Medical Backpack *Updated May 2019*
I was diagnosed at 25 years old (I'm currently 31) 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 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. It’s great for when I’m riding in someone else’s car. I have handicap plates on my car.
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)
Two day supply of meds from my week container <— best and deepest containers I’ve used in this style of medication holder. Each day has it’s own individual container. So I can take 2 days with me and leave the other 5 at home.
Peppermint oil capsules - absolutely amazing for nausea! Weirdest but best side effect - if you burp, it tastes like peppermint
Gatorade powder inside of empty plastic spice jars - easy to refill my water bottle on the go, without having to carry the weight of all the liquid I need for the day. Tried the 1 gallon camelbak, bad idea. It made my back overheat from how tight my backpack would sit on my back from the extra weight.
A water bottle in the side pouch - if I’m out somewhere I know I’ll be able to refill my water bottle (i.e. not a hike or away from civilization) I just take my Blender Bottle. If I’ll be gone for an extended period of time and unsure if I’ll be able to fill up again, I bring my 1.5 liter CamelBak Chute Mag and zip it into the main compartment. I’ll also bring this if I know I won’t have to carry my backpack the entire time I’m out of the house.
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 $60
Knee brace - I love this brace. It's minimal and keeps my kneecap where it should. The only link I could find has it priced at $95. YIKES! I definitely got it cheaper than that. Check out your local Walgreens/CVS.
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
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.)
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.