SHAFER, Minn. — Laura Johnson shuffled over to her coffee pot, hunched over at a 90-degree angle. She gazed out the window, watching birds land on her deck.
The 62-year-old’s spine is twisted due to slow deterioration from multiple sclerosis.
Johnson, of Shafer, said she could function normally when she was taking opioids for the pain. But after being weaned off of the medication, she can hardly leave her house due to agony from regular movement.
Johnson is determined to give chronic pain patients a voice in the current opioid addiction crisis.
It’s not easy in the face of grim statistics. As many as 47,000 Americans died as a result of overdosing on opioids in 2017, according to the National Institute on Drug Abuse.
“I’m not a statistic,” Johnson said, choking back tears. “I’m a human being.”
Recommendations turned restrictions
She’s not sure how much more bone-grinding pain her body will take before she’s unable to walk.
Her problems began when the Centers for Disease Control and Prevention suggested limits for opioid prescriptions in 2016.
Retired pain specialist Dr. Albert Anderson said doctors treated them as absolute limits.
“The CDC realized they got out of control,” Anderson said. “The 2016 guidelines were very brutal.”
Minnesota recently put in place new regulations and guidelines to limit how many opioids most patients can receive and the length of their prescriptions. Doctors are able to use their discretion when prescribing, but Johnson said those limits have restricted her access to needed pain medicine.
“When are they going to look at these drugs in a different light?” Johnson asked. “It isn’t the drugs that are bad, it’s people who abuse them.”
Anderson worked with Johnson for five years. He served as a specialist for more than 40 years and treated thousands of patients.
Following the failure of her second back surgery, Johnson experienced constant pain. She started with a low dose of medication, which slowly increased as her tolerance built up.
After receiving the full dosage from Anderson, Johnson went from lying on the couch to starting her own nonprofit.
She founded Stray Cat Rescue Associates of Minnesota in 2004. The organization has placed over 4,000 cats in permanent homes in the Twin Cities and surrounding area.
When Johnson started having more intense fits of pain, she was bumped up to 310 pills monthly. But she was forced to taper off her medication because of Minnesota’s restrictions.
Today, her prescription is down to 60 tablets per month.
“I can’t put into words how much this has affected me,” she said, leaning away from the couch headrest to ease the pain. “Some days I can barely move.”
'I can't even describe it'
Johnson is unsure about her own future, let alone her 15-year-old organization.
“Bone against bone. Sharp, shooting pain. I can’t even describe it,” Johnson said. “There’s a difference between existing and living. This is existing.”
Johnson participates in support group chats, where she hears of other chronic pain patients who have ended their lives to avoid further suffering.
Sometimes, Johnson said, people resort to buying opioids illegally.
“This whole thing has taken on a life of its own,” Johnson said. “I’m not going to be quiet about it.”
She explained that the brains of those experiencing constant pain are different than those seeking opioids for pleasure.
“Pain patients don’t experience any kind of ‘high’ while using them correctly,” she said. “We can work, drive a car and volunteer our time all while using these medications.”
Raising her voice
Johnson found an ally in state Sen. Karin Housley, R-St. Marys Point. In July, the two met to discuss statewide opioid restrictions.
Housley said that some of her fellow lawmakers were against opioids, citing deaths from overdoses. But she disagreed with them because her dad suffered years of severe back pain.
“The picture looks a whole lot better for pain patients,” Johnson said.
When the Legislature convenes in February, Johnson wants to lead a rally outside the Capitol in support of those who suffer from chronic pain accessing opioid medication.
If things don’t change, Johnson said she is considering either leaving the state or filing a class-action lawsuit.
Making change together
When Johnson started speaking with lawmakers, she suggested separating those who overdose on opioids from chronic pain patients.
“They made opioids bad for everyone,” she said. “Lumping everyone together into one group was what they did.”
Johnson’s talks with Housley and Gov. Tim Walz’s office sparked plans for an August meeting on the subject. Her idea was to gather individuals affected by the opioid restrictions and discuss how to move forward.
Seven guests — both pain patients and change advocates — talked about possible legislation with staff from the governor’s office.
Without personally experiencing or watching a loved one struggle with chronic pain, Anderson said extreme pain is a difficult concept to grasp.
“It’s all a matter of a lack of understanding,” Anderson said. “We’re all ignorant about something.”
Johnson said she will not back down until she attains freedom from the pain. She said she has a sliver of hope that things will change.
“I am not only fighting this for myself,” Johnson said, “but for all those who are hurting.”