this is a random comment, but i'm from australia and the sugar that you have at the beginning of the video is actually grown and made in my home town, bundaberg!!! how crazy is that
@@johnpemble3874 if your talking bout were Amy lives I'm pretty sure she's from Britain but lives in Australia. If your not talking about this please feel free to ignore my comment. I hope you have a great day.
Honestly, sometimes it's only the nurses that don't make you completely loose it. They help keep your morale up. I loved my nurses whenever I was admitted go PSL - best ever.
I love your channel you are so pretty and I love your personality. Do let the haters tell u you are not just because you are skinny does not mean your ugly because fat or skinny is both amazing 😍 keep up the good work love you
I love hospital food so much. I have no idea why, because objectively it's not good. It's just fun to be eating a meal someone else prepares for you while you lie in bed all day. 😂😂
I have that rash also. They called it "sun allergy" when I went to a dermatologist. I get it mostly on my chest so I make sure to slap on as much sun screen spf 50+ as possible, It doesn't stop the rash completely but it's not as bad as when I don't have sunscreen on. I've been told it goes with connective tissue diseases.
Sounds like Mast Cell Activation Syndrome, which is associated with EDS! I do junior doctor training sessions in the UK, they're always using me as the training dummy. Sorry things are going so bad, I hope that you have some good luck soon!
Oh your PO box is near where i grew up and ran muck as a teenager. All the best Amy, your a trooper. You just popped up on my screen today. So yeah im new around here.❤️
I get that heat type rash as well.sometimes it aquous cream reaching a certain temp or clothing too tight.but it's itchy at night.try a fan or breathable clothes🌞
My skin does that to the sun too. It is from my hormones reacting to the sun. It is a heat rash. It may be from your body hormones shutting down from not having a period. Can you do a video explaining what TPN is? I saw your Instagram saying your doing it and am curious what it is. Your amazing! Love you and your videos sending a virtual hug! I am having a super crappy month dealing with my chronic illness too. It is comforting to see that someone else is going through the same thing it helps to not feel so alone. Sry to hear your struggling so much though.
TPN stands for "total parenteral nutrition," it's when you're given nutritional components (like glucose, amino acids, vitamins etc.) directly into your bloodstream instead of through your digestive system. Normally your digestive system absorbs those components from food, or from formula feed like Amy uses, and transports them into your bloodstream so your body's cells can use them. TPN is a way to get the nutrients into the bloodstream when the digestive system isn't working/absorbing at all.
have they tested for thermal urticaria? that’s what i have and it looks like that. idk if it’s common in people with hEDS or Dysautonomia (which i have), but it might be an answer? feel better soon lovely!!!!!!!!!
I get the same rash when I am in the sun. They said it was chonic hives back in Jan by allergist. I see another doc for demolgist on 29th. To see if that's what it is or not. Take care and always praying for you!
I think you look so beautiful even in the hospital I wish much love; happiness; health and more life to come. Much love from San Juan Puerto Rico yeah all the way to the Caribbean.
My skin breaks out like that mines is coz of PLE, am basically allergic to the sun it's not been so bad since ive had my treatment (controlled sunbeds) but it does still happen, it's really sore and itchy especially on my face, I hope you get the same treatment as me coz it does work xxx
Did they figure out where all the potassium went? Did your kidneys filter too much out or is it your HKPP? PS-Loved The Good Place! So sad when I ran out of episodes.
I wonder if broad spectrum digestion enzymes are tried? Might help you to gain some weight and often also helpful if there is gastro intestinal symptoms. I'm just suggesting. Don't know your situation otherwise. Nutrition therapist from Finland
idk how on earth you can just bEnD yOuR aRm with that IV constantly in it, honestly any time i'm in the hospital with an IV I do not bend my arm. in the bed it's always straight, when i get up i try my best not to move it, and even when i used the fucking bathroom, i did. not. move. that. arm. I'm honestly impressed. Stay strong!
I’m getting ready for scare tissue developing on my intestines! I hope you feel better! Update ( nothing) so now a colonoscopy to see if I have a fissure. If not that I’ve got Gastroparesis
If its gastro, meds like domperidone can help wonders. I have a paralyzed gut after having half my large and a third small intestine removed. Hope you feel better soon!! If it comes down to it, I know it sounds horrid but a colostomy isnt that bad. I had one at 21 for a bit.
Hey Amy! You're amazing! Such courage and such a beautiful smile. Thank you for your vlogs. I have EDS too, plus CRPS, with fibromylagia symptoms, chronic pain, extreme fatgue, peripheral neuropathy, braxial plexus damage, a full array of migraines and migrainous headaches and central sensitization with functional neuro disorder, real issues with my gut system etc.; severe dietary restrictions due to histamine, FODMAP (so no sugars i.e. Avoid all high carbs and most fruits etc etc., or take everything in very small amounts), combined with gluten and lactose intolerance with multiple chemical sensitivity intolerances (household, certain synthetic fabrics, latex, dust, pollens etc etc) make following the appropriate diet & lifestyle expensive and restrictive. And i currently live well below the breadline with a monthly total income of £160. Ive tons of digestive system crap but fortunately nothing like what you live with. And my heart goes out to you! The pain is extreme. The abnormal bloating, bleeding, gastroparesis, swallowing issues, etc etc are no fun to live with. I get terrible pelvic pain just peeing, so i cannot imagine how you cope with the sh@& you've been dealt. So again ... You are amazing! To your continued weight loss ... No not a good sign as you point out in the beginning of your vid. I get the same skin response to yours (plus several others which can co-occurr or follow a set sequence) from a short time in the sun. It is a type of pseudo-allergic response to the sun, or so i understand. Doctors are currently arguing about the cause/diagnosis if my skin issues .... And its a similar skin pattern too that one can get in CRPS/ Causalgia. Which is often referred to as central sensitization syndromes/disorder, or FND now days. In short, this neurological issue is often overlooked in favour of dermatological ideas. Forgive me for my paucity of knowledge in the details of your med history. All i can say tor you is your doctors need to avoid puncturing or intruding into the body as much as is possible, because it sets off full body flares. And if its germane to your situation be sure they use tons of ketamine under anaesthetic, and that you tank up on massive amounts of vit C (6000mg for 2 days before an intrusive intervention). The thing with an over reactive nervous-immune system (often found in EDS patients), is that inflammation must be controlled and can be controlled/managed with lifestyle and diet choices. I never really paid much attention to this issue until stress triggered even worse symptoms ..... which signifiers doctors at the time ignored as they couldn't work out what my symptoms were a sign of. I don't know anything about your dietary restrictions despite your need for feeding, but it struck me as strange that you were eating every food that is inflammatory, or FODMAP sugar, or high in histamine. A study at the University of Maryland med school found a 47% improvement in all signifiers patients were monitored for when a full spectrum green stuff nutritional supplement was added to CRPS/ patients with multiple diagnoses. Thats an amazng result! Your dermatological sun trigger is strange because that sun sensitivity is a MAST cell activation sign ... And yes its very worrying you keep dropping your weight. Have they thought of putting you into ketosis with high fats, moderate protein and low carbs? It is making a world of difference to me. I know keto and paleo are sexy ideas at the moment that my traditionally trained Dietician abhors because carbohydrate intake is dropped to between 20 grams & 50 grams a day, but there is a reason or two given the science results from various nutrition studies. The idea is that when we move to burning fats (fats are like delivery trucks carrying lipids and other vital chemicals to the cells around the entire body), rather than trying to energise ourselves via glucose; the findings in Intermittent Fasting research are incredible regarding kick-starting the bodys self healing mechanisms. And where needed there has been required weight GAIN, though most folk drop the carbs in order to lose weight properly by changing how we metabolise to "CREATE" energy, (forgive my contrary thermdynamics!), not just understand food as something we burn up.. Restorative Medicine is in its infancy, and perhaps your med team could look into it? (See Dr.Schwartz youtube talks on CRPS and its treatment. It will interest you. I know how it feels battling the ignorance and hubris of Silo-trained specialists. And i know how intimidated these doctors can feel. Generally they're open to being told about research articles, though, and i hope your guys are fully supportive!! I have POTS -Postural Orthostatic Tachycardia Syndrome- like signs and symptoms too, with the blackouts and drop downs i get, together with long collapses after exertion - kind of exercise intolerance -, yet my test results are not typical and they yet do not know WHY, although one doctor is absolutely convinced im medically ill and not that my brain and body interaction is broken! This is a fight still underway, and which requires full explication! An amazing autonomics neurologist at the National Neurological H in Lndn, U.K. went so far as to write in his reports, that "if the results of tests don't follow the symptoms apparent, then you're not interpreting the results correctly, or you're dong the wrong tests". And to always remember that trauma is only one strand in a person's history, and they must not be reduced to these events, even if there are inappropriate or emotional triggers creating physiological cascades. The body-brain often just needs reminding that despite genetics and auto-immune disorders, it does know how to heal itself for the most part. I was wondering if they've ever given you a thermal imaging scan to monitor your sympathetic nervous system, and your body temperature patterns through your body thermo-image following blood flow? Ive chatted enougg. Im now going to watch the remainder of this 01.11.2018 vid. Long time ago, but lets see what happens. Be loved and be free, xxmeg
I was going to say it actually depends here in the US as well. My friend can only use KateFarms and the hospital does not stock it. Some people can tolerate different feeds but most hospitals carry “common/standard” brands.
It’s because my hospital doesn’t stock the feed I’m on, it has to be specially ordered and it also has to be blended and they don’t have a blender on my ward 😅😂
ughhhh vivanex, watching this thanx to YT picking up on my chrohns and cramping especially bad lately. skipping that neurogohst nightmare, curious if while on NPO if you’ve ever smuggled in a meal just to chew and spit out while watching food channel......its glorious btw😉
Do you have any meds like nortriptyline or amatriptyline, Gabapentin, ect....bc those kinds of meds can make you allergic to the sun. Amatriptyline did it to me. I took it for about 9 months when I was a teen and even after i stopped taking it, it made me have the reaction for about 5 yrs after.
@@amyslife4457 is the Duloxatine new? Because it can be a rare side effect of it as well. I have found it is a bizarre side effect of most nerve agents, unfortunately.
Is it a private hospital ? The conditions look awesome, where I stayed it was such a shithole with 6 people in the room, awful bathroom and the food was vomit inducing
Thanks for the backstory so new comers know what your condition is.....oh wait. Anyway I gotta go to Castle Greyskull, can you point out the way Skeletor?
Maybe a diet change like something without grains or sugar and beans would be better?? Have you considered that ? Not trying to be rude or anything but a lot of people changed diets to paleo or keto and felt soo much better...
SAMii94xo ok I've seen lots of people healed, so I will pray again and tell me how you feel after I post this. Be healed in Jesus name, all pain go now and spirit of depression go now,
Can’t believe that you’re gone for ever 😭
Gone?
@@annefricker8474 she sadly passed away beginning of April :(
this is a random comment, but i'm from australia and the sugar that you have at the beginning of the video is actually grown and made in my home town, bundaberg!!! how crazy is that
she lives i Australia
I'm from Australia too and thought the same.
@@aurorapercival5142 nope Britain
@@johnpemble3874 if your talking bout were Amy lives I'm pretty sure she's from Britain but lives in Australia. If your not talking about this please feel free to ignore my comment. I hope you have a great day.
@@steviebumbletea no go away
When admitted to hospital why are meal times the most exciting part of the day? Does anybody else feel this way? Or is it just me.
I was just in the hospital , I don't know why they are exciting lol
YES
I think it's because it's so boring, you can only watch so much TV. Especially if you have to be there for treatment, but otherwise feel ok.
I was there for anorexia so they were the worst part of the day lol
That and the pain pump timer
Tom making your feed in that suit just reminds me of James Bond haha "shaken not stirred"
Honestly, sometimes it's only the nurses that don't make you completely loose it. They help keep your morale up. I loved my nurses whenever I was admitted go PSL - best ever.
Hope you feel better, Amy, keep us updated whenever you can.
We miss you Amy 🥺
I love your channel you are so pretty and I love your personality. Do let the haters tell u you are not just because you are skinny does not mean your ugly because fat or skinny is both amazing 😍 keep up the good work love you
“Holy Forking Shirt” is my new favorite phrase. I love that show!
Kris G ahaha forking yes! That shirt is the best! 😏😏See what I did there 😂😂😂
😂😂😂 yesssss!!!!!
Inspirational and amazing!!! Tom is a gem you have a great guy there!!
I LOVE YOU! YOU ARE STRONG ❤️❤️
Tom is a riot. Bet he really makes your day.
TOM IS A RIOT BET HE REALLY MAKES YOU DAY
Am I the only one who low key likes hospital food?
stacie darkey nooooooo
I like hospital food too X)
I love hospital food so much. I have no idea why, because objectively it's not good. It's just fun to be eating a meal someone else prepares for you while you lie in bed all day. 😂😂
@@ashleyspratlin1811 😀😀😀
You are such an amazing positive person! I love your attitude! ❤️ praying they get your feeds right so you can go back to college
I have that rash also. They called it "sun allergy" when I went to a dermatologist. I get it mostly on my chest so I make sure to slap on as much sun screen spf 50+ as possible, It doesn't stop the rash completely but it's not as bad as when I don't have sunscreen on. I've been told it goes with connective tissue diseases.
I don't have any serious health issues and I have that. It's a pain especially when you are from a warm and sunny place.
Oh my gosh! I get this too! Does it get itchy after a bit??
I get that same rash in the sun at times and in the cold
Allison mine dose then burns like I’m on fire haha dose same with cold too
Sounds like Mast Cell Activation Syndrome, which is associated with EDS! I do junior doctor training sessions in the UK, they're always using me as the training dummy. Sorry things are going so bad, I hope that you have some good luck soon!
Oh your PO box is near where i grew up and ran muck as a teenager. All the best Amy, your a trooper. You just popped up on my screen today. So yeah im new around here.❤️
You really dress nice...also I think you are a true beauty with very good face structure. Just gorgeous
Oh hun, I so hope you gain the weight you need to gain, I’m sure you and family are concerned. I will pray you find what helps darlin’ I love ya xoxo
Feel better soon lovely. Keep going you got this 💪🏻💜
Success in your health recovery Amy!! Smile and laugh NO MATTER WHAT!! :D
I get that heat type rash as well.sometimes it aquous cream reaching a certain temp or clothing too tight.but it's itchy at night.try a fan or breathable clothes🌞
Best wishes pretty girl ❤️
Thanks for filming your journey, this makes me want to be a great nurse
Take care of yourself Amy ❤️❤️❤️
fingers and toes crossed you get better, love you xxx
Sending you lots of positive vibes !! 💜💜
Lol I love the relationship you have with your bf, that part when he was mixing up the feed was funny 😁😀
My skin does that to the sun too. It is from my hormones reacting to the sun. It is a heat rash. It may be from your body hormones shutting down from not having a period. Can you do a video explaining what TPN is? I saw your Instagram saying your doing it and am curious what it is. Your amazing! Love you and your videos sending a virtual hug! I am having a super crappy month dealing with my chronic illness too. It is comforting to see that someone else is going through the same thing it helps to not feel so alone. Sry to hear your struggling so much though.
TPN stands for "total parenteral nutrition," it's when you're given nutritional components (like glucose, amino acids, vitamins etc.) directly into your bloodstream instead of through your digestive system. Normally your digestive system absorbs those components from food, or from formula feed like Amy uses, and transports them into your bloodstream so your body's cells can use them. TPN is a way to get the nutrients into the bloodstream when the digestive system isn't working/absorbing at all.
That looks like tinea versicolor. It happens when you go in the sun but dont go away quickly
Sending healing thoughts x
I DID NOT KNOW YOU LIKED ONCE UPON A TIME!!!! who's your favorite character?
have they tested for thermal urticaria? that’s what i have and it looks like that. idk if it’s common in people with hEDS or Dysautonomia (which i have), but it might be an answer? feel better soon lovely!!!!!!!!!
I take an immunosuppressant, that happens to my skin if I stay in the hot sun for more than 10 minutes
Hey Amy! Wishing the best for you! Hope you feel better soo! 😘
That looked like grits!
Yes that's what I thought
I get the same rash when I am in the sun. They said it was chonic hives back in Jan by allergist. I see another doc for demolgist on 29th. To see if that's what it is or not.
Take care and always praying for you!
I think you look so beautiful even in the hospital I wish much love; happiness; health and more life to come. Much love from San Juan Puerto Rico yeah all the way to the Caribbean.
Ooh I love your outfit. The raspberry colour suits you so much 💜
@Amy: did they think you need to be tested for porphyria? Porphyria causes rashes like that when people go in the sun.
Isn't porpheria an extinct disease from the 18 hundreds that caused madness and sevear illnesses eventually leading to death......
Something Random You might be thinking of polio? or maybe mad cow disease?
@@somethingrandom7079no
New subscriber here just want to say God bless to you may!!!! u inspire others..n I appreciate that sooooooo much !!!!! #uRincredible
My skin breaks out like that mines is coz of PLE, am basically allergic to the sun it's not been so bad since ive had my treatment (controlled sunbeds) but it does still happen, it's really sore and itchy especially on my face, I hope you get the same treatment as me coz it does work xxx
Did they figure out where all the potassium went? Did your kidneys filter too much out or is it your HKPP? PS-Loved The Good Place! So sad when I ran out of episodes.
DarkBlue Matter it’s to do with my HKPP that’s why my levels won’t stay up and the malnutrition x
That was scary how much they had to give you. So glad they got it under control and I hope the TPN keeps your levels more stable! 💙
Wow!!! I started watching your most recent videos and it's amazing what a big difference 3 months can make.. You look sooooo good now!!
Lupus makes you break out from the sun. I have it and the summertime is horrible for me
*Crystal* Nicole Hi! I have Lupus too. I was thinking the same thing.
My mother is the same way
I hope you get better soon I love you
The cocktail shaking! Lol. V cute.
Hope you feel better soon xxx. Sending love from the Uk 🇬🇧. It’s starting to get a little bit nippy here xx. Do you miss living in England????
tina jacobs I don’t miss living in England but I do miss the people and all my friends and family! 💓
God bless you.
I went 9 months straight of hospital food. Do not wish this upon anyone
I wonder if broad spectrum digestion enzymes are tried? Might help you to gain some weight and often also helpful if there is gastro intestinal symptoms. I'm just suggesting. Don't know your situation otherwise. Nutrition therapist from Finland
Tom is so comedy!
The good place is amazing 😉
You are amazing girl ❤❤❤❤🌞🌞🌞
idk how on earth you can just bEnD yOuR aRm with that IV constantly in it, honestly any time i'm in the hospital with an IV I do not bend my arm. in the bed it's always straight, when i get up i try my best not to move it, and even when i used the fucking bathroom, i did. not. move. that. arm. I'm honestly impressed. Stay strong!
I am like that I don’t feel safe to bend it when I have IV on it 😒
I’m getting ready for scare tissue developing on my intestines! I hope you feel better!
Update ( nothing) so now a colonoscopy to see if I have a fissure. If not that I’ve got Gastroparesis
If its gastro, meds like domperidone can help wonders. I have a paralyzed gut after having half my large and a third small intestine removed. Hope you feel better soon!! If it comes down to it, I know it sounds horrid but a colostomy isnt that bad. I had one at 21 for a bit.
Hospital food is not so bad it taste good..
Hey Amy! You're amazing! Such courage and such a beautiful smile. Thank you for your vlogs.
I have EDS too, plus CRPS, with fibromylagia symptoms, chronic pain, extreme fatgue, peripheral neuropathy, braxial plexus damage, a full array of migraines and migrainous headaches and central sensitization with functional neuro disorder, real issues with my gut system etc.; severe dietary restrictions due to histamine, FODMAP (so no sugars i.e. Avoid all high carbs and most fruits etc etc., or take everything in very small amounts), combined with gluten and lactose intolerance with multiple chemical sensitivity intolerances (household, certain synthetic fabrics, latex, dust, pollens etc etc) make following the appropriate diet & lifestyle expensive and restrictive. And i currently live well below the breadline with a monthly total income of £160.
Ive tons of digestive system crap but fortunately nothing like what you live with. And my heart goes out to you! The pain is extreme. The abnormal bloating, bleeding, gastroparesis, swallowing issues, etc etc are no fun to live with. I get terrible pelvic pain just peeing, so i cannot imagine how you cope with the sh@& you've been dealt. So again ... You are amazing!
To your continued weight loss ... No not a good sign as you point out in the beginning of your vid.
I get the same skin response to yours (plus several others which can co-occurr or follow a set sequence) from a short time in the sun. It is a type of pseudo-allergic response to the sun, or so i understand. Doctors are currently arguing about the cause/diagnosis if my skin issues ....
And its a similar skin pattern too that one can get in CRPS/ Causalgia. Which is often referred to as central sensitization syndromes/disorder, or FND now days. In short, this neurological issue is often overlooked in favour of dermatological ideas.
Forgive me for my paucity of knowledge in the details of your med history. All i can say tor you is your doctors need to avoid puncturing or intruding into the body as much as is possible, because it sets off full body flares. And if its germane to your situation be sure they use tons of ketamine under anaesthetic, and that you tank up on massive amounts of vit C (6000mg for 2 days before an intrusive intervention).
The thing with an over reactive nervous-immune system (often found in EDS patients), is that inflammation must be controlled and can be controlled/managed with lifestyle and diet choices. I never really paid much attention to this issue until stress triggered even worse symptoms ..... which signifiers doctors at the time ignored as they couldn't work out what my symptoms were a sign of.
I don't know anything about your dietary restrictions despite your need for feeding, but it struck me as strange that you were eating every food that is inflammatory, or FODMAP sugar, or high in histamine. A study at the University of Maryland med school found a 47% improvement in all signifiers patients were monitored for when a full spectrum green stuff nutritional supplement was added to CRPS/ patients with multiple diagnoses. Thats an amazng result!
Your dermatological sun trigger is strange because that sun sensitivity is a MAST cell activation sign ...
And yes its very worrying you keep dropping your weight. Have they thought of putting you into ketosis with high fats, moderate protein and low carbs? It is making a world of difference to me. I know keto and paleo are sexy ideas at the moment that my traditionally trained Dietician abhors because carbohydrate intake is dropped to between 20 grams & 50 grams a day, but there is a reason or two given the science results from various nutrition studies. The idea is that when we move to burning fats (fats are like delivery trucks carrying lipids and other vital chemicals to the cells around the entire body), rather than trying to energise ourselves via glucose; the findings in Intermittent Fasting research are incredible regarding kick-starting the bodys self healing mechanisms.
And where needed there has been required weight GAIN, though most folk drop the carbs in order to lose weight properly by changing how we metabolise to "CREATE" energy, (forgive my contrary thermdynamics!), not just understand food as something we burn up..
Restorative Medicine is in its infancy, and perhaps your med team could look into it? (See Dr.Schwartz youtube talks on CRPS and its treatment. It will interest you.
I know how it feels battling the ignorance and hubris of Silo-trained specialists. And i know how intimidated these doctors can feel. Generally they're open to being told about research articles, though, and i hope your guys are fully supportive!!
I have POTS -Postural Orthostatic Tachycardia Syndrome- like signs and symptoms too, with the blackouts and drop downs i get, together with long collapses after exertion - kind of exercise intolerance -, yet my test results are not typical and they yet do not know WHY, although one doctor is absolutely convinced im medically ill and not that my brain and body interaction is broken! This is a fight still underway, and which requires full explication! An amazing autonomics neurologist at the National Neurological H in Lndn, U.K. went so far as to write in his reports, that "if the results of tests don't follow the symptoms apparent, then you're not interpreting the results correctly, or you're dong the wrong tests". And to always remember that trauma is only one strand in a person's history, and they must not be reduced to these events, even if there are inappropriate or emotional triggers creating physiological cascades. The body-brain often just needs reminding that despite genetics and auto-immune disorders, it does know how to heal itself for the most part.
I was wondering if they've ever given you a thermal imaging scan to monitor your sympathetic nervous system, and your body temperature patterns through your body thermo-image following blood flow?
Ive chatted enougg. Im now going to watch the remainder of this 01.11.2018 vid. Long time ago, but lets see what happens. Be loved and be free, xxmeg
i used to have the same skin reaction with the sun,,,it’s ass omgskfjjx
Hang in there princess and I mean that in the most respectful way
I hope you will be OK and your body gain some weight
Lol'n at Tom he's funny guy and pretty damn good looking that's coming from a lesbian 🤪🙈
Amy what type of blender do u use? Is your feed elemental or is it different x
Just Gil x the blender we use is a nutri-bullet and yeah my feel is fully elemental! X
I get the same thing when i go in the sun
My mom gets that. It's a sun allergy due to her MCAS.
Why do you have to make your own feed when in the hospital? Are things different than here in the US?
She makes her own coz it's not usually available at the hospital. It's specialty feed she orders that she can tolerate.
I was going to say it actually depends here in the US as well. My friend can only use KateFarms and the hospital does not stock it. Some people can tolerate different feeds but most hospitals carry “common/standard” brands.
It’s because my hospital doesn’t stock the feed I’m on, it has to be specially ordered and it also has to be blended and they don’t have a blender on my ward 😅😂
@@amyslife4457 so sorry honey..you would think for the price they could do that
Have they explored porphyria as a diagnosis?
I forking love the good place
I hope you are able to get the day leave you are asking about!!!
Was curious with the hospital meals they give you how much are you able to eat of them? ❤️
Amanda Dailey she mentioned she’s chewing and spitting, not swallowing.
None I chew and spit for the flavour xx
I was thinking mast cell too... does it hurt a lot ( burn or sting ) when you itch the urticaria?
I love you
The VPN works on 4g, i use mine like that in the Gym cause the wifi sucks :)
My skin does that on the sun bit I have Lupus And Chronic ITP xx
I get those rashes but it’s called pmle
Propherya . My granddaughters have it too.
Have you tryed to remove dairy??
Can you not eat anything? You say you can eat the juice
that you have that you are always in bad health
ughhhh vivanex, watching this thanx to YT picking up on my chrohns and cramping especially bad lately. skipping that neurogohst nightmare, curious if while on NPO if you’ve ever smuggled in a meal just to chew and spit out while watching food channel......its glorious btw😉
💜
加油打氣👍💸💝身心障礙者重症監護要注意藥物的安眠藥
不能吃安眠藥要吃少量的有人會鼻篩會死
Beans for breakfast?
Standard in the UK.
Do you have any meds like nortriptyline or amatriptyline, Gabapentin, ect....bc those kinds of meds can make you allergic to the sun. Amatriptyline did it to me. I took it for about 9 months when I was a teen and even after i stopped taking it, it made me have the reaction for about 5 yrs after.
do u know any more about this ???
any more about the allergic reactions? Only what I have lived through and read through research.
I used to take Gabapentin but not anymore, I do take Duloxatine tho x
Erica Taylor c
@@amyslife4457 is the Duloxatine new? Because it can be a rare side effect of it as well. I have found it is a bizarre side effect of most nerve agents, unfortunately.
Is it a private hospital ? The conditions look awesome, where I stayed it was such a shithole with 6 people in the room, awful bathroom and the food was vomit inducing
Sorry I cant watch all of it, the iv makes me cringe because of bad experiences 😌
Do you text people on your Instagram?
Thanks for the backstory so new comers know what your condition is.....oh wait. Anyway I gotta go to Castle Greyskull, can you point out the way Skeletor?
How old are you ? Xxx
Because of your illness why do you eat carbs ? Shouldn't you be on a keto diet?
A keto diet wouldn't do anything for gastroparesis. Carbs are actually encouraged because they're usually easier to digest.
Am I allowed to ask what is wrong I am a living donor
Amy. A Beautiful Young Women. 😊
Can we ask what you weigh now compared to youth healthier!!!
Kelly Cannon I was 65kg before I lost any weight, I’m now below 37kg (I’m not saying exact numbers) but I’ve lost a lot 😭
Beans are not for breakfast lol
If you have a proper full British breakfast you get a ton ae beans so they are here
what does her tattoo say and mean?
Maybe a diet change like something without grains or sugar and beans would be better?? Have you considered that ? Not trying to be rude or anything but a lot of people changed diets to paleo or keto and felt soo much better...
It wouldn't help. Gastroparesis causes paralysis of the stomach.
what does tom work as?
In Jesus name be healed fully now. As weird as it sounds check how you feel after reading this❤️
I still feel sick and depressed...🤷🏼♀️
SAMii94xo ok I've seen lots of people healed, so I will pray again and tell me how you feel after I post this. Be healed in Jesus name, all pain go now and spirit of depression go now,
I love your boldness...keep yielding...have you watched Robert Liardon's video ...God's Generals?
Lupus???
Nope. EDS, POTS, mast-cell failure and heart failure.