I was putting together some training materials for an upcoming seminar that my husband's company is putting on, and the subtitle of the class caught my eye: "My Way is not the Only Way." Really? You could have fooled me.
I'm pretty sure that from the very beginning (Day Zero in the life of Sara G.), I had perfected the art of being stubborn. My parents would agree, my husband would concur, and, no doubt, one day my daughter will say the same - I've got the whole headstrong thing figured out. I even think I've blogged about this attribute before, because when I looked into my file folder of past blog pictures - I saw a big ole' mule photo staring back at me. Hmmm - I wonder what that could have signified?
Truth is - my stubbornness has actually come in handy from time to time. I've spent many a visit to the ER, stubbornly waiting at the little sliding glass window, looking pitiful so that I could be seen as quickly as possible. (I realized on one of my first visits that when you don't look sick and you're not bleeding - you get pushed to the back of the line. But the pain of a massive lupus flare is not a back-of-the-line kind of issue, wouldn't you agree?)
I would also say that my stubbornness in not letting lupus get the best of me eventually led me to where I am today...but it would be unfair of me not to mention that it was that same stubbornness that kept me from acknowledging that sometimes, you just can't do everything you want to do, which, of course, means that your way may, surprisingly, not always be the only way.
Compromise is a very difficult thing - especially when you're stubbornly working against yourself - refusing to accept that the things you think should be possible in life with lupus just aren't. Learning to give yourself a break, let something slide, or acknowledge that you can't do something isn't only smart, it's a sign of maturity.
Today, I can see that ignoring fatigue or acting as though my joints weren't swollen wasn't being tough or strategic. It was being silly and negligent.
Today, I realize that adjusting to life with lupus isn't about giving up. It's about giving in. Just a little. In order to get back. A lot.
This week I was diagnosed with an auto-immune disorder. I was reading your blog today regarding "Free falling tears..." About two years ago my symptoms began. I went back and forth to my primary doctor for about 6 months. I vividly remember describing the profound fatique to him - my inability to climb 12 steps and how taking a shower wiped me out for the day!He began to tap his fingers on his desk and turned to me and said, "I can't figure you out - YOU NEED TO DRINK MORE COFFEE!"That was his remedy. I knew that I would never again see this physician for any reason whatsoever. And by the way, I don't drink coffee!!! I always had an amazing amount of energy and was a high-level performer at work and involved in numerous volunteer activities. I am numb from my diagnosis and went on the internet to look for help in how to live with my disease. I have not had the free falling tears yet - I am just so angry at this point because I feel that my life is changed forever - I am no longer that vibrant, successful women full of vigor and optimism. My bad days far outweigh my good days. I know that I am going to have to embrace my situation and learn how to live well. I appreciate your blog - it helped me feel connected to someone who understands - thank you! Jackie