I have not been the ideal lupus patient over the years. I would go to the doctor during flare ups and took my medicine mostly on schedule, but I was never vigilant about sunscreen or hats or protective clothing and in the long run, this has obviously done me no good. I never really educated myself on lupus. Yes, I knew that I had it, but I tried to down play it, deny it, act like it wasn't that big a deal. I always knew that I would flare around the holidays starting around Halloween because there was just so much to do. By Christmas, I would be completely knocked out. I did not take care of myself.
Now I have been given no choice but to do so. Why did I wait until I turned 50 to do it? Well, part of it has to do with the fact that this new Benlysta treatment wasn't available until last year. But the other side of it is that I must not have thought enough of myself to do what was important. Bad habits. Eating terribly. Little to no exercise. What was I thinking?
So now I have all this "free" time. Resting. Recuperating. Reading. I am arming myself with books on nutrition...yes, me...nutrition...and I am eating better than I ever have before. It's amazing the difference it makes in the way I feel. I CRAVE everything green and juicy and leafy. I am loving salmon and organic chicken. I used to love greasy hamburgers and pizza and pulled pork sandwiches....that all sounds awful to me now. I haven't given up coffee, but I drink lots and lots of water...something that I never really did before.
I have been reading some good books on lupus. I am finally educating myself and will now be a much better patient and advocate for myself. When I have been on the Benlysta Buddies support group on Facebook, I am amazed by how knowledgeable the people are about our disease and how they have struggled and coped. I am ashamed and embarrassed by how little I know about myself. I am going to remedy that now.
The butterfly is the symbol for lupus because of the butterfly rash that many people have over their faces. I have decided to embrace the symbol of the butterfly for my transformation. Up to now I was the careless caterpillar, eating, eating, eating, not caring what I was doing to myself, being out in the sun, not taking care of myself. That part of my life is over now. I consider myself in the chrysalis phase now. I am mending and evolving. It's a very good thing. I just need a little more time and then...
