Why are hospital discharge instructions so unhelpful?

Last month, I temporarily lost my vision from a cheeseburger. My iron was low, so I scheduled a cheeseburger like a healthy person schedules a haircut. Not just any cheeseburger, but a $12 grass-fed patty without any seasoning or toppings except cheddar cheese–the same burger I’ve been eating for years.

Less than an hour later, I lost half of my vision in a staff meeting. At first, it was fun to watch my coworkers disappear, but then the doom kicked in. By the time I got to the emergency room, half of my body was numb.

A few seconds later, I felt like I was making a cameo on Grey’s Anatomy. No less than six residents swarmed me. The supervising doctor said they were going to prep me for tPA, and I nodded even though I wasn’t sure what that meant. I knew I was in trouble when the nurse grabbed my service dog.

One resident warned me, “Okay now, big poke!”

I thought, “I think you mean little poke.”

Then two of them in chorus sang, “Big poke!”

I contemplated how quickly six residents would tackle me if I tried to run. In the end, it was a big poke and I have not eaten a cheeseburger since then. Although the doctors quickly ruled out a stroke, it’s terrifying when my mast cell reactions affect my brain. I worry about having a ministroke, if I don’t treat the inflammation quickly enough. I would much rather have hives and vomiting. I didn’t get any gastrointestinal symptoms, but the next day I had two black eyes. The restaurant staff could not have been more helpful trying to identify the culprit, but I may never know what triggered my reaction.

After steroids, Benadryl, and a few hours of observation, a nurse handed me my discharge papers and wished me luck. On the way home, I curiously thumbed through the packet. It’s always interesting what doctors list as the reason for my visits, since mast cell reactions are not an option.

On the sixth page was a 3-inch clipart image of a glass of wine. Below, it read, “Red wine is a common migraine trigger.”

Folks, I haven’t ingested alcohol, let alone a grape in the past four years. Red wine is a common migraine trigger because has enough histamine to give me lips bigger than Angelina Jolie’s.

I don’t know what was more appalling: the useless advice or the wasted paper. Don’t even get me started on clipart. At least, I am accustomed to the useless advice.

“Okay, the discharge instructions say come back if you develop a fever or hives,” the nurse often says.

“I have hives right now. I have hives every day of my life. I am not putting that gown back on,” I reply.

After my gallbladder surgery, I received advice on how to clean my wounds and keep my poop soft (and no clipart). What I really needed was some encouragement and a 24-hour prednisone hotline for when I wanted to punch people in the face.

I guess that’s what Facebook is for.

10 thoughts on “Why are hospital discharge instructions so unhelpful?

  1. Oh my goodness you are so hilarious and so helpful and so timely and always so spot-on and so helpful! Thank you thank you thank you thank you for sharing your stories and the way you write them! You’re writing my life story for me without me having to use my poor crippled hands to type or word it as perfectly as you do! You are wonderful! And yes I ate a burger with pineapple on it and the condiments and I have been floating out in the universe ever since that! It was sometime back in July I think! In it today is apparently October 15th. LOL the same day you write this blog! 🙂 everything I’m reading is written like right now, about what is happening right now, by all kinds of other people and it could not be more wonderful!

    The bet they put on the discharge instructions when they never even knew I was there or what to do with me while I was there are also quite comical and extremely terrifying! I was told to eat a low-salt low-fat diet hahaha! Oh my. Thank you thank you as you go along sharing your journey so I can figure out my Journey as well 🙂

  2. You eat cheddar cheese??? I’m so envious. Actually, I can think of a couple potential problems: 1) The grass-fed ground beef might not have been as fresh as you need it to be and, 2) aged cheese is high histamine. But you know that, and have probably found that cheddar cheese in moderation is tolerable for you.

    Question, Bells: We know that food coloring is problematic for masto patients, but what about lipstick? The pigment in lipstick certainly gets ingested. I’ve searched the internet but found nothing on the topic of lipstick pigments being potential triggers for mast cells. Do you know?

    I hope the vision loss never happens to you again–that is scarey. Thanks and be well.


    1. I’ve been eating the same cheeseburger for years, and based on my reaction (zero GI symptoms), it’s most likely a chemical reaction. We are not sure if it was on the plate, or table, or in the burger, but it’s the same reaction I have when I take a medication that I’m allergic to.
      Sorry, I’m not sure about the lipstick; I don’t usually wear it. I’m guessing it’s individual.

      1. Thanks for responding. If you must have a disease, it might as well be an interesting one, and masto is definately that. May your day be comfy.

  3. @ Yvonne – I react to lipstick but only if it makes its way down to my stomach. I’ve been using matte lipsticks with a lot of success.

    1. Anna, thanks for suggesting matte lipstick. I have no clue as to what mine are, so will gather them up and look online for their descriptions.

  4. My iron is low too. I use mega food blood builder. Taking antihistamines can block iron from being absorbed. I skip the cheese on my sandwich, some say dairy blocks absorbing of iron too. I have iron patches as well.

  5. Hi, apologies for commenting on an old post. Did you ever resolve this issue or hear a diagnosis— was it orthostatic hypotension or something else? This is how I have been referring to slight vision loss during a reaction, when my blood pressure drops, normally accompanied by pins and needles and faintness among usual symptoms.

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