♡ Checking my Feeding Tube Balloon *on camera* (25.05.19) | Amy's Life ♡
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- čas přidán 5. 09. 2024
- ♡ Checking my Feeding Tube Balloon on camera (25.05.19)♡
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“im cream crackered” amy youre adorable. and i really love how open you are with your life; educating the masses one vlog at a time ❤️
That was so cute. I also loved when she said 'don't worry, it's not wee!!'...
💖💖💖
Hey, for Toms nasal rinse, he should be using filtered/bottled water. You usually just don’t want to use tap water! Just thought I’d mention, as it was what my ENT told me. 💕
Tip with the heat pad don’t stick it to the skin turn it over and stick to you t shirt so it stays in place but won’t hurt you! Love you so much xx
35°F (3°C) is freezing for me where im at. Like, it would probably actually snow at that temperature out here! (I live in Nevada.) Also, do you, ignore those who judge you or question you for wanting a coat! Its your life. Like you said you dont need to explain yourself. Love your vlogs. Love how you keep going through your disease/illness.
Marilyn McCauley I’m in Nevada too! The weather in nw Nevada is bullshit lmao
I don’t think 35 is cold enough for snow, I think the freezing temperature is 32. 35 is cold, but not that cold to snow.
your face every time tom hacked literally made me laugh so much 😂
35 degrees is COLD. I’m from Alaska. I know what cold is.
Victoria Tucker that’s not even freezing!! I’m not disagreeing though, I get cold if it’s under like 50s, but we’ve been negative double digits in Ohio so I can’t imagine 35 being terrible for Alaska 😂
I agree even tho I'm not from Alaska (I'm from Finland). I start wearing coats at like 5°C and I use the same coat at -25°C so the coat isn't a thin one haha
Idk man im from Wisconsin and i walk around with a thin hoodie in 35.. i only wear coats when it snows or is 5 or less tho
How did you and Tom meet ? Love you both❣️
Stop explaining yourself girl. If people don't know there is different measurement systems in the world it is not your fault.
Amelia Rivera I totally agree, to me 35 is cold! Amy you wear what you want, no need to explain the rest of us understand ❤️
I’m up in Qld and it’s 6C and I’m freezing! Just cause the sky is blue and sunny doesn’t mean we aren’t suffering 😂 not least of all because our houses and clothes are summer proof, not winter proof ☺️
SERIOUSLY, SHE'S WAY TOO NICE !
Thanks for the tip about using the giving set caps on the enfit syringes. I’ve only had my tube for a month and I’m still picking up tips and tricks as I go!
I have almost everything you have. I'm being tested for more. You keep me from my depression taking me. I wish we could be friends. You are an inspiration to warriors.
If you ever need some kind of person to vent to etc I'm here @chronicinokla
@@christinabellamoore Love and prayers for you all, so glad you found Amy for support, and I'm here for you all too as much as I can be! xxxxx
@@christinabellamoore You're so welcome! Xxx
I think with the heat packs you're supposed to stick them on the inside of your clothing so it's still touching your skin but not stuck to it.
32°F = 0°C, so 35°F is quite cold...
Hot chocolate all the way for my winter drink... Made with milk, not water along w the powder...
Yess, made with milk! My fiance tries to argue that you're "supposed" to make it with water and I'm like nooo... water makes it taste like chocolatey water and the texture is off 😤
I love how supportive and sweet you are to Tom when he has things going on with his health. It’s awesome seeing the pure love you have for one another. I can’t wait to see the journey life has for you both!!!
I have cEDS and my skin tears really easily.
To get tape to loosen I put a couple of drops of oil (I like almond oil best but it’s expensive so I use cheap baby oil, which is scented so it might mess with your mast cells) and rub it around and over the tape and it just slides off.
If you put a little talcum powder on (or cornflour) before the tape, it comes off much easier but there’s an art to how much to put on because too much and the tape won’t stick at all!
Shh, I don’t want to get him into trouble but when I get blood drawn at the phlebotomist he gets the tape and touches it to my t-shirt a couple of times so it picks up a bit of fluff before it goes on my skin and that helps a ton too (it’s only to hold the cotton wool ball down so it doesn’t need to be sterile!).
I love your vlogs as you make me feel like I’m not alone. Thank you.
If you can get lavender oil, it's really soothing to skin, not sure if you could use that as a replacement for almond oil 😊
I can't stand doing nasal rinses, prayers for Tom, glad he feels a bit better! I'm glad you guys got to go for a drive. I'm so sorry to hear about your skin ripping! :( Totally looks really painful, I'll look it up for you and try to find some tips for you! Those heat packs are a great idea wow! I'm glad you're keeping yourself warm, no need to explain a thing! Hope your asthma starts to recover more soon. I absolutely love your jacket! :) "I am totally cream crackered!" - Amy 2019 lol love that, hope you got the rest you needed and deserved! I love you so much!
Not sure if you realize it but in the vast majority of your vlogs, you're dropping epic hints and hacks for spoonies!!! Love it thankyou so much babe
steph mathieson yay I’m so glad! ❤️😅
@@amyslife4457 now I'm fan girling because you replied to me hehe if you ever jump over the ditch to visit nz, I'd love to meet you!! Would be so awesome to physically meet another gp warrior, swap spoonie stories, rant about "medical professionals" and just generally to be around someone who genuinely gets it. Sending you so much love and spoons beautiful 💚🥄💚🥄💚🥄💚
What a lovely couple you are one another :)
What a beautiful song you put where you and Tom were in the woods Amy! :D
Thanks for sharing the heat packs recommendation. I will look for those as I could really use some. My asthma is worse in the winter too. My favorite winter drink is a chai tea latte. I love how caring and supportive you are of Tom. ❤️
It is amazing how you have learned how to take care of yourself. I enjoy watching your videos you and Tom are a cute couple.
Peppermint or lemon lift hot tea with honey are my favorite winter drinks! Or, traditional mulled cider. That sinus wash is pure hell! I'm supposed to do it twice a week but, after the first time, I stopped because of the migraine it gave me! No WAY am I going to go through a two day migraine twice a week on top of the normal 3-4 that I get every month! It just wasn't worth it for me! Moisturize with coconut oil a few times a day to solve the facial flakiness & dryness. A tiny bit of baby powder or corn starch on the skin will help with the tearing. Just dip one finger and pat into the area you'll have the sticky pad / patch on. It won't stick as hard but it won't rip your skin every time you need to change it. Also, this helps with rashes in awkward places.
Fellow EDSer, completely understand. My skin is very fragile too. Anything with adhesive rips my skin plus I always have a horrible reaction. I use sports wrap with gauze when I can since it sticks to itself and not you. If I use a bandaid it leaves a mark on my skin for months.
Omg Tom is so brave.
Cream crackered.. never heard that saying before. Also had to look up what Ribena was. I am from Canada and the winters here can be brutal. I dont like winter, have to wear to many layers of clothes lol. Love your videos btw.
Hot water with apple cider vinegar and honey. Smells like feet (stank drank) but helps with stomach pains and congestion. Best in winter time but really any time you need a little detox. 🍵
don't worry about popping the balloon, my GI doctor has said before usually those balloons are made to contain a little over what they say to put in them (for example my mic-key claims to need 10mls but it can even hold 15!) as long as you dont put some crazy amount in there you should be totally fine even if its a mil or two over!
There’s no doubt you and Tom are perfect together. It’s so sweet!
I always imagined that Australia was all desserts. Not green forest. Thanks for showing me around
The heat patches aren’t meant to stick on skin, that’s why it hurts taking them off. Meant to stick on clothes only
Love the Dutch door idea in Bullet journal Amy ❤️
When you grow up in the Caribbean and hear all the British products you grew up on. Remnants of our British colonization. Love Ribena!
it's not cold in Australia?? are you crazy?! our nights get down to like 0!!!! we freeze here!! AAAAAND contrary to what people believe in some parts it even snows!
Kasey Shaw you got that right, it doesn’t snow where I am but -10 is not unheard of in winter due to the wind chill factor blowing up from the snow in the south. Our winters maybe a little milder compared to some parts of the world but come and try our 45+ dry summers and then anything below 10 is freezing lol
Leesa Middleton right!! But we do love our weather haha
I know, people who comment well it's always hot in Australia and i'm thinking wait what, hot in summer yeah but winter definitely in the lower part of the country it's freezing!!!!
Just love how you are soooooooo confident you are a inspiration
Plus im in canada/quebec not far from the usa but we say the temperature in celcius. And the summer just start yayyyyy ❤️❤️❤️
35 degrees Fahrenheit is freezing!!!!! So you are totally right and definitely need to where your heavy winter coat!! ❤
I don’t have EDS, but I’d recommend trying the Tatcha rice polish it’s an enzyme exfoliate(so it’s not abrasive) it’s super gentle yet makes your skin so smooth...only downside is it’s expensive but a little goes a long way.
Can’t wait to see the journal with the space theme!
I will do my nasal rinsed for my allergies and nasal congestion each week.
I’m in aus Sydney it’s 9pm and it’s 12 degrees has been really cold at night I’m glad so I can bring out my silk mattress cover that my boyfriend won’t let me put on in summer because he gets too hot 😂😂 I have my silk pillow cases for my pillows though it really does wonders for your hair and skin especially hair as long as you change them regularly because your pillow cases are the main place where all the dirt sweat and oils from your hair and face goes on to so I like to change them every few days to keep my skin clear which has been litterally life changing for my face !! Haha just some bedding tips for everyone ☺️
r i p amy you will be missed by so many of the youtube community
Yes tearing skin is an EDS thing. The only thing that doesn't tear my skin is those flimsy paper band-aids, but anything with regular tape or glue or even if it's just too intense an exfoliator and I'll be loosing a layer or two of skin with it often to the point of some very minor bleeding
Thyme and rosemary teas are my best hot drinks all year long. If I have a cold I had sage in the mix to soothe the throat.
I've only recently discovered that I have EDS, but for months I've had the facial skin issue and now the skin on my body has started to tear more easily. With some things, like KT tape, I take it off in the shower after I've had time for it to soak and loosen its grip a bit.
Pop up to Canada, this winter. Check out -35.
We are metric as well as Australia.
We went on a family vacation this weekend. And i bought one of those heat pads and it helped me today.
Mulled cider or really good hot chocolate in the winter. I live in NY near Great Lakes so we get some serious winter here. Got eight feet of snow in 2 days a few years ago. If ya like snow....move here lol
Maybe have a look at redwins for a moisturiser for wintertime? I’m pretty sure they’re pretty noncomedogenic and I don’t have too bad of a reaction with my sensitive skin.
Hi. i love watching your videos because they inspire me and it makes me want to become a nurse/ midwife even more. XX
I use a neti pot for flushes but it calls for distilled water. Check the box before he flushes again. You don't want brain emobebas from tap water.
Oh my gosh you watch call the midwife too?! I'm obsessed with that show! What did you think of the Christmas special?
I get the tares on thy skin, not because of EDS, but because of my ‘sensitive skin. Certain plasters when left on for 24 hours or more will take off a layer of my skin, and you can feel that it will happen with it being irritating. I don’t get tares on my face due to washing it, but I can’t use scented or any fancy soaps because of the intense irritation and rashes I get. Don’t know if ‘sensitive skin’ will help you prevent it happening to yourself again xxx
I do not have EDS, but my skin rips from adhesive too. Very frustrating and painful.
Having more than one chronic illnesses is extremely exhausting ! I get so weak and tired do easily !
Its good that you check your balloon. I had to have my tube changed after Easter because my ballon had burst. I like to check my balloon at least once a month
Hi the skin coming off has been happening to me for years i cant wear bandaids or any adhesives without it taking skin with it, mine has been much worse though the last year. The only thing i can suggest is moisturiser cream after removing the adhesive.
I can't use those stick on heat packs, my skin is too sensitive to the adhesive. I'm really bad for sensitivity to adhesive tape. I've got a blood test and ECG on may 30 th, doctors are worried about my heart rate being so fast all the time and they think I have something wrong with my thyroid. Hope you and Tom are well. Amy, you inspire me to fight on and to stay strong. Much love and hugs xxx from jules in the UK xxxx
Yes I have that problem pretty bad with my skin. It's one of the worst EDS symptoms that presents itself in me.
lmao...So here I am just listening to your vlog, and out of the blue you said you were “Cream Crackered” I have never heard that saying before!, too funny!!
Mary Reynolds haha 😂😂😂
I live in America and 30° is COLD! and no you shouldn't have to explain yourself. If you are cold you are cold everyone is different and thirty some degrees is def. Cold. But enough about that. Glad to see you got out& had some fun together. As always I pray for you & ur health. Thanks for sharing ur story with us. Love Ya! P.s I do find all the medical stuff interesting like the feeding tube balloon. Thanks for sharing. I have the same issues with my skin peeling off like that.
35°is cold that's close to the temp for freezing here in the US. One thing I did notice while you guys were driving that it is a lot prettier there at 35° than were I am. At 35° here everything just looks so dismal and just like blah. But you shouldn't have to explain yourself about it.
Skin ripping is the worstQ My nails will take chunks out of my skin too. I have scars from ripping off IV tape or bandaids.
Think you might need to search up some deep hydrating lotion, face cream which doesn't reacts with your skin and hopefully it helps.
Same issues here on my hands and face, but everything is sorted that way.
Btw gosh Tom is stubborn 😂 hope that both of you will feel better soon! 💕
These always cheer me up after a rough health day where I’m vomiting for hours
When your taking off sticky things use some oil on a Q tip and rub it on the adhesive to slowly lift it off your skin
Yes! 35 F is cold! It's literally just 3 degrees above freezing. Stay warm!
What is the coldest it gets during the winter there? I live in the US in Pennsylvania. This winter we had some brutally cold days...down to negative 15°F a couple of times. I’m so thankful winter is over and we’re now in the thick of spring
tell Tom to tilt his head forwards more when doing a sinus flush, it will stop it running down his throat :) also I use fess saline nasal spray, 8 sprays in each nostril 10-15 mins before the flush to loosen things up a bit beforehand and then nasonex after a flush and keeps it clear for a lot longer :D
I don’t have EDS but my skin tears so easy. When I use heat pack I am not able to take the tape off. I only can use few tape that doesn’t react to me. I really hope I can find someone like u and Tom.
I’d say my favorite winter drink is hot chocolate, though last winter I also really liked warm apple cider
Meds can make your skin sore, but you prob now that. My skin gets awfull during the winter time. . . Maybe thats a reason. Anyway i love your vlog it inspires me
You certainly have much talent with your editing! Always enjoyable and informative😊
If you have American style syringe’s LEGO heads work as stoppers.
I am from Aus too it has been bloody cold from the past few weeks
Feel better tom 😷 🙏❤️. Amy I have similar skin issues when I'm really dehydrated. I would make sure to bring it up to Drs. It could be possible you aren't getting enough fluid thru tube. Skin is largest organ in the body if it begins changing, always make note at least. But yeah sjogrens really affects skin and when my electrolytes etc are off it really acts up first, then pots, dysautonomia, blood pressure and adrenals.
I live on the northern east coast of America and 35 degrees Fahrenheit is COLD. THat's winter for us. I'd wear a coat too. :) Love you and your channel. Hi to Tom!
Yes!! Hot Ribena! Haven't had that in ages!! Another one that is really nice is the Cascade raspberry cordial hot!
I love tea, oolong is my favorite and iced peach tea in the summer
Thankyou Amy and yuyubottle so excited for the hot water bottle xx
Oh wow.. I've never tried heated up ribena. I'll have to give it a go 😁
Here in the united states my favorite winter drink is a blend of instant tea, tang, and sugar in hot water
35 degrees is definitely cold!
I love you and your videos so much Amy! Your so open and strong and it's really fun and educating to watch your videos! Love from Canada!
My favvy hot drink in winter is oxo cube with a dash of white pepper 😁 xx
Hi Amy, I have the exact same problem with my skin ripping. I have a treatment every other week and the tape to hold my iv in place rips my skin every time and I always have the peeling skin too. When you mentioned that it is like having a sunburn, I could totally relate! I describe it like that all the time.
I was wondering if your surgery scars heal unusually too. I have had many surgeries and my scars are so wide and stretched looking after they heal. New skin over the scar is very thin and transparent looking. Scars also stay very red. I have been told it is because of my EDS.
I had that exact nasal rinse after my septoplasty n it feels TERRIBLE. makes you feel like you’re drowning - it’s about the worst thing ever😹I had to do it every 6 hours! it gets better every time you do it. also every place feels different as in temperature so 2 degrees is bloody freezing. I live in perth not too far from you and let me tell you the nights have been becoming almost unbearably cold. I hope you’re both well x
I am from Perth in Scotland so it's nice to see how the other Perth is ! Those milkshakes looked amazing
My fav, and haven't been able to find this in 11 yrs! I want to 😭😂🤦♀️💀.. anyways, my very good friend she knew about my gut issues and I had lost a bunch of weight and was not keeping things down and my throat was trash (hurt soso badly) so she brought me over some tea and it was called coconut chai! I can find a billion diff flavors (ok so really not that many lol) but I cannot for the life of me find coconut chai! It was tea bags and just made with the hot water, added half tsp of sugar and tbsp of non dairy cream and it was absolutely amazing! Oh how I would love to find my illusive coconut chai once again...
Hey just wondering, how do you hydrate? Do you drink water? And if you do, do you drain that as well?
I've been geting rip skin with my pain patchs and it's never happens it's new to me I took a photo of it not shore I'm useing vitamin cream on it but burning bad sending you hugs
Omg your facial expressions are great 🤣🤣.
Tom has seem moody lately now that explains it him feeling sick 🤢 Amy loved your whole video especially the journal 📔 blog how beautiful it is. Thanks for the tip on reusing the tops for the syringes 💉
It’s autumn in Australia babe
I have hEDS as well. My skin rips. I found water helps
So sorry your skin is ripping off. I don't know how you can do the nasal rinse, I would be so sick. Sinus drainage is one of the only things that I can't stand. I can see blood, guts, broken bones, but I can not deal well with snot🤢. Hope everyone feels better soon.
Rooibos is my favorite tea. It's a red tea best hot with a little milk and sugar.
Not easy to find in california - it's imported from africa.
I got vanilla rooibos from Sprouts. They always have it. I'm in Southern California.
@@XSemperIdem5 vanilla rooibos? Im looking for plain red rooibos. I think teavana has it, but it's not cheap!
Favorite is just rooibos, I think the added vanilla takes away from the flavor I like.
😅😂 I ran a banana bag yesterday.
Yeah, definitely not pee!
Danielle Rom 😂😂
My favourite winter drink is hot chocolate. Can’t go past it hehe.
Thank you for sharing your balloon
mabe u have classical EDS and not Hyoermobile??
There is a song in this at 4:36 minutes and I'd love to know the name of it but I don't even know the words to put here, can anyone help me out and tell me the name of the song plz??
I'm loving the video 😍
It's called Faded by Leomind!! I heard it in one of her earlier videos and looked it up - so good!
Have you been tested for the other types of EDS? I know a lot of people with clEDS struggle with their skin. Hope you can find out why it has started now ❤️ x
Hi, so what sort of tube do you have? I recently got a PEG but they're talking of changing it to a J tube.. what are some of your tricks to navigating it all?