I carry my medical binder which has all my personal info, doctors/surgeons contact info, my surgery reports/notes, any other doctors notes and a list of my medications. Once I get my service dog all his info will be added to the binder as well. I also have a little card that I got from the Ehlers-Danlos website that I put in the back of my clear phone case until I get my new medic alert bracelet. I have a little bag with all my medications, some gum and some chapstick that I just put in the front pouch
I have a medium sized bag that has a medical symbol on the front and has my major conditions listed on the back. I keep my essentials in there and it is really helpful because I just ask people for my medical bag in my backpack and they can immediately find it.
I always carry extra tubie pads, syringe to flush feeding tube, glucose tabs for blood sugar lows, extra steroids in case I need stress dose, doggie poop bags in case of nausea/vomiting, port supplies, prn i.v meds
I had never thought of baby wipes. Thanks for the tip. We carry a small bottle of water to flush my grandsons feeding tube, as he isn't hooked up 24 seven yet.
great tips! My bag has a lot of meds in it (for mast cell reactions, pain, nausea, IBD, etc), glucometer, glucotabs, vogmask, wallet which also has all of my medical info, headphones, water, and snack. It's a lot to carry, but I only leave the house once or twice a week.
Hey Mickey I have Cerebral Palsy and a feeding tube too. I just found your vlogs and I can totally relate! I don't have a medical bag I carry around but at home I use my tube for meals and most importantly my medicine. Can't wait for more vlogs.
I'm a type one so I carry (at this moment medical wise) insulin pens, pen needles, a Frozen snack container that I got in the dollar section at Target for carrying sharps on the go, my blood sugar testing kit and Genteel (to save my fingers), a glucagon, band-aids since I'm allergic to latex I need to have ones without with me, neosporin to protect cuts and burns, low snacks, advil liquid gels, my anxiety medicine, Tramadol cuz I'm having issues with my gallbladder (they think) that is causing me pain all over, Zambrace which is inject-able migraine medicine, my wallet has a "I'm not drunk I'm just low card" and how to treat/emergency contacts, and if I was back on my pump I would also have extra insulin pump sites, alcohol swabs to clean the spot it goes in, and vials of insulin to fill with. I should technically carry alcohol swabs, extra sites for my constant glucose monitor (CGM), and adhesive barrier for if my CGM comes off since I'm very hypounaware and sometimes hyperunaware but most of the time if something goes wrong I just tend to go back to testing with my meter every couple of hours and fix it when I go home.
Great video! I carry almost the same things except stuff for central line as I had my picc line removed due to insurance issues :( .. don't forget to carry extra dose of your daily medications you never know what happens.. If you can try to have water and formula to flush your tube and in case if something happens you'd still have extra formula with you..
I also carry a 5 day supply of my meds along with a recent prescription and a breakdown of what I take and when, just in case I wind up getting an emergency admission
i feel you when you said you have to carry zofran around with you. I have stomach problems too and i am in the midst of getting diagnosed with gastroparesis so i definately get sick a lot too
A suggestion for the spare change of clothes. If you put leggings and like a tank top or lighter not so think shirt and fold them in half, stack on top of each other and roll they might fit. I don't know how full your bag is when all of that is in there but also maybe a spare change in your locker or parents car?
I have an idea regarding the medical alert bracelet. You might explore implementing a QR code on your bracelet or your wallet. This is a scannable code that can link your alert to a website or a Google Drive where you can keep more comprehensive medical records. It can be a private site that's only accessible through the QR code. I don't know, that might be helpful. Especially if you have lengthy medical records that you want to have available for medical staff. I have a quick question too. Can you tell me what that mask was? Was that a vogmask or a fog mask I couldn't quite make it out. Thank you for the inspirational videos.!
I don’t have EDS but I do have a really bad peanut allergy so I carry a medical bag. Inside of it I have 2 epipens(I have two Incase one doesn’t work),then I have hand wipes Incase I touch anything that might have had a bit of peanut on it, and I have a medical info paper so if I had a reaction someone around me could read it and know what to do.
Hey I have a question and I'm not sure if it's a dumb one but I'm genuinely interested! With having a feeding tube, does it fill you up? Like are you hungry all the time or does it make you feel full? Or do you just have no appetite to begin with?
hey I have a feeding tube as well ( same as hers ) and no we are never hungry. The formula we get has everything in it that our body needs so our body never has the signal that we need to eat. Now that don't mean that we don't crave certain foods that we loved before tubie life begain. I just thought I would answer your question cause I seen no one else has yet. have a great day
Hey, I have a feeding tube too I don't get hungry but I do crave taste I used to be such a foodie and go to restaurants all the time to meet up with friends, I guess what I miss the most is the social aspect of eating Every once in a while I'll take a small bit of food from my friends and usually one or two bites will satisfy my taste craves without making me too sick, I still have a little function left and it helps to maintain it I also really enjoy the smell of food and watching other people eat I also know people who have a feeding tube but will eat a kids meal or a single item at a restaurant
I have a feeding tube as well and I only get feedings at night and I’m allowed to eat by mouth but yes it does fill me up. But it goes away really fast.
I used to have a feeding tube through my nose for crohns disease however unlike the other commenters I was still hungry despite being on the feeds through the day and night
medical bag includes; kleenes, finger splints, pain meds, ankle braces, blood clot monitor ( If i cut myself, it will tell me if my blood is clotting or if I need a clotting agent) medical ID, sensory bag (mental health issues) emotional support animal ID, Vog mask, extra mask, rescue inhaler
Where did you get your medical ID bracelet? Could you explain more about your rare form of dwarfism because I have been tested for one form of dwarfism and nothing came up and I didn't know what the other types could be because I am only 4 foot 10 and I also have EDS hypermobility type and want to know more information
I need to get a new medical alert bracelet and being as I have a ton of medical conditions i'm wondering where you found yours at. I've been searching for months to find one that can hold all my info :/
Hi Mickey, what is the brand of medical ID you have? That is the exactly the kind I'd like to get, with the slide-out piece of paper. Also, does it have the little red cross or "medical ID" written on the outside of the band so it's obvious for medics to check?
You honestly never outgrow the usefulness of baby wipes!!! Also on the spare set of clothes...keep a set in the car you ride in the most...I have bladder issues and I alway keep a set in my car.
I have a service dog, so my medical necklace just has my name, ice phone numbers and a reference to my dog for more info. So i keep little cards in my service dogs vest with my dignoses, tools, worst symptoms and a little about my illnesses since almost no emergency personal will know what my diagnoses mean treatment and symptom wise
As a paramedic the service dog and a feeding tube or mainly use mine for medications and if I and if As I can still eat some I do appreciate the idea of having antinausea medications in your bag but working as a paramedic and up in Canada and if you had those items as a civilian like to protect the Zofran you could get arrested because they’re listed as a class III controlled substance
Question: does Zofran make you sleepy? I know a lot of people use it, but I don’t know the side effects . I’ve used Phenergan, and it knocks me right out. So I wonder if Zofran would be better.
Zofran doesn't make most people drowsy, but for some people it does. I've had both phenergan and zofran (ondansetron). The phenergan would make me very drowsy, the zofran doesn't. However, for people who are sensitive to medications it probably would make them drowsy (sensitive as in tylenol makes them sleepy/drowsy).
I don’t have a medical bag but I have more then one thing wrong with my legs and feet and I have something wrong with my back and sometimes I can be in a lot of pain so if I am I have a wheat pack, hot/cold gel pad, body part specific support bandages, straps and painkillers that I take with me if I am going somewhere
I have eds too and I had a feeding tube last year and I had to have an Iv pole and a back pack and I have to have zofran too because I have bad stomach issues
I have a really bad immune system so i catch things really easy so i carry things like gloves masks anti bacteria wipes hand sanitizes everywhere i go i also have lots of different alliges and medical disorders i still go to a normal school but it is hard
hey she has gastroparsis which means the stomach can not diagest food. I have the same condition as her and I have the same feeding tube as hers to. And with the gastroparsis if we do try to eat even a little with in an hour we are paying a high price that lasts all night long which I mean by that is we will be in a 10/10 pain curled up in a ball in the bathroom. some people with gastroparsis can handle little food at a time but still need feeding tubes because we simply cant eat enough to even keep a steady normal weight. it does suck but after awhile you do get used to it, I don't know about her but I still get emotional when I go out with my family and we walk past the food court and I smell fries I'm like what I would give for a fry. lol
you can chew gum even if you cant eat. you just chew gum you don't eat it. just because we cant eat and have gastroparsis don't mean we cant chew gum or have anything in our mouth. It sucks bad enough not being able to eat, we can at least enjoy a nice taste of fruity tastey gum.
You mite want to check out myidsquare.com this it what I have and I really like mine there are no monthly fee like medic alert. Thanks for the tip on the suger meter!!! Baby wipes are a must with all people with disabilities especially those of us in wheelchairs. As for my backpack I carry a change of clothes, diapers, baby wipes, a changing pad, and disposable gloves. Then I have a side pouch on my chair from Advantagebags.com which carries my inhaler, epinephrine injectors, tools, wallet, and car keys. Plus I have a catch all under my wheelchair. PS. love your video
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I carry my medical binder which has all my personal info, doctors/surgeons contact info, my surgery reports/notes, any other doctors notes and a list of my medications. Once I get my service dog all his info will be added to the binder as well. I also have a little card that I got from the Ehlers-Danlos website that I put in the back of my clear phone case until I get my new medic alert bracelet. I have a little bag with all my medications, some gum and some chapstick that I just put in the front pouch
I have a medium sized bag that has a medical symbol on the front and has my major conditions listed on the back. I keep my essentials in there and it is really helpful because I just ask people for my medical bag in my backpack and they can immediately find it.
So you don't loose hair bands, keep them all on a carabiner. It's a great way to make sure they all stay in one place.
Just stop
I always carry extra tubie pads, syringe to flush feeding tube, glucose tabs for blood sugar lows, extra steroids in case I need stress dose, doggie poop bags in case of nausea/vomiting, port supplies, prn i.v meds
I had never thought of baby wipes. Thanks for the tip. We carry a small bottle of water to flush my grandsons feeding tube, as he isn't hooked up 24 seven yet.
“It’s a beautiful day to save lives” ummmm I’m crying girl we need to talk about greys some time. Literally, that show is my life
@Chelsea hons from the movie frozen Its on her wall by the light switch
Appreciate your candor about some of the "awkward" things (leaking feeding tube!) - all in the interest of education and awareness!
great tips! My bag has a lot of meds in it (for mast cell reactions, pain, nausea, IBD, etc), glucometer, glucotabs, vogmask, wallet which also has all of my medical info, headphones, water, and snack. It's a lot to carry, but I only leave the house once or twice a week.
Hey Mickey I have Cerebral Palsy and a feeding tube too. I just found your vlogs and I can totally relate! I don't have a medical bag I carry around but at home I use my tube for meals and most importantly my medicine. Can't wait for more vlogs.
I'm a type one so I carry (at this moment medical wise) insulin pens, pen needles, a Frozen snack container that I got in the dollar section at Target for carrying sharps on the go, my blood sugar testing kit and Genteel (to save my fingers), a glucagon, band-aids since I'm allergic to latex I need to have ones without with me, neosporin to protect cuts and burns, low snacks, advil liquid gels, my anxiety medicine, Tramadol cuz I'm having issues with my gallbladder (they think) that is causing me pain all over, Zambrace which is inject-able migraine medicine, my wallet has a "I'm not drunk I'm just low card" and how to treat/emergency contacts, and if I was back on my pump I would also have extra insulin pump sites, alcohol swabs to clean the spot it goes in, and vials of insulin to fill with.
I should technically carry alcohol swabs, extra sites for my constant glucose monitor (CGM), and adhesive barrier for if my CGM comes off since I'm very hypounaware and sometimes hyperunaware but most of the time if something goes wrong I just tend to go back to testing with my meter every couple of hours and fix it when I go home.
I had gallstones last year so you have my sympathies with your gallbladder problems. They're really awful
I feel for you with your gallbladder issues. I’m 18 and had to have mine out at 17 after years of issues including it causing pancreatitis
I love you backpack! Mines in major need of a revamp so thank you this video inspired me!
Great video! I carry almost the same things except stuff for central line as I had my picc line removed due to insurance issues :( .. don't forget to carry extra dose of your daily medications you never know what happens.. If you can try to have water and formula to flush your tube and in case if something happens you'd still have extra formula with you..
I also carry a 5 day supply of my meds along with a recent prescription and a breakdown of what I take and when, just in case I wind up getting an emergency admission
i feel you when you said you have to carry zofran around with you. I have stomach problems too and i am in the midst of getting diagnosed with gastroparesis so i definately get sick a lot too
A suggestion for the spare change of clothes. If you put leggings and like a tank top or lighter not so think shirt and fold them in half, stack on top of each other and roll they might fit. I don't know how full your bag is when all of that is in there but also maybe a spare change in your locker or parents car?
I have an idea regarding the medical alert bracelet. You might explore implementing a QR code on your bracelet or your wallet. This is a scannable code that can link your alert to a website or a Google Drive where you can keep more comprehensive medical records. It can be a private site that's only accessible through the QR code. I don't know, that might be helpful. Especially if you have lengthy medical records that you want to have available for medical staff.
I have a quick question too. Can you tell me what that mask was? Was that a vogmask or a fog mask I couldn't quite make it out.
Thank you for the inspirational videos.!
Its a vogmask
Ooh really quick just began this video but I have that same blanket behind you!!! :D 🦓💙💙💙
I don’t have EDS but I do have a really bad peanut allergy so I carry a medical bag. Inside of it I have 2 epipens(I have two Incase one doesn’t work),then I have hand wipes Incase I touch anything that might have had a bit of peanut on it, and I have a medical info paper so if I had a reaction someone around me could read it and know what to do.
Your so inspiring because you still love life
Hey I have a question and I'm not sure if it's a dumb one but I'm genuinely interested! With having a feeding tube, does it fill you up? Like are you hungry all the time or does it make you feel full? Or do you just have no appetite to begin with?
hey I have a feeding tube as well ( same as hers ) and no we are never hungry. The formula we get has everything in it that our body needs so our body never has the signal that we need to eat. Now that don't mean that we don't crave certain foods that we loved before tubie life begain. I just thought I would answer your question cause I seen no one else has yet. have a great day
Hey, I have a feeding tube too
I don't get hungry but I do crave taste
I used to be such a foodie and go to restaurants all the time to meet up with friends, I guess what I miss the most is the social aspect of eating
Every once in a while I'll take a small bit of food from my friends and usually one or two bites will satisfy my taste craves without making me too sick, I still have a little function left and it helps to maintain it
I also really enjoy the smell of food and watching other people eat
I also know people who have a feeding tube but will eat a kids meal or a single item at a restaurant
I have a feeding tube as well and I only get feedings at night and I’m allowed to eat by mouth but yes it does fill me up. But it goes away really fast.
I used to have a feeding tube through my nose for crohns disease however unlike the other commenters I was still hungry despite being on the feeds through the day and night
medical bag includes; kleenes, finger splints, pain meds, ankle braces, blood clot monitor ( If i cut myself, it will tell me if my blood is clotting or if I need a clotting agent) medical ID, sensory bag (mental health issues) emotional support animal ID, Vog mask, extra mask, rescue inhaler
i love this!! & your channel!!!!
idk if you have or not, but i would love to see a video about going to school with eds! ps i love your videos!
Hope you keep up doing your vlog vids x hugs from the uk
What medical band do you have?
Where did you get your medical ID bracelet?
Could you explain more about your rare form of dwarfism because I have been tested for one form of dwarfism and nothing came up and I didn't know what the other types could be because I am only 4 foot 10 and I also have EDS hypermobility type and want to know more information
Dawn Keith here is her video on it in case you haven't found it yet ua-cam.com/video/AMjCbHjr2jE/v-deo.html
I have the same Vog mask. One of my 4 now.
You should do a room Tour!! :) love you.
So if you do plan to travel abroad maybe look at getting some over-the-counter meds were some paperwork explaining why you have
Really informative blog! :)
I need to get a new medical alert bracelet and being as I have a ton of medical conditions i'm wondering where you found yours at. I've been searching for months to find one that can hold all my info :/
where do you get your medical id bracelet from? x
USB medical bands are great, too.
You filmed this on the day I had my tonsils out
Great vid as always!
Hi Mickey, what is the brand of medical ID you have? That is the exactly the kind I'd like to get, with the slide-out piece of paper. Also, does it have the little red cross or "medical ID" written on the outside of the band so it's obvious for medics to check?
Can you do a room tour and show us all of your medical supplies??
You honestly never outgrow the usefulness of baby wipes!!! Also on the spare set of clothes...keep a set in the car you ride in the most...I have bladder issues and I alway keep a set in my car.
Can you make a video on what you take to school?(if you go to public school)❤️
shes homeschooled
I have a service dog, so my medical necklace just has my name, ice phone numbers and a reference to my dog for more info. So i keep little cards in my service dogs vest with my dignoses, tools, worst symptoms and a little about my illnesses since almost no emergency personal will know what my diagnoses mean treatment and symptom wise
You are Soooo brave
As a paramedic the service dog and a feeding tube or mainly use mine for medications and if I and if As I can still eat some I do appreciate the idea of having antinausea medications in your bag but working as a paramedic and up in Canada and if you had those items as a civilian like to protect the Zofran you could get arrested because they’re listed as a class III controlled substance
I've been looking for a med ID bracelet like that! What brand is yours or where did you get it? Thanks :)
I'm still wondering this as well, so if anyone knows, please pipe up! It is this exact one I'm after.
You should do a video about a day in the life of you:)
Question: does Zofran make you sleepy? I know a lot of people use it, but I don’t know the side effects . I’ve used Phenergan, and it knocks me right out. So I wonder if Zofran would be better.
Trista Kittle I'm looking at my bottle right now & it says "may cause drowsiness" but it doesn't make me sleepy, personally.
Zofran pills do not make me sleepy but the IV version does for like 30min to an hour after it's pushed
I take the chewable/dissolvable ones btw
Zofran doesn't make most people drowsy, but for some people it does. I've had both phenergan and zofran (ondansetron). The phenergan would make me very drowsy, the zofran doesn't. However, for people who are sensitive to medications it probably would make them drowsy (sensitive as in tylenol makes them sleepy/drowsy).
I take Zofran orally, and it doesn't make me sleepy whatsoever but occasionally it gives me a mild headache
I don’t have a medical bag but I have more then one thing wrong with my legs and feet and I have something wrong with my back and sometimes I can be in a lot of pain so if I am I have a wheat pack, hot/cold gel pad, body part specific support bandages, straps and painkillers that I take with me if I am going somewhere
Hi :) just fund your channel, do you know Chronically Jaquie? Seems like you two have similar medical histories :)
I have eds too and I had a feeding tube last year and I had to have an Iv pole and a back pack and I have to have zofran too because I have bad stomach issues
I was just diagnosed and I’m so afraid of getting one of those feeding tubes I just don’t want it. I am 61 years old. Thankfully I have a great doc.
You're so pretty!!!!!😄😵🏋️♀️🏋️♀️stay strong❤️
I have a really bad immune system so i catch things really easy so i carry things like gloves masks anti bacteria wipes hand sanitizes everywhere i go i also have lots of different alliges and medical disorders i still go to a normal school but it is hard
You are so adorable!
I always have some vomit bags incase the zofran doesn't work fast enough
where did you get your backpack?
Anyone know where i can get a similar phone case/purse as can’t find one :(
Caitliin B Amazon
I have almost the same thing as you but I have always wondered how to not throw up all night long ?
If i get a pick line do i need medical id
🙏🙏🙏🙏
can u have water to drink
Can you tell me what brand of mask you wear when you are afraid you will be around smoke?
WantToBeOrganized it’s called a Vogmask! I just got one and it’s awesome
I truly love you dear
❤️💕❤️💕
I just want to praise you, l love your beautiful attitude ❤️
What happens if you accidentally swallow gum?
Why can’t you eat? Like I’m just curious, I’m not trying to be rude
hey she has gastroparsis which means the stomach can not diagest food. I have the same condition as her and I have the same feeding tube as hers to. And with the gastroparsis if we do try to eat even a little with in an hour we are paying a high price that lasts all night long which I mean by that is we will be in a 10/10 pain curled up in a ball in the bathroom. some people with gastroparsis can handle little food at a time but still need feeding tubes because we simply cant eat enough to even keep a steady normal weight. it does suck but after awhile you do get used to it, I don't know about her but I still get emotional when I go out with my family and we walk past the food court and I smell fries I'm like what I would give for a fry. lol
Your so pretty
Do u get to go to sleepovers
Keep a book with you to read.
U no me getting a feeding tube so ba
Baby Wipes
You have a lot of conditions
Have a change of clothes with you
You shouldn't be chewing gum if your not eating.
you can chew gum even if you cant eat. you just chew gum you don't eat it. just because we cant eat and have gastroparsis don't mean we cant chew gum or have anything in our mouth. It sucks bad enough not being able to eat, we can at least enjoy a nice taste of fruity tastey gum.
You mite want to check out myidsquare.com this it what I have and I really like mine there are no monthly fee like medic alert.
Thanks for the tip on the suger meter!!!
Baby wipes are a must with all people with disabilities especially those of us in wheelchairs.
As for my backpack I carry a change of clothes, diapers, baby wipes, a changing pad, and disposable gloves.
Then I have a side pouch on my chair from Advantagebags.com which carries my inhaler, epinephrine injectors, tools, wallet, and car keys. Plus I have a catch all under my wheelchair.
PS. love your video