So, today has been… well, one of those days that feels like a scene from a chaotic mystery novel, except the plot twist is just me trying to figure out what on earth my body is doing. Am I dehydrated? Are my blood sugars doing the cha-cha? Is it pain? Something else entirely? I don’t know, and not knowing is honestly the worst part. It leaves me stuck in this limbo where I know something is off, yet it’s not the kind of thing that screams “run to the doctor immediately.” Even if it were, and even if I weren’t stubborn about it, you really can’t blame me for being hesitant after everything I’ve seen, both in my career in healthcare and the years I spent volunteering as a patient advocate. Trust me, we don’t even need to get started on my personal health history; that’s a rabbit hole no one has time for today. Here we are once again a post that should not exist being written because it’s true when it should not be.

So having seen the crap drs put me through and my patient’s it means I see a lot of the negative side of things even more so now. I was already pretty reluctant to go in now it is worse and every time I need to fight for the care, I need it gets worse. I feel like I am wrong about the care I need and should have waited for walk in to open or urgent care, that the issue wasn’t ER worthy. I know I am right to go in however when dismissed it is similar to verbal abuse, it leaves far deeper of a mark that is harder to get rid of if you can.

 The judgement when they see the psychological diagnosis and the stigma that I must be mentally incompetent, or some such thing makes things a fight. I have had cases where I got stupid lucky. My gall bladder is one of those, it started to go, and it took a year before it was attended to and yet once the issues are spotted you have about three months on average before it could burst which is deadly. It is pretty unheard of to be able to hold out as long as I have. Yet that highlights the dismissive nature of my interactions with doctors when it comes to myself. As a patient advocate they do not see those things, they don’t need to know them so I get further, yet the same methods when it is my chart and my care and they can see it, well the fight has to be worth the relief and it takes awhile to get there. Especially as the fight will cause more pain before I get what I need and usually a few rounds of crying because all I want is relief and the method is right there in my chart.

When I go to the ER it is DHE a medication that can only be given via IV. I don’t have a choice as to where I go. It is a medication that has a saying with anyone who has dealt with it on either side though not as often from doctors compared to nurses. “The DHE pukes, let’s get you some extra medication for that quickly” yea it actually exists, I learned it from another nurse. So not only does it need to be worth the battle it needs to be worth the side effects as this is just one of them. It is in my chart everywhere because these are like those neighbors who can’t take the hint of you really don’t want to interact and yet they keep coming back. There is no opiates in most cases, every so often I have let it go long enough to need pain killer at the end due to the fact they usually go with hydromorphone because we know I can have it with my medications as I take it in pill form at home when desperate.

The hydromorphone adds a whole additional layer to the issue of getting what I need. Despite having it at home as an as needed medication the fact that I am native bites me in the ass in the ER, because I must be an addict, right? Just based on my heritage. Yea I am not a fan of bias at all in case I didn’t already give it away. So instead of asking for it outright I have learned to go “The pain is still pretty bad, I know sometimes before we do an extra round or look at different methods there is something I have been given that seems to help but I can never remember the name of” I let them say the name, I let them see it in the charts, I do not dare suggest it or odds are I won’t get it or I will get such a small does that it makes me have the side effects with little to no relief. 

So, yea me and ER with me as a patient not advocate is something I dread more and more each time in most cases cause good experiences when you have chronic issues seems to be another area of bias. The issue with this, and I know it, what if it is something big and because of what I have gone through I do not go and get medical care until to late. Yet no matter how much I argue with myself using logic and facts I can’t get past the ‘what if I am wrong and take up time needed for another’ feeling that comes with the dismissal or outright judgement with medical needs when there are minority factors involved. I have even had it suggested that I stop mentioning my mental health stuff. My at home meds would give it away is not the reason I refuse to do that, it is ethics. I refuse to hide my long alphabet of letters where part of it can’t be seen just because of idiocy. It isn’t in me to hide it and let them find out in my chart doesn’t help. Some things just are no matter how illogical it is.

This isn’t a case of me being non-compliant or refusing to be responsible about my health. It’s more like an experienced, slightly jaded person saying, “Yeah, I’m aware this is happening, but it’s not new, and I know it could be one of many things.” Glucose, blood pressure, blood oxygen, and pulse those fun little metrics we all hope never to think about are actually behaving themselves for once. Which, of course, rules out the usual suspects. Honestly, I’d almost prefer if it were my blood sugar acting up; at least then I’d know how to fix it. Instead, I’m left playing medical detective, piecing together clues from how the weather has been, how little water I’ve managed to drink, and how utterly exhausted I’ve felt all day. My best guess? A migraine is gearing up for one of its rare and dramatic entrances, taking the scenic route just to make things extra frustrating.

And oh, migraines. Let’s talk about them for a moment because they are truly an ordeal. These aren’t just headaches, folks don’t ever let anyone, especially a medical professional, confuse the two. Migraines are in a league of their own; they’re neurological events, often dangerous, and far beyond the realm of your typical tension headache. The thing is that migraine meds need to be taken quickly to work effectively. Timing is everything. And here’s where my stubborn streak gets me into trouble: I’ve missed that critical window more times than I care to admit. Usually, it ends with me landing in the ER, locked in a showdown with at least one doctor or nurse who doesn’t quite grasp the situation or worse, who thinks I don’t grasp it or know what the right words are.

When I have a migraine, I may appear relaxed and happy while inside I am screaming in pain. You see I don’t see the point of being miserable and making others miserable because my body has decided to rebel but not indicate which way it is going to do so. Most nurses love it, I don’t hide the pain per say, I just try to get through it and keeping on smiling is one of my tools, so is reading which most think oh this can’t be a migraine. Come on seriously guys, I see a neurologist for a reason not just for kicks and giggles. In case you can’t tell, my patience is nearly non-existent with migraines despite trying to not go at once to here is how it is. If not pushed I can put things nicely or as questions that aren’t questions. It keeps the peace.

You see, I never used to be like this about medication. Before my car accident, I was that person who practically needed a legal argument to take a single Tylenol unless it was for a migraine. I just didn’t like meds, never trusted them, and always felt like I could tough things out on my own. Then came the accident, and with it, a whole new world of medical realities. These days, I’ll take medication when I need to, but it’s never without reluctance. That reluctance, of course, sometimes costs me dearly. For migraines, especially the kind that send you to the ER, every missed dose adds fuel to the fire. If I let things go too long, I risk falling into a pain loop that feels like something out of Dante’s Inferno. Worse yet, I could end up dealing with a cluster migraine attack or a rebound migraine both of which are about as fun as they sound. So, here’s hoping it isn’t that. Maybe my body’s just demanding more sleep, like it does sometimes. Doubtful, but hey, a person can dream.

And then there’s everything else because migraines are just one piece of this medical puzzle. Fatigue is another constant companion of mine, and it’s the kind of fatigue that doesn’t just make you sleepy; it puts you out of commission entirely. On days like today, I can barely stay awake for more than an hour at a time, only to collapse into sleep for several hours straight. It’s exhausting in the truest sense of the word, and it sets off a chain reaction that inevitably leads to dehydration. I do my best to keep up. I add electrolyte powder to my water to give it a little boost, but even then, there’s only so much I can do when I’m asleep more often than I’m awake. The cycle isn’t just frustrating its downright disheartening.

Writing, though, is something I cling to on days like these. It’s the one thing that keeps me grounded, even when everything else feels like it’s spinning out of control. Writing lets me stay awake just a little longer, lets me focus on something other than pain or exhaustion or that nagging feeling in my stomach that whatever I ate last was probably a bad idea. It’s my escape, my solace, and sometimes, my lifeline. Sure, I vent a lot about doctors, about meds, about the absurdity of it all but writing gives me a chance to turn those frustrations into something productive. It’s my way of saying, “Okay, this sucks, but it’s not going to break me.”

Of course, the irony of all this is that even as I type away, I can feel my energy fading. My water bottle sits nearby, mocking me with its unmagical existence, and I know I should probably take another sip before I inevitably crash again. The thing about days like today is that they’re hard really hard but they’re also reminders of everything I’ve been through and everything I’ve managed to overcome. If nothing else, they remind me to keep fighting, even when I’d much rather curl up and sleep until the world makes sense again. So, here’s to migraines, mysteries, and the occasional miracle of electrolyte powder may they never get the better of me.

Where have you run into bias, discrimination, or those fun things in the medical world or out? It is a very real profoundly fundamental problem in the medical field and hopefully talking about it will start to bring awareness to it and then action to correct this crap. So, I would love to hear your experiences, really good stand out ones are welcome as well. So, let’s open up the conversation and hopefully the rest will occur. Never know what the tipping point could be.