PSC student finds alternative for pain management
By Becca Carlson
*This article originally appeared in The Corsair in Jan. 2018.
Since her diagnosis of ankylosing spondylitis (AS) ten years ago, aspiring model and actress Cecelia Kuhn fights to maintain a sense of normalcy while managing pain levels that would bring Superman to his knees.
Every day is a mix of pain and stiffness for the 33-year-old Pensacola State College Theatre and Drama student.
She’s explored just about every pain management option available to patients in Florida with varying degrees of success. Recent state legislative changes have now made medical marijuana a treatment possibility for Kuhn under the “Right to Try Act.”
Kuhn says she’s already seen big changes in a short amount of time.
AS is a genetic disease more common than multiple sclerosis (MS), yet less studied. Over time, it causes inflammation and fusing of the vertebrae and sacroiliac (SI) joints. It also causes ribs to fuse to the spine which prevent the lungs from expanding to full capacity.
“It’s not something you’re going to die from, but I almost think it’s worse,” Kuhn said, “because you have to live with severe pain for the rest of your life.”
Life with AS has been a balancing act of Simponi injections (a biologic to suppress the immune system which is about $10,000 a month), oxycodone 3 times a day, Dexilant for stomach issues, various pills for Irritable Bowel Syndrome (IBS), excruciating shots in her SI joints and nerve ablations.
Many of these treatments will always be necessary, however, Kuhn is most concerned about her body’s reliance on oxycodone.
“I’ve been on oxycodone for three or four years. My body is dependent on them which is different from addiction,” she said. “If I stop taking them, I’m going to withdraw. I have to be weaned off them carefully so that it doesn’t hurt my body.”
“My body’s gotten so used to it that it doesn’t really help─I’m still in pain. I’m already on the highest dose they give to elderly patients.”
She heard about medical marijuana as a potential treatment for pain through an AS support group on Facebook. Kuhn was hopeful that this treatment would work for her, too, but feared her physician’s reaction to her interest in the controlled substance.
“It’s hard to talk to doctors about it because there’s a stigma behind it still. It’s hard to get away from that. There’s only a certain amount of doctors here in Florida that can prescribe it,” she said. “I got lucky.”
Kuhn’s personal rheumatologist, Dr. Rachel Brown, took a 8-hour course and examination to become a certified prescribing physician.
“She actually has AS herself,” Kuhn said. “I have a doctor that knows how I’m feeling and what I’m going through.”
Currently, there are only two types of medical cannabis available to patients in Florida: Low-THC Cannabis and Medical Cannabis (CBD).
CBD does not have the same intoxicating effects as THC, making it preferable for patients like Kuhn who want to manage their pain but not “get high.”
Kuhn gets her products at the Trulieve dispensary in Pensacola. “It’s like a clinic, pharmacy setting. There’s a front waiting room where you give your patient ID number. Then they call you back where all of the products are held, and they go over it with you,” Kuhn explained. “It’s really professional.”
Each patient is prescribed a version of medical marijuana depending on their disease or need. Kuhn can purchase vape oil and pill capsules which she says helps with inflammation, pain and IBS symptoms.
AS is a systemic disease that attacks tissues throughout the body causing other serious health issues like blindness and heart, liver or kidney diseases. For Kuhn─ fibromyalgia, gastroparesis and IBS.
“It’s really hard to be consistent. Me on a good day is having flu-like symptoms. Me on a bad day is feeling like I’m going to die.”
Kuhn couldn’t complete a necessary dance course for her degree path because of the excruciating pain. She now fears she may not pass the program.
When people say to her, “I’m jealous that you get to smoke weed,” she responds with, “Don’t be. If the only way I can smoke is to have a disability, I don’t want it.”
Her excruciating journey began at eight years old when she complained of pain. By 23, it was much worse.
“There were days I couldn’t walk at all. I was in and out of the hospital,” Kuhn said. “Finally, [the doctor] decided to do a genetic test. It showed that I was HLA-B27 positive, which is a genetic marker for AS.”
“I was like everyone else. What the heck is ankylosing spondylitis? I didn’t really know what exactly that meant,” she said.
Tragically, the permanent birth control she had implanted earlier in life exasperated the disease causing it to progress faster, more aggressively and eventually required a hysterectomy.
“I’ll never be able to have kids. I question whether I’ll even be able to have a career,” Kuhn said.
Her personal relationships have equally been affected. “I’ve lost a lot of friends,” she said. “Simply the fact that I can’t do things and keep up with them. Sometimes I catch myself talking too much about the AS because it’s overwhelming in my life.”
“With friends, you talk to them and complain. I think it just got to be too much.”
Kuhn’s family lives in Idaho which has hindered their understanding of the disease. “I think they’re starting to grasp that this disease is pretty serious,” Kuhn said. “My mom found out she’s positive for the gene, but she still has to do tests to see if she has AS.”
Fortunately, she’s not alone.
“My husband is having to do a lot for me. That’s overwhelming on him. He knows I try to do as much as I can to help out, and he’s okay with that,” Kuhn said.
Kuhn’s family members are supportive and hope that CBD helps reduce her suffering.
“As the spouse of someone who has a debilitating disease I would imagine life is a lot like anyone else who has a dependent or someone who relies on them who is limited. As a prior EMT and Firefighter, it can become a frustrating feeling knowing there’s something wrong, but I am unable to do much about it,” Corey, Kuhn’s husband, said.
“Although we may be limited on what we can do, we still enjoy life. We may have more movie nights than cliff diving expeditions, but we still enjoy each other’s company and we continue to strive for wellness.”
Pain management will always be a factor of Kuhn’s life. Medical marijuana is just one form of pain relief that she utilizes.
Luckily, Kuhn has seen a drastic reduction in her digestive issues since beginning her CBD treatments, as well as a decrease in her pain levels even after her biologic wears off.
She’s in less pain and therefore more active than just a few months ago even as she decreases her usage of oxycodone. “Eventually, I just want to be able to take my Simponi, do my medical marijuana and reduce all that other mumbo jumbo.” Kuhn said.