Rosanne Griffith is searching for her new normal.
“I have to find a new me,” said Rosanne, 61, of Gastonia, N.C. “That’s the hardest thing. Right now, the new normal changes day to day.”
Rosanne has myasthenia gravis, a chronic autoimmune neuromuscular disease most commonly characterized by weakness in voluntary muscle groups that worsens with even slight activity and improves with rest.
There is no known cure for the disease that makes low stamina and chronic fatigue unwelcome companions in Rosanne’s life. The sewing, embroidery, photography, basket-making and wood-working projects await the return of the accomplished craftswoman’s hands and heart.
“I have all the materials for those crafts I’ve enjoyed all my life, but the interest and energy just aren’t there,” Rosanne said. “It’s a really strange feeling and hard to describe.”
“I have all the materials for those crafts I’ve enjoyed all my life, but the interest and energy just aren’t there.”
Diagnosing myasthenia gravis is difficult because the symptoms can be transient and fluctuate in severity and too often — especially in women — the symptoms can be ascribed to something else, said James F. Howard Jr., MD, leader of Rosanne’s team and distinguished professor of neuromuscular disease and professor of neurology and medicine at the UNC School of Medicine and chief of neuromuscular disorders in the Department of Neurology.
“We’ve made strides, but the diagnosis is still missed quite often by most physicians,” Dr. Howard said. “It’s like having a problem with your car. The problem can’t be replicated by your mechanic, but on the drive home, the problem recurs. It’s back and forth and eventually by process of elimination and more precise tests we figure out what it is.”
Although it took two years to get a diagnosis, looking back Rosanne thinks the symptoms were present as she recovered from breast cancer in 2007.
“I had surgery, radiation and reconstruction, and my recovery took a lot longer than my doctor or I expected,” said Rosanne. “I couldn’t seem to get my energy and stamina back. Then came the eye problems, especially some blurred vision and drooping in my left eye. We now know those are classic symptoms of myasthenia gravis.”
Medications and treatment interventions allow most, but not all, patients to lead full lives. For Rosanne, the medications have not worked as well as she had hoped, and she and Dr. Howard are hopeful that the plasmapheresis or plasma exchange she has done routinely at UNC Hospitals can provide periods of relief until the best treatment for her is found.
“It’s like changing the oil in your car.”
“It’s like changing the oil in your car,” Dr. Howard said of the exchange that takes several hours. “We remove her blood and separate it into its components. The abnormal antibodies due to the misrecognition of the contact point between nerve impulses and muscles float in the blood serum and we remove them, much like skimming cream off milk. Her blood is returned to her body. The exchange can help boost the immune system, but the production of the abnormal antibodies continues.”
While in Chapel Hill for care, Rosanne and Shawn, her husband of 37 years, U.S. Army retiree and current rector of St. Mark’s Episcopal Church, stay at SECU Family House, the 40-bedroom hospital hospitality house minutes away from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.
“I’m always tired by the ride from Gastonia, but Family House offers us a comfortable place to stay close to the hospital,” Rosanne said. “I am an introvert and it has been harder for me than Shawn to interact with others, but there’s always the option to share stories if you wish. And people respect if you wish to be left alone.”
Despite her disease, Rosanne continues to work for a Christian bookstore in Charlotte, a chain she’s worked for since Shawn started seminary 15 years ago.
“Although I have gone to part-time and I have to pace myself and rest on the days after I work, the bookstore is one part of my life I feel is most normal for me now,” Rosanne said. “It is a safe place.”
As Rosanne’s five-year anniversary post-breast cancer approaches in August, she can’t help but compare the two diseases that have altered her life and body.
“Being told you have breast cancer is a great shock, but you know there are many treatments available and there is so much emphasis on a cure,” she said. “To have another health problem that I knew nothing about and for which there is no cure is worse. It was both good and bad to receive the diagnosis, and we’re just focused on moving on.”
“Being told you have breast cancer is a great shock, but you know there are many treatments available and there is so much emphasis on a cure.”
Rosanne believes being married to a priest — and Shawn in particular — has helped them cope individually and as a couple with her bumpy health journey.
“I don’t believe God gives us all this stuff, but it happens because of our choices and because we live in a broken world,” Rosanne said. “I know God is with us to help us through it. I still get mad and yell at Him and those around me, including Shawn.
“But I’ve also learned to ask for help. I’m used to doing for myself, and having to ask for help for even the simplest things is hard. I have to be very conscious about not over-doing. I’m learning I can’t control everything, especially my myasthenia gravis.”