Friday, April 27, 2012


I woke up. Hands, feet, head, belly. Normal, MS normal. What a blessed relief. Almost felt as good as the smell of the sweetest spring rain. After a month-long bladder and kidney infection; seven days of constipation; and too much, things felt—almost normal.
{side note: normal is not kick up my heels, open my own container of yogurt, pick something off the floor, think a clear thought, go to work, grab a cup of coffee. normal is still pretty darn abnormal}
The morning grew into a pretty good day. I was gifted with a room remodel and now find my hospital bed nestled into a brightly organized room with floors and a window that looks out onto the garden. I have my own TV, and my books and computer are at hand. It was one of those times where I heard myself thinking, "I can do this." If my life is going to be this bed, this room, these dogs, this body and I can get through weeks like these last couple then OK.
A couple days earlier, at two in the morning, after six days of ingesting every evil potion trying to make my seemingly stone-deaf colon listen to my pleas for cooperation I found myself praying for relief. Then, I stopped and thought, "why would the God of the infinite universe be concerned with my poop problems?." I was so utterly miserable and in pain and sleepless and vulnerable. Then I realized that in that moment perched naked on my commode gripping the handrail trying desperately not to fall that He was more present and listening to my prayers than I had ever felt Him. The words from a favorite praise song came to my mind, "Tell me, once again, who I am to You." 
I have a caregiver in the afternoons now. And it is really good. She is kind, professional, and is giving the hubbie and I some much needed help. The kitchen is spiffed, dinner is cooked, and most importantly, I am receiving consistent daily support with my care. She came in after lunch Thursday afternoon and we were busy with meds and exercise. Things felt good.
Do you sense a but? It is coming. Since February we have been working to be on Medicaid so that I can have a caregiver and help with medicines and other expenses. The first hiccup is the monthly cost: over $700. But, somehow we shaved and cut and trimmed and made a plan to do it. It is an endless battle of phone calls to a faceless bureaucratic spiderweb that twists and tangles to the point that a former grant administrator and a current auditor can't untangle what it takes to be a participant. Thursday afternoon I found out that we were told incorrectly and one of our largest expenses is not covered. Just like that. No Medicaid. No options. No caregiver. Well, maybe no caregiver.
I never give up. I am a fighter. I closed out my day by turning off the phone, trying to breath, curling up with the hubbie. Can't I have more than a few hours of only abnormal?

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