I feel this…

my nephew’s lady love is going thru the hell
of being diagnosed with lupus

she’s 21 years old
and hurts as much as an 80 yr old
like all of us living with chronic illness
she has good days
and bad…

today she wrote this…

“this is it.
I wake up. I crawl to the edge of the bed. I sit, head in my hands, tears on my face.
I struggle to stand and walk, I stand in the shower and I let the heat work its way through my body. I feel better. I determine what pain medication to take for the day. I take it. I wait.
I put my makeup on, I stretch my body now that the aches are less. I bend, turn. Stop.
He kneels in front of me and massages my legs and feet. “be careful, baby.” I tense, flinch.
I drive to work, flex my hands on the steering wheel. Hide my skin and eyes from the sun. I love the sun although it burns my eyes and sickens me. I sit in my car, close my eyes. I am strong enough to walk. I am. I know I am.
I work, I flex my hands. My head aches and my nose feels as if its been scalded. I laugh and smile and cringe inside. I am exhausted. My fever rages, my skin itches. My bones ache. My insides ache. I fear whats making them hurt. I fear my future.
Leave work, see doctor. Test after test. Look for problem, fix. Seek and destroy. Wait.
Go home, try and eat. Sick to my stomach, I struggle up the stairs.
I snuggle, I laugh. My life is good, I am lucky.
Rest, laugh. Love. Be calm and prepare. One day down, One day at a time.
This is my life, the life of 2 million other men and women living with my disease. We are at war with our own bodies, the very immune system that is supposed to heal us, is killing us. Lupus is a disease without a face. It has no tests, no outward appearance, no cure. Few treatments.
We hide from the sun, from our favorite foods.
We never bear children.
We replace our organs with hope for a few more years. We take harmful medications, because there is no other choice. There is no help for us, no hope for a cure, little hope for pain relief.
But what else can I do. I must live, so I do. To the absolute best of my ability.”

I am in awe of her strength..
she has a long way to go
dealing with what for many would be a life crushing blow
her motto is
“can’t fail”

she’s real
I’m proud to know her.