♡ Halloween Spent in a Hospital 🎃 (31.10.18) | Amy's Life ♡
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- čas přidán 1. 11. 2018
- ♡ Halloween Spent in a Hospital 🎃 (31.10.18) ♡
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My little boy has cancer and we have spent all of Halloween in hospital too, really hope to be out for bonfire night but not looking likely :( hope you are feeling better soon Amy xxx
They should have trick or treating in the hospital. My mom used to set up something where she’d buy candy and hand it out to the next couple of rooms over. It’s was a really good way to make friends in the hospital.
Immortal Velociraptor that sounds amaizng! I wish Halloween was more of a thing here 🙏🏼
A package of Primark clothes will be heading your way very soon 😊😉 I’m heading to Primark tomorrow so I shall post them to you from the lovely sunny Bournemouth where I live in the UK, so you shall receive a large package very soon. This is a very special treat for you as I’ve shared my story with you and you know we are both going through the same struggles with EDS, Intestinal Failure, TPN etc. & seeing you has for sure brought it all back home for me as it was May 2012 when I got sent home with TPN and had spent over 3 months in hospital where I was diagnosed with Intestinal Failure and had to endure the surgery of having a Hickman line, it was such a rough & scary time for me and so I really want to do something special and is why I am going to enjoy spending money on lots of fabulous clothes for you to enjoy wearing from Primark. You are so awesome and super courageous and if I get a chance to fly out to Australia sometime I shall definitely meet up with you as I’d love to meet you in person. Loads of get well hugs. From your awesome UK friend Helen 😋
POTSy Buni omg this made me cry! You are such a kind sole! A million thank you’s my love 💖💖💖 I hope your okay I know how awful these illnesses are and how much they take from you 😭 sending all my love ❤️❤️
I just crossed the wheelchair milestone which I never expected would be a part of my life and has made ALL the difference in me being in bed literally 22 -24 hours a day to being able to spend a couple of hours shopping without one complain or my immediate need to find a chair or a place to rest the entire time and I was able to be present and involved in Christmas shopping with my mom and my daughter without worrying about the pain and I could actually focus on what we were doing and enjoy my time out, as they were able to too without me complaining I needed to rest constantly. Or have Cataplexy and fall which is dangerous and makes them afraid to even leave me home alone. I live alone and have no help from a spouse or family 24/7.
That's my story, j just wanted you to know that I have been here watching your videos and empathizing with you with what you have been going through. If not for myself, for my daughter's sake. Your story has really resonated with me and makes me more certain that what my daughter is dealing with is some type of EDS, I just wish they would have her tested.
I really hope this gut rest and TPN does the trick for you. The difference between when I started watching your videos with your beautiful long thick hair , (which I never could grow and I've put mine into dreadlocks to hang onto what I have left which breaks off at the top and makes it fuzzy looking even though it's straight because my hair is so brittle and thin, when it started to go from healthy and long to more wispy and thin and broken and dry, I wanted to save what I could and so I dreaded it. Now it looks bad braking off between the dreadlocks and my scalp, nothing is the answer and they are very heavy and hurt my neck, but I love my hair and don't want to give any more up to this disease). I have also watched your beautiful body and skin turn from healthy and happy to skin and bones and pale with breakouts. You have gone through so much and I'm glad to hear that you gained a little weight and seem so much more upbeat since the Hickman line was placed and your TPN was started. I hope your liver acclimates to the new nutrition and doesn't reject it like your body has everything else. You have been such a major warrior with such an amazing attitude and positive person through all of this. You have the greatest husband of all time (boyfriend? Husband.). I have the greatest (oldest) daughter who has me absolutely cracking up until I have Cataplexy episodes from belly laughter that makes me stop breathing, she is so funny and we had such a blast in the loaner wheelchair (that doesn't have the automatic wheel assist yet until mine is finished and delivered) today we were just cracking up having so much fun inside and out. I am so tired from today's wheelchair appointment and all the hysterics we were in after bringing it home omg. I just love how much light she brings to this shit situation and how she can make me forget how this is a disability and it's gotten so much worse over the last few years it's unreal! I'm lucky like you are, to have a family who makes light and laughter out of situations that seem like they should be so bleak. Thanks for sharing your story. I'm sorry this is so long. I just wanted you to know how you've helped me with your videos. I think maybe it's about time for me to start documenting my story. I just wouldn't know where to begin. I have no clue how to do a CZcams video or channel. But with being on the Methadone, I have a different spin on this being that I have out on so much weight from that and such a sedentary and sleepy lifestyle from the narcolepsy symptoms. That's another reason, I am SO tired all the time, just thinking about the work that would go into the editing and uploading, which I have no idea how to do, makes me physically exhausted since I feel so overwhelmed with appointments and just one doctor's appointment takes me out for 3 days or more. I'm just asleep.
Anyway, maybe I will get around all of those extra things I need to do and can get going on learning how to do it. I'd love to be a part of the CZcams EDS community since we all have different spectrums and experiences.
I hope you do well with this TPN, I know it's so overwhelming with so much to do and learn. I hope before you know it it becomes second nature and your weight and health come up quickly!
i spent my halloween in the hospital with hypokalemia and was just discharged earlier today. i was only in for 3 days but i am so glad to be home to my bed and my own pillows!
Beans for breakfast are a common thing here in atlantic Canada!
Beans on toast is amazing! Born and raised in Kentucky/Tennessee and my husband thinks I’m so weird for liking it lol. One of my moms friends from Beeston actually got me to try it while she was in the states visiting family a few years ago.
I’m so excited to see you out of hospital!! It’s the best news finally, and there’s nothing like your own bed and stuff instead of all the hospital ones! Well, when you talked about breakfast I couldn’t stop thinking that here in Argentina we (or at least in my family) drink a cup of tea, mate (which is an infusion) with some toast with creamy cheese on top and that’s it! Dang, that breakfast looked like my lunch or even dinner! Hahaha! So happy for you, Amy ❤️ best wishes for your discharge! 💕
Hoping you get to rest in your own bed soon. I hate trying to sleep in the hospital, it is horrible. You look so much better. You have more energy and you just look like you feel better. Cute seeing Tom taking all your stuff home, looked like he was moving. I have not had beans for breakfast, but you know what, why not. Why limit yourself. I would definitely try it. Sounds good to me.
Happy Halloween Amy....always a fun hoilday....love...love...love your shirt.
Your starting to look so much better already. You have always been so beautiful. I love Halloween too it's my favorite holiday. Sending you lots of love from lawton Oklahoma xoxo
Can you use a backpack for your TPN and fluids? It would make things more portable. I'm loving the upswing in your energy. Keep up the good work.
Amy might have bad shoulders. A backpack might cause her more problems
We love beans for breakfast but cook then in a saucepan with butter so they nasty so try it!!
Hoping you’ve gad some decent rest. Have fun tonight! xxxxxxxxxx
Beans for breakfast is the bomb and I’m in Canada ❤️
Just so you know Amy primark has changed its sizes. So a 2xs is a 4-6 a xs is a 6-8 and a small is 8-10 x
Yea it’s definitely an American thing for not having beans for breakfast, I’m willing to try it tho haha love you Amy just know that the Lord is with you through all of your pain and sickness, even tho we go through stuff doesn’t mean he’s not with you along the way just remember that!!! Love you lots 😘
I’m American and have never had beans on toast but it looks good I’m down to try it 😂
Beans are awesome anytime 😉
I love Halloween 👻🎃
All the minerals to keep ya going. So happy for you we love our nurse friends but home feels so good.
The candy despeners of Halloween happiness 😉
You always look lovely dear 💖
an odd question, a thing back over here in the UK the water and electic (gas as well sometime) if you are on medical kit, should you do that over there in OZ? (if there is a problem with the grid, they can check you are OK)
Roger Orchard I’ve never heard of that before but im sure there’s some service that would be able to check on me 😅
I hope you are out of hospital and into Halloween. Halloween is not just one day. Halloween is always.
Im in Alberta canada and ive only seen beans with breakfast at fancy restaurants haha
Good ol Texans, USA, love beans for breakfast!
I’m from the UK and at first I thought you were too as our accents sound really similar lol
She's from Manchester x
She is from the Uk she has a dual citizenship she has moved between Australia and uk through her life xxx
Here in the US, beans are a dinner food. A lot of times served with burgers or hot dogs at a bbq. But yes, us Americans are weird! 😂
Yeah lol we don’t eat beans for breakfast here in the United States
I wish you could order primart online like every other company does... But I will totally try and find you some harry Potter PJ's...
Verry beautifull
Hi Amy!
I have EDS, nowhere near as intense as you, in fact I have SIBO with constipation and no vomiting or nausea and am not getting the nutrition I need because of all the bacteria that's stealing it. So I have gained like 50 pounds in the past 3 years and I'm 44, I never was able to gain weight my entire life until suddenly I got extremely bloated to the literal size of a term pregnancy that couldn't be hidden. Now it has dispersed to being overweight and my thighs and of course my belly is huge and it's in my face and I hate it, I do NOT look like myself. I am on Methadone for pain and a past severe opiate addiction that nearly killed me when I didn't have health insurance (I'm in America and that's the worst, among trying to find doctors that work for the state taking the insurance I have through them at the moment which is awful).
I was diagnosed with EDS far too late because they misdiagnosed me with Juvenile Rheumatoid Arthritis for about 10 years and Narcolepsy with Cataplexy which might be a POTS type thing I'm dealing with (the Cataplexy) and I read why the narcolepsy symptoms happen and all of my diagnoses under it, symptom wise such as periodic limb movement disorder, REM behavior disorder and mild sleep apnea from before I'd gained this weight were all components related to EDS (I have hypermobility type 3), and it all came together. Validation, but the treatment is next to nothing.
My eldest daughter is 23 who has hypermobility and lots of the same co-morbidities as I do, in fact, other than the sleep disorder, she has exactly the same pain in the same places I did at her age. It's worrisome.
My 14 year old daughter has intestinal failure and was on TPN for a couple of years after they had to remove her dead pancreas from chronic pancreatitis throughout my pregnancy (she had it) and after she was born which took a long time to figure out. She couldn't take feeds longer than two weeks before they'd have to be switched. She had a G-tube when she was a baby and then a GJ tube, none of it would keep her going and she kept losing weight and was so skinny, then they tied off the top of her stomach so she couldn't throw up which has been so distressful for her in that she gags literally until her eyes bleed and has these episodes all day long. She is now on an NG tube with her GJ tube for meds and stuff. No more central line because she had a small bowel and pancreas transplant after living without a pancreas for a couple of years. They took her islet (insulin production cells) and harvested them and put them into her liver, a HUGE operation we didn't think she'd survive and she kept going back in for bleeding complications among several other things they got under control
Was on life support after that with her belly open from her sternum to her pubic bone (which had to heal from the inside out) for 5 weeks before they extubated her and she has been less sick from line infections from the central line but has had many more gut issues. However, the new intestines have withstood her for the past 10 years and she's doing well. Of course she still has low immunity and we aren't sure if this is even EDS related. I was adopted so we don't know my health history but I have the diagnosis as does my older daughter. I still have a 9 out of 9 on the Beighton Scale at the age of 44. But I have so much stiffness that my muscles are clamping down on my subluxed joints and it causes extraordinary amounts of pain and need for a cracking and popping and relocating my joints with splinting and bracing all the time. Otherwise the cracking and popping literally keeps me up all night and I can't get away from the clostraphobia feeling when my muscles spasm around joints that aren't in place.
(Telling you my life story).
Anyway, I have been following your story since you were throwing up your NJ tubes and the bleeding and constant vomiting. You have really resonated with me.
The reason why my daughter hasn't been tested for EDS yet is because I was too sick to take care of her and my best friend stepped in and adopted her. She's from Norway where they have free healthcare and it's excellent. Now that it has taken me this much time to get to the bottom of my own diagnosis, finally I have been correctly diagnosed, my daughter's adoptive mom won't listen to how serious this is for her medical future and present and won't take genetic testing seriously because she thinks since there's no cure and the treatment is working so far for my daughter what's the point when there is nothing they can do about it (is her feeling). I can't get through to her how South this can go and how fast and if they had the correct genetic cause of EDS and what kind (I believe she has the Kyphoscoliosis type) they need to be looking for other co-morbidities such as the mast cell stuff and vascular anomalies. My own organs from my GI tract to my vocal cords to ligaments I never had problems with such as my knees are so stretched out now. I have urinary retention and leaking (dribbling I don't even feel) my "bladder go button" is always being pushed on and I'm up a lot at night and can't pee. My appetite is shit, until it's not and I can eat a lot (a normal amount for anyone else which is a ton for me), I'm a snacker, not a meal eater and I tend to stick with one food item at a time. And this is getting too long.
Did you know primark have changed there sizing it’s much better now I will keep an eye out for something when I’m next there xxx
Jadekimmm really!!! How does it work now?
Its got XXS now so size 4-6 and the 6-8 it’s much better sizing now and it’s not as flary if you know what I mean xxx
Amy's Life
Hi fun today
In Aus do they not do home delivery for all your supplies?
Jenn Cort I think they are sending her home with a little bit while they wait for her first delivery...just Incase it is slow etc.
I know for her feeding supplies she had to pick them up herself
I’m watching your video and I’m thinking how is she ignoring her alarm on her IV. Turns out it’s my TPN saying it’s done 😂😂
I have my fingers and toes crossed for u also, realy hope u mange to stay out of hospital for the rest of this year
I like black refried beans on toast. I’m an American.
Treat masters/mistresses
💜
Why do they give you food you can only chew and spit?
Beth Bounds i asked them too! I love food! I mean it’s a love hate relationship but I like the taste and the texture! Even if I can only chew & spit 😅
Usa its barbecue beans and beans n weiners lol
So sad that you spent Halloween in A hospital.
Love Harry Potter!!! That party sounds like a good time!!!What ever happened to the nurse who was diluting your meds in too much liquid? Also, how’s your sister? Was she released?
Alyson Jade haha that nurse is long goneeee, I don’t know I never saw her again 😂
Amy's Life good riddance!!! 😃