WAYNESBURG – You look healthy, maybe a bit tired, but otherwise appear well. You have learned to live with the aches and pains. And then one day you wake and find walking is extremely difficult. You’d rather stay in bed than see yet another physician who doubts you are ill.
When the diagnosis comes, you are relieved – at first. That relief diminishes when you find out that in the last 50 years, only one drug has been approved specifically for your disease. That is what Jonella Wozny Williamson still faces four years after learning she has lupus.
“They call it the great imitator. There is no one test for it. I have had symptoms for many years. I used to think, ‘Am I just crazy? Am I just depressed?’ Williamson said. “Looking back, I had symptoms going back to high school; joint pain, fatigue, and I saw doctors for it, but they didn’t understand.”
When it hurt too much to walk, she saw a rheumatologist. The sedimentation rate of her red blood cells was 99. This is a measurement of how quickly red blood cells settle to the bottom of a test tube in one hour. In women, a rate under 30 is considered normal. Williamson was referred to the Lupus Center of Excellence at Magee-Womens Hospital of UPMC.
There she was tested for the 11 factors of lupus. Only four, at any given time, indicate the presence of the disease. She had more than half.
“I have realized I just have to accept it and be positive about it and do what I can,” she said. Talking and educating people about lupus is one way she feels empowered.
She takes the lone lupus-specific drug, Benlysta. It was approved by the FDA in 2011, so there hasn’t been enough time to tell if it is a success. Corticosteroids are known to ease symptoms of the disease. Williamson takes a low daily dose. However, there are side effects. Her kidneys, heart and liver have to be monitored.
Plaquenil, a malaria drug, has helped some patients, although lupus is in no way a contagious disease. Those who have contagious conditions, such as colds, flu, etc., are a threat to Williamson, not the other way around.
“With lupus, the part of the white blood cells that fight infection can’t tell what’s broken and what’s not. Most people want to strengthen their immune system when they get sick,” Williamson said. “To strengthen my immune system would actually be bad. I want my immune system to be calmed down because my immune system is trying to kill me.”
Prescriptions other than Benlysta that are prescribed for lupus may not be covered by insurance. Without her husband Ben’s insurance, Williamson said she would be in big trouble. It covers these other drugs. Without them to control symptoms, it could lead to everything from a heart attack to her kidneys shutting down, she said.
Williamson said one of the hardest aspects of the disease has been realizing her limitations. The 1990 Pennsylvania Bituminous Coal Queen, 1990 Miss Rain Day and founder of the Daughters of Grace Christian Women’s Choir is used to being on the go.
“I feel like I am busy now. I look back and think I used to be really busy,” she said. “I am certified to teach elementary English but I’m not doing that anymore. I used to give music lessons. I had over 40 students at one time. I’m not able to do that right now. I have had to learn to say no.”
That was a tough lesson, she said, but, she has come to realize that she can’t live her life apologizing for her illness.
The disease ebbs and flows in what are known as flares. Months can go by where one feels almost normal, Williamson said. Then a flare takes place.
Inflammation around the lining of the lungs has been one of the most difficult symptoms for Williamson. When it happens, the longtime vocalist doesn’t have the breath support to hit the big notes that have become her signature but it hasn’t stopped her from doing what she loves. She sings when she can, dropping octaves when necessary.
“The Daughters of Grace is food for my soul. It is the one thing I am not going to give up, no matter what,” she said.
Singing, along with running, keeps her in a calming and positive place, she said. Williamson recently completed her second half marathon.
“I told my doctor I was going to run a half marathon in January and she said, ‘I’m not sure this is such a great idea.’ She was worried about my kidneys. For now, I feel like if I can do it I have to try. It’s keeping me going for now. Running is my God time. Whenever my body is occupied the Lord can deal with my mind. One thing I let lupus steal from me for a long time was my joy,” she said, teary eyed. She won’t let that happen again.
Williamson recently started a blog to document her journey with lupus, running, and lessons she’s received from God. It’s titled “A Wild Shieldmaiden of the North.” She also participates in several online support groups for lupus. Williamson has not found a Greene County support group for the disease. She said she only knows of a couple others in the county with lupus, “but someone you know has lupus, whether you realize it or not,” she said.
There are believed to be 1.5 million Americans and 5 million others worldwide who have a form of lupus, according to the Lupus Foundation of America.
“One medical person said to me, ‘you know that’s (lupus) not really real. You just need to get over it.’ I think, especially younger people, struggle with that, with people not believing them and the loss of friends from lupus,” she said. “When you say you can’t go out they just think you are tired. It isolates you. You feel alone.”
Fortunately, Ben and her close friends get it and are there for her, especially Ben, who, she said, helps her keep her joy.
“Some days it is like walking through peanut butter as far as my brain is concerned. One day I could not think of the word refrigerator. I said to Ben, ‘You know, that cold box we put food in,’ ” she said. “I was embarrassed to talk at times. Some days I have to pull over and think, ‘Which way do I need to turn to get to dad’s house?’ When that happens it isn’t a good idea to drive.” For most of five months last year, she didn’t.
“Being completely lost all of a sudden is a terrifying feeling when it happens. I take a lot longer now checking, double, triple checking things. It is a tough pill to swallow,” she said. “You have to be careful not to let the lupus define you. I am not lupus.”
May is National Lupus Awareness Month. To learn more about lupus, visit the Lupus Foundation of America website at www.lupus.org.