Living Through Chronic Pain and the Chronic Stigma of Cannabis Use.
In Southern California, snow often melts early. In March of 2008, Carly decided to go snowboarding one last time for the season. “When I would get off my overnight shifts at 8am I would drive up to snowboard for hours by myself, riding with whomever I happened to meet on the mountain,” she remembers. A nine-year veteran of snowboarding, she adeptly smashed and carved through the slush, navigating through bumps and uneven patches of snow. Her socks were quickly soaked through from the melting snow.
After one run, she took off her boots and wrung out her socks. On her very next run, she hit an uneven patch of snow and fell toward the mountain, forcing her left toes almost up to her shin. It “hurt like hell,” but Carly had no idea how bad her injury was until the end of the day when she took off her boot and saw her swollen left foot. She bandaged her foot and ankle and saw a doctor, who assured her it was a sprain and gave her crutches. A week later, she still couldn’t walk, so she demanded more tests be done on her left foot. Those tests showed three sprained ligaments, two bruised bones, and a fractured heel.
“My pain and sensitivities to pressure got so bad in the months after the accident that I had to start using a walker and a wheelchair.”
After months of wearing a walking cast and receiving physical therapy, her left leg was swollen, blotchy, and very painful. She finally saw a specialist who diagnosed her with Complex Regional Pain Syndrome, or CRPS, a chronic pain condition caused by damage to the peripheral and central nervous systems. After having a Spinal Cord Stimulator implanted in her back, her pain was mostly controlled until a car accident in 2013 caused the CRPS to spread through both her legs and her back. “My pain and sensitivities to pressure got so bad in the months after the accident that I had to start using a walker and a wheelchair,” she recalls.
Suddenly Carly was thrust into a life where she could no longer work or play. She was fired from her job because she could no longer complete her duties. She could not exercise, dance, or even leave the house. Once her doctors determined that Carly’s CRPS had gotten worse, they started her on a rigorous prescription painkiller regimen. Each day for two years, Carly maxed out on the dosage for an opioid painkiller, ibuprofen, and muscle relaxers. Her doctors also prescribed liquid morphine to help control pain flare-ups. Despite the amount of medication she took, she still found herself in debilitating pain on a daily basis.
“My loved ones never knew who I was going to be and when during this time.”
In an attempt to control her nerve pain, Carly’s medical team suggested she try different psychiatric medications. For a year and a half, Carly took one psychiatric medication after another, slowly increasing the dosage of each one to see whether they would control her pain before the side effects got unreasonable. “These were strong psychiatric drugs that could totally change a person’s personality,” Carly says. “My loved ones never knew who I was going to be and when during this time.” Eventually, Carly decided that the side effects were not worth the little pain control provided by these psychiatric medications, and stopped taking them.
A combination of medical marijuana and ketamine infusions are more effective at controlling Carly’s pain and inflammation than the host of painkillers she had been prescribed. “It helps me use fewer medications, and it makes all the medications I take work more effectively,” Carly says. “If I needed 3 pills, I could take one pill and medical marijuana and have the same effect. I use CBD products to help with inflammation, muscle spasms, anxiety, and nausea. The THC helps more with my pain and my appetite. CBN is good for my sleep.” She prefers to vaporize concentrates from the comfort of her own bed, especially on the days when the pain is debilitating.
Despite the relief she’s found from the medical marijuana, Carly still faces resistance on many fronts. Her health network does not support medical marijuana use. She is open and honest with her doctors; however, one nurse went so far as to call a drug treatment center to speak to her when she was recovering in the hospital. She also ran into a problem when she had to be drug tested to be approved for her Ketamine infusions. Her urine test came back positive for marijuana; the lab technician called Carly’s pain management physician, who disavowed knowledge of her medical marijuana use. He told Carly that she would have to stop using medical marijuana before he would continue prescribing the pain medication. Out of protest, Carly did not go back to re-take the drug test, and thankfully she has not heard anything else about it
“I use (cannabis) shows and a friend who runs a delivery service. She gives me everything at cost. If it weren’t for people like her, I could never actually afford the medicine I need.”
Because medical marijuana is not covered by insurance and her monthly treatment would cost $1,200 or more, she often runs out and is forced to save and use reclaim during those times. “I use shows and a friend who runs a delivery service” to get her marijuana, says Carly. “She gives me everything at cost. If it weren’t for people like her, I could never actually afford the medicine I need.” Some companies which makes medical-grade cannabis products, also provides her with donated product to help. In addition, it is illegal for her to leave California with her medical marijuana, so she must revert to her prescription drug regimen to visit family out of state.
“My fiancé is from Kentucky, so if we want to go to visit his family I am forced to go without my medical marijuana.”
On a positive note, her family and friends are accepting and supportive about her medical marijuana use. In addition, Carly credits it with helping her complete her education, including a BA in Psychology from California State University at Northridge, and an MA in Psychology from The Chicago Professional School of Psychology. “I am so incredibly proud of myself,” says Carly, “but I have no idea whether I will ever be able to go into other countries to help set up social services programs that are needed and decrease stigma about people with disabilities, which is what I dream of doing.”
Carly will be the first to tell you that even though life with CRPS is hard, there is always time for fun. “I like to do art, play video games, hang out with my best friend Nicole who also has CRPS, and go to cannabis events,” Carly says. She loves going to the Baron’s Confections farm. She and Nicole are also part of a 420 support group that is, Carly reports, “amazing.”
“This is not a matter of opinion or morals. It is a matter of ethics, and it is unethical to allow people to suffer when there is something that can so easily help in many ways.”