I find the way the hospital treats you is disgusting, they should just apologise and fix the issue that they caused smh it's you and Tom that have to deal with their f*** up ugh.
Been worried about you! I only follow on RUclips (i personally don’t have any other socials) and haven’t seen you upload in awhile! Just getting into the video now. You’re very inspiring and you push me to look past my medical stuff and keep living life ❤️ thank you so much for helping me learn to live again
We rarely think about all the delicate balance that constantly goes on inside our bodies. It is really mind-blowing and amazing that things aren't going wrong with us all the time.
It would be awesome if you could make a separate video or in one of your vlogs, talk about your symptoms as a kid, and how your conditions symptoms started out and progressed as you got older because I have a lot of minor but possible symptoms of EDS, gastroparesis, maybe mast cell etc. and it would be so helpful to have a firsthand account of someone when they were young with these conditions and your first symptoms of gastroparesis etc. (:
Yes please do this. I'm about to start the "long journey" of trying to be diagnosed. I have basically every symptom of type 3 eds and my dad has it as well. So no I'm worried because I'm only 14
Good to see an update. The hospital is definitely giving you a little to much attitude, they should take responsibility for the mess up. Nice to hear that you may be getting a little work. Good luck with it and take care of yourself.
I just love Tom ❤ not in a weird way lol I just love how amazing he is with you awwww he just takes care of you and loves you it's just so damn sweet and adorable aww. I feel like you two are made for each other ❤.
That bag looks frighteningly full! We have Baxter’s in France, Olimel sachets but only one liter bags, and never the grey cover bags. Potassium problems since recovering from leukemia, so always having to add this and other minerals to the TPN. Good luck getting your TPN regimen sorted to suit you.
Congrats on almost getting in your own house ive been watching forever and it so great to see you getting strounger and getting your health and life in control
It is funny how different the US and the UK/Australia does home TPN. In the States home TPN is fully custom meaning they don’t use a pre-fabricated base to start the mixing of home TPN. They add in sterile water, dextrose, travasol, and lipids based on what your doctor ordered. I noticed in the UK/Australia they start with pre-mixed bags as the base and add the things that is needed on top of it. Also they never give us bag covers in the states because if you are inside it is safe from sunlight and when you are infusing on the go it is in a backpack so it is protected.
Madison - in Canada we also don’t have a base....it’s all different depending on the person....I have never heard of a pre-made base with “normal amounts”..... sounds so strange to me!!
Peter Alexander is literally the only pyjamas I wear, so freaking comfy. Great taste in style! Also glad you had the TPN issue cleared up so promptly. Sending heaps of good vibes! ❤
I just stumbled on this today. I’m from the US, and when my dad was on TPN, his bags were the same every time, and then they gave us vials that had the vitamins and extra nutrients in them. The bags were just the base levels of calories, protein, fat, whatever. We used a syringe to inject the vitamin mixtures in to the bags, and then sort of shake the bags to mix it in. That way if something changed with his potassium or vitamin B, they could have us put more in three days a week, or one, or whatever.
One of the girls in PE dislocated her finger today and I was the one panicking and everyone was like "why are you so worried you dislocate all the time!?" And it's like I'm not used to other people popping joints out😂 TPN always fascinates me😂😂 it's incredible how they can put nutrients into a BAG!!!!
WA bank holiday coincides with Queens birthday holiday in NZ. Thank you so much for linking Rachel's you tube channel. She is amazing just like you are. Sending my love to you ❤
Good to see a vlog from you! I watched your tube change video on IG and promptly had a nightmare that I needed a tube change in the middle of a hardware store and the employees were the ones doing it as part of a customer service initiative. 😂😂😂 They started pulling this huge bloody tube out of me, and I woke up sitting bolt upright, like WTF was that??!?! And I only have a gtube, but dreams make no sense, LOL. Glad you are doing okay. 💙
I HATE it when my vision goes black with SVT. It's so scary! I always kind of sink to the ground cuz I'm afraid I will fall and hurt myself if I don't.
Omg Amy i can relate to u so much!! I’m suffering from EDS and have a feeding tube too!! I know how it feels to be ill !! Its hard but itz just tipical life❤️🧡💛💚💙💜
Hi Amy I'm a new subcriber and have been binge watching your videos I just want to say you are a lovely strong person I love you and Tom especially the Things That make you go hmmmm segment I have Been praying that you feel better and that your strength continues I know it's hard sometimes but I believe in you girlie you have a great support system love you guys
mmm1347 you can be on TPN for however long you need... but it can cause your liver to fail ect.. it’s said that once you start TPN your unlikely to live past ten more years due to the complications
What are the dressings called? I can only use IV3000 as I’m allergic to other common dressings. I’d like to try one of those, maybe I can contact the company to send me one as a trial.
I’m not feeling to great today either. Went to the movies with a friend today and had to leave mid movie because I got sick (thank you Gastroparesis). What’s the name of the genetic condition that deals with your potassium and glucose?
love u and your channel but you don't seem to have read my previous long and cute comments haha so I´ll just dive right into the question: why do you have issues with your blood sugar? is it because of gastroparesis? take care! hugs xx
Hey, just wondering if I could ask how you went about getting your wheelchair? Or if it's been explained at all before? Was it recommended by one of your medical team members or was it a decision you made on your own and got it that way? Thank you in advance to anyone who has any information. Hope you're doing okay sweet and hope you feel better soon.
I have a question why do you have to keep your your intestines alive if they don't work right bc that's why you have the plug on your belly right and so you can drain your stomach if you want to eat but I just don't get why you have to use your intestines i ? Can they just scoop it all out ? But I'm not asking in a mean way just im generally interested 😁 hope you feel better
Alexis that would be a MAJOR surgery, and there are a few points. Unless there is inflammation or infection, it is not worth the risk, some meds have to be given orally or via the intestines, there are a lot of immune processes happening in and around the intestines apart from digestion.
The thing is her intestines work, her stomach is pretty much paralyzed. The some of the meds she takes gets absorbed through the intestines. Having her intestines taking out would require major surgery- which could lead to infections and complications so not worth it. Her problems just won’t go away if they are removed.
I have anorexia purging type. The purging SEVERLY messes up my blood glucose and potassium. I have so many hypos. My purging is basically the same as you draining. So the more u drain, the more hypos u will have and also your potassium drops more so that's probably the reason you need more potassium in your TPN. I have to take potassium supplements too (called Kay-Cee-L). Xxx sending love wee Hun.
Been worried about you! I only follow on RUclips (i personally don’t have any other socials) and haven’t seen you upload in awhile! Just getting into the video now. You’re very inspiring and you push me to look past my medical stuff and keep living life ❤️ thank you so much for helping me learn to live again
I find the way the hospital treats you is disgusting, they should just apologise and fix the issue that they caused smh it's you and Tom that have to deal with their f*** up ugh.
You have been reported with your two fake accounts.
Been worried about you! I only follow on RUclips (i personally don’t have any other socials) and haven’t seen you upload in awhile! Just getting into the video now. You’re very inspiring and you push me to look past my medical stuff and keep living life ❤️ thank you so much for helping me learn to live again
I’m glad you got the TPN situation squared away! I hope you’re feeling better today
We rarely think about all the delicate balance that constantly goes on inside our bodies. It is really mind-blowing and amazing that things aren't going wrong with us all the time.
It would be awesome if you could make a separate video or in one of your vlogs, talk about your symptoms as a kid, and how your conditions symptoms started out and progressed as you got older because I have a lot of minor but possible symptoms of EDS, gastroparesis, maybe mast cell etc. and it would be so helpful to have a firsthand account of someone when they were young with these conditions and your first symptoms of gastroparesis etc. (:
Yes please do this. I'm about to start the "long journey" of trying to be diagnosed. I have basically every symptom of type 3 eds and my dad has it as well. So no I'm worried because I'm only 14
Good to see an update. The hospital is definitely giving you a little to much attitude, they should take responsibility for the mess up. Nice to hear that you may be getting a little work. Good luck with it and take care of yourself.
I just love Tom ❤ not in a weird way lol I just love how amazing he is with you awwww he just takes care of you and loves you it's just so damn sweet and adorable aww. I feel like you two are made for each other ❤.
Honestly couldn’t do it without him! 😫🥰🥰🥰
@@amyslife4457 - if he has any avaliable uncle's that are exactly like him let me know wink wink lol willing to move from the usa hee hee jk
Thank you so much for showing all of the good and bad days you have! Having EDS myself it really helps to see that it doesn’t just happen to me xx
I feel your frustration, girl! Trying to deal with a hospital or doctor office on a Friday or before a holiday is maddening!
That bag looks frighteningly full! We have Baxter’s in France, Olimel sachets but only one liter bags, and never the grey cover bags. Potassium problems since recovering from leukemia, so always having to add this and other minerals to the TPN. Good luck getting your TPN regimen sorted to suit you.
Congrats on almost getting in your own house ive been watching forever and it so great to see you getting strounger and getting your health and life in control
It is funny how different the US and the UK/Australia does home TPN. In the States home TPN is fully custom meaning they don’t use a pre-fabricated base to start the mixing of home TPN. They add in sterile water, dextrose, travasol, and lipids based on what your doctor ordered. I noticed in the UK/Australia they start with pre-mixed bags as the base and add the things that is needed on top of it. Also they never give us bag covers in the states because if you are inside it is safe from sunlight and when you are infusing on the go it is in a backpack so it is protected.
Madison - in Canada we also don’t have a base....it’s all different depending on the person....I have never heard of a pre-made base with “normal amounts”..... sounds so strange to me!!
Keep being doing your best, and also having fun for it doesnt get so hard for you to deal with health troubles :)
Peter Alexander is literally the only pyjamas I wear, so freaking comfy. Great taste in style! Also glad you had the TPN issue cleared up so promptly. Sending heaps of good vibes! ❤
I just stumbled on this today. I’m from the US, and when my dad was on TPN, his bags were the same every time, and then they gave us vials that had the vitamins and extra nutrients in them. The bags were just the base levels of calories, protein, fat, whatever. We used a syringe to inject the vitamin mixtures in to the bags, and then sort of shake the bags to mix it in. That way if something changed with his potassium or vitamin B, they could have us put more in three days a week, or one, or whatever.
One of the girls in PE dislocated her finger today and I was the one panicking and everyone was like "why are you so worried you dislocate all the time!?" And it's like I'm not used to other people popping joints out😂 TPN always fascinates me😂😂 it's incredible how they can put nutrients into a BAG!!!!
You are so pretty Tom is a good guy !!!! you and him will make will be good parents to a older child you adopt !
WA bank holiday coincides with Queens birthday holiday in NZ. Thank you so much for linking Rachel's you tube channel. She is amazing just like you are. Sending my love to you ❤
Evee Bubbles she is so amazing! I love that girl to bits! 💓💓
Who else watches all the ads on Amy’s video? Support your fave youtubers 👏👏👏
Came across your channel and have gotten hooked. You are such a strong person, and you and Tom are so cute together.
Random question but did your tpn make your dead grass grow ?
She said it failed a while back
It did for a little bit I gave up so not really haha! However it works really well on plants, trees and any sort of hike grown vegies or fruit 😅
I remember that. Right on.
Oh Lucifer is amazing. Im meeting tom Ellis in july. Cant wait. I love it u watch so many show we watch or have watched.. love good tv shows xx
The hospital has no right giving you attitude as they did. I'm glad it is all sorted and hope you feel better soon!!!
I laughed so hard when Tom said “and your balls have dropped”
Congratulations on the new job! I love that new pink top on you. Also, your new makeup looks good.
Amy ❤️❤️❤️ living in your own house? that's so exciting!! happy for you both so much, and hope everything goes well 💕 love you!
I’m so sorry you have had to deal with this for your tpn.
Good to see a vlog from you! I watched your tube change video on IG and promptly had a nightmare that I needed a tube change in the middle of a hardware store and the employees were the ones doing it as part of a customer service initiative. 😂😂😂 They started pulling this huge bloody tube out of me, and I woke up sitting bolt upright, like WTF was that??!?! And I only have a gtube, but dreams make no sense, LOL. Glad you are doing okay. 💙
I HATE it when my vision goes black with SVT. It's so scary! I always kind of sink to the ground cuz I'm afraid I will fall and hurt myself if I don't.
Girl, you are awesome.
Just know that !!
🌈🐞
Omg Amy i can relate to u so much!! I’m suffering from EDS and have a feeding tube too!! I know how it feels to be ill !! Its hard but itz just tipical life❤️🧡💛💚💙💜
Your tpn kinda looks like the bagged milk we have in Canada xD
Good to see blogging again. Miss you when you don’t. 🥰
So glad you have old dressings back 😀
Hi Amy I'm a new subcriber and have been binge watching your videos I just want to say you are a lovely strong person I love you and Tom especially the Things That make you go hmmmm segment I have Been praying that you feel better and that your strength continues I know it's hard sometimes but I believe in you girlie you have a great support system love you guys
I also have EDS I watch you cause I have everything you have so that’s cool
How long can one be on TPN? Months? Years?
mmm1347 you can be on TPN for however long you need... but it can cause your liver to fail ect.. it’s said that once you start TPN your unlikely to live past ten more years due to the complications
What are the dressings called? I can only use IV3000 as I’m allergic to other common dressings. I’d like to try one of those, maybe I can contact the company to send me one as a trial.
I can't understand you because i'm italiane but i love you and i sopporting you
Sorry for the error i've got 12 years
I have the same sweatpants 8:54
What caused your stv? So scary!
I’m not feeling to great today either. Went to the movies with a friend today and had to leave mid movie because I got sick (thank you Gastroparesis).
What’s the name of the genetic condition that deals with your potassium and glucose?
Hkpp it's in the videos description
MysticalAmber oh ok. Ty I must have missed it when I looked.
Amy sorry you feel so rubbish hope you feel better soon
What is your main channel?
love u and your channel but you don't seem to have read my previous long and cute comments haha so I´ll just dive right into the question: why do you have issues with your blood sugar? is it because of gastroparesis? take care! hugs xx
I am going to Disney Wednesday tell us about how your EDS affects your life
Oh yeah the grass
Hey, just wondering if I could ask how you went about getting your wheelchair? Or if it's been explained at all before? Was it recommended by one of your medical team members or was it a decision you made on your own and got it that way?
Thank you in advance to anyone who has any information.
Hope you're doing okay sweet and hope you feel better soon.
Love you and Tom always ❤️❤️
I have a question why do you have to keep your your intestines alive if they don't work right bc that's why you have the plug on your belly right and so you can drain your stomach if you want to eat but I just don't get why you have to use your intestines i ? Can they just scoop it all out ? But I'm not asking in a mean way just im generally interested 😁 hope you feel better
Alexis that would be a MAJOR surgery, and there are a few points. Unless there is inflammation or infection, it is not worth the risk, some meds have to be given orally or via the intestines, there are a lot of immune processes happening in and around the intestines apart from digestion.
The thing is her intestines work, her stomach is pretty much paralyzed. The some of the meds she takes gets absorbed through the intestines. Having her intestines taking out would require major surgery- which could lead to infections and complications so not worth it. Her problems just won’t go away if they are removed.
If you can live and be positive about your disability I can be about mine
11:29 lol.
💜
Both your parents are British and your mums parents, do who is Australian? Your dads parents? Sorry I'm just nosey lol
Yay house hunting is fun 😀
Hey Amy
Not seeing took me about a year to accept fully
Now it’s cool
Couldn't you eat a banana to raise your potassium rather than getting it threw a feed? Great video!
Just curious
My understanding is that the banana would never go through from her stomach but would be drained or vomited up
Love u to
I love Peter Alexander’s Dachshunds
Hi
I am so glad they will sort it Lovely
I love that show Lucifer
😘
I don’t know why people get confused with you being a dule national
What does it matter if you’re from Australia or GB. Do people know that Australia was colonized by 🇬🇧 🇦🇺
Ur beautiful 💖
❤️🙏🙏
Job awesome
Yum Potato
Wow those bags are weird
That’s not good Lovely
I have anorexia purging type. The purging SEVERLY messes up my blood glucose and potassium. I have so many hypos. My purging is basically the same as you draining. So the more u drain, the more hypos u will have and also your potassium drops more so that's probably the reason you need more potassium in your TPN. I have to take potassium supplements too (called Kay-Cee-L). Xxx sending love wee Hun.
Been worried about you! I only follow on RUclips (i personally don’t have any other socials) and haven’t seen you upload in awhile! Just getting into the video now. You’re very inspiring and you push me to look past my medical stuff and keep living life ❤️ thank you so much for helping me learn to live again