Every day is a long day

We just found out this week that Drew's secondary insurance decided not to renew us for the upcoming year like they have every year for the past 3. Instead, we have to save receipts and prove to them that we spend a certain amount out of pocket on our medical expenses on a monthly basis and then fill out a gazillion and ten forms and send it back to them for review to decide if they will cover us. It's as though they think that this disease gets cheaper to manage as time goes on, when the exact opposite is true. There are more medicines and treatments, taking more time and costing more money, and none of it keeps him from getting any sicker. The co-pay on Drew's monthly medicines is around $6,000, monthly, so hopefully we will be able to get their decision changed fairly quickly, but it's just something else that's been added to my plate, something else that I have to fight for, and I hate fighting all the time.

We're into our 15 day on/off cycles of inhaled Ceftazadime. When we finished our first cycle, Drew's cough was nearly gone and his appetite back up. We've been off for a week now, and just this morning he decided he didn't want to eat again. My gut (and the data that I have been collecting on his behaviors) tell me that that means he's getting sick. I hate that he's always sick. I'm always fighting with him to eat, to drink, to take his meds, wash his hands, use the bathroom. He takes a multivitamin that he recently started refusing because they no longer make the kind that he'd been on his whole life. They changed the flavor to orange and now he won't eat it. My husband tried it and said that it tastes like vomit with a little citrus flavor, so I can't say that I blame him, but he needs it and so I fight with him to take it. I fight with insurance over whether or not certain medications need prior autohrization and then fight with them again when I don't get what I need in time because there are so many stupid policies and procedures in place, that,  I might add, are direct barriers to adherence. 

Patients and caregivers dealing with chronic conditions need a break! If it weren't for our fight, nothing would ever get done. Yet we are the ones with the least time and the least energy left at the end of a long day, and every day is a long day. I'm tired and I'm annoyed. I'll be appealing the decision but it won't be without a fight.