If you know me, you know that I am a planner. Before going on a trip, I will spend months researching places to eat and things to see. I'll create spreadsheets with information including addresses (and of course a map and driving directions), phone numbers, websites, hours of operation, and any other things that might be important. I'll put together an itinerary and have a nice portfolio of information before we even leave on our trip. For our last family trip, I even put together a website to share the information and keep my family updated.
So, you can imagine how hard it is for me to have a medical condition as unpredictable as lupus. Not only is it different for each person, but it constantly presents its host with new symptoms and hits suddenly with little to no warning. The information provided by doctors and medical books/websites is vague and limited because it is a disease that is very hard to define. I've learned a lot by reading the words of other lupies. Sara Gorman (author of the book I am reading) wrote a post on her blog that reminds me of just how vast and various lupus is.
I try to arm myself with as much information as I can so that I can prepare myself for the "trip" ahead, but sometimes I just need to learn to embrace the spontaneity of lupus.
- a little lupie -
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