Accepting her limitations to find a new way to live.
In 2008, Karen Scifo was an active 38-year-old mother, wife, friend, and colleague. She had been through some rough times in her life and was finally at a place of peace—raising three sons, working a job she loved, and having married a man who adored her. But everything changed one afternoon in late November.
Her middle son wanted to decorate the house for Christmas. Obligingly, Karen went up in the attic to bring down the holiday decor. As she bent down to move one final empty box in the attic, she found herself unable to move, paralyzed with intense, burning pain. Her husband, George, had to carry her down the stairs.
Karen’s primary care doctor ordered an MRI. A radiology transcriptionist by profession, Karen knew it was herniation from seeing the images and scheduled an appointment with a back doctor that same afternoon. The specialist confirmed her speculation: she had an L4-5 herniation. Surgery was needed.
Unsuccessful treatments and more unwanted diagnoses
The invasive L4-5 hemilaminectomy failed. With discs now resting bone on bone, Karen has herniations throughout her lumbar spine—and pain that has never gone away. She also has pinched nerves and a herniation in her neck that radiates pain down her shoulders and arms. “I live in chronic lower back pain that shoots down both of my legs to my toes,” she says. “While the herniation in my neck comes and goes every couple of weeks, this back pain never ceases.”
With surgery unsuccessful and a fusion not in her best interest, she sought a second opinion, who referred her to a physical therapist and pain management specialist. Karen tried a neurostimulator, which brought on further pain. She had over a dozen lumbar punctures before calling it quits (most exacerbated her symptoms).
For nearly a decade, Karen has been an active participant in her health journey. She knows how to advocate for herself, when to seek out other opinions, and whom to trust. She stores and takes her medications (including an opioid) safely and as prescribed, refusing to take any over-the-counter medications without a doctor consult. She attends physical therapy as needed.
Despite being a stellar patient, Karen’s health woes have magnified. She was diagnosed with fibromyalgia, and experiences excruciating tailbone and low abdominal pain. The worst medical issue to arise since Karen’s herniation is rectal prolapse.
No one can definitively say why Karen developed prolapse, but most of her doctors agree that her back issues, medications, and subsequent constipation triggered the condition. “There was a time that I could go 40 days without a bowel movement,” explains Karen. “Sometimes I couldn’t even strain or push hard enough to remove the stool, and had to visit the hospital to have it removed.”
She underwent surgery to correct her prolapse in November 2013; the surgeon also removed nearly four feet of her colon that had gone septic. But the surgery as a whole failed. “I now have rectocele, a herniation between the rectum and vaginal walls,” she shares. With her rectal muscles no longer functioning, Karen must go to extraordinary circumstances to have a bowel movement.
Minute by minute
Karen no longer can work and lives on disability. She goes through periods where she is able to do more, and times when she is in bed a lot.
When she can, she likes to walk and has a membership to Silver Sneakers (a gym for the disabled and seniors), where she uses the pool. She also tries to stay healthy by eating well.
Spontaneity has left Karen’s life. Instead, she lives by routines that allow her to function. “I have to live minute by minute,” she shares. “The times of planning outings days or weeks in advance no longer exist for me.” She explains that sometimes, taking a shower is like climbing Mt. Everest. Going to the store with her husband requires her to bring her wheelchair since she may start walking, but three minutes in, need to be pushed. “It’s frustrating never knowing what I will be capable of doing each moment. But I keep trying and just do the best that I can.”
Facing challenges head on
Karen’s challenges far exceed the limitations of pain and disability. Karen has had to deal with unnecessary stress stemming from long waits for her health insurance to approve medications, therapies, and tests. She even recently had to change her medication due to insurance practices surrounding the new pain guidelines.
“I am constantly scrutinized because of the fact that I take narcotics for pain,”
states Karen. “Every time I see a doctor for an issue, especially in the emergency room setting, I face speculation of being a drug seeker. It is demoralizing and infuriating, as a legitimate pain patient who responsibly follows her treatment plan, to be accused and treated poorly because of my medicine.”
But Karen is a fighter and takes the pushback in stride while advocating for the care she deserves.
A new perspective on life
The first seven years Karen had pain, she attempted to live life as normally as possible. She didn’t want to let anyone down or acknowledge she couldn’t do some things. Wanting to be seen and treated the same—but also wanting empathy and help—caused an internal tug-of-war.
“All I wanted was to feel normal,” explains Karen. “But the pain just wasn’t going to go away despite the treatments. I was running a race I could not win.”
Then came her “aha moment.” She remembers being outside grieving the loss of her dad when an overwhelming feeling came over her. “I realized I will always live in pain, and whether I liked it or not, life would forever be different,” Karen shared. “It was like someone was telling me, ‘You are not normal. Accept your limitations, and everyone else will do the same.’”
Not needing to pretend she was fine as her body progressively worsened, Karen found her own normal.
“I finally accepted that this is who I am, and I have to take each day as they come.” It was was liberating. “I was finally able to say ‘I can’t do that today.’” Now, on the days she isn’t able to cook, George will order pizza and it’s OK.
Coming to terms
Karen has had to acknowledge how her pain impacts others. It took her a long time to see she is not the only one involved—her husband and family are affected, too. This realization has eased some of the tension of feeling unheard or misunderstood.
She has been married to George (the stepfather to her three sons) for 14 years, and is thankful for his support. She says they have an unspoken language: “He can just sense my pain by looking at me.” While this connection reassures her, it is George’s actions and support that truly show Karen his love for her.
Pain is hard for those not experiencing it to fully understand. Her extended family tries to be understanding and helpful, but they, too, get frustrated sometimes and lose sight of her daily struggle.
Karen has come to learn that it’s just who they are, and it is OK that they don’t grasp what she endures. “I now see that it’s not necessary to have their validation,” she says. “I can’t keep trying to live up to others’ unattainable expectations of me.”
Now 47, Karen Scifo is proof you can have a life while living with pain. Being able to accept her new life and limitations has been vital to her happiness today. She also gathers strength knowing she is not alone. “Reach out for help; it exists. That’s how I found U.S. Pain Foundation—it was 3 a.m., the pain was unbearable, and I was searching the internet for information and help. I am so glad to have an outlet that is here to help us all along on our journeys.”
Silver Sneakers: silversneakers.com
U.S. Pain Foundation: uspainfoundation.org