Wednesday, January 12, 2011

The Chess Game

Sometimes there are moments when you make it through something and think, "Did I seriously just live through that?"

Last week was one of those moments for me.

We had tried to add another pain medication to my current regimen. We'd done that with a different med before Christmas and I wound up reacting and very sick to my stomach over the holiday, but in retrospect that just seems inconvenient. The reaction I had overnight on Tuesday was something I couldn't have imagined.

It involved literally not being able to move for hours, not being able to call for help, and when I finally could move... getting sick, hives, my skin itching and then burning, shaking and sweating and my heart pounding so hard my chest hurt for days. My voice and breathing are still wonky. It was scary and painful and I feel like I'm a very lucky girl to have come out of it.

But the major point of this isn't the story of the reaction. To me, the ramification that matters is never being able to try a new medication again. When the nurse arrived we both agreed I wouldn't make it through a reaction like this a second time, and that means the only medications I can have are the ones I'm currently on.

That's a daunting concept when you're only 37 years old and you know you have a lot of years ahead that could get a lot worse.

Although I've never been smart enough to learn how to play chess, I imagine living with this takes the same strategy. People who play the game say they are always trying to think three moves ahead to see where the game could take them.

For me, every decision, every action leads to future ramifications. We look at the fact that every new medication for my disease has caused a reaction, which have increased in severity. We know that nearly every time I've gotten very sick, like with pneumonia or Cushing's, my body has taken to attacking a food I regularly put in my system [like whey]. And the last food I reacted to [cocoa] was random and unexplained as to why it started.

The point is this: if I get sick and another reaction occurs, it could involve my body reacting to a medication already in my system instead of food. If that happens, I will have absolutely zero other options for controlling the disease or the pain. As my nurse and I were talking, my brain started to spiral thinking how high the pain would get if I ever reacted to the Imuran that helps control the disease. It swirled as I realized there would be nothing left to do about it.

My nurse then brought up the fact that it's not out of the realm of possibility that I will start rejecting more foods.

I asked her what would happen if I ran out of food options. We started on our "chess game strategy." We'd have to go to feeding tube or IV feedings. But then we remembered that I couldn't keep a PICC line in a few years ago because my body reacted to it. Which means we'd have to find another option for nutrients that didn't involve a permanent access point. But a lot of supplements would contain ingredients that I wouldn't be able to ingest.

Do you see why my head starts to spin? One move, which leads to another move, which leads to another problem, which leads to no solutions because there are no realistic Plan B's. It sounds dramatic and unlikely and like some bad Lifetime movie plot, but the truth is that it's very possible in my world. I mean, I'm the girl who can't breathe normal air.

That's when I had to stop and remember something very important.

God gives us what we need when we need it.

Not before. Not after. But during.

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
                                                         ~Hebrews 4:16

There are so many "what if" scenarios that could realistically happen to me. But I can't plan ahead and expect there to be solutions to problems I'm not currently facing. Because God gives us what we need when we need it.

In our time of need.

There has never once been a time in my life when I was faced with a problem that an answer didn't present itself in some form or another. And if God hasn't abandoned me in 37 years, I don't know why I think He would abandon me in the 37 yet to come.

So I'm quitting my chess game before I even learn how to play. I'm going to trust Him. And praise him. And go along for the ride.

I will not let fear have the power.

How about you? Do you trust Him more than your fears?

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