Cee is unable to walk, stand, or roll over without intense pain. She wakes up crying multiple times throughout the night. And this is with the meds she’s already on. She spends all her time on the couch or in bed, unless we’re going to swim therapy. There is much wailing and gnashing of teeth to get there (she feels every bump in the road), but swim therapy has been amazing. It’s the only place she can move without pain. In the water, she’s a different kid. It’s tempting to turn our whole house into some sort of aquarium, just to make life easier for her.
We’re doing the best we can with where we are right now. So far David and I have been pursuing almost every “hot tip” we’re given from loved ones and acquaintances. Although the suggestions are given in love, it’s probably not the best use of time or resources to keep grasping at straws. And that’s really what we’re doing right now.
It looks like the only thing that will quickly pull Cee out of this hole of suffering are those drugs that I’m terrified of. There is no cure. Is it possible that some alternative medicine will help? Sure. But all those methods take time we don’t have. The longer Cee’s inflammation is out of control, the more likely it is that she will have permanent joint damage. It is possible that there are things out there that can help Cee get off meds sooner, or help her stay in remission if we get there, but now isn’t the time for those.
Call it being hopeful, or maybe naivete (should that have a couple accents? It seems like an accent kind of word), but we honestly thought there was another way. And so the pressure was on us to find The Answer. If only we would find The Answer, then Cee would get better. And as Cee got worse the pressure and guilt just compounded, because we couldn’t find The Answer.
We are doing the best we can right now. And how that looks over the next few weeks is some super-scary drugs. We do plan on continuing our diet with some slight modifications. We do plan on continuing swim therapy. But everything else is going to take a back seat for now. This is going to involve a new set of challenges, so please keep your comments to yourself if you don’t think this is the best course. Thanks. We’re doing the best we can right now.