Sometimes I fight the urge to take it and do my best to conjure up old strength and will and I just can’t get there. I lie in bed staring down the ice breaker to my day, wondering when dependency got this heavy. So heavy that without it I stand to let down longtime friends, piss off my significant other and disappoint family that has seen me tackle so much more than everyday pain. It seems impossible to find the words to describe the inferno that RA is these days. That it spreads as fast as a match lit and even when I can put out the fire the fatigue that comes after it is sometimes so much worse. Because how do you tell someone, I made it through the pain but I’m just so tired, too tired?
Tired of justifying my pain, fatigue and my need for assistance. First to myself, next to a Nurse, a Doctor and finally a pharmacist behind a counter who only understands audits and sees pen to paper not a person with a disease. Most don’t look up from the counter at all, they focus only on a scribbled date, a lazier than usual Doctor’s signature or the real jackpot, when someone new has stepped in to fill out the prescription and they can raise multiple concerns over filling the one prescription, besides my chemotherapy, that gives noticeable improvement.
When days at the Doctor mean long wait times, lots of tubes of blood, body manipulating x rays, the poke and prod to find the pain exams and then the haul of paperwork over to the pharmacy where I hold my breath each time I walk in because this is perhaps the most uncomfortable part of the day. It’s a place I have to consciously confront my weaknesses. I can no longer pretend I don’t need the help, that I can mind over matter my disease. I have to go here to put into words the fact that, on my own I am not enough. That as positive as my attitude is I have lost the ability to come through my RA on a some what daily basis. While I live in a world that has many options to help control my disease, it is still a stupidly strong adversary that has had plenty of time to leave nothing but destruction in its wake. While there were many, many years I counted my worth and strength and wins in how small my orange bottle stash was and just how full I could keep them as the calendar days fell away, that girl seems more of a distant memory than ever.
As I’ve failed one medication cocktail after another, and the dosages go up instead of down and just the word refill hangs heavy with anxiety I wonder why it’s so difficult to get. Why the red tape of prescription drugs is not mentioned as a side effect yet, I can’t tell you. For some people who will never live this life, I’m sure I’m the poster child for addiction. But the difference here is by the time I reach for that prescription bottle I’ve suffered through hours of pain, limitation, and anguish. Practiced one coping mechanism after another, gone to my mental happy places and back again and still RA and I will do this dance all day and all night and I’ve finally given into the fact that hydrocodone is the only thing willing to support my arms and float along with me on this dance floor, even if it's just a few fleeting minutes or if I'm lucky, hours. And honestly it’s nice to know that after a decade of seeing the same Doctor he trusts me to know that no matter how bad the pain gets I will take my same dosage just the way it is prescribed and that in the time he can’t see me or protect me, pain medication is what he can do in those difficult moments. We both understand that it is sometimes the only nudge left available to push me back into a version of the world I can participate in. But even with this much history, understanding and know how between us someone outside of us stands to make decisions about my life and my disease. An outsider whose knowledge comes from statistics, complete with data not taken from a person like me, will set up fear and misinformation that makes every bump along this journey that much harder to navigate. So along with pain, limitation, fatigue, and the sometimes companion of depression we can now add frustrating politics to our struggles. I’m not sure how we got here, but I can say I will do everything in my power to not stay here. I know that needing a drug is not the same as an addiction, I don’t know that chasing the feeling of health and normalcy is a crime, in fact I’m fully aware of the industry we call “Medicine” and how they've made a business out of it, and if I’m a criminal I’m in quite good company.