Cee asked me a few times throughout the day if it looked like she was limping. It did, but I gave some noncommittal answer. I asked if anything hurt, and she said that it feels the way it does before a flare. Primarily it’s her hip.
I knew that something was coming, but I didn’t really want to face it. Cee started asking a couple days ago when her next infusion would be. She started getting frustrated a little faster than normal with school. She looks a little greyish. There have been a dozen tiny indicators that things are changing. A dozen things that don’t mean anything on their own, and may not mean anything all together…
I’m reading the worst book ever, Raising a Child With Arthritis by Charlotte Huff. Somehow it got sent to us in the mail a couple months ago. Really it would have been helpful two years ago, but better late than never. Most of this stuff we’ve figured out as we’ve lived it. I can only read a few pages before hurling the book across the room. So…it’s taking awhile.
I hate how the book tries to be cheerful. The chapter I’m currently on is titled “Ensuring a Bright Future.” Bleh. I just finished the section on parental coping strategies. I’m not really a swear-er, but a much more useful chapter on coping would just be 6 pages of swear words. I think that would be oddly cathartic.
The book has helped me shift my thinking on remission, though. I used to go into every day hoping and praying for the beginning of the end. I just wanted to end this chapter of our lives and move on. Like the roadkill skunk you pass, just waiting to get past the smell. “Man! That was awful!” you say to the others in the car. They all agree and nod, and pretty soon it’s all a memory.
With arthritis, it’s like you hit the skunk, and it got stuck in your undercarriage. It’s riding around with you, wherever you go. “Man! This is awful!” you say to the others in the car. Instead of nodding and agreeing, they’re all like, “Man! I think I’m going to pass out!” and “What do we gotta do to get rid of this thing? I think I’m going to die!” But there’s no way to get rid of it. It’s your only car. And whether you’re at home or work, it’s always there too, stinking up your life.
According to Huff, “Only 6 percent of medication-free remissions persisted more than five years.” Sure, it’s possible to go into remission. But on the chance it actually happens, it won’t last. Knowing that helps us to view things more accurately. Arthritis is going to stink up Cee’s life forever.
Cee’s steroid has been tapering slowly. The goal was to have her be completely off of steroids by her next Mayo appointment in January. Maybe that won’t happen. Maybe things will get better, maybe they will continue to go downhill. Probably one of the more frustrating parts of the disease is seeing a problem and not being able to do anything. I could call Mayo tomorrow, but it wouldn’t change anything. We’ve got to watch this play out over weeks before we know if we should or can do anything. After a few weeks, things will have either gotten better or worse.
I think I’m going to write a book. It will be called Raising a Child With Arthritis: The Actual Truth. I already told you about the swears chapter. It might be overkill to follow it with a chapter consisting only of the sentence “This sucks.” But that’s another thing missing from the book by Huff. Maybe if things get better over the next few weeks instead of worse I can work out some more positive chapters. For now, mostly it’s swears.
Is there a good way to transition from swearing to wishing you a happy Christmas? No? Okay then. Hope you and your family have a wonderful Christmas, and we’ll keep you updated on whether things are looking up or getting worse with Cee’s arthritis. Thank you for your continued prayers. We couldn’t have gotten through 2015 without your support.