Healthy Living

In Your Own Words: Sharing Your Lupus Journey

Winner #2 - Phyllis McCaston Bull

"I received my diagnosis of Lupus on February 14, (yes, Valentine's Day) 2000. I was convinced, prior to the official diagnosis, that I did NOT have Lupus. I believed that I had Fibromyalgia based on independent research. Yes, I was also diagnosed with Fibro along with Sjogren's Syndrome, Raynaud's Phenomenon, and Dermatomyositis.

I was at home alone when THE call came. I was devastated! I screamed. I cried. I poured out my heart and my soul to only my own ears. Once, I had released all my anger, I told myself that I had never let life keep me from getting up when I was knocked down. I began making peace with these intruders into my life. My most effective tool was to learn all I possibly could about my illnesses. Embarking on this life-altering journey was much less frightening since I was learning what to expect.

As a middle-school teacher, I was forced to change my teaching style (I.e. my students had to come to me at my desk rather than me going to them). Rather than standing in front of my students, I bought a high stool and sat. To my delight, discipline did not cause problems even though students typically take advantage of any weaknesses on the teacher's part. Some days, my voice was raspy or, maybe, just not there. My students were always receptive to my accommodations, very caring, and helpful. They could tell when my Sjogren's had my mouth so dry that I had great difficulty speaking, so one of my darlings would quietly go to my refrigerator at the back of the classroom and bring me a bottle of water without disturbing anyone.

Over the years following my diagnosis, I had a number of students who had moved on to higher grades who would come daily to check on me. One young lady, who had moved on, began meeting me at my classroom door every morning to see what she might do to help me. I absolutely loved teaching and I felt that I was where God intended for me to be. However, my health deteriorated to the point that I had to retire early on disability. I know that God always brings good from less-than-good situations.

Shortly after my retirement, my mother needed me to accompany her to doctor's appointments. My daughter returned to teaching, so she needed me to pick up her daughters on her faculty meeting days. God knew these important people in my life were going to need me! I was always pushing myself to do more than I knew I should and hiding my pain, my fatigue from my family. Then I would totally crash at home for days on end to recover. All the while, my rheumatologist preached to me at every visit that I must "pace" myself, but I honestly did not know how! I have always been a people-pleaser who always put my needs last. One day out of the blue, I read an article about removing stress and negative people out of one's life. This author told me that it is okay to say "no" when I am not able. Armed with these truths which gave me permission to be in control of my life, I have finally learned the art of pacing.

I still deliberately push myself occasionally for family gatherings, social engagements, etc. with the awareness that I will have to do virtually nothing for the next few days to make up for it. Yes, I do endure great pain. Yes, I am unable to do things I wish to do. Yes, I wake up fatigued even after ten or more hours of sleep. However, I will proclaim till my dying day that my blessings far, far outweigh my infirmities!"