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Welcome to my blog.

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

Medical Backpack

I was diagnosed at 25 years old (I'm currently 29) and I do my best to keep up with my friends, carrying my medical backpack with me has been my saving grace. No, I did not pick this up at a medical supply store - the only 'medical bags' I found online were designed for EMTs, paramedics, or military personnel. Since I couldn't find what I was looking for, I created my own. Here's my step-by-step guide (please feel free to adjust to your needs)

  • I bought a daypack (small backpack) by Swiss Gear - roughly $40, find it here on eBay
  • I then purchased a couple Medical Patches from Amazon 
  • I had a friend sew a patch onto my new daypack just above the smallest zipper on the front.
  • Next, I had my specialist write me a Doctor's note that said I needed to have the daypack with me at all times for medical reasons
    • I laminated the note at FedEx Office for about $1 and it stays in my medical pack

What's in my Medical Bag?

  • A basic first aid kit. I was at a health literacy conference and one of the vendors was giving away free first aid kits. It's small, fits perfectly in my backpack, and has everything I need (Ibuprofen, antacid, antiseptic wipes, first aid burn cream, and bandages of several different sizes)
  • Laminated note from my doctor
  • Handicap parking placard (if you have POTS you qualify under the neurological condition - if you have EDS but not POTS/Dysautonomia, talk to your doctor about getting one under the mobility qualifications)
  • My medication zipper case (an old case that I repurposed, any zipper container will do) - inside it you'll find
    • My medications in a week container <-- picked it up for about $2 at my hospital's pharmacy.
      • Since Zofran comes packaged, it's tucked in the side of my zipper case.
    • Ginger chews - for nausea (I like the peanut butter ones, I know it sounds like an odd combination, but they're delicious)
    • Off-brand Sudafed (not the kind you get from the pharmacist, just the one that's out on the shelf). I found out from my doctor that Phenylephrine can help increase blood pressure - which is my main issue with POTS. So just in case I run out of my Adderall (I take 5mg twice a day to increase my BP. I tried Midodrine and Flornef, neither option worked for me).
  • Gatorade powder inside of empty plastic spice jars - I got mine on eBay - roughly $10 for 10 of the 3oz empty plastic spice jars
  • A water bottle in the side pouch - personally, I reuse a Gatorade bottle for a while and then recycle it and purchase a new one. I don't have a dishwasher and I've found trying to clean most water bottles is tricky for me.
  • Medical braces that help me when I'm symptomatic
    • Serola SI belt - this thing is amazing!! It really helps with back pain and doesn't move nearly as much as a typical back brace. Roughly $45
    • Knee brace - I love this brace. It's minimal and keeps my kneecap where it should 

I've taken my medical backpack to: 

  • Concerts (and I sit in the Handicap seating. There's no way I can stand for 2 hours in the heat in a crowd of people)
  • A Las Vegas party
  • Movie theaters
  • Bars
  • And many more places

Don't be afraid to let the event people know that you have a medical condition and that your doctor says you need to have this backpack with you (that's why I keep the note in there). I've never been denied entrance anywhere because of my backpack. If the security team gives you a hard time, tell them they aren't being ADA compliant and that they'll be held liable if you pass out in their facility. I've never had to use that line but it's there if you need it.

"DENIAL OF PARTICIPATION- It shall be discriminatory to subject an individual or class of individuals on the basis of a disability or disabilities of such individual or class, directly, or through contractual, licensing, or other arrangements, to a denial of the opportunity of the individual or class to participate in or benefit from the goods, services, facilities, privileges, advantages, or accommodations of an entity." 

Below are links to the brochure I created for newly diagnosed POTS patients to help visualize what to do next (Medical backpack, connections, etc.)

advice
advice

I created this brochure during my internship at a Dysautonomia clinic. This the the basic information patients wished they had right after their diagnosis. Below the image are links to the PDF of the inside and outside of the brochure.

brochure-inside-v2      brochure-outside-v3

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