I’m a nurse in a NYC public hospital and we have a cohort of patients w/SC who I see in the ED at least everyday or every other day. The hospital has a SC clinic but when it closes the patients come to the ED. They don’t have to wait and everyone knows them. So for the next 6-8hrs they are given high doses of Dilaudid/Benadryl (at least three rounds) and are released. Okay, the question – are they addicts? I mean I KNOW SC is a horrible disease and reading your blog only drives that home for me. But honestly as a nurse my compassion is waning. The patients wait at the desk 2-3hrs on the dot after the last dose saying they need the next. Seeing them on a daily recurring basis only decreases my compassion as well. I really would like to get your take.
No, they aren’t addicts. Think of the worst pain you have ever had in your life. It could be a broken limb, labor, migraine or even the shock like twinge you get once a while when you turn your head the wrong way. Okay now multiply that pain by 1000. And imagine that it’s unrelenting, constant and totally all consuming. Picture that pain not only in the affected limb but all over your body. Imagine the pain immersing every single one of your body cells, coating them like fire while a million men are drilling into your bones. You can actually feel every single cell in your body screaming in pain, you can feel with every breath the pain gets worse and worse and worse and worse.
That was just a short snapshot of what a pain crises feels like, in fact, that was just a mini-compilation in words. In actuality it’s so much worse. You’ve been on all kinds of pain meds all your life, in fact one might say you’ve built a tolerance to them. See tolerance is not the same as addiction. Addiction occurs when you crave the medication but you don’t have any pain at all, Tolerance occurs when you’ve been on pain meds for a while and your body is accustomed to the dose, so now, a dose that you consider ‘high’ is actually barely scraping a few shards off the pain.
At the most, the Benadryl zonks you out enough that you can ignore the pain, but it’s still there like a beastly monster, waiting for an hour or so just to pounce and devour you in waves of agony all over again. Your tolerance is to the level that the Dilaudid dose just helps to take the edge off, the edge that would otherwise have you screaming and rolling on the floor in hysteric misery.
Unfortunately for you, your prescription ran out, or you don’t have a high enough dose to cover the immense pain that you are feeling. The clinic is closed. You were just in the ER yesterday, but got discharged still in pain. You don’t want to go back to the hospital, but you have to, because right now at this very moment, you feel like if you don’t get some help, you are going to die. It’s a fine line between wanting to live and wanting to die, and that’s the determination that makes you go to the hospital.
The nurses and doctors remember you from the day before. The doctor tells you that you were just here yesterday and should see your primary care physician. The nurse tells you to stop messing around, she’s busy and doesn’t have time to deal with fakers or addicts. You try to carry on a brave front, but inside you are a roiling mass of despair. The pain doesn’t even let you focus, it doesn’t let you express what you really want to say. All you can do is grip your sides and pray to God for mercy.
You watch the clock, still hurting but too proud to ask for more meds. The dose the harried nurse gave you was small and didn’t do much. You smile and say thank you, gritting your teeth and sweating profusely in the effort to remain civil even though this fiendish torment is owning you, claiming you, torturing you. The hands on the clock creep slowly onward until finally you realize it’s almost time for another dose. Perhaps this time you will find relief from the anguishing waves of pain. Perhaps.
Alas, your wishes are in vain as this dose barely does anything more than the last did. You know you should ask for more pain meds, but the look the nurse gave you when she injected the so called ‘large’ dose was enough to keep you quiet. You don’t want to risk rejection and apathy from the people that are supposed to show compassion to you. So you go inward, into your happy place and become zombie like, trying to float outside of your body so that the pain doesn’t get you. The nurse thinks you are sleeping, and tells another, “she’s just drug seeking”. Those words reached you and caused your heart to break some more. Now it’s not just about the physical pain, but the emotional abuse you’ve gotten from the hands of the ‘helpful’ has just made you realize how bleak your situation is. No one understands.
Finally after the last dose, the nurse and doctor concur that you are well enough to be discharged. Your pain is still there, the underlying problems aren’t solved, in fact they weren’t even addressed. You are about to be discharged because you got the requisite three doses of Benadryl/Dilaudid and the ER ‘can’t do more to help.’ Because everyone knows that three doses is enough to fix you. It’s enough to fix sickle cell pain and let you go home. Besides, they need the bed for sicker patients. You protest, faintly at first, then louder, “But I’m still in pain! I’m still hurting!” Your pleas fall on deaf ears and icy demeanors. You are practically shoved out the door, paperwork appearing instantly, your IV taken out and the CNA unceremoniously comes to the room and tells you she needs to clean the bed.
The pain is still intense, you can barely walk—in fact, you find yourself falling as your knees buckle down. Your hands reach forward and prevent you from landing on the floor. Your joints protest as you use them, the cold hitting you and making everything a thousand times worse. You drag yourself by sheer force of will outside, forcing yourself to just keep breathing, keep living, keep fighting. Go Vixen, go! Just take another step, just crawl one more inch.
Tomorrow is another day. Perhaps tomorrow you will find some relief from this all consuming, all encompassing agony. Perhaps tomorrow someone will throw the rule book away and treat each patient on an individual basis. Perhaps tomorrow the doctor at the clinic will give you a higher dose for your oral pain meds. Perhaps tomorrow you will come across someone that actually understands, or at the very least, has some fuckin’ compassion.
But today, all you have is you. You and your pain.