by Jenny Blaser
My time in 1217A has come to end and I am now in 1212B. The Express Admittance Unit, where I started out, was only for short term stays and it has become evident that I am going to be here for a while. With that I was relocated to the main General Internal Medicine ward. It wasn’t an eventful move. No elevators were needed. All I had to do was go five doors down the hall. When I got here I had a roommate, but it only lasted a few hours. It seems no one wanted to be roommates with [my guide dog] Penny, and so the space beside me remains vacant.
This room is just like the last. The walls are boring and neutral-toned and the floor is beige linoleum. There are two beds divided by a curtain that currently sits open allowing me an unobstructed view of the door, which I insist stays closed. My bed is now beside the window but I keep the blinds closed too. I don’t like natural light much and all I can see from the window is Gerrard street stretching out below with a lovely view of two other hospitals across the way. At the foot of my bed there is a large white board with different sections on it like “Your nurse is:”, “Your diet is:”, “You are here for:”, and “You can leave when:”. My board is empty with the exception of “Your nurse is: Alice.” This has led my friends to joke that this place is Guantanamo Bay. I am being kept here forever and without reason.
I just told my most recent visitor to leave because I needed to sleep. It was not really the truth. The truth is that my pain is getting close to a 9 on the 1-10 pain scale and I didn’t want to risk them seeing me cry. It is rare that I cry from pain, and when I do, no one witnesses it. I think my family doctor is the only one who sees my tears at all and it is only because her position means she has a strict Code of Confidentiality — she may see it, but she can’t tell anyone.
My knees and hips are aching from the pressure being put on my joints by my contracting muscles. My lower right back is definitely a major contributor to the pain and the lumps that sit just below my skin and poke at my pelvis and nerves are certainly doing just that. It hurts a lot to lie on my back but it hurts just as much to lie on my side and move the pressure to my inflamed and throbbing hips. I move to my stomach and give a gentle push on my abdomen. My shoulders lift up off the bed as my tummy muscles contract to guard the tender structures in my gut from this assault. I move farther up my body still and I rotate my left shoulder a bit. It too is throbbing from the pain of the muscle spasms and from the injuries caused by improper lifting after the fall.
I fumble with the call button and manage to push it with relative ease compared to past attempts. I hear a BEEP followed by some words I can’t discriminate, even with my hearing aids, and I know that this means Alice should appear shortly. I glance at the clock to check the time. It has been a little over an hour since my last dose of breakthrough pain medication. Breakthrough medication is pain medication given on top of what I take regularly for when the pain gets out of control. I am allowed a small dose every hour.
Alice bounces into the room with a big smile. She is petite with black shoulder length hair and deep brown eyes. She wears oval framed glasses and brightly colored scrubs. Her smile seems to be a permanent fixture and she is forever cheery and happy, even when concerned or scared. Alice has been my nurse for a few days now and is all too familiar with the pain we have been fighting with.
“How can I help you?” She says with her cheery child-like voice.
“Can I have more breakthrough? And has the doctor responded?” I ask. We have been paging the team for three days now trying to get a doctor to come and see me to adjust my pain medication. We had increased my dosing a few days ago but it was only sedating me at this point and not actually helping the pain. I am now advocating for a more radical change to a completely different medication. That has been my own doctors’ plan for when the time came that my current medication stopped working and I think it is safe to say we are at that point.
“Yes! He did! He will be in to see you shortly and I will bring you that breakthrough,” replies Alice as she turns and walked back out of the room to get my medication. While most medications are kept in my room in a locked box on the wall that also holds a computer for charting purposes, controlled substances like narcotics are kept at the nursing station for safety reasons. While I understand the logic, it means that it takes just that much longer for me to get what little relief they bring and that is making me a bit bitter right now.
“Look who I found!” sings Alice as she comes back into the room a minute later with a small medicine cup with the white pill that I hope will bring me some respite from the pain. Trailing behind her is a tall lanky guy in green hospital issue scrubs. His short dark hair matches the stubble on his face that tips me off he must be a resident who has been on for a while.
“Hi Jennifer, I am Jake. I’m the resident on for your team tonight. I understand you are having some trouble with pain?” he says while attempting a friendly smile and flipping through papers.
“Jenny. My name is Jenny. And yes, I am having ‘trouble’ with pain! The other doctor increased my dose but it is just sedating me. When I complained about that he told me that at least if I was sedated I wouldn’t be in pain,” I spit back. Unimpressed that it has taken them three days to respond to the countless pages.
“Yes, Jenny, sorry! Let me take a look at what you are on…I understand you aren’t taking your breakthrough as often as you are allowed to though,” he replies, still smiling and trying to hold his ground as the good guy in all of this.
“Oh! Wow…” he whispers a second later, his eyes getting large.
“Yup. He raised my dose to 260mg a day. That’s why I don’t take breakthrough as often as I am allowed to! I know that is way too big of an increase this fast!” I say, while he nods in agreement.
“Have you been taking your sleeping pill? Or the Diazepam – the muscle relaxant they can give you at night?” he asks with concern.
“No, because I know if I do it could kill me!” I snap back. I have little patience for this stuff. I know my medications better than these residents do!
“Okay, well, I see you are asking to be changed to a different pain medication,” he says, ignoring the fact that they could have killed me in the past 3 days if I hadn’t caught their mistake. “I think that is a good idea, but as I am sure you know, you are a very complicated case and you have significant tolerance to these medications. I think we should wait until tomorrow. I would feel better bringing in the pain management team to do a consult so we can work out dosing.”
I stare at him blankly trying to convey how unimpressed I am by this monologue about my complexities and the intricacies of pain management.
“If you really want to change right now, I am on all night and I will stay up playing with your dosing if that is what I need to do but it could be a lot more pain for you that could be avoided if we just wait.” Jake explains, clearly trying to bias me toward waiting so he can get some shut eye on his on-call night.
“I want to change now. It took you three days to show up here this time, who knows what it will be if I let you leave without doing anything. Not to mention I am in a lot of pain!” I almost yell back. It is clear I am angry and sore and not interested in debating anything with him.
“Fair enough,” is his only response as he walks out the door to start calculating dosing and research how to best make the switch.
Alice, who has been standing at my bedside the whole time, dumps the small pill into my lap. I focus all of my energy on mobilizing my shaking hand and pinch the small pill between my thumb and pointer finger and place it on my tongue. Alice is immediately ready with my bottle of iced tea and she guides the straw into my mouth so I can swallow the pill and pray it will provide some relief while I wait for the return of Jake and the news of my medication switch.
As Alice walks out of the room the first tear slides down my cheek and I don’t even bother to wipe it away.
Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/