I’ve been on chemo & periodically radiation for 12 years. Rare form of Rheumatoid Arthritis. I’m bald headed & wear a mask in public. Plus I shake pretty good. Husband & I went out to eat. We passed a table with mom & 5/6 year old child. Mom was staring at me the whole time we ordered & ate. The child was looking around and saw me. “Mom, what’s wrong with that lady” “Oh, she’s dying” Needless to say it freaked the child out. Mom had no clue what was wrong with me and totally blew the chance to teach the child about compassion and understanding - human decency wasn’t in her. As we were leaving I smiled @ the child & told her I was ok, not to worry. Hate to think of that child growing up stupid like her mother🎈
She's obviously a bitch. I'm lucky that my Spina Bifida isn't visible (I have Occulta). People come into my job all the time who have disabilities, tubes, oxygen etc. and they stare. We have this one lady who's in a wheelchair and idk whats wrong but she is always making loud noises like she's quaking and she has a nurse-- and my goodness people stared! It makes me mad, that's what it does, that they stare. I have a brother who is mentally ill and everyone stared at him growing up. He would get mad and stand up and shout--that's why my parents didnt take us out a lot so i can relate. I treat them everyone I can with kindness mostly b/c that's who i am but that could have been me. I hate that people do that to people like you and Amy. I know people judge but they tend to be rude, nasty, mean--i work in a grocery store so i know all about it. That lady was so mean to you and it was UNCALLED FOR. I'm lost for words reading your comment that I don't really know what to say. I will keep you in my prayers and i hope you have better days.
When i walk around with my walking stick and i catch someone staring too long i smile really heartly at them and wave sometimes and they look away mortified..
I don’t think people with chronic illness are weak. In fact you are incredibly strong to deal with everything life throws at you rather than let it get you down constantly and stop living your life. I suffer with numerous things but nothing to bad and I know how much of a struggle it is to not just give up. It’s the strongest in you that get up most days (everyone deserves days when it becomes too much) and just get on with your life. A lot of admiration for you. Keep going xx
I don't stare, what if they have anxiety or feel self conscious. I work with those with spinal and brain injuries. I swear some people are rude and obviously were not raised with social manners. I'd only stare at you because your a role model and wonderful person.
I had an NG for ages before I had my surgical PEG tube. People do stare! I don't mind a child looking too much, or a quick glance but it's when people continue to stare that it bothered me. Guess I learnt to just ignore it or I'd end up saying something to them! Loving your new lights they look great! :)
I try not to stare obviously but I am guilty of it sometimes and I always think how brave/strong that person must be to go through something difficult and come out of it fighting. You're awesome.
Your setup looks great!!! I'm sorry to hear you have to deal with ignorance on a daily basis but love your desire to teach people about your illnesses and living with them. So glad I found your channel!!
Yep Adults do the staging and pointing and think it’s eating disorder related and I’ve even had some people see my central line and say to my mom in front of me that they feel sorry for her. It’s hard but I’m alive because of it. Yes I’d rather people ask I’m more then willing to educate.
You are so beautiful! You prove people that think you’re weak wrong everyday. Doing what you do. You’re independent. Also very inspiring . There’s more highs than lows . Love always beats the hate. Xoxo❤️🙏🏼
My brother has a cochlear implant and he’s 5. Even though he doesn’t actually notice the stare from kids and adults it hurts a lot because I can see all these eyes glaring at him anywhere he goes. It’s just really annoying even if I’m not the person with the implant.
I had an a NG for my anorexia for a while and although it’s not a chronic illness, I definitely got my fair share of stares - it made me so mad because I would never act like that! I can only imagine how awful it would be when you have the NJ tube permanently. I feel like a lot of people stereotype tubes as being purely for anorexia, especially if the person looks slightly underweight. I just wish people knew xx
Hi Amy - Just love your videos! Also wanted to say how much I admire your courage. I had a NG tube in for 8 months feeding, as I was losing too much weight (got to 40kgs), until had a surgical G tube fitted; I had acute dysphasia. Watching your TH-cam channel brings back lots of horrible memories; throwing up my NG, awful bloating, messy feeding bag leaks, plus 2x septicaemia….. I still struggle with dysphasia, but had my G tube removed after 10 years on feeding pump. I have Athetoid Cerebra Palsy which is a chronic neurological movement disability, because of a very difficult birth (I look and sound like a drunk)… All my movements are jerky, muscle tone is very tight/tense, plus I have hand tremors. But my mental ability is as good as yours or most others my age.Anyway, just have some tips on people staring me - they may help you too; I wink at most adults when they stare too long, wave to idiots that make fun of me, and often give a high-5 to the little kids (they love to stop and ask 'what's wrong with me') their priceless.. If you ever get the chance to talk to kids at school - please take up the opportunity, as it’s a great way to educate them on your illness plus other tube feeders….. All the very best with your illness Amy - you’re an amazing person....
You are amazing and beautiful! Sorry you have to go through this :( I wish people were more respectable but unfortunately that’s the world we live in! But just know your story is amazing and u are informing people all over the world! You are an inspiration and it’s incredible how you handle everything. I have a pulmonologist apt on Thursday bc of a 4mm and a 8mm nodule in my lungs and I’m falling apart my anxiety and depression is getting the best of me. I hope no matter what happens I can learn to be as strong as you are!
This is so helpful for my masterthesis about the "construction of identity and normalcy when it comes to (invisible) illness and disability" - btw I have EDS myself so this illness will take a big part of my thesis and I hope to raise awareness with it - I will also upload videos to this topic some day ;) Thank you for talking about all these important tasks!
I'm the same as you when trying to go out. I have to talk myself up and say that I can do this. I can work through the pain or staring. And people that notice I walk odd when the pain is so bad or stare when I have to take a motorized shopping cart in the store because I cannot manage to stand and walk through the whole store to do all my shopping. I don't have any outside disfigurement so they just think I'm probably lazy. I can't just walk around with my medical scans and be like I may look normal on the outside but on the inside my body is so messed up. I'm only 30 I have arthritis, heart failure, fibromyalgia, joint problems, asthma, and other things. It brings me to such lows with depression and anxiety. I just keep pushing myself forward. And yep I'll probably never run into those people again. Watching your videos is always inspiring to me. Thank you so much.
i've been watching your channel for a few days now and i've watched a ton of your videos. they're all amazing and you're such a strong person. you inspire me to keep pushing through the bad times and always stay positive. plus you are stunning
I'm so glad you've been feeling better lately 💜 the setup looks wonderful, maybe just raise the camera a little so you're not cut off so much? 😊 It's awful how so many people make assumptions and judge others. Thank you for making this video and good luck with your procedures! 💕
Love the set up, I get lots of stares with my son when my son was younger when he was 3/4 years old all they see him behaving badly but to me his haven’t trouble dealing with ppl around him and the noise as he has Autism they don’t see that cause it’s not something u can tell someone has it and they look at ur like ur a bad mum. Had one ask me if I can control my child being outspoken I told her yes I can and I walked away from her and my son finally calmed down and we continue shopping still had her staring at us the whole time. I remember when I was younger I was at the train station with my nan had this lady stare cause I’m with my nan and I yelled out “take a picture it last longer” lol 😂 she then stopped staring I was 5 years old at the time my nan wasn’t happy after I said it but we had a laugh about it. Easy to let ppl go when they stare at ya then having a go, I have to tell my son father that when his at the shops with him u going to get ppl staring at my son on the way he does things it not normal for anyone else but for him it is so I told him u just have to bite ur tongue till it get too much I would say it’s not nice to stare at people and walk off.
You are so pretty maybe that is why they are looking. I don't even the tube I always notice how pretty your eyes are. People stare at me all the time. I don't even care anymore. You are lovely inside and out!
Hey! I love the new setup!! Keep beeing this amazing creature you are!! Love your channels and keep shining! ❤ (i think that i made some mistakes) Ps. Come to Brazil!! ❤
People stare at me and my sister cause we are identical twin sisters, like you I don't mind when kids stares cause they "don't know better" but adults do, when people walk they look back at us as long as possible, and people yell at us from their cars and stuff. It's a bit annoying but I'm also proud of I am.
I appreciated this video and a lot of what you spoke about really resonated with me. Love the lights btw! Anyway, I have Tourette Syndrome, OCD, and Aspergers, so I understand how it can be difficult being stared at or whispered about or even left out of things because I have vocal tics and they can be loud, but (of course) I can't help it. You had mentioned how it's uncomfortable when you have your feeding tube in with the feed on in a bag and security or whoever asks to search your bag? How do you deal with that if they ask you to disconnect or something?
I have chronic stricture of my esophagus, I currently can only swallow water like consistency. My food is put in a blender, I drink my food-takes me about an hour to drink 30 oz of food its mostly water and fruit. I get bean soup once in awhile but its liquid it takes me 3 hours to get a bowl down. Choke on things like advil and skittles. People make fun of me for not eating solid food even when they know why, it just doesn't matter, friends say I need to add weight & eat more food but doctors say my weight is within the limits. 2500 calories of liquid food a day isn't enough??? I also understand the starring, I have Tourette Syndrome people always stare, what movements I make and the things I blurt out. I grew tired of what other people thought of me a long time ago, still gets to me deep inside some times but this life is about each one of us, Live your life for yourself & those whom you love. An understanding and acceptance of each of us who deal with medical issues daily.
Sometimes people stare or look simply because they are curious, like me. Don't worry, i am disabled too now myself. I am a cancer survivor and the chemos I was on left me with peripheral neuropathy, myopathy, and a bi-lateral foot drop, in which I need to wear AFO leg braces now. It's been 7 years since my cancer battle. I know It could have been a whole lot worse! So that's why I don't really complain too much.
For me, staring is the worst. If they ignore my tubing that's fine. If they ask why I have oxygen/feeding tube/infusions running, that's fine as well. I am open about my illness, I am happy to raise awareness and to explain that I don't have cancer or an eating disorder. When someone just stares, I can't go ahead to explain, and I just feel uncomfortable.
I stare because I'm in love with the human body. I like seeing things that aren't " normal" because I don't know I just like it. Being like everyone else is boring.
I went to the park and mall yesterday hooked up to all my tubes and lines and even though I no longer had a nasal tubes my mother noticed she said about 50 people who stared at me and that she even saw/heard a husband explaining what the tubes I had to his wife. Maybe because I have had a tube and lines for over a year now I have because I honestly didn’t even notice. I just have gotten used to it.
I think most of people, who haven’t been in a situation like this don’t understand. I’m sure like a couple of years ago I’d have stared, and now I feel horrible. I’ve had hodgkins lymphome, therefore a hickman line, a mask and something for my head, because I was bald. I didn’t even realise before, that people (including me) that much. They’d just keep staring at me, even though I stared back at them. For me, it wasn’t a bad feeling, I felt strong, because I was strong enough to go in public. But when they were staring and whispering it was horrible. I mean I’d rather tell them what’s wrong with my health than them whispering.
I'm loving your blue nail polish, and your waterfall lighting is beautiful. Were you able to eat at all when you first got your tube? Have you lost the ability to eat certain foods or drinks since getting your tube? I'm able to still eat certain foods but not enough to keep my weight up and afraid to get a tube in case it will cause me to lose the ability to eat orally. I'm also afraid I won't be able to breathe well when I sleep with a nasal tube. Do you have congestion issues with allergies, etc. that worsen when you try to sleep because of the tube?
Sharon Ray somtimes I get a little congested which can be frustrating but yes there’s still very small amounts of food and drink I’m okay with but majority of the time I’m still sick, but like you said it’s not enough to be able to sustain life so I pretty much depend on my tube 😅
I love your new set set so much. I love your mirrors there so pretty. I have a really weird question ( I don't want to sound rude and I'm really sorry if I do ) but can you breathe through your nose properly with a tube ?
i don’t know if someone has asked you or you made a video on this, and im sorry if this is too personal, but do you use the bathroom normally? does the feed interfere or change the way things come out?
Another great night shift watch ❤ . Love your new room set up it looks great. Hopefully you can get rid of the nose hose soon and get a surgical tube. Wish i could come give you a huge hug. If you have somewhere safe to mail to id love to send you a care package from sydney. xo
Does anyone know of any British youtubers who have IBD and make videos about it - preferably younger (like teenager) because I feel like it would be more helpful - thanks!❤️
I walk on crutches and that REALLY slow and if I have to carry something heavy like a 2 liter bottle (yes that's heavy for me because I'm really weak through my illness even tho Amy said in this video that most spoonies aren't weak xD) I have to set it down if I'm standing in line for paying and it takes me like 20 seconds to get it back up under my arm and people stare because I look even younger than I am and still I am fucked up already xD My reaction is most of the times raising my eyebrow and give them the look like "you got a problem bitch?" and most of the times they then feel embaressed and I think it's funny xD
Why can't you get a PEG or a PEJ? I imagine it would be more comfortable than a tube going up your nose and constantly being careful to not moving it around and being forced to change it after a certain amount of time..
Hey Amy! I live your lights in the back. I’m so glad you made this because I too have EDS and have just started using a wheelchair and I’m really heavy so I think about how I look in the chair and what people think I’m using the chair for. You’re so wise! I’m going to blog about this issue and my chair. I might even make a video as well. Thanks for sharing!!! My blog is genesthatdontfit.blogspot.com. It’s about EDS
Hi Amy. I haven't been on TH-cam in a while. I'm concerned about you. You look a bit thinner. Did you ever get a j tube placed? I have gastroparesis and lost so much weight because I was only on a liquid diet. I became anorexic do to my illness. I had a j tube placed and regained some weight. I've had it for a little over 5 months. It has saved my life. My illness kept getting worse. I changed my diet, took medication and no change. This past January I had my gastric stimulator placed. I am one of the fortunate ones that it is working. I still have my j tube because it is a long process to find the correct current. It's not a cure. My surgeon told me that they hope it will make my quality of life better. I just heard you say how people tend to believe you are sick. When I lost all my weight, it was understood I was sick. As my tube helped me gain weight, most people thought I was cured. I showed them my tube and tell them I'm not cured, I will never be cured. But, I will have a better quality of life, I hope. What does stink about gastroparesis is a person may look healthy and it can be hard for those to understand that I can't eat what you eat and stop trying to push it on me. If you need the j tube, do it. For me, it does bother me. I hate changing the bandage every day and making sure I tape it so it doesn't fall out, but I don't want the alternative with not having a j tube, so I suck it up and am grateful that this device is available. Love ya and I am worried that you seem a bit thinner. ❤️🙏🏻😊 God Bless
I watch this and her Amy’s life but when I click on the vlog channel she posted I got this page does not exist? Did anyone else have that problem? Or is Amy’s life the vlog channel? Thanks so much
I’ve been on chemo & periodically radiation for 12 years. Rare form of Rheumatoid Arthritis.
I’m bald headed & wear a mask in public. Plus I shake pretty good.
Husband & I went out to eat. We passed a table with mom & 5/6 year old child.
Mom was staring at me the whole time we ordered & ate. The child was looking around
and saw me.
“Mom, what’s wrong with that lady”
“Oh, she’s dying”
Needless to say it freaked the child out.
Mom had no clue what was wrong with me and totally blew the chance to teach the
child about compassion and understanding - human decency wasn’t in her.
As we were leaving I smiled @ the child & told her I was ok, not to worry.
Hate to think of that child growing up stupid like her mother🎈
She's obviously a bitch. I'm lucky that my Spina Bifida isn't visible (I have Occulta). People come into my job all the time who have disabilities, tubes, oxygen etc. and they stare. We have this one lady who's in a wheelchair and idk whats wrong but she is always making loud noises like she's quaking and she has a nurse-- and my goodness people stared! It makes me mad, that's what it does, that they stare. I have a brother who is mentally ill and everyone stared at him growing up. He would get mad and stand up and shout--that's why my parents didnt take us out a lot so i can relate. I treat them everyone I can with kindness mostly b/c that's who i am but that could have been me. I hate that people do that to people like you and Amy. I know people judge but they tend to be rude, nasty, mean--i work in a grocery store so i know all about it. That lady was so mean to you and it was UNCALLED FOR. I'm lost for words reading your comment that I don't really know what to say. I will keep you in my prayers and i hope you have better days.
What a rude, uneducated bitch - sending lots of love ♥️♥️♥️
When i walk around with my walking stick and i catch someone staring too long i smile really heartly at them and wave sometimes and they look away mortified..
I don’t think people with chronic illness are weak. In fact you are incredibly strong to deal with everything life throws at you rather than let it get you down constantly and stop living your life. I suffer with numerous things but nothing to bad and I know how much of a struggle it is to not just give up. It’s the strongest in you that get up most days (everyone deserves days when it becomes too much) and just get on with your life. A lot of admiration for you. Keep going xx
I don't stare, what if they have anxiety or feel self conscious. I work with those with spinal and brain injuries. I swear some people are rude and obviously were not raised with social manners. I'd only stare at you because your a role model and wonderful person.
I had an NG for ages before I had my surgical PEG tube. People do stare! I don't mind a child looking too much, or a quick glance but it's when people continue to stare that it bothered me. Guess I learnt to just ignore it or I'd end up saying something to them! Loving your new lights they look great! :)
I try not to stare obviously but I am guilty of it sometimes and I always think how brave/strong that person must be to go through something difficult and come out of it fighting. You're awesome.
Your setup is so cute Amy! I love it!
I think you should keep it the way YOU like it! It’s a reflection of yourself!
Love you Beautiful!
I ❤️ the setup, especially the waterfall lights!!!
Your setup looks great!!! I'm sorry to hear you have to deal with ignorance on a daily basis but love your desire to teach people about your illnesses and living with them. So glad I found your channel!!
Yep Adults do the staging and pointing and think it’s eating disorder related and I’ve even had some people see my central line and say to my mom in front of me that they feel sorry for her. It’s hard but I’m alive because of it. Yes I’d rather people ask I’m more then willing to educate.
You are so beautiful! You prove people that think you’re weak wrong everyday. Doing what you do. You’re independent. Also very inspiring . There’s more highs than lows . Love always beats the hate. Xoxo❤️🙏🏼
My brother has a cochlear implant and he’s 5. Even though he doesn’t actually notice the stare from kids and adults it hurts a lot because I can see all these eyes glaring at him anywhere he goes. It’s just really annoying even if I’m not the person with the implant.
I had an a NG for my anorexia for a while and although it’s not a chronic illness, I definitely got my fair share of stares - it made me so mad because I would never act like that! I can only imagine how awful it would be when you have the NJ tube permanently. I feel like a lot of people stereotype tubes as being purely for anorexia, especially if the person looks slightly underweight. I just wish people knew xx
I know I have been tube for years, people staring on you but you are very strong and perfect person ❤️
Hi Amy - Just love your videos! Also wanted to say how much I admire your courage. I had a NG tube in for 8 months feeding, as I was losing too much weight (got to 40kgs), until had a surgical G tube fitted; I had acute dysphasia. Watching your TH-cam channel brings back lots of horrible memories; throwing up my NG, awful bloating, messy feeding bag leaks, plus 2x septicaemia…..
I still struggle with dysphasia, but had my G tube removed after 10 years on
feeding pump. I have Athetoid Cerebra Palsy which is a chronic neurological movement disability, because of a very difficult birth (I look and sound like a drunk)… All my movements are jerky, muscle tone is very tight/tense, plus I have hand tremors. But my mental ability is as good as yours or most others my age.Anyway, just have some tips on people staring me - they may help you too; I wink at most adults when they stare too long, wave to idiots that make fun of me, and often give a high-5 to the little kids (they love to stop and ask 'what's wrong with me') their priceless.. If you ever get the chance to talk to kids at school - please take up the opportunity, as it’s a great way to educate them on your illness plus other tube feeders….. All the very best with your illness Amy - you’re an amazing person....
I feel like you're stronger with the tube my dear. It gives you nourishment that you need to survive! Love you💕
I have been watching some of your videos and i only have one thing to say, you have all my respect and admiration Amy.
You are amazing and beautiful! Sorry you have to go through this :( I wish people were more respectable but unfortunately that’s the world we live in! But just know your story is amazing and u are informing people all over the world! You are an inspiration and it’s incredible how you handle everything. I have a pulmonologist apt on Thursday bc of a 4mm and a 8mm nodule in my lungs and I’m falling apart my anxiety and depression is getting the best of me. I hope no matter what happens I can learn to be as strong as you are!
NOT GREAT?! WHAAATTT?! Amy, The video was AWESOME! Great job!
This is so helpful for my masterthesis about the "construction of identity and normalcy when it comes to (invisible) illness and disability" - btw I have EDS myself so this illness will take a big part of my thesis and I hope to raise awareness with it - I will also upload videos to this topic some day ;) Thank you for talking about all these important tasks!
Thats why i lover..i admire the way she love herself..really inspiring❤️iloveyou behby❤️
I love you so much. You are such an inspiration. Greetings from Germany!😘
I'm the same as you when trying to go out. I have to talk myself up and say that I can do this. I can work through the pain or staring. And people that notice I walk odd when the pain is so bad or stare when I have to take a motorized shopping cart in the store because I cannot manage to stand and walk through the whole store to do all my shopping. I don't have any outside disfigurement so they just think I'm probably lazy. I can't just walk around with my medical scans and be like I may look normal on the outside but on the inside my body is so messed up. I'm only 30 I have arthritis, heart failure, fibromyalgia, joint problems, asthma, and other things. It brings me to such lows with depression and anxiety. I just keep pushing myself forward. And yep I'll probably never run into those people again. Watching your videos is always inspiring to me. Thank you so much.
I love how comfortable you are talking about yourself and your super pretty 💖
i've been watching your channel for a few days now and i've watched a ton of your videos. they're all amazing and you're such a strong person. you inspire me to keep pushing through the bad times and always stay positive. plus you are stunning
Lauren Davidson thank you so much!! I hope your okay 💖🤞🏼
Love the new setup!
I'm so glad you've been feeling better lately 💜 the setup looks wonderful, maybe just raise the camera a little so you're not cut off so much? 😊 It's awful how so many people make assumptions and judge others. Thank you for making this video and good luck with your procedures! 💕
I love your new setup
Love the set up, I get lots of stares with my son when my son was younger when he was 3/4 years old all they see him behaving badly but to me his haven’t trouble dealing with ppl around him and the noise as he has Autism they don’t see that cause it’s not something u can tell someone has it and they look at ur like ur a bad mum. Had one ask me if I can control my child being outspoken I told her yes I can and I walked away from her and my son finally calmed down and we continue shopping still had her staring at us the whole time. I remember when I was younger I was at the train station with my nan had this lady stare cause I’m with my nan and I yelled out “take a picture it last longer” lol 😂 she then stopped staring I was 5 years old at the time my nan wasn’t happy after I said it but we had a laugh about it. Easy to let ppl go when they stare at ya then having a go, I have to tell my son father that when his at the shops with him u going to get ppl staring at my son on the way he does things it not normal for anyone else but for him it is so I told him u just have to bite ur tongue till it get too much I would say it’s not nice to stare at people and walk off.
Sooo gorgeous! Love your videos, keep it up, cutie
You are so pretty maybe that is why they are looking. I don't even the tube I always notice how pretty your eyes are. People stare at me all the time. I don't even care anymore. You are lovely inside and out!
Hey! I love the new setup!! Keep beeing this amazing creature you are!! Love your channels and keep shining! ❤ (i think that i made some mistakes) Ps. Come to Brazil!! ❤
some ppl do stare with genuine compassion too!
Loved this video! Really relatable x
People stare at me and my sister cause we are identical twin sisters, like you I don't mind when kids stares cause they "don't know better" but adults do, when people walk they look back at us as long as possible, and people yell at us from their cars and stuff. It's a bit annoying but I'm also proud of I am.
Love you Amy, you amazing and beautiful and such an inspiration. 🖤
I appreciated this video and a lot of what you spoke about really resonated with me. Love the lights btw! Anyway, I have Tourette Syndrome, OCD, and Aspergers, so I understand how it can be difficult being stared at or whispered about or even left out of things because I have vocal tics and they can be loud, but (of course) I can't help it. You had mentioned how it's uncomfortable when you have your feeding tube in with the feed on in a bag and security or whoever asks to search your bag? How do you deal with that if they ask you to disconnect or something?
Where did you get the beddings from? Really love them❤️❤️❤️
I have chronic stricture of my esophagus, I currently can only swallow water like consistency. My food is put in a blender, I drink my food-takes me about an hour to drink 30 oz of food its mostly water and fruit. I get bean soup once in awhile but its liquid it takes me 3 hours to get a bowl down. Choke on things like advil and skittles. People make fun of me for not eating solid food even when they know why, it just doesn't matter, friends say I need to add weight & eat more food but doctors say my weight is within the limits. 2500 calories of liquid food a day isn't enough???
I also understand the starring, I have Tourette Syndrome people always stare, what movements I make and the things I blurt out. I grew tired of what other people thought of me a long time ago, still gets to me deep inside some times but this life is about each one of us, Live your life for yourself & those whom you love. An understanding and acceptance of each of us who deal with medical issues daily.
Sometimes people stare or look simply because they are curious, like me. Don't worry, i am disabled too now myself. I am a cancer survivor and the chemos I was on left me with peripheral neuropathy, myopathy, and a bi-lateral foot drop, in which I need to wear AFO leg braces now. It's been 7 years since my cancer battle. I know It could have been a whole lot worse! So that's why I don't really complain too much.
Hi ! I'm a new French subscriber, and I wondered why you're not getting a j tube, not an nj? Nice videos ! :)
For me, staring is the worst. If they ignore my tubing that's fine. If they ask why I have oxygen/feeding tube/infusions running, that's fine as well. I am open about my illness, I am happy to raise awareness and to explain that I don't have cancer or an eating disorder. When someone just stares, I can't go ahead to explain, and I just feel uncomfortable.
I stare because I'm in love with the human body. I like seeing things that aren't " normal" because I don't know I just like it. Being like everyone else is boring.
I like the lights, but you need to place the camera better so that you aren't cut off.
They jus never seen a beautiful person that doesn't worry about her health issues. 😎😎😎🤗
I went to the park and mall yesterday hooked up to all my tubes and lines and even though I no longer had a nasal tubes my mother noticed she said about 50 people who stared at me and that she even saw/heard a husband explaining what the tubes I had to his wife. Maybe because I have had a tube and lines for over a year now I have because I honestly didn’t even notice. I just have gotten used to it.
I hate having to straddle the line between visible and invisible illness (~10:30)
I think most of people, who haven’t been in a situation like this don’t understand. I’m sure like a couple of years ago I’d have stared, and now I feel horrible. I’ve had hodgkins lymphome, therefore a hickman line, a mask and something for my head, because I was bald. I didn’t even realise before, that people (including me) that much. They’d just keep staring at me, even though I stared back at them. For me, it wasn’t a bad feeling, I felt strong, because I was strong enough to go in public. But when they were staring and whispering it was horrible. I mean I’d rather tell them what’s wrong with my health than them whispering.
Idk.. it looks cool for me
my sister has the exact same bed sheets
Praying for you beautiful I love the new setup and your videos in general
You are supeeeer pretty❤ and love from Finland💗
I'm loving your blue nail polish, and your waterfall lighting is beautiful. Were you able to eat at all when you first got your tube? Have you lost the ability to eat certain foods or drinks since getting your tube? I'm able to still eat certain foods but not enough to keep my weight up and afraid to get a tube in case it will cause me to lose the ability to eat orally. I'm also afraid I won't be able to breathe well when I sleep with a nasal tube. Do you have congestion issues with allergies, etc. that worsen when you try to sleep because of the tube?
Sharon Ray somtimes I get a little congested which can be frustrating but yes there’s still very small amounts of food and drink I’m okay with but majority of the time I’m still sick, but like you said it’s not enough to be able to sustain life so I pretty much depend on my tube 😅
Amy, when you press the Vlog channel link it says the channel doesn’t exist. (At least on the app) just thought I’d let you know x
Natascha Heath thank you! It should work now 💕🙏🏼
People stare at my medical alert bracelet. They have come up with some odd ideas as to what it is.
I love your new set set so much. I love your mirrors there so pretty. I have a really weird question ( I don't want to sound rude and I'm really sorry if I do ) but can you breathe through your nose properly with a tube ?
Latia cousins yeah it doesn’t effect the air flow 😊 xx
i don’t know if someone has asked you or you made a video on this, and im sorry if this is too personal, but do you use the bathroom normally? does the feed interfere or change the way things come out?
Another great night shift watch ❤ . Love your new room set up it looks great. Hopefully you can get rid of the nose hose soon and get a surgical tube. Wish i could come give you a huge hug. If you have somewhere safe to mail to id love to send you a care package from sydney. xo
Does anyone know of any British youtubers who have IBD and make videos about it - preferably younger (like teenager) because I feel like it would be more helpful - thanks!❤️
I walk on crutches and that REALLY slow and if I have to carry something heavy like a 2 liter bottle (yes that's heavy for me because I'm really weak through my illness even tho Amy said in this video that most spoonies aren't weak xD) I have to set it down if I'm standing in line for paying and it takes me like 20 seconds to get it back up under my arm and people stare because I look even younger than I am and still I am fucked up already xD
My reaction is most of the times raising my eyebrow and give them the look like "you got a problem bitch?" and most of the times they then feel embaressed and I think it's funny xD
Love the new setup! I think maybe it'd be nice if your entire face was in frame, now the top of your head is cut off!
Foxtective yeah sorry I was having trouble with my camera 😅 promise I will fix it for next weeks video x
Why can't you get a PEG or a PEJ? I imagine it would be more comfortable than a tube going up your nose and constantly being careful to not moving it around and being forced to change it after a certain amount of time..
Hey Amy! I live your lights in the back. I’m so glad you made this because I too have EDS and have just started using a wheelchair and I’m really heavy so I think about how I look in the chair and what people think I’m using the chair for. You’re so wise! I’m going to blog about this issue and my chair. I might even make a video as well. Thanks for sharing!!! My blog is genesthatdontfit.blogspot.com. It’s about EDS
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Hi Amy. I haven't been on TH-cam in a while. I'm concerned about you. You look a bit thinner. Did you ever get a j tube placed? I have gastroparesis and lost so much weight because I was only on a liquid diet. I became anorexic do to my illness. I had a j tube placed and regained some weight. I've had it for a little over 5 months. It has saved my life. My illness kept getting worse. I changed my diet, took medication and no change. This past January I had my gastric stimulator placed. I am one of the fortunate ones that it is working. I still have my j tube because it is a long process to find the correct current. It's not a cure. My surgeon told me that they hope it will make my quality of life better. I just heard you say how people tend to believe you are sick. When I lost all my weight, it was understood I was sick. As my tube helped me gain weight, most people thought I was cured. I showed them my tube and tell them I'm not cured, I will never be cured. But, I will have a better quality of life, I hope. What does stink about gastroparesis is a person may look healthy and it can be hard for those to understand that I can't eat what you eat and stop trying to push it on me. If you need the j tube, do it. For me, it does bother me. I hate changing the bandage every day and making sure I tape it so it doesn't fall out, but I don't want the alternative with not having a j tube, so I suck it up and am grateful that this device is available. Love ya and I am worried that you seem a bit thinner. ❤️🙏🏻😊 God Bless
I watch this and her Amy’s life but when I click on the vlog channel she posted I got this page does not exist? Did anyone else have that problem? Or is Amy’s life the vlog channel? Thanks so much
Amy Rosiewski thanks!
So sorry the link didn’t work :( it should be fixed now ❤️
Do people really stare at you a lot? Stare cause your ng?
How do you know if people aren't looking at you because they find you beautiful?
You should wear 2 tubes and then it becomes fashion.
She did :)