Sleep/Rest – I had trouble sleeping often due to pain from neuropathy in my legs. Instead of staying up late, many nights I drank a cup of hot decaf tea with honey and milk, sometimes while soaking in a 1:00 a.m. hot tub bath before going back to bed. More often than I would like, I have had to reach for Ultram to control neuropathy and joint pain well enough to get sleep.
Nutrition – This is an important part of any health battle. In 2011 I cut out most of the empty calories and highly glycemic foods: white bread, chips, high calorie salad dressings, cakes, cookies, candy and sugared sodas. My husband and I packed lunches consisting of lean meat roll ups, and a variety of fresh fruits and vegetables. We reduced carbs way down at dinner, strictly limiting carbohydrate serving size to about 1/2 cup, and we doubled the vegetable servings to twice the “serving” size on most frozen food packages. I replaced sugared flavored coffee creamers with 1% milk and sugar-free Torani flavored syrups.
Exercise – My aerobic exercise was sporadic. Some months I was consistent using my fluid trainer to cycle indoors, getting my heart and lungs pumping. Days I exercised, my arthritis pain and CNS lupus symptoms were greatly reduced for the rest of the day. During the year, I took up doing yoga exercises, and was able to increase my back flexibility, range of motion and strength. Also, the yoga turned the tide on my stomach fat, and for the first time in over ten years, my tummy fat is getting slimmer.
Weight – because of the positive changes in nutrition and exercise, I have lost 22 pounds in the last year. The great part is that my husband and I have both lost almost the same amount. I lost one dress size, and am enjoying easier breathing (with my asthma) and have gained strength.
Stress and Fear of the Unknown and Uncontrollable – The economy, increased prescription premiums, gas prices and our daughter and son-in-law moving in were stressors. Also, during the year I studied for and passed a major professional certification exam, and traveled out-of-state three times. I dealt with my father’s failing health and Alzheimer’s disease. Dealing with impaired CNS cognition, short-term memory, pain and fatigue bring lupus-related stress and humbling limits into my daily experience.
Work - Life Balance Goals
Work – My challenges this year included the headaches of my professional work responsibilities managing a city attorney’s office, including financial issues associated with operating during a recession. Due to increased lupus flares, I lost more work days than I wanted to, exhausting my accumulated sick leave and tapped vacation leave in lieu of sick leave. I start work at mid to later morning, but worked too long most nights, not getting home until after 7:30 or 8:00 p.m. One day each week I telecommute from home.
Overall Health – Fall brought a long sinus infection that took three antibiotic prescriptions to clear it up, impacting my overall health. Thanksgiving week two boxes full of books fell on my back and head while I was on my hands & knees getting stuff out of a low cupboard, causing severe neck and upper back stiffness for over a month.
Lupus Severity – The severity of my lupus continued its 2 year escalation of severity, until Benlysta infusions began in the fall.
Lupus Symptoms – This year brought increased fatigue, malaise/nausea, mouth and nose ulcers, mental confusion, painful evening peripheral neuropathy, and increased discoid rashes on my hands.
Lupus Treatments – Increasing baseline prednisone dose during the first half of the year, to deal with increasing symptoms with monthly Benlysta infusions that started in August, permitting the beginning of a slow taper of my steroids. I am ending the year at 7.5 mg per day.
The year ahead will to some degree be what I make it. The decisions, habits and daily choices I make between now and December 31, 2012 will impact the outcome of my lupus and ultimately affect the quality of my lupus “adventure” in the year ahead.
What are your challenges and goals for this coming year?