Six years ago, I was handed an answer of lupus along with a bag of questions that came with it. Life already was hard before my diagnosis, as a working single mother of two boys. Knowing I had lupus didn’t make it any easier.
I rocked my five-inch heels while clocking 50-70 hours a week, and I loved my life. Two years later, I was struggling with the implications of what that diagnosis meant to me, my boys, and our lifestyle. Eventually, I had to resign my position as dean of a multimedia college so that I could focus on my health and my boys. After two years of learning to live with lupus at home, I was ready to learn how to take it back to work.
Nothing had to change
When I was first diagnosed, I told myself that “nothing had to change.” My lupus was what I would call moderate to mild. Sure, it affected my joints and my digestive system, and caused some skin issues, but nothing too major. It was nothing that made me feel like I had to change who I was or how I lived my life. My lupus had begun flaring up more and more, hence the diagnosis, and was apparently only getting started. The flare-ups were getting worse each time, and heavy pain killers and lupus medication became a necessity.
After years of trial and error and using various treatments with little to no results, I finally had to admit that my lifestyle needed to change. I slowly pulled back my hours each week, working less and less at the office while working more and more from home. The flare-ups became so bad that at times I couldn’t work from home, and then the college began to suffer.
My co-workers were trying to hold up the fort when I was at home. While I appreciated the help everyone was giving in order to help me “get better,” a new reality had begun to sink in. I wasn’t ever going to “get better.” I might find a drug that worked better than what I was taking at the time, but I was never going to be able to work the way I had in the past. My brain was still craving the excitement and energy of my old life, while my body was screaming for a new one.
We bought a cabin in northern California and surrounded ourselves with redwood trees that were older than our country. I needed to teach myself to slow down, to breathe again. It was quite a blow to the ego and the soul finding out that I couldn’t be the workhorse I once was, and learning that, in fact, it was killing me. While my new team of doctors up north worked on healing my body, those redwood trees worked on my soul.
My boys and I truly found ourselves in those mountains. I found the courage I needed to stand on my own two feet. I opened my own consulting company, Buddha Global Consulting, and worked on projects because I wanted to — not because I had to. I wanted my time to be spent working on things that made me happy, projects I felt truly were worth my time, regardless of the pay being offered. I had begun writing on the front porch of that deck, facing the largest redwood tree for miles around. And it was on that deck that I decided to begin writing my first book on Living Life with Lupus.
A new low
My life hit a new low as I replaced my cane with a wheelchair and couldn’t even make it upstairs to bed.
Sadly, I came to find that the rain and the cold, wet weather of the winters were just too much for my body. I’ve noticed some with lupus can’t do cold, and others can’t do heat. The weather was cold-to-the-bone freezing for me and I was miserable. No amount of hot baths or Jacuzzi time could warm me up.
I began to get sicker and hit an all-time low when I was faced with life in a wheelchair. The stairs were too much for me and I had to resort to sleeping on the couch downstairs. Yet, I noticed that when I traveled for family or clients to warmer, more humid areas, I felt better. After a particularly wonderful trip to the Carolina islands, it hit home that I might need to move.
After six months of moving to the humid Savannah area, my doctor switched me to a new drug called Xeljanz. The combination of the two created a new woman ready to take on the world. Same old world, but brand new bridge. I probably always will have lupus, so don’t get me wrong. I just have a different take on how to live with it.
It’s about time for me to head back to work, and I am taking lupus with me. This time, though, I’ll be doing things much differently — working smarter, not harder. I’ve learned I don’t need to have crazy energy to make a difference in my world. Being able to go back to work with lupus has shown me that I already have.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.