I just want to thank you so much for being open about depression and antidepressants. I talked to my doctor and started one myself and even though I'm still on the low dose, I feel so much better than I have in actual years. Love you!
Hey Amy, I hope you have an amazing day :) honestly, you are one of the reasons I got my diagnosis and am still being diagnosed. I saw your videos and everything clicked and I've been watching your videos since. I have EDS and possible POTS, and GI issues so I completely relate😅 Keep doing you, and congrats on college!!❤️
You are looking and sounding so much better these days Amy. It appears you have heaps more energy and able to do things that you would have struggled to achieve 6weeks ago.
It's so interesting that I can relate to some treatments you're going through, despite me not having a chronic physical illness. I've been severely anorexic and been tube fed on numerous occations, so I know all about that. And the portable EKG I've also had because a medication gave me weird heart rhythm. So I feel I can connect on some levels, despite being in a very different position than you. It's worth thinking about, that people are much more alike than we think.
Heyy Amy, I am watching this pretty late but once upon a time is amazing love it. It’s a way for my escape from the really world when I am so stress out about what’s happening around me
Hi Amy, forgot to comment the other day. I recommend that when removing the heart tabs or any sticky medical stuff ie tapes to use Remove Universal Adhesive Remover Wipes. You can get them from Chemist Warehouse. Thinking of you xo
Hi Amy u also use a catheter 4 times a day. I was born with Spina Bifida. Which causes my bladder not to empty properly. Depending on how much I drink between the 4 hrs. I can sometimes have over 250 in my bladder. I also have 1 kidney. Which I was told to drink as much as I can. Using catheter to empty. Love watching u girl. Take care, and have a great Christmas. x
"Shall I put him in the woods? Buddha Pete, one cleaning in the church shoes. What are you at the table cut from ebony? Real skinny piece..." HAHAHA!! I LOVE AUTOGENERATED SUBTITLES!! Especially when they try to translate singing. It's SO funny!!
i cath about 3-4x a day but so far ive only done it twice today. im supposed to be doing it 5x a day. i dont drink that much liquid but right now i'm having the issue of not releasing all of my urine and its leaving me with infections after infections. ive gotten 2 uti's in this month...Something's gotta be done. take care of yourself, Amy. You are so beautiful. Especially w/o makeup. i hope you start feeling better soon!
Loved Once Upon A Time! Good show to binge when you need an escape. The last few seasons weren’t as good, but I guess that’s how most long running series get eventually. Overall, it was a fun show.
I am allergic to adhesive also and had to take mine off early and it scarred me. So I’m getting a loop recorder put in this Friday. Do they have anything like that their. Maybe that would work better for you. It’s an implant that goes right under the skin
Catching the train will be a much more cost effective as parking in the city all day can be very expensive and I don’t think there are concessions for parking or ACROD concessions. Check with the City of Perth parking might be worth while.
I dont have any gastro issues (other than lactose intolerance) and I'm pregnant but I only go for a wee 2-3 times a day and have always struggled with fluid but I found I can up my fluids by sipping on mineral water. Would that be an option to sip on something without having to drain?
Hey Amy btw be aware that pins and needles is a warning sign for low potassium. I found that out the hard way. And the holter Monitor is a pain in the ass. I can only have it for 24 hr cause it starts to make my skin bubble it hurts and itches so bad. I always look like I have been attacked by an octopus. And it never fails it is always right before i need to go to or be in a wedding. Be glad you didn’t have to wear a sexy burn mesh bra that they gave my sis to wear at our hospital cardiac clinic. When in doubt go to the cardiologists office not the hospital clinic......😑
I also use self catheter and my doctor has told me that about 100 cl a day is the absolute least it should be otherwise the kidneys will get damaged. So maybe you should try to run some more fluids? If you run one bag morning and before bed it would be enough for your kidneys.
Will keep an eye out for your jumper giveaway. I’ve been wanting to purchase one, but just don’t have the funds right now. Sorry to hear you only somewhat enjoyed Aladdin. I myself really love musicals whereas my husband thinks it’s unrealistic people just walk around busting out into song....yet I do it all the time so I don’t know why it’s so unbelievable. 😂 Love your yellow striped top. Reminds me of Hufflepuff!!!
Omg I wore an event monitor for a month and I had the same reaction 😭 I now have stupid like faint scars on my chest and belly, but i did have to wear it for 30 days lol. So hopefully you heal a lot better than me.
You really look good! Isn't it wonderful being able to go out with no feeds and a feeding tube in your nose? Days I can leave the house without visible disabilities are something I never take for granted! I get the same reaction to many adhesives. If there is one type of tape or dressing(opsite, tehaderm, etc. that you tolerate better than others, you can use it on medication patches and electrodes like you had. What works best for me, is to cut as much of the adhesive off as you can without ruining the electrode. I then dab any adhesive that's still there with tissue so that it's no longer sticky. Then I put the electrode where it needs to be and place a piece of tape or dressing I do tolerate over it. Doing that and using barrier spray really really help. There are many reason for us to loose fluid causing a decrease in urination. Ideally most people at the least should have around or over 1,000L per day, but we are all different for you will have to ask your doctor what number would be ideal for you. For now, with as bad as your GP is, your fluid intake would just be the amount of fluid you are getting from your feeds. I know you've talked about it before, but it may be time now possibly consider starting extra IV fluids just enough to bump that number up some. The most obvious source of fluid loss now is the amount being drain from your Gtube including however much your saliva you make and swallow. We all seem to lose a bit breathing and sweating. Loose watery stools and vomiting also cause fluid loss. Edema(retaining fluids in tissues like arms an legs) from mast cell reactions can also reduce urine output. The treatment for these different things are not the same, so in this case it would be best to talk to your doctor, have them check electrolyte levels, and go from there.
Hi Amy my name's ashlee I just wanted to reach out cause I seen your post on instagram about having an EP study, I have EDS, SVT, and pots as well as gastroparesis. So I just wanted to share my experience with you. My first EP was under general anesthesia so I don't remember anything but I was out for 4 hours so the recovery was tough I spent 3 days in hospital. The second one was under light sedation which did nothing to me due to the rapid metabolization from EDS so I was wide awake and crying for most of it because they inject you with lidocaine which again did nothing due to EDS. So just wanted to share and offer support if you have any questions please reply
My urine output really depends on how much I have to drain from my g-tube. The more I drain from it the less I urinate. So a g-tube drain day of 400ml I urinate way more than a g-tube drain day of 1,000+.
What are you studying at school again? Xx Also, could you do an updated video on your feeding tube, draining, foods you like to eat, etc. would be super helpful! 😘⭐️
Currently dealing with that same reaction from electrodes from being in hospital for 4 days :(( allergic to the nickel and adhesives We put petroleum jelly on the blisters for mine, not the best solution but when your skin is raw not much you can do, hah
Really like the style of that orange shirt, looks great on you! I struggle with intake as well, and only go 2 or 3 times a day, this isn't how I used to be but it's progressed to that. Midodrine makes it worse as it kind of dries your body out. So jealous you got to see Aladdin! I'm sure it was great
@@plagvebaby especially the last link of *barrier cream* a specific one for neutralizing skin, irritation and putting a seal over it (almost like a invisible plaster if you get what i mean) ♡♡♡
Hello again my love.. How are you? How's Tom? I love when you do your make up.. Your beautiful without it but with it you look like a model.. Your beautiful.. Did you ever put thought into doing a daily shootout?? That would be cool.. Love you.. Hope everyone is good.. See u next time. 💕💕💕
your body could be retaining the fluid due to dehydration i suggest doing at least an hour of fluids (at the highest rate you tolerate without pain) through your j tube in every 24 hour period and if you are still retaining too much up it to 2 hours of fluid.
You really look good! Isn't it wonderful being able to go out with no feeds and a feeding tube in your nose? Days I can leave the house without visible disabilities are something I never take for granted! I get the same reaction to many adhesives. If there is one type of tape or dressing(opsite, tehaderm, etc. that you tolerate better than others, you can use it on medication patches and electrodes like you had. What works best for me, is to cut as much of the adhesive off as you can without ruining the electrode. I then dab any adhesive that's still there with tissue so that it's no longer sticky. Then I put the electrode where it needs to be and place a piece of tape or dressing I do tolerate over it. Doing that and using barrier spray really really help. There are many reason for us to loose fluid causing a decrease in urination. Ideally most people at the least should have around or over 1,000L per day, but we are all different for you will have to ask your doctor what number would be ideal for you. For now, with as bad as your GP is, your fluid intake would just be the amount of fluid you are getting from your feeds. I know you've talked about it before, but it may be time now possibly consider starting extra IV fluids just enough to bump that number up some. The most obvious source of fluid loss now is the amount being drain from your Gtube including however much your saliva you make and swallow. We all seem to lose a bit breathing and sweating. Loose watery stools and vomiting also cause fluid loss. Edema(retaining fluids in tissues like arms an legs) from mast cell reactions can also reduce urine output. The treatment for these different things are not the same, so in this case it would be best to talk to your doctor, have them check electrolyte levels, and go from there.
You really look good! Isn't it wonderful being able to go out with no feeds and a feeding tube in your nose? Days I can leave the house without visible disabilities are something I never take for granted! I get the same reaction to many adhesives. If there is one type of tape or dressing(opsite, tehaderm, etc. that you tolerate better than others, you can use it on medication patches and electrodes like you had. What works best for me, is to cut as much of the adhesive off as you can without ruining the electrode. I then dab any adhesive that's still there with tissue so that it's no longer sticky. Then I put the electrode where it needs to be and place a piece of tape or dressing I do tolerate over it. Doing that and using barrier spray really really help. There are many reason for us to loose fluid causing a decrease in urination. Ideally most people at the least should have around or over 1,000L per day, but we are all different for you will have to ask your doctor what number would be ideal for you. For now, with as bad as your GP is, your fluid intake would just be the amount of fluid you are getting from your feeds. I know you've talked about it before, but it may be time now possibly consider starting extra IV fluids just enough to bump that number up some. The most obvious source of fluid loss now is the amount being drain from your Gtube including however much your saliva you make and swallow. We all seem to lose a bit breathing and sweating. Loose watery stools and vomiting also cause fluid loss. Edema(retaining fluids in tissues like arms an legs) from mast cell reactions can also reduce urine output. The treatment for these different things are not the same, so in this case it would be best to talk to your doctor, have them check electrolyte levels, and go from there.
I just want to thank you so much for being open about depression and antidepressants. I talked to my doctor and started one myself and even though I'm still on the low dose, I feel so much better than I have in actual years. Love you!
Thank you for all you have done Amy 💙. You will never be forgotten 💚🌷
Hey Amy, I hope you have an amazing day :) honestly, you are one of the reasons I got my diagnosis and am still being diagnosed. I saw your videos and everything clicked and I've been watching your videos since. I have EDS and possible POTS, and GI issues so I completely relate😅
Keep doing you, and congrats on college!!❤️
Amy could have been a model she’s so beautiful. Such a wonderful girl I miss her.
You are looking and sounding so much better these days Amy. It appears you have heaps more energy and able to do things that you would have struggled to achieve 6weeks ago.
It's so interesting that I can relate to some treatments you're going through, despite me not having a chronic physical illness. I've been severely anorexic and been tube fed on numerous occations, so I know all about that. And the portable EKG I've also had because a medication gave me weird heart rhythm. So I feel I can connect on some levels, despite being in a very different position than you. It's worth thinking about, that people are much more alike than we think.
Heyy Amy, I am watching this pretty late but once upon a time is amazing love it. It’s a way for my escape from the really world when I am so stress out about what’s happening around me
Hi Amy, forgot to comment the other day. I recommend that when removing the heart tabs or any sticky medical stuff ie tapes to use Remove Universal Adhesive Remover Wipes. You can get them from Chemist Warehouse. Thinking of you xo
Your dads house is aesthetically pleasing❤️
Omg Amy your make up is always on point you seriously need to do a tutorial for people like me with no makeup skills 🤣
Hey Amy hope you have a brilliant day
Hi Amy u also use a catheter 4 times a day. I was born with Spina Bifida. Which causes my bladder not to empty properly. Depending on how much I drink between the 4 hrs. I can sometimes have over 250 in my bladder. I also have 1 kidney. Which I was told to drink as much as I can. Using catheter to empty. Love watching u girl. Take care, and have a great Christmas. x
"Shall I put him in the woods? Buddha Pete, one cleaning in the church shoes. What are you at the table cut from ebony? Real skinny piece..." HAHAHA!! I LOVE AUTOGENERATED SUBTITLES!! Especially when they try to translate singing. It's SO funny!!
I've finished once upon a time and I loved it all so much! You will love it!
I had to leave college because of my health and have not been able to go back. It's good that you are going have fun.
i cath about 3-4x a day but so far ive only done it twice today. im supposed to be doing it 5x a day. i dont drink that much liquid but right now i'm having the issue of not releasing all of my urine and its leaving me with infections after infections. ive gotten 2 uti's in this month...Something's gotta be done. take care of yourself, Amy. You are so beautiful. Especially w/o makeup. i hope you start feeling better soon!
Loved Once Upon A Time! Good show to binge when you need an escape. The last few seasons weren’t as good, but I guess that’s how most long running series get eventually. Overall, it was a fun show.
I am allergic to adhesive also and had to take mine off early and it scarred me. So I’m getting a loop recorder put in this Friday. Do they have anything like that their. Maybe that would work better for you. It’s an implant that goes right under the skin
Amy what kind of drainage bags do you use for your gtube? I’m trying to find a new bag to try?
Did they use the paper tape? I had the same skin reactions. I think it was the tape. Super itchy it almost felt like it was burning my skin.
Hey Amy I really wanna win a sweat shirt of urs if I don’t win I’ll just buy one because I want one so bad
Catching the train will be a much more cost effective as parking in the city all day can be very expensive and I don’t think there are concessions for parking or ACROD concessions. Check with the City of Perth parking might be worth while.
Jo Raston there’s free parking at my Tafe as far as I’m aware so Parking isn’t an issue, it’s just weather it’s easier to get the train or drive x
I dont have any gastro issues (other than lactose intolerance) and I'm pregnant but I only go for a wee 2-3 times a day and have always struggled with fluid but I found I can up my fluids by sipping on mineral water. Would that be an option to sip on something without having to drain?
Hey Amy btw be aware that pins and needles is a warning sign for low potassium. I found that out the hard way. And the holter Monitor is a pain in the ass. I can only have it for 24 hr cause it starts to make my skin bubble it hurts and itches so bad. I always look like I have been attacked by an octopus. And it never fails it is always right before i need to go to or be in a wedding. Be glad you didn’t have to wear a sexy burn mesh bra that they gave my sis to wear at our hospital cardiac clinic. When in doubt go to the cardiologists office not the hospital clinic......😑
You’re makeup is so nice I love the eye look !! What session of once upon a time are you on ? Xxxx
I also use self catheter and my doctor has told me that about 100 cl a day is the absolute least it should be otherwise the kidneys will get damaged. So maybe you should try to run some more fluids? If you run one bag morning and before bed it would be enough for your kidneys.
Will keep an eye out for your jumper giveaway. I’ve been wanting to purchase one, but just don’t have the funds right now. Sorry to hear you only somewhat enjoyed Aladdin. I myself really love musicals whereas my husband thinks it’s unrealistic people just walk around busting out into song....yet I do it all the time so I don’t know why it’s so unbelievable. 😂 Love your yellow striped top. Reminds me of Hufflepuff!!!
Ok, allergic reaction is so crazy! Dang, it seriously looks painful!!!!
I have the opposite issue I go too much but I only go for a bowel movement one a week and that day is hell on 🌏 i wish you all the best of luck
Omg I wore an event monitor for a month and I had the same reaction 😭 I now have stupid like faint scars on my chest and belly, but i did have to wear it for 30 days lol. So hopefully you heal a lot better than me.
How do you take your medications in your tube? Do you crush them or are they in liquid form?
Hey Amy! Does your Merch ship to the US?
Where’s your feeding tube? Is she getting much better I hope so
Stranger things is my life ! I have a PEGJ (surgical tube) now xx
I had a holster heart monitor too and nothing happened to my skin it was just sweaty
my boyfriend worked on once upon a time and it was filmed here in my city 😊
You really look good! Isn't it wonderful being able to go out with no feeds and a feeding tube in your nose? Days I can leave the house without visible disabilities are something I never take for granted! I get the same reaction to many adhesives. If there is one type of tape or dressing(opsite, tehaderm, etc. that you tolerate better than others, you can use it on medication patches and electrodes like you had. What works best for me, is to cut as much of the adhesive off as you can without ruining the electrode. I then dab any adhesive that's still there with tissue so that it's no longer sticky. Then I put the electrode where it needs to be and place a piece of tape or dressing I do tolerate over it. Doing that and using barrier spray really really help. There are many reason for us to loose fluid causing a decrease in urination. Ideally most people at the least should have around or over 1,000L per day, but we are all different for you will have to ask your doctor what number would be ideal for you. For now, with as bad as your GP is, your fluid intake would just be the amount of fluid you are getting from your feeds. I know you've talked about it before, but it may be time now possibly consider starting extra IV fluids just enough to bump that number up some. The most obvious source of fluid loss now is the amount being drain from your Gtube including however much your saliva you make and swallow. We all seem to lose a bit breathing and sweating. Loose watery stools and vomiting also cause fluid loss. Edema(retaining fluids in tissues like arms an legs) from mast cell reactions can also reduce urine output. The treatment for these different things are not the same, so in this case it would be best to talk to your doctor, have them check electrolyte levels, and go from there.
You are amazing and i love you so much
Behby iloveyou❤️take care always❤️be strong❤️❤️❤️
Hi Amy my name's ashlee I just wanted to reach out cause I seen your post on instagram about having an EP study, I have EDS, SVT, and pots as well as gastroparesis. So I just wanted to share my experience with you. My first EP was under general anesthesia so I don't remember anything but I was out for 4 hours so the recovery was tough I spent 3 days in hospital. The second one was under light sedation which did nothing to me due to the rapid metabolization from EDS so I was wide awake and crying for most of it because they inject you with lidocaine which again did nothing due to EDS. So just wanted to share and offer support if you have any questions please reply
Love all vlogs hun xx
My urine output really depends on how much I have to drain from my g-tube. The more I drain from it the less I urinate. So a g-tube drain day of 400ml I urinate way more than a g-tube drain day of 1,000+.
I feel for you with the reaction. I get the same from Elastoplast bandages. It's horrid.
aloco wipe will remove residue
Mine was super itchy
What are you studying at school again? Xx
Also, could you do an updated video on your feeding tube, draining, foods you like to eat, etc. would be super helpful! 😘⭐️
💜
Sometimes I am that way but do not have catheter
Currently dealing with that same reaction from electrodes from being in hospital for 4 days :(( allergic to the nickel and adhesives
We put petroleum jelly on the blisters for mine, not the best solution but when your skin is raw not much you can do, hah
Really like the style of that orange shirt, looks great on you!
I struggle with intake as well, and only go 2 or 3 times a day, this isn't how I used to be but it's progressed to that. Midodrine makes it worse as it kind of dries your body out.
So jealous you got to see Aladdin! I'm sure it was great
@@plagvebaby see my comment it may help u just now x
@@plagvebaby especially the last link of *barrier cream* a specific one for neutralizing skin, irritation and putting a seal over it (almost like a invisible plaster if you get what i mean) ♡♡♡
Hello again my love.. How are you? How's Tom? I love when you do your make up.. Your beautiful without it but with it you look like a model.. Your beautiful.. Did you ever put thought into doing a daily shootout?? That would be cool.. Love you.. Hope everyone is good.. See u next time. 💕💕💕
I hate holter monitors so much my skin always reacts to the sticky pads
your body could be retaining the fluid due to dehydration i suggest doing at least an hour of fluids (at the highest rate you tolerate without pain) through your j tube in every 24 hour period and if you are still retaining too much up it to 2 hours of fluid.
maybe you should measure what you drain out of you ng tube too. I think that's why not much urine and check your kidneys are ok too.
You really look good! Isn't it wonderful being able to go out with no feeds and a feeding tube in your nose? Days I can leave the house without visible disabilities are something I never take for granted! I get the same reaction to many adhesives. If there is one type of tape or dressing(opsite, tehaderm, etc. that you tolerate better than others, you can use it on medication patches and electrodes like you had. What works best for me, is to cut as much of the adhesive off as you can without ruining the electrode. I then dab any adhesive that's still there with tissue so that it's no longer sticky. Then I put the electrode where it needs to be and place a piece of tape or dressing I do tolerate over it. Doing that and using barrier spray really really help. There are many reason for us to loose fluid causing a decrease in urination. Ideally most people at the least should have around or over 1,000L per day, but we are all different for you will have to ask your doctor what number would be ideal for you. For now, with as bad as your GP is, your fluid intake would just be the amount of fluid you are getting from your feeds. I know you've talked about it before, but it may be time now possibly consider starting extra IV fluids just enough to bump that number up some. The most obvious source of fluid loss now is the amount being drain from your Gtube including however much your saliva you make and swallow. We all seem to lose a bit breathing and sweating. Loose watery stools and vomiting also cause fluid loss. Edema(retaining fluids in tissues like arms an legs) from mast cell reactions can also reduce urine output. The treatment for these different things are not the same, so in this case it would be best to talk to your doctor, have them check electrolyte levels, and go from there.
You really look good! Isn't it wonderful being able to go out with no feeds and a feeding tube in your nose? Days I can leave the house without visible disabilities are something I never take for granted! I get the same reaction to many adhesives. If there is one type of tape or dressing(opsite, tehaderm, etc. that you tolerate better than others, you can use it on medication patches and electrodes like you had. What works best for me, is to cut as much of the adhesive off as you can without ruining the electrode. I then dab any adhesive that's still there with tissue so that it's no longer sticky. Then I put the electrode where it needs to be and place a piece of tape or dressing I do tolerate over it. Doing that and using barrier spray really really help. There are many reason for us to loose fluid causing a decrease in urination. Ideally most people at the least should have around or over 1,000L per day, but we are all different for you will have to ask your doctor what number would be ideal for you. For now, with as bad as your GP is, your fluid intake would just be the amount of fluid you are getting from your feeds. I know you've talked about it before, but it may be time now possibly consider starting extra IV fluids just enough to bump that number up some. The most obvious source of fluid loss now is the amount being drain from your Gtube including however much your saliva you make and swallow. We all seem to lose a bit breathing and sweating. Loose watery stools and vomiting also cause fluid loss. Edema(retaining fluids in tissues like arms an legs) from mast cell reactions can also reduce urine output. The treatment for these different things are not the same, so in this case it would be best to talk to your doctor, have them check electrolyte levels, and go from there.