The best part about being In-Patient in Philly was the entire floor was designed specifically for migraine patients. A “No Perfume” sign greeted me right off the elevator. The medical team was empathetic, and there were even daily classes to learn coping skills. The worst part about being In-Patient in Philly was the port placed in my arm for the constant rounds of infusions, but I don’t want to think much about that.
I can feel it coming in the air tonight, oh Lord
This hospital was a teaching hospital. Once I was settled in, all sorts of medical teams crammed into my luxurious private corner room (with my own private bathroom!). They took notes as they asked questions like “Does it ever go away?”
“No.”
“Where is the pain located?”
I pointed to the left front quadrant of my brain and added “The sporadic stab/lightning pains can be anywhere though but last only a few seconds.”
“What is the severity of your pain, most often?”
Well, the hurt doesn't show, but the pain still grows It's no stranger to you and me
The good old subjective pain scale, where no one used the same metrics. Patients reported a pain level of 10 while standing up and chewing gum. Patients reported a 14 and that’s not even an option.
Is level 10 supposed to be the worst pain I personally ever felt? What if you were bubble boy before you arrived for your pain level 10 papercut? The pain scale chart frowny faces are somewhat helpful to indicate what arbitrary number to pick. But it gets dicey when trying to think if today’s migraine is frownier than yesterdays. I’ve tried botox to help the migraines and while it didn’t work, it did smooth out wrinkles which could impact how frowny I looked on the outside in relation to how I felt inside.
Then there was the whole “can I trust my own self?” roller coaster. Was I just a baby who couldn’t take pain? Had I been in pain so long it affected my tolerance? How many others wished to plug into computer readers like a check engine light?
I pulled out a folder, pulled out pages of notes and took a deep breath.
Well, I've been waiting for this moment for all my life! Oh Lord!
“Well, I do the pain scale with 1 being no pain and 10 being someone is sawing my leg off. I have been taking my blood pressure, heart rate, and oxygen through a phone app that videos your finger. I’m sure it’s not as accurate but it is consistent. The higher pain days do align with the higher heart rates. I also have the weather from the last 6 weeks and the days that were the worst had big barometric pressure changes, but any barometric change seems to cause the severity to go up. So, based on my scale and metrics my pain level ranges from 5-9 but most often it’s a 7.”
Two student doctors debated if sawing off your leg was really a 10 because if you passed out you wouldn’t feel pain. The doctor who asked the question wrote just one mark, presumably the number 7. No one took the data in my outstretched hand. Even though I was embarrassed at the moment, I didn’t regret my over-explanation. I felt it was important they knew I’m not some crazy person who picks 14/10.
Unrelated to this interaction, so I was told, a psychiatrist who specialized in patients with intractable migraines came for a visit. He said I shouldn’t be insulted, that being in pain constantly for any extended time has some impact on your mental health. He said the words so careful and gently. I laughed. Old news, Doc.
I've seen your face before, my friend
The second day the strong infusions started. The doctors plan was to start with a very low dose and increase as much as I could tolerate. There could be side effects, they warned. I might have visual hallucinations or feel “woozy” and if anything like that happened and I was scared, all I had to do was press the button and the nurse would lower the dose immediately.
This chat reminded me of the anesthesiologist blob whose solution was to close the curtain should I hallucinate after my ketamine and colonoscopy procedure. I giggled. Actually, this infusion made me more giggly in general.
But I don't know if you know who I am
The doctor came back a few hours later. “How are you feeling?”
“Nauseous” I answered, looking at my puke trash can.
“Nauseated” he said sharply.
“What?”
“If you were “nauseous”, you would be the cause of nausea. But you are experiencing nausea. You are nauseated.”
“Maybe I’m both, then” I joked, making an ugly face potentially worthy of causing nausea.
“You’re not.” He said even more curtly and continued his exam.
Alone in my room again minutes later, I re-ran the interaction. Did this Dr just pump me full of hallucination-inducing medicine and then correct my grammar? This struck me as very funny. Obviously, this was a pet peeve of Dr. Sentence Structure. And the poor guy works in the migraine unit. Where everyone is under the false pretense they are nauseous instead of nauseated. He must be triggered often.
Well, if you told me you were drowning I would not lend a hand
I spent a long time creating back stories. Maybe Dr. Sentence Structure grew up with a very strict English teacher as a mom who washed his mouth out with soap at every grammatical misstep. Maybe he went to a catholic school where nuns smacked his knuckles at each offense. Maybe he is the great great grandchild of Webster. Of Webster’s Dictionary.
It's the first time, the last time we ever met
The infusion was adjusted a little stronger. A few more baby steps and soon I was taking the full strength of the infusion. I didn’t feel as giggly anymore or find much funny. I was agitated and depleted and of course, nauseated.
I didn’t experience the visual hallucinations my doctors had warned me of. I did, however, hear Phil Collins’ “In the Air Tonight” on repeat in my head for hours.
[Drum solo]
[Drum solo]
[Drum solo]
At first, I thought the song must be playing in a nearby office. Migraines gave me super hearing sometimes, but both Hubberton and the Nurses swore it wasn’t playing. I didn’t believe them.
But I know the reason why you keep your silence up No, you don't fool me
The paranoia was unfounded but present.
I didn’t feel like I could trust what anyone was telling me, convinced everyone was trying to keep me out of the loop and placated.
Well, I was there and I saw what you did I saw it with my own two eyes
At this point the only person I could trust was myself. And the fit bit watch on my wrist.
So you can wipe off that grin, I know where you've been It's all been a pack of lies
An accurate concept of time did not exist in that hospital room. I had no idea what time it was or how long had passed. It was like a casino. I needed some concrete facts and proof.
I started the stopwatch feature and laid back on my pillows, listening with purpose this time.
I clearly heard the layered and vocoded lyrics.
Well I remember
It seemed like a long time had passed and I had counted hearing the chorus either 14 or 15 times. It was easy to lose track. I checked the stopwatch. 20 minutes of looping. I was finally convinced. No one would listen to Phil Collins THAT many times. Probably not even Phil Collins.
In the days to follow I had more audio hallucinations, all music and completely random songs with no previous impact on my life. You would have thought given the hours I’ve listened to Spice Girls that would have popped up, or even something remotely close to a song I like, but no, just repeating drum breaks and synth for me.
I remember, don't worry How could I ever forget?
[Drum solo forever]
Would you prefer to listen to my stories? If you're like me and audio is a better form of entertainment for you, listen to my stories on my podcast caseywythacay.
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