Wednesday, June 9, 2010

The way it is.

So chronic illness is just that. Chronic. It doesn't go away and becomes a part of everyone it touches. My daughter hasn't been well in years. YEARS. I never thought about any of our kids getting sick and not getting better. Watching disease take over your child's life is a soul sucking experience. There is no way I can be who I was before all this. Sometimes, I walk around with thoughts of how so few things truly matter in anyone's life. I would give up everything I own, my own life, if my daughter could be healthy. That brings me back to the fact that God doesn't play "Let's make a deal". I wish, but then God wouldn't be God.

Two weeks ago she had two good days in a row. Sunday and Monday. Fatigue and pain didn't take over and prevent her from wearing sparkly eyeshadow and going on an outing with her friend. Hallelujah! Those two days were gold star worthy and I'm holding out hope that more of those days will come soon. It's getting harder to hope like that.

Right now, there are stomach troubles which may or may not be caused by an ulcer. It wouldn't surprise me considering the ridiculous cocktail of stomach irritating drugs she has to take on a daily basis. In two weeks she'll see another specialist that may or may not know what they're doing (because that happens a LOT) with someone like her. Who probably has never seen or heard of a kid having so many problems, especially not her problems. Ulcers are common, right? If it is an ulcer. More likely, she probably has some other rare problem going on that will take no less than four doctors and ten months to figure out. That's what I expect because that's how we roll. Too much of her life has been spent in pain while medical science fails her. It's happening at this very moment.

I'm done for now. Autoimmune disease sucks. I'm hormonal and exhausted from watching my girl suffer more than usual the last few nights. The doctor finally decided to refill her pain medication so she is sleeping and I'm going to sleep and read my Bible in the morning and ask God to help us out here. This is the way it is right now.