Friday, May 17, 2013

Today With Lupus

May is Lupus Awareness Month. Part of me hesitates to be very vocal about my fight against Lupus. I think it stems from the fact that I haven't had all of the blood work done so I don't have a slip of paper that tells me in black and white that "You Have Lupus!" In fact, deep down I am terrified that some day when I've finally seen all of the specialists they will come back and tell me that I don't have Lupus and in fact the tests all say I am perfectly healthy. Yes, I am afraid they will tell me that I'm not sick. Because, the truth of the matter is my every day life screams of a fight. So let's talk about it a little, shall we?

Today with Lupus

Today I woke up at 5:30 and felt the strange internal anxiety that I often feel. I squirmed and stretched too much before I was really awake and ended up with aches and pains that could have been avoided if I had just held still while waking up.

Today it took me four hours to get the motivation and strength to get myself breakfast, my medicine, and a shower. I had to lay down in between each task as well as ask my husband to take care of the kids so I could focus and make sure I was taking the right medication in the right way.

Today I want to stop taking the medication (Prednisone) that has helped me in so many ways because I have gained weight that was so hard to lose and my face resembles a full moon. But I won't stop.

Today is like so many others before it. Filled with patches of remembering and forgetting. Words and thoughts, coming and going. Cement instead of Cinnamon... They mean the same thing, Right?

Today I felt fear of what others might think of me when I move to our new home. I wondered if they will understand why I can't spend too much time outside in the sun or help with the big projects or run and play with the kids. I know I will feel guilty for not being able to help or do enough. I fear they will see me as lazy and selfish. Fear is a sneaking devise.

Today the kids had pizza for lunch, leftovers for dinner and popcorn for breakfast. Lovely!

Today I have a swollen nerve in my lower back - and on my head - and one on my arm and foot. Inflamed nerves cause sharp pain or ridiculous itching. We won't even discuss the sore in my nose and the jagged hairline that I discovered They're Great!;).

And then it happened:

Today I suddenly found myself thinking clearly and moving around productively... The hour was fabulous!:)

Today I kept going. I prayed. I rested. I kept going. I prayed. I rested. I kept going. I prayed. And finally I will sleep.  Because tomorrow will be another day very much like it was Today.

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