but her memory was beginning to wane.
“If someone came and said something to me, I couldn’t remember it,” she said. “It really started to get to me and I couldn’t do my job effectively.”
Without insurance, Copeland tried to ride out the pain. Eventually, she went to one Jackson area hospital where she was told she likely had a complicated migraine and was discharged.
The pain persisted, however, and she later went to St. Dominic’s Hospital in Jackson where she was admitted for two weeks while doctors ran a series of tests, including a lumbar puncture.
She was diagnosed with Pseudotumor cerebri and sent home. However, Copeland said the puncture hit a nerve, and she couldn’t walk for a month because of the pain.
Copeland returned to her job with a doctor’s excuse but was fired shortly thereafter.
Unemployed, in constant pain, and with a handful of prescriptions, Copeland quickly fell behind on her bills.
Without insurance, Copeland was paying more than $500 a month in prescription costs. One medication was $364 a month. Another cost $67 a month. Another was $122 a month.
“That’s money on top of money,” she said. “Before I actually got the Medicaid, I was paying for my medications out of pocket. Just imagine, and then I don’t have a job? I had to let the bills go. I’m on the verge of actually losing (my house). I lost my car trying to pay bills that I really couldn’t afford to pay for. That really put a strain on me.”
Unable to work, Copeland said there were multiple times where she had to choose between buying her medications or providing for her children.
“One year it came down to school clothes,” she said. “This (prescription) is $364. So what do I do? ‘Do I let them wear hand-me-downs, and I buy shoes and pay for the medicine? Do I not pay for the medicine? It got to a point one time where I was like, ‘I know I need my medicine, but my kids need this.’ I had to choose and I’m the type of person, I’m going to choose my children.”
Copeland has two boys and a girl. Jayden is 9 years old, Caleb is 7 and Kennedi is 5. Jayden can “shoot a shot from half court” while Caleb is her “miracle baby.” Kennedi is “bright and bubbly.”
Copeland’s close friend, Corbaryl King, said he watched Copeland struggle to function each day.
“Sometimes it would be brutal. She couldn’t walk and she was in so much pain,” he said. “I couldn’t imagine me going through that. If it was something I could have done to prevent that, I would have but it wasn’t in my power to do anything about it. She’s strong. She’s been through a lot.”
No matter how she was feeling, King said Copeland’s top priority was taking care of her children.
“She’s a good mom, she tries to go out of her way to make sure they’re well taken care of,” he said.
Copeland’s children were impacted by the change they saw in their mother. Jayden, a straight-A student, suddenly saw his grades begin to slip.
Copeland said she tried to talk to her son about it but it made him too depressed. Because of the financial constraints, the young family had to move in with Copeland’s parents. The move was a hard adjustment.
“I’ve been on my own for years and now I’m 28 and have to move back in with my parents,” she said.
For more than two years, Copeland struggled to find relief from the pain.
To drain the fluid in her brain, she underwent an optic nerve sheath fenestration, a process of cutting the membrane around her optic nerve in her left eye.
Copeland had several lumbar punctures, but doctors said she would need surgery to correct the problem, inserting a lumbar-peritoneal shunt into her back to drain the excess fluid.
Still uninsured, she said the hospital required a down payment of $2,100.
“They wanted me to have surgery to actually save me but I couldn’t afford that $2,100 upfront cost” she said.
With no other options, Copeland went to a family member to ask for help. Through a friend of a friend, Copeland learned about the Mississippi Health Advocacy Program in Jackson, which helped her get on Medicaid.
She had surgery last September. Medicaid covered the cost. Copeland was discharged and sent home and was optimistic about her recovery. Then, in October, she got an infection. The pump was leaking fluid.
Her temperature shot to 105. She said she couldn’t eat, couldn’t move.
“It felt like my life was slipping,” she said.
Copeland required a second emergency surgery to remove the implant. Medicaid covered that surgery as well.
“If it had not been for Medicaid, when that first surgery went wrong and I got the infection, I could have died,” she said. “Had I not had Medicaid … I probably wouldn’t have made it, I probably wouldn’t be here.”
The shunt was removed, and Copeland then had a peripherally inserted central catheter, or PICC line, inserted. Medicaid paid for a nurse to come to Copeland’ s home to check on the PICC line as well as a nurse to stay with her at home to keep her out of the hospital.
“I could be home with my kids and wouldn’t have to be in the hospital for eight weeks,” she said. “That was all thanks to Medicaid.”
Roy Mitchell, executive director of Mississippi Health Advocacy Program, said Medicaid is beneficial for mothers like Copeland.
“It is hard to be a mom and deal with a serious health issue, when you are uninsured and worried about your health,” Mitchell said. “Medicaid allows parents to meet their health needs while continuing to take care of their kids without worrying about medical bankruptcy. When parents have health insurance, their children are more likely to be insured, too. It works both ways. And children are healthier and do better in school when they are able to get checkups and doctor visits.”
In June, Copeland had a third surgery to replace the LP shunt. Without it, Copeland is certain she would “be blind or I’d be somewhere dead.”
“Now I can afford the medication with no problem, now I can go to the doctor and I don’t have to worry about ‘Are they going to approve this? Am I going to be able to do this because I don’t have the money for it?’”
Copeland said she knows there is a negative perception surrounding Medicaid but she believes it saved her life.
“A lot of people say their tax dollars are paying for people who are lazy and don’t want to get up and work … but think about the people who can’t get up out of that bed and go to work; you’re saving lives. It’s not all about people trying to be benefits queens and kings and stuff like that. Don’t look at it like that. Look at it as ‘I’m paying to help someone save their life.’”
Copeland said she’s pain-free and now looking to the future. She hopes to move back in her home and open a teen center for young people in the area.
“We’re in the recovery process and I’ve got high hopes,” she said. “I try to be optimistic and not pessimistic about the situation. I don’t try to think about the negative, just think about moving forward.”