Laughing through the pain
Label for Shirley: Fighter or Rebel
The first thing you’ll notice upon meeting Shirley Norris is her infectious laughter—it is the best medicine. She’s not afraid to share the nitty gritty details of her daily life, making jokes along the way to put everyone at ease. She’s accepted the changes her body forced upon her and she’s not ashamed to share. In the last three years, her body has rebelled against her in drastic ways… some visible, others manifesting under the surface.
Shirley used to be a successful senior manager overseeing departments of finance and customer service, responsible for 150 employees. It has been three years since she has been able to return to work. Shirley developed osteoarthritis very quickly after turning 50, requiring more than eight surgeries. Three more are planned to address this degenerative joint disease.
For some people, osteoarthritis is focused in one area of the body and can be managed through medication, exercise, and weight management. However, the cartilage between Shirley’s joints that causes pain, stiffness, and swelling is felt in her hands, elbow, knees, and throughout her spine.
Shirley’s right thumb joint was fused together via a surgery that “welds” the two bones that are causing pain, eliminating the joint. Typically, a bone fusion in any part of the body stops any mobility, as the joint has been removed and two bones have essentially become one. Due to a connective tissue disorder, Shirley is able to use her fused thumb without much trouble.
On a recent trip to Philadelphia, she dislocated her left thumb but didn’t seek treatment. Knowing it typically pops back into place, she chose to bear the pain for days instead of seeing a doctor while on vacation. That is one surgery she needs to have in the near future.
Due to widespread osteoarthritis, Shirley had a ligament transfer in her left elbow, which required a second surgery to replace the ligament with a synthetic one. Bone cysts caused her immense pain, so another surgery, which entailed a bone graft, was needed to remove the growths. Shirley needs a knee replacement in her left knee and has a large meniscus tear on the right one.
Reality of chronic pain
“My pain is almost constant,” says Shirley. “That toothache-type pain if you’re having a good day! The severe throbbing that almost takes my breath away on a bad day.”
Pain restricts her daily function, forcing her to “think about what realistically I can commit to.” Full-day shopping trips, standing in long lines, bending over, walking, and hiking are everyday activities that cause Shirley to make choices about what she can handle. She has adjusted, picking her battles. “I do my food shopping online and get it delivered to my kitchen. Clothes shopping is mainly done online. No dancing at family gatherings, either.”
Life with Winnie
Osteoarthritis, connective tissue disorder, bone cysts, and fibroid tumors so large she required a hysterectomy—it’s quite the list of medical conditions for one person to manage.
Shirley began experiencing constant urinary tract infections and had an alarming amount of blood in her urine. Her urologist kept treating her with antibiotics and catheterization. She knew something was seriously wrong but kept getting dismissed by her specialist. “I was brought up in a generation where you didn’t question doctors,” she says. Finally, she listened to her body and got a second opinion, which revealed she had bladder cancer.
Her cancer was very aggressive and within four months, she had a cystectomy, a procedure which completely removed her bladder. Surgery created a stoma (a small opening in the surface of the abdomen) that redirected the flow of urine into an ostomy bag.
Shirley is cancer-free more than a year after having her bladder removed. True to her humorous nature, Shirley named her stoma “Winnie.” Friends will ask how Winnie is doing or if the ostomy bag leaks, Shirley blames Winnie—her way of redirecting any feelings of discomfort, embarrassment, or guilt.
“Winnie has surely been a blessing and not a curse,” says Shirley. “She has saved my life and is my new best friend.” She copes with the effects of her surgery by helping others, or else “what would be the purpose?” she says. Shirley boldly tells her tales and adventures with Winnie at BladderCancer.net.
Continued back pain
Before her cancer diagnosis, Shirley had undergone many surgeries to deal with her osteoarthritis. When her lower back began hurting, doctors assumed it was from the recurring UTIs, and then from her inflamed bladder. But after the cystectomy, the back pain persisted. Shirley self-funded a 4D full-body scan, wanting to know what else was lurking in her body.
The diagnostic report listed eight significant areas causing concern. Osteoarthritis had found a new home in her spine. Multiple bulging discs, hernias, nerve root compression, and disc desiccation (hardening of the discs between the vertebrae) were among her diagnoses.
Shirley will face additional surgeries and continue to find ways to cope with the rebellion inside her body, invisible to the outside world.
Misconceptions and advice
Shirley wants the public to understand that with osteoarthritis and low back pain, “just because you can’t see my pain, doesn’t mean it doesn’t exist. Arthritis of the spine is real— too many people shrug off the condition.” She has seen many people use the label of having a “bad back” as an excuse to get out of work, which is unacceptable to her. “Take my condition seriously, as it’s very serious for me,” she says. “This condition rules my life and stops me from doing lots of the things I used to take so much for granted.”
To those living with chronic pain, she says, “don’t beat yourself up, don’t overdo it, and don’t apologize.” Shirley makes time to rest, keeps good comedies on hand to entertain her on bad days, and makes meals to freeze for the future on good days. Keeping her mind busy helps her manage her pain, so she saves housework for when she needs a distraction.
Living life on her terms
With all that Shirley has been through in three years’ time, her outlook on life is amazingly positive. She and her husband are seizing the day, knowing every moment is precious. He retired early to focus on living with Shirley in the here and now. Even with an ostomy bag, multiple surgeries, and chronic pain, Shirley and her husband find ways to make life work for them, instead of being controlled by her health. They are planning to live in India during the winter, returning to England in the warmer months.
“I now appreciate all those little things in life, like beautiful flowers and sunsets, the company of good friends and family… things that I all but ignored or just took so much for granted previously.”