Finding Peace after Years of not Being Believed
Caryna Ozuna’s knees feel like someone is trying to pry them off with a crowbar, her feet like she’s walked on gravel all day, and her shins like someone is jamming a two-by-four up the middle of her leg.
What’s worse? Nobody seems to believe her.
“It is every day. It’s just a matter of to what degree it is,”
Caryna, 50, who lives in Nebraska, has fibromyalgia, endometriosis, cervical and thoracic spinal stenosis with right side nerve impingement, and severe rheumatoid arthritis (RA). She’s spent decades looking for an answer, for help, or just to be believed. Along the way, she’s been misdiagnosed, dismissed, and accused of drug seeking.
Pain that no one could explain
Caryna’s journey with pain started when she was 26, doing medical records at a Seattle doctor’s office.
“I woke up one day and I was extremely tired. My body was aching,” she says. A doctor at her office ran blood tests. A test for RA was negative, and fibromyalgia “wasn’t a thing” then, Caryna says. She was diagnosed with “fatigue and myalgia, unresolved.” The doctor prescribed muscle relaxers, but the pain worsened.
“It got to the point where the fatigue was so bad, I wanted to climb under my desk and just hide,” Caryna says.
More blood work, more negative results, more assurances she was fine.
Determined to move on with life, she enrolled in nursing school at Grays Harbor College in Aberdeen, Washington. But during her second year, Caryna would come home and sleep for hours. Then came “horrible abdominal pain.”
“It actually got so bad, at times, I was doubled over on the floor and I wanted to die,” she says.
At 28, she was sleeping 18 hours a day, her husband feeding her in bed.
Caryna knew a nursing degree was out of reach at that time and withdrew from the program. She was approved for disability benefits around 2001.
A diagnosis—but more questions
In 1999, Caryna was finally diagnosed with fibromyalgia. But the horrible episodes of abdominal pain continued, and when she went to the emergency room, the doctors, convinced she had irritable bowel syndrome (IBS), accused her of drug seeking.
Shopping one day, she experienced intense abdominal pain and, once again, sought help.
“Honestly, I don’t know how I made it,” she says. “I don’t even remember driving to the hospital. I just remember blank white.”
At the hospital, Caryna had to wait, doubled over in pain, for six hours. “I finally got in there and again [was told it was] IBS,” she says. But the doctors ordered an ultrasound. “The technician told me right away, ‘You’re really lucky. Women die from this. While they had you waiting in the ER last night, you had an ovarian cyst that ruptured.’”
She had severe endometriosis; the tissue had traveled and attached itself to her bladder, and there was damage to her fallopian tubes. Caryna, having already suffered two miscarriages, was told she would never conceive again. She was devastated.
The surgery for the cyst helped her endometriosis, but the fibromyalgia lingered, and the muscle relaxers weren’t cutting it. Finally, Caryna was prescribed an opioid to manage her pain. “The next morning I could get out of bed. I could move, I could walk, I could stand in the shower, I could do things,” she says. She went back to work. She had a life again.
Shamed for seeking pain relief
In 2005, Caryna moved to Nebraska to be closer to her mother. But doctors there would not fill her prescription.
“I was told, ‘We don’t use opioids for fibromyalgia.’ See, everyone kept saying the word fibromyalgia. Like that was my only problem. It wasn’t, and it isn’t,” she says.
What followed was years of switching practitioners, being told she was misrepresenting her pain, and being refused medication or prescribed only low doses. Once, after Caryna got a horse and, over the moon with excitement, made a joking voicemail greeting saying callers should leave a message because she was with her horse, one doctor told her, “If you’re in that much pain, you wouldn’t be horseback riding.”
Being accused of drug seeking—or faking pain—is frustrating and demoralizing. “It makes you feel like a bad person for being sick,” Caryna says.
Opioids continued to be the only thing that helped Caryna’s unexplained bone pain. In June 2016, she had a cervical spinal fusion. Finally, at the end of that year, after multiple negative rheumatoid arthritis tests, a doctor in Wyoming (she had to travel out of state for a diagnosis) ordered an imaging test that “lit up like a Christmas tree”—every joint was inflamed. She was, in fact, positive for RA.
But having a diagnosis and having a cure are not synonymous. Caryna has tried various treatments, but so far, they’ve mostly made her worse. Even today, after decades of treatment attempts, any time she switches a health care team, her medications are adjusted and the pain floods back.
The year before her RA diagnosis, Caryna’s endometriosis flared up again. “I woke up one morning, the pain was back, and I just told my mother to call 911,” she says.
Recalling the last time she’d gone to the hospital with similar pain and was forced to wait for hours, she hoped arriving in an ambulance would mean she’d be seen immediately.
She was right: A cyst had twisted around her ovary. A week later, she had a hysterectomy. She was 43.
“No chance of babies in any way, shape, or form,” she says, tearing up. “I always wanted to have and carry my own baby. So that’s just been really hard for me.”
Caryna, her second husband, Daniel, and her mother have been raising Caryna’s 13-year-old nephew Aiden, whom she considers her son, for 11 years. She says Aiden is a godsend. She finds peace with her family and her dogs, who she considers a part of her health care team.
Faith is a large part of Caryna’s journey. When she can, she does Bible art journaling to find calm.
“When I have felt suicidal, when I have felt like if I have one more second of this pain, I’m going to die, I just, somehow, I hold on to Jesus,” she says.
Another part of her treatment regime is a bit futuristic: a virtual reality app. A doctor recommended biofeedback, but nobody nearby practices it. So Caryna turned to the app store. She shared that she experiences daily anxiety and panic attacks, feeling she doesn’t measure up “to what a normal healthy mom or wife or human would be,” and this app, Flowly, helps her manage her anxiety in a virtual world by helping her to slow her breathing and heartbeat.
“I don’t know if it’s helped my pain. It’s helped my anxiety,” she says. Virtual reality is an immersive experience and helps her achieve what the app calls a “flow state.”
“I can tell when I’m in the flow state, because I’m much calmer,” she says. “To me, that makes me feel more positive, because I can’t slow my brain down enough to meditate, but I can do this.”
Focusing on what she can do and finding peace in the little things has made all the difference. And despite the challenges she’s faced, Caryna doesn’t want pity. “I don’t want people to have sympathy for me. I want people to have empathy,” she says. “There’s a big difference between feeling sorry for someone and putting yourself in their shoes and imagining what they go through in a day.”