Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Functional Tips for EDS/POTS *Updated May 2019*

Functional Tips for EDS/POTS *Updated May 2019*


First - the free stuff

  • Join a support group - either online or in person (or both!). Facebook has a ton of POTS and EDS specific groups, some of them are even location specific

Things that apply to EDS & POTS

  • Buy a medical bracelet - I do my best to make my invisible chronic conditions visible. Having a medical bracelet helps with this and alerts others about my medical needs (even if I've passed out). Click the images below for the links to the ones that I found useful.

  • Set medication reminders on your phone (brain fog = forgetfulness)

    • There are a lot of great apps that will help with this too, the cost is minimal. I have an iPhone and use Pill Monitor (click the picture below to go to the app store and download) - EDIT - I now use the Reminders app on my phone and have daily reminders set for the 3 times a day I take medication.

  • Pill Organizer - I have two of these BIG and DEEP 7 day organizers. Each day is an individual container and I like to have 2 weeks of meds sorted ahead of time. I quickly realized that all of my medications and supplements weren’t going to fit into the smaller containers. This one is super roomy!

Out and about

  • Small sturdy backpack (daypack - I got mine at Target it's a Swiss gear and cost about $40. I've had it for 6 years) and a sew on medical patch (I found them on Amazon). See my post about what I put in my Medical Backpack

    • Ask your doctor for a note that says the pack is a medical necessity and you need to be allowed to have it on you at all times LAMINATE the note (I keep it in my bag and it allows me to get into festivals/concerts/and venues where backpacks aren't allowed)

    • Peppermint oil capsules - They’ve been a miracle for my nausea

Things to buy EDS

Things to buy for Hydration if your Doctor recommends increased Salt

  • Your choice of Hydration Powder (see my post on Salty Drinks)

    • Single serve containers to put it in (I use plastic 3oz spice jars)

      • So you can take it on the go without lugging around a giant container

  • SALT and lots of it. Personally, I use sea salt (see my post on Salty Snacks)

  • Splurge on a couple of water bottles that you'll love. You're going to be attached to them and you NEEED to be hydrating

Watching Patch Adams

Watching Patch Adams

Medical Backpack *Updated May 2019*

Medical Backpack *Updated May 2019*