The last few months have taught me that Crohn’s is a systemic disease. It doesn’t have a sense of place or boundaries. It’s not shy to start knocking the doors of my joints or steal energy from my mind or make me feel confused and broken.

I’d sum up the biggest problem right now as: prednisone. I can’t live with it and I really cannot live without it. It’s that sort of abusive relationship. I caved and gave into it over the past few months, but then my eye doctor says I have early signs of glaucoma. Most excellent. Thanks, roids. The short story is: I feel pretty good when I’m around prednisone, but it leaves bruises in hidden places. Kind of a soap-in-a-sock attack.

The pattern is like prednisone-induced weather. We start weaning me off in the hopes the other drugs I glug down in great quantity will do their jobs. And everything is great: I feel awake, my face de-chubs, my skin calms down, my heart stops acting like it’s going to leap out of my chest.

But then one day I’ll wake up and I’ll see, at the very horizons of my senses, a fog bank, or maybe they are storm clouds. I’ll feel a bit off. A bit like the pressure is changing inside me. Then the cold front will hit midday with great force, the first downdraft being a profound exhaustion that leaves me racing for the office couch and slowly blinking my way back to life. Then I’ll start noticing pain, in very specific parts of my center, in my tubes. Sometimes there is an eye to the storm, long enough for me to think I’m being a big old baby. And then whammo. Every time. Take it from me: sipping drinks with girlfriends in a nice bar is not the place you want this to happen (this was Wednesday).

Then I make an appointment with my GI, who pokes my stomach–such a simple poke and he can tell so much–and says “Oh, this isn’t good.” And then it’s getting jabbed a few times to count things in my unholy blood and discussions about bumping up the prednisone again, just for a little while. Oh, sure.

I think the cycle is finally being severed. The final verdict on the 6-mercaptopurine (6MP) I’m taking is: fail. It’s time for the bigger guns. Grave nods in the doctor’s office. This time I’m getting a restraining order, steroids. You just listen. I’ll really press charges next time.

I’m going to try Remicade (infliximab). That means every few weeks I’ll trudge off to the St. Vincent “infusion” center for a multi-hour process. Remicade has mouse proteins in it. This is somewhat yikes because some people have a pretty much fatal allergic reaction. So they pump you full of specific doses of Benadryl before giving you the IV drip of Remicade. Plus the mutant factor of mouse-plus-human protein combo is extreme and will probably stoke my ability to freak out my friends.

So I imagine it’s a lot of drowsing and laying around while they dose you and then stare at you for a while afterward to make sure you’re not dying or whatever.

Now I’m in prep mode. I have to go to the clinic again today for a TB skin test. It involves blowing a bubble in my skin, which I must say creeps me out in that same way that coccoons and squished cockroaches and alien spaceships do. But apparently if you have latent TB and you get Remicade you like shrivel up and explode and die or something.

The internet says: “The cost of each infusion of Remicade is $1400.”

Zoinks. I guess I have expensive taste.