‘Being tested by a ruthless examiner’

I had to go to the ER last night for the first time in 3 months with the worst pain I’ve had since my hospitalization last year. You can see how red and abraded my forehead is from heating pad burns and John’s tapping technique and my literally hitting it over and over with a hard ice pack. In the ER, they only would give me IV Tylenol for pain. TYLENOL, straight out of a chronic illness meme. The Benadryl and Ativan and steroid and zofran in the IV did nothing without the magic opioid to bring everything together and actually provide the relief I need when I’m at that point.

My favorite doctor got snippy with me when I asked about Nubain (“we don’t stock it, there’s a shortage, it’s only for OB patients”) and finally, like he was delivering a dirty holy grail, he said “I guess I can give you one oral Percocet and then you have to leave. I do not and will not titrate narcotics in the ER.” I nearly laughed and did say something along the lines of “you don’t have to.” I had told them I’d had 2 at home that hadn’t worked and he also had tried to give me phenergan when I’d explained to the PA and the nurse (who were nice) that I had used the max dose at home, as well as that the last time they gave me phenergan with a steroid, I hadn’t slept for two days. I had to intervene quickly to receive Zofran instead, as though all the explaining and self-advocating I’d done 15 minutes before had slipped into the void.

The doctor “insisted” with a ridiculous canned statement about how sick I clearly still was and agreed to another dose of Zofran as well after the Nubain question went nowhere brusquely. Then they told me to contact my ride, disconnected me from the machines and ushered us out with a parting “contact your family doctor to say that something isn’t working with your treatment since you had to come here. Hope you feel better soon!” [Editing to add that all day today I thought of responses to this. “ALL my doctors understand that I have a disabling neurological condition which flares up every few months in a way that necessitates emergency intervention. But thanks.”]

I am very disappointed that my ER “cannot and will not” treat my severe pain anymore. They did not ask what my pain level was a single time, which is a first. I guess they truly did remove pain from vital signs, and pain is why I go there. Fortunately the fluids (and Ativan and the steroid probably) gave me a foundation wherein after eight more hours of agony and vomiting – so much for Zofran – I was able to get it treated myself. So yes, in the long run what they gave me helped, which is why I did go and will still have to go sometimes.

But being treated condescendingly in a total 180 from just four months ago as though the new policy also states “don’t treat with opioids or be kind to chronic pain patients” (it only encourages them, am I right guys?) is so demoralizing and heartbreaking after Wood County Hospital has been such a reliable and necessary part of my migraine care for years.

I am so grateful to have my pain management doctor, who(m?) I’d just seen that morning, and the new clinical trial. I’m tentatively optimistic about the Chicago neurologist and my July appointment as well, but trying to be realistic about that. It is a huge mistake to have all your migraine nest eggs in a basket you liked twenty years ago when it wasn’t even a real basket yet.

And now I drive to Ann Arbor to get my study medication, 5 hours after being totally insensible from pain. But I have to. It’s all I’ve got.

“Let it be said what the headache represents
It’s me defending in suspense
It’s me suspended in a defenseless test
Being tested by a ruthless examiner
That’s represented best by my depressing thoughts
I do not have writer’s block my writer just hates the clock
It will not let me sleep I guess I’ll sleep when I’m dead
And sometimes death seems better than the migraine in my head”

-21 pilots