By Christina Jaksy
Joanne Hageman has battled Lupus for many years, with dignity, fight, and perseverance. Born and raised in Illinois, Joanne now lives in Western New York. Joanne has certainly had her ups and downs with Lupus, and has had to reinvent herself with every loss lupus has dealt her. Joanne was finally diagnosed with Lupus in 1993, one year after the birth of her daughter, Kelsey, was born, and years after odd symptoms and frustrating battles with her body and the medical community.
Joanne started having signs and symptoms of Lupus in her teens, but really never sought medical attention. There were connective tissue problems in those years in her knees. She finally sought medical attention, but was not diagnosed with Lupus. Her father had severe Rheumatoid Arthritis, her Mother severe Arthritis. Joanne was a super athlete in her teens. She was on the high school basketball team, she was a high jumper, shot putter, softball and volleyball player. She was really strong and just loved playing sports, very competitive. Her knees continued to give her problems. The high-impact sports had to stop. So she turned to art and music. The knees never came back, and always felt like they would give out. Depression set in during High School, but went undiagnosed. No one talked about it. Despite the depression, Joanne’s music really took off in High School.
After High School Joanne went on to Design School, but ended up pursuing music as a career. The depression continued as her body and mind were in a constant state of fight or flight. The Lupus continued to go undiagnosed. She never felt right. Joanne felt a severe disconnect to self. She had sleep and sleep walking problems, and repeating dreams - trying to catch butterflies. How ironic. Even back in High School, Joanne realized later that there were vapors coming up from her father’s art room. He used chemicals for his art that she was inhaling.
One doctor did arthroscopy surgery on one of her knees which gave her temporary relief. Joanne still wasn’t given any kind of a diagnosis. In her mid-30’s, Joanne experienced body rashes, sudden fevers, joint pain, severe Raynaud’s and her thyroid gave out. Then Joanne became pregnant. During her pregnancy she finally got good medical care, but had moved to New York near family before her pregnancy. She enrolled in nursing school while receiving a diagnosis of clinical depression in 1991-1992. The frequency of her intestinal problems intensified and put her in the hospital several times due to severe pain. The Lupus was in effect attacking her liver. Chest pains started as well as a low white count. Still no diagnosis.
Her doctor told Joanne to see a rheumatologist. Finally Joanne was diagnosed with Lupus a year after her daughter was born. Then muscle and joint pain started along with severe cognitive impairment, which forced her to drop out of school. It took Joanne six years to get a degree in gerontology and an Associates degree in Human Services.
Joanne’s 30’s were a time of education, a time to heal and figure out what was wrong with her. There was a lot of anger, and with that anger there was motivation to take more charge of her care. She wasn’t being taken seriously because she didn’t have “text book” symptoms. She was told “it will go away, and, it’s all in your head.”
In Joanne’s 40’s, she was empowered by education, to take a lead role in her care. Taking medications finally started. She “quit the country bumpkin doctor” and went to a major
hospital where they took more interest in her case. Comprehensive lab tests confirmed kidney and liver involvement. “Seven of the eleven” symptoms were present. Joanne finally started prednisone after all these years, and got relief. But destruction of bones in the ball of the hips came with that from steroid injections.
Joanne is proud to say that she was asked by the deputy commissioner of the department of Social Security to speak on a panel to discuss Lupus, based on a letter she wrote to them. Among the people in the audience were Dwayne Peters, President of Lupus Foundation of America and other power players in the field. Joanne was granted SSDI. It took a lot of learning the ins and outs of the language of disability to get this.
After all the years of doctors postponing surgical treatments due to her young age, she finally found a good orthopedist. His response after seeing all of her films was: “how did you walk in here?” He said to get started on replacing all four weight-bearing joints. Joanne was encouraged because she finally had someone who would help her. She knew her strength would get her through it.
Today, she has gotten through two hip replacements and has two knee replacements to go. It was years of cortisone usage that has caused the deterioration of her joints.
What Joanne draws on for strength is: her daughter and family, her animals, and nature. It feeds her. Joanne’s goal is to climb the Adirondack Mountains with her daughter and family some day.
Joanne is currently healing from her second hip replacement. But day-to-day she gets a lot of reward from spending quality time with senior citizens. To take care of herself she will be taking a yoga class for caregivers. She enjoys playing
badminton with her daughter. The knowledge base she has gives her strength and assurance that Lupus is not life threatening for her. After seven years of reading and learning, Joanne refuses to live in fear. When fear has crept in during the past, she would run to her doctor in a panic or to the emergency room and realized the only person who could help her was herself. She realized she had to empower herself with education, because knowledge is power. She copes by being a good mom to her child and having her animals to care for. Joanne is certainly full of strength, courage and inspiration to all who have the pleasure of knowing her.