My first Remicade infusion was April 20. My second was May 7. I’m taunted by short bouts of relief. I’m aware that it can take three months to begin to enjoy the effects, but when you are in the middle of a flare up, you can’t even see thirty minutes into your future. You can’t see beyond the pain.
At times it feels like my lower spine was smashed with a framing hammer. My hips don’t feel much better. At least I’m reminded of my disease because too many days of relative comfort make the pain fade into a fog where you can’t quite grasp the enormity of the crushing torment. That is perhaps the greatest gift. Those are the days where I’m completely disconnected from my illness because I can’t quite remember how crippling it feels. The memories rush back as you stagger like Frankenstein, though.
It feels like I made a mistake when I made the leap from Humira to Remicade. Humira works for me, but I dared to try something new to see if I could feel more normal. I’m drifting in agony and my dad decides to text me about my sister. About some sort of reconciliation. I’ve played that game before and boundaries are more important than dealing with something hopeless. Don’t get me wrong. I wish her the best, but we have never been close. We are strangers linked by blood. After you sift the details, we are still strangers.
I rattled off a laundry list of what I endure daily, and to look at it, it is rather depressing. I told him that I haven’t had a pain-free day in almost six years. I told him I have days where I don’t know how to survive another thirty minutes, so if God grants me another thirty years, that is 262,800 more hours of desolation. Sure, some days are better than others, but the pain always lingers. It prowls waiting to consume me. And I’m devoured moment by moment.
I don’t think he ever considered my problems. He just wants to repair a dysfunctional family before he dies. Good for him. He just needs to pick a new family on which to focus his efforts. (I hope that last sentence was properly structured. I was thinking of grammar nazis and prepositions. If not, I really don’t care as I think an alien is erupting from my spine right now).
When I wake up in the morning, my focus will be counting the hours until I can go back to sleep. An Ambien induced slumber that allows me an unconscious respite. My little slice of heaven.