Easing the Pain
Sue Neabling hasn't had a day without pain for 30 years. Some days it's nearly unbearable. In 1984, she was the mother of two young children and working full-time when she developed transverse myelitis. "It eats the sheath on your spinal cord," Sue explained. She spent over 30 days in the hospital and had to relearn to walk. In the years since, she has also been diagnosed with Multiple Sclerosis, bone cancer and breast cancer. Sue's health has been up down with repeated hospitalizations. The only constant is the pain. Early on she made up her mind that you have "to put a smile on your face and a song in our heart. It makes life a whole lot better than sitting and feeling sorry for yourself." She credits her husband Rollie's support for helping to get her through. "He has been with me every step of the way. He's taken me to every doctor's appointment." Sue has had many surgeries, procedures, physical therapy, occupational therapy and medications. Sometimes they helped...but only for awhile. "It's weird," Sue said. "You never know from one day to the next how you're going to be. There are days when I'm a sponge."
About a year and a half ago Sue was very weak and couldn't do simple daily tasks. Her neurologist acknowledged that he couldn't do any more to alleviate her pain and he referred her to Affinity's Palliative Care specialist, Dr. Nancy Homburg. "She changed my life. I was on my way out," Sue said. In all these 30 years, I have never met a more compassionate, knowledgeable and caring doctor and program. When they began seeing Dr. Homburg their goal was simple&$151;to just control Sue's pain to the point where it was bearable. "Dr. Homburg evaluates everything you're taking. She is very careful about how everything interacts and looks beyond the standard," she said. As a result, they made some medication changes that have helped Sue improve her quality of life.
"I am so lucky and blessed to go to her. Dr. Homburg wants to know what's going on in your life so she can take care of you," Sue said. Rollie also appreciates Dr. Homburg's compassion. "She understands Sue's needs," he said. "A regular doctor has no idea what it means to be in pain 24/7/365 for 30 years. They (Dr. Homburg and Palliative Care Coordinator Donna Schou, RN) look out for both of us. They understand and they know how you are and what your days are like." Sue added, "If I call and I'm too sick to come for an appointment, they understand. That's important." If a prescription needs to be refilled on short notice or home care is needed, they make it happen. "They are willing and available to help in whatever way they can.
The Neabling's also had discussions about quality of life and the couple's advance care wishes. What if Sue has a heart attack or stroke? Would she want to be resuscitated? These are hard questions that Dr. Homburg and Donna helped them talk about and answer. Both Rollie and Sue know she is not ever going to be well, but with the support of the Palliative Care team they have been able to achieve the best quality of life possible for both of them.