Nanette Stewart

Nanette Stewart’s dream was always to be a teacher and she never lost sight of it. Finally, at the age of 35 after a career in the travel industry and a stint as a stay-at-home mom, she earned a teaching credential from Mills College and began her teaching career. But, at the age of 40, after only 5 years of teaching, she began experiencing blurry vision, headaches, and extreme eye pain. She was diagnosed with optic neuritis, sometimes known as a pre-cursor to MS. The neurologist assured her that she didn’t have MS because she only had one symptom, but cautioned her to call immediately if she noticed any joint pain or muscle weakness. Two years later, in the spring of l996, she started suffering wrist and hand pain that was so bad she could barely dress herself. She also had pain in her knees and ankles as well as a rash on her face. Thinking that she now had developed MS, she made an appointment with the neurologist who told her, “I think you have lupus but don’t start reading everything you can get your hands on because you’ll only scare yourself.” Being a teacher, that was her first inclination, to educate herself. She had never even heard the word lupus. She resisted the urge to get information until she saw the rheumatologist who, after a brain MRI and a spinal tap, confirmed that the diagnosis was neuropsychiatric lupus.

After finding the right combination of drugs, Nanette’s condition stabilized and she continued teaching. By now she had accepted a full time position in an elementary school as the media specialist. She ran the school library, taught classes in the library and computer lab, and was responsible for keeping the school computers up and running. It was her dream job, combining her love of books and enthusiasm for developing the use of technology in the classroom. She was experiencing a calm period in her disease and assumed that she would continue doing this job until she retired at a ripe old age.

However, the calm was shattered starting in the fall of 2002.

That school year started like any other with the usual back-to-school stress, but Nanette noticed that she was more fatigued than usual. By the end of October she was having trouble speaking, thinking clearly, and remembering things. “Every student came to the media center once a week. I knew all the students in the school, but all of a sudden I couldn’t remember their names or I would call them by the wrong name.” By February of that school year she was in a depression so deep, her life was at risk. “I didn’t even know what it was because I had no history of depression. All I knew is that I wanted to die.” When, at the urging of her husband, she finally called the rheumatologist, he immediately started her on IV cytoxan treatments. She responded so well that after only two treatments she returned to work and finished out the school year.

Nanette worked for another year without any major flares. But, in 2003, when the disease flared again and she had to have 6 months of cytoxan treatments, she decided it might be time to think about giving up her job. Stress and infection are thought to contribute to flares in lupus and teaching has more than its share of both. An added concern was that she was experiencing numbness and tingling in fingers of her right hand. A neurological examination and MRI of the cervical spine resulted in a diagnosis of MS in addition to Lupus. She went on extended sick leave and eventually qualified for disability retirement through the California State Teacher’s Retirement System. Giving up her dream job in order to try to regain her health was a difficult choice and not an easy decision. But she took the plunge and hasn’t looked back.

Her family has been incredibly understanding, especially her husband, Larry. “Larry has been totally supportive since Day One. He has never made me feel like I’m a burden to him. He has educated himself about lupus and is very understanding of all the expensive medical tests and treatments that I have required. His attitude has always been ‘Whatever it takes to get you well.’ I feel so lucky to have him.”

Her work with the Lupus Foundation of Northern California (LFNC) has filled a gap in her life. She has been a member since she was first diagnosed with lupus in 1996. She attended major conferences at Stanford and participated in the San Leandro support group. She’s become more involved since her retirement, volunteering to speak on the Foundation’s behalf, participating in the last Stanford conference on the doctor/patient panel, and speaking at the annual Sub Chapter training conference this past June. “The LFNC has provided me with knowledge and resources to cope, as well as extended the circle of people that I know who have lupus. I have met many people who are coping in extraordinary ways and who are truly inspirational.” She started a sub chapter in Alameda last year. “My involvement as a support group leader has allowed me to give back to the Foundation. A friend once told me that helping others is one of the best medicines and I have found this to be true.”

Nanette’s inspiring story will touch the hearts of many who read this. She is but one of hundreds of individuals who have become involved with the LFNC in a volunteer capacity. What a contribution she is making.