Laura Keeney used to be a storyteller. Her brain was a vault of information that stored hundreds of anecdotes and facts which she used to cover the aerospace and aviation beat for the Denver Post from 2014-16. She reported on everything from Mars’ atmosphere to Frontier Airlines.
Now, Keeney is lucky if she remembers what she had to eat 24 hours ago.
Memory loss is just one of symptoms Keeney suffers due to lupus, which she was diagnosed with over two years ago. Confusion, loss of balance, muscle spasms, neuropathy, headaches, joint swelling, and fatigue are some of the others. Tasks such as getting up and down stairs or walking through a hallway without falling over prove difficult. Often, Keeney will have to crawl from room to room because she doesn’t have the strength or balance to walk.
“I’m someone that has this huge vocabulary of words who has been a lover of learning my whole life,” Keeney said from her couch at her Denver apartment where she and her partner Carson live. “Being a reporter you have to do so much research and store so much knowledge in your head. I used to do so much research, and I loved it. Now I can’t remember what I did yesterday. It’s really frustrating.”
Lupus is a ruthless autoimmune disease that results from the immune system — the body system that fights infections — malfunctioning and attacking healthy tissue. When you have lupus, your body can’t tell the difference between normal and diseased tissue, so it attacks everything.
Lupus affects around 150 million people worldwide. Doctors call it the “cruel mystery” because what causes lupus is still unclear, and while there are effective treatments there is no known cure.
It’s also a notoriously difficult condition to diagnose because lupus mimics so many other diseases. There’s no test for Lupus. A blood test won’t even give you a firm diagnosis. It doesn’t show up the same in everybody either. Sometimes lupus can focus on the heart. Other times it focuses on the kidneys or the liver. In Keeney’s case, it focuses the brain.
Keeney was diagnosed in May, 2017 after two months of testing and two liver biopsies. She can’t pinpoint an exact date when she began to feel symptoms but thinks moving into a new apartment north of downtown Denver that had mold triggered the disease. Doctors say it’s a possibility but will never know for sure.
Treating lupus requires lots of trial and error. Certain medications work for some people but don’t work for others. Keeney was getting infusions through an IV, but those treatments proved unsuccessful. Next she tried oral chemotherapy, but that just knocked her out. She’s searched and searched for something that will put her lupus in remission but to not avail. In 2018 Keeney went on medical leave from her job at Lockheed Martin and hasn’t been able to return.
“One day I’ll be OK,” Keeney said. “The next day I won’t remember what my addresses is.”
Seeking more clarification on her disease, Keeney went to see her first neurologist in March. She got a grim diagnosis. Keeney had neurolupus, a type of lupus that affects your brain. An MRI revealed white lesions — the spots doctors look for when diagnosing multiple sclerosis — on her brain, a signal that her nerve fibers were dying because they’re not getting proper blood supply.
“My brain is basically dying,” Keeney said.
Living with lupus consumes you. When Keeney leaves her apartment, it’s always with a walker or wheelchair. Doctors visits, medical bills, insurance paperwork, and the strict medication schedule Keeney is on which requires her to take certain pills at all hours of the day occupy most of her life.
She’s found refuge in basketball.
Keeney started attending Nuggets games in 2013 but her love for the sport started at a young age. Growing up in Detroit, she’d go to Pistons’ games with her dad and in high school was a manager who kept stats for every sports team. In Denver, she found an instant connection with former Nugget Kenneth Faried who’s mom had lupus.
Nuggets games have replaced concerts for Laura and Carson. When the two started dating six years ago they’d frequent shows, but now that’s a task that proves incredibly difficult with Keeney’s wheelchair and the symptoms that come with lupus. Still, pulsating lights and rock concert-like sounds at Nuggets games sometimes force Keeney to wear ear plugs and pop migraine medicine throughout the night while at her seat.
Keeney estimates that she only missed around 12 home games last season, the first year that her and Carson were season ticket holders. The games provide an escape and retreat from the living hell of lupus and a distraction from the fight that she’s up against daily.
“I’m basically stuck in the house all day. And so these games are fun because it’s like, ‘Oh, we’re going to get out of the house tonight. We’re going to go do something fun,’” Keeney said. “It’s definitely an escape and we love going because we both love this team and it’s something we can do together. I don’t see us ever giving the tickets up.”
She finds familiarity and consistency at Nuggets games. Keeney knows she’ll be sitting in the same spot every night next to the same fans in Pepsi Center’s wheelchair-accessible seating with the same security guard, Coco, who greets her every night. But it’s still a struggle. Keeney won’t leave her house or do anything a day-and-a-half to two days before a game just so she has the energy to go root on the Nuggets. And even then her body will sometimes tell her not to go, that it can’t handle a game that night. Keeney still pushes through because she feels the need to support her team. She’ll spend most of the following day in bed recovering from the night before.
“You have to learn to adapt to it,” Keeney said. “And it’s been a whole new thing that we’ve had to try to figure out and it changes daily.”
After visiting her neurologist in March, she was referred to the neurology specialists at UCHealth (Anschultz Medical) who felt that there was “something else” happening neurologically. Keeney underwent a slew of tests including a spinal tap, and had 18 vials of blood and 10 vials of spinal fluid drawn and sent off to the Mayo Clinic who partner with UCHealth. She’s currently awaiting more tests that were ordered back in April which will give the neurologists a clearer picture into what’s happening with her nervous system. Keeney recently switched insurance providers because her previous provider (COBRA) was charging her $1,400 per month after she left work. She’s now on Medicaid which only allows for a certain number of people per month to have those expensive tests done.
While waiting, her memory and neuropathy have gotten worse, to the point where sometimes Keeney can’t remember conversations she just had, her address, and phone number. She struggles to find the right words at times, which Keeney says as a former writer is the most frustrating aspect of her battle with lupus. Keeney was told in March that in five or six years she may not remember who her own child is (she has a 24-year-old living in Rochester, New York.) He’s also what keeps her going.
“He’s why I keep at it,” Keeney said. “There is no giving up. He’s counting on me.”
So far, the many treatments she’s tried haven’t worked. Immunosuppressants and biologics, which are frequently used to battle autoimmune diseases like lupus and some types of cancer, can fight back against some of the symptoms, but they also make the patient more susceptible to infections. Chemotherapy is also used to treat the disease, but the toxic drugs can make your hair fall out and could lead to more health problems. The hope is that with more testing, her doctors will soon be able to figure out a more direct and targeted way to treat her lupus.
Keeney’s hope is to have a somewhat normal daily life again, one where she and Carson can go to concerts, travel, be active, and do the things they used to do before the diagnosis changed their lives. Keeney was a firefighter in Illinois and New York and loved being outdoors, but her condition and the 80 pounds she gained due to her medication makes doing the activities that she used to center her life around impossible.
She continues to fight on her search for normalcy, something she’s found at Nuggets games.
“I’ll never be who I was before I started getting sick,” Keeney said. “But maybe there’s somewhere in the middle, some sort of compromise. Right now I’m trying to find consistency, and there’s consistency in basketball.”