Being sick is exhausting enough. Take some pressure off by getting organized and relaying important info to paper.
Keep an “ER Protocol” and list of medications in your wallet.
My cardiologist wrote a letter with an ER Protocol on official Scripps Clinic letterhead, complete with ICD (International Classification of Diseases) codes. It details my diagnoses and what to provide me medically- primarily a simple IV drip. I keep a copy in my wallet stapled to a list of my medications with dosages. Unfortunately a lot of ER doctors and nurses haven’t heard of POTS or MCAS, so having it official makes their jobs a lot easier. They don’t have to assess whether you’re a hypochondriac, or get the opportunity to throw a bogus anxiety or heat exhaustion diagnosis on you. Instead, you should get your treatment faster. There should also be less extraneous testing. In my case, less EKGs, X-Rays, and blood panels.
Get a medical alert card.
Besides the fact that I don’t trust my memory, ERs respect a laminated card. Everything is spelled out for them so they can take their time and get it documented right. Obviously good to have if you’re ever unconscious and need treatment. Even loved ones can have a hard time remembering everything in a panic. Take the pressure off and get it written down. (I don’t put medications on this card, because they change so frequently. Instead I keep a running list stapled to my ER letter.) Your doctor can help you figure out what to include.
Get a zippered pouch for all your back-up and emergency meds.
That way they’ll be easy to grab out of your bag. If you’re like me and have massive brain fog, especially during a flare, throw in a short list of what take (and when) and anything else you need to do. (The ill unicorn makes the paper easier to find and slightly less depressing.) This’ll help a friend get you through an attack too, and you don’t have to remember or explain much.
Use a smartphone timer or app to remind you every day when to take your drugs.
There are quite a few of these apps with great reviews. Check some out. I just started using one called Mango Health, because I have to take cromolyn 4x a day on top of the colorful piles in my pill organizer. I consistently would forget to take a dose of cromolyn timely or entirely. Anything to unburden my brain is a winner.