As we all know, chronic means forevah. In the case of Chiari, that means that no matter how long it’s been since your last hospital-trip-worthy headache, you can always count on the fact that there will come a day that you will need to take another one. For me, this means a middle-of-the night trip to the ER, begging the on-call doc to either humanely put me out of my misery, or to drug me to the point of oblivion.
The other night, I tried to tough it out, and see if I could survive the pain until it decided to quit on its own. After a day and a half, at 2 am, I decided I couldn’t take another minute of it. Clearly, I am an expert at convenient timing. Bryon appreciated this, to no end. He loves me so much, that he actually prefers being kept awake all night by my thrashing about in the bed next to him, followed shortly after by my telling him to get dressed at an ungodly hour to take me to the hospital.
The Emergency room here did something weird. I’m guessing that it’s standard procedure, based on how workaday the attitude of the girl doing it seemed. She made me change into the gown, right in front of her. I’m curious about the logic of this forced indignity. She opened the gown, turned her head to the side, flapped it in front of her, as if to say, “hurry up,” and then waited. It made me imagine a pre-teen in a fitting room with their mom, and the mom saying, “Jeesh! I won’t look. It’s faster this way! Come on!” All I can say about this is that Virginia is weird.
This brings me to something I’ve not thought of sharing before, ER tips! It’s no secret that chronically ill patients can be frequent fliers at the ER, and there are lots of things you can do to make your trip to the ER so much easier. These are just a few things I’ve picked up along the way
Don’t Pee Before You Leave the House
They will ALWAYS ask you to pee in a cup, even if you are on your period. If you can’t pee, you won’t get meds, of any kind, generally. You also won’t get certain tests. If you are there for a pain-related condition, it’s a good idea to make sure you can pee in that damn cup. If you’ve got Chiari, and it’s 2 a.m., and you’re in so much pain that your blood pressure is spiking into danger zones, it’s a damn good bet you need some pain meds. Be able to fill that cup. Be able to fill three cups. Be able to fill a bucket. Drink some water before you go, and be ready. If you’ve got to go before you leave the house, save that precious cargo. If you’re like me, and you have trouble eating and drinking when you are in a lot of pain, it’s not always easy to fill a cup. Don’t be afraid to ask the check-in clerk for a sample cup, if you can’t hold it; they’ll give it to the charge nurse.
p.s. the most frustrating thing in the world is when they make you pee in the cup, bring it back to the room, and then never use the cup. Why? Why make me pee in the cup and then never test the cup? So annoying.
Wear Short Sleeves
Emergency rooms are cold. Then, they hook you up to IV saline, which is even colder. You’ll be cold. But, don’t wear long sleeves. Wear short sleeves and bring a sweater. Or, ask for a blanket. They usually heat them, anyway. If you wear long sleeves, they can’t easily put in an IV. In some ER’s if you are lucky, they won’t even make you put on the gown if you’re wearing clothing that is accessible enough for them. Considering the circumstances, it doesn’t get any better than not having to change your clothes.
If you truly feel like shit, you will be curled up on that bed. And obviously, you feel like shit, or you wouldn’t be there. Sometimes, I end up in a tiny Rachel-shaped ball; sometimes, I’m flat on my back; but, if I had my shoes on, the shoes that just walked all over the gross hospital floor, I’d be dragging germs all over the bed. The last thing you want in bed with you is your shoes; because, that’s gross. And, when they want you to climb into a wheelchair for a CT scan, or when you have to pee for the twelfth time because they’ve hydrated the crap out of you with the IV bag, you don’t want to tie your shoes; wear the easiest-to-put-on shoes you own. There was an unidentifiable brown chunky stain on the floor of the bathroom at the ER I was at this week, so consider that, the next time you want to wear shoes in your hospital bed.
Side Note on CT Scans
If you say yes to, “Is this headache different than usual?” or, “Is this the worst headache you’ve ever had?” you’ve just bought yourself a CT scan. If you’re like me, they all feel like the worst headache you’ve ever had. So, save yourself some time in the CT scan. You aren’t dying, even though you feel like you are. I’ve come to learn that it’s truly amazing how much pain the brain can withstand, without causing death. This last headache caused a facial droop so severe that the whole right side of my face fell, and I couldn’t even open my eye. But, I didn’t die, see? A CT scan will just show that you are alive, and your brain is still there. Don’t waste the time or money, or frankly, the time not laying down. Get one if you think you had a stroke, I guess…but, you probably didn’t. When you’ve had headaches as long as I have, it’s easy to be flippant about them. Don’t worry though, I’m pretty convinced I will die of a stroke or an aneurism, mostly because I won’t realize it’s happening, as I’ll just think it’s another headache.
Meds and Doctors’ Notes
I have a standard medication protocol that my doctor(s) recommend for when I actually need to go to the Emergency room. This saves time and energy because every ER doc wants to try something different. I had an ER doctor once, years ago, who thought he had the brilliant idea that migraines could be treated with high doses of Prevacid (yeah, the heartburn medicine). It’s true that Prevacid can help, in combination with other medications, but not alone. He refused to try anything else. I had to go to two ERs that day.
Me: My head doesn’t burn…
Dr: Shhh…this will work. Let’s just try this
Me: (Great, I can eat a lot of garlic fries later, but) My head still hurts
Dr: Are you sure?
I think of him as the doctor who read the title of a medical article, or maybe the abstract, and was pretty sure he got the gist. His colleagues call him Dr. Gist.
It’s so much easier to say, “my doctor recommends this.” At first, I was hesitant to about the protocol, afraid that an ER doc would feel like I was being bossy; but, instead it turned out that as long as I am polite, I am being an advocate for my own care. So long as I don’t treat the doctor like a short-order cook, it’s all good. And, more often than not, because I present with a complex condition, doctors ask, “What do you normally do?”
This is the first time (I think??) since my last surgery that I’ve even had to go to the emergency room for a headache, and thus this is the first time that I’ve learned that, in the state of Virginia, a lot of emergency rooms are, in an effort to curb the opiate epidemic, no longer stocking Dilaudid. For those of you that don’t know, Dilaudid is an extremely potent pain medication, which is, of course, highly addictive. Obviously, that’s why I was there, because I’ve had a hankering for it since 2016, and I just couldn’t wait a moment longer. <Sarcasm> In reality, it’s very effective for extreme pain, but only for very short-term use.
Since that’s part of my med protocol, this is a minor problem. The substitution of a much higher than standard dose of Morphine has potential to work, but it goes against Virginia ER state standards, and I would generally require a second dose (especially since my protocol usually requires two doses of Dilaudid); again, the second dose of, even Morphine, goes against state Emergency room standards. Standard doses of Morphine usually start at 1-2mg, and they’d have to start me at 8-10mg to get anywhere close to equivalent results of the first dose of Dilaudid. At least this is what the ER doc explained to me.
I once had a “neurologist” in California, years and years ago, who prescribed me Dilaudid in pill form (don’t worry, I didn’t see him for long because he was a quack), and he used to hand me handfuls of it out of his desk drawer! Like out of the little slot where your keep your pencils, loose pills! I did not take that for long. It was too strong for a “typical” headache, made me sick, and I did not like it. Anyway, just goes to show you the range of docs out there, right? He looked, literally, like a troll that lives under a bridge; but he had the most beautiful wife you’ve ever seen. He had pictures of her hanging all over the office, and she worked the front desk. It was like he wanted the entire world to know that she existed, and also for her to never be out of his sight. Every time I went there, he got weirder looking, and she got more beautiful. It was like they were under some sort of fairytale curse.
Anyway, at this ER, I had a lovely doctor who gave me the first extra high dose of Morphine, as part of the protocol, and then explained to me that any ER in the state would have no problem treating me against state standards, based on my complex condition, even those who still offer Dilaudid (this ER didn’t), if I had a medical letter on file from ANY one of my doctors recommending the medication protocol. She agreed that my protocol was awesome, which was why she followed it as closely as she could; but, since the state is cracking down on prescribed opiates in any ER case, they just can’t go against guidelines without evidentiary need. Once I have a letter on file, it’s on file in every ER in the hospital system, and no one will ever question it. So, I know what I have to do next week.
We’ve all known for a while that the public’s perception of opiates in the treatment of pain has been changing, and how that affects the management of care will continue to affect patients. It’s our responsibility, as patients, especially with chronic conditions, to keep up with changes in the system, and to make it as easy as possible on ourselves and the clinicians who treat us. Doctors and nurses want to see us treated properly and with dignity. These doctors wanted to give me care, and gave me the way to do it, and to do it even better next time. On Monday, you’d better believe I’ll have a letter drawn up to put in my medical file.
What has always astounded me the most, not just about the Chiari community, but about any chronic illness community, is a tendency towards viewing the medical community with skepticism, at best, and hostility, at worst. Doctors are not white-coated, idiotic menaces. Both of the doctors that I saw during this shift were compassionate and informed on Chiari. I didn’t have to explain my condition to them, there was no silly mispronunciation, or confused looks. In fact, there was genuine empathy and a desire to help me not only the night I was there, but in future visits.
I’ve heard too many ER horror stories to count, from members of online Chiari groups: people refused pain meds, rude doctors, medical professionals who didn’t know or understand Chiari. But, my doctor(s) felt so badly that my pain couldn’t be completely controlled by what their standards allowed them to prescribe, they were willing to do anything in their power to help. I was given a slew of other medication options; they even offered to admit me overnight, where I could be medicated further, and monitored more appropriately. There was no sense of, “Tough shit. Deal with your pain.” I felt like both of them truly cared that feel better. They were willing to do anything in their toolbox to make sure I was out of pain.
Again, I’m reminded of the general goodness of doctors and their desire to help. But, as patients, we are only allowed to see this side of doctors, if as patients, we are good patients. We cannot go into the hospital, or into the doctor’s office, expecting the doctor to treat us poorly. If I’d gone in expecting to be denied care, I’d have been angry at not “getting” Dilaudid, and I’d be rearing for a fight. I’d be irate, instead of seeing how hard my doctor had worked to help me, instead. I could’ve stomped and screamed about not getting a second dose of pain meds without being admitted. I could’ve yelled and been angry at the new system. Or, I could be grateful that the doctor took the time to explain everything to me with compassion, and treated me with dignity and respect.
I have to bring my positive attitude with me to the ER. I have to bring my good-patient self, and the reminder that the doctor is on my side, something that isn’t always easy to do, because frankly, there are bad doctors out there. However, they are far and few between.