![chronically Sarah](/img/default-banner.jpg)
- Видео 74
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chronically Sarah
Добавлен 17 дек 2012
Just a girl sharing her world and life with chronic illnesses and disabilities. I have a multipurpose Service Dog named Ollie.
I have Ehlers Danlos Syndrome (hypermobility type), Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Gastroparesis, Small Bowel Obstruction, Migraines, Autoimmune Hepatitis, Advanced Fibrosis, and more. I am learning to live and balance of living my life to the fullest while also having multiple debilitating chronic illnesses and disabilities.
I have Ehlers Danlos Syndrome (hypermobility type), Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Gastroparesis, Small Bowel Obstruction, Migraines, Autoimmune Hepatitis, Advanced Fibrosis, and more. I am learning to live and balance of living my life to the fullest while also having multiple debilitating chronic illnesses and disabilities.
Service Dog comes to IV hydration with me mini vlog | vlogmas 08-09
Happy vlogmas day 8-9. That migraine really took me out. My sleep schedule is completely backwards too lol. I'll try to film what I can! Much love! 🎄
Hi! I'm Sarah! Welcome to my channel where I share my experience as a disabled and chronically ill woman with a Service Dog, Ollie.
•follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y=
•follow my spoonie/personal IG @chronically.sarahdayton chronically.sarahdayton?igshid=NjY2NjE5MzQ=
•follow my TikTok: www.tiktok.com/@chronically.sarahdayton
My linktree for everything else: linktr.ee/chronically.sarah
Please remember to be kind!
• Link to the Mighty Well backpack and plea...
Hi! I'm Sarah! Welcome to my channel where I share my experience as a disabled and chronically ill woman with a Service Dog, Ollie.
•follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y=
•follow my spoonie/personal IG @chronically.sarahdayton chronically.sarahdayton?igshid=NjY2NjE5MzQ=
•follow my TikTok: www.tiktok.com/@chronically.sarahdayton
My linktree for everything else: linktr.ee/chronically.sarah
Please remember to be kind!
• Link to the Mighty Well backpack and plea...
Просмотров: 306
Видео
busy health day- IV hydration and iron treatment | vlogmas 05-07
Просмотров 237Год назад
Happy vlogmas day 5-7. Sorry I didn't film more! I've been running low on spoons lately. I'll try to film as much as I can. Much love! 🎄 Hi! I'm Sarah! Welcome to my channel where I share my experience as a disabled and chronically ill woman with a Service Dog, Ollie. •follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y= •follow my spo...
a real bedtime routine as a chronically ill/disabled woman with a G-J feeding tube| vlogmas 04
Просмотров 415Год назад
Happy vlogmas day 4!🎄 I hope you enjoy and laugh with me as you watch my slep medication induced rambling lol Hi! I'm Sarah! Welcome to my channel where I share my experience as a disabled and chronically ill woman with a Service Dog, Ollie. •follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y= •follow my spoonie/personal IG @chronical...
Feeding tube supplies organization + unboxing home health order | Vlogmas 03
Просмотров 639Год назад
Welcome to vlogmas day 3! Sorry i am already behind somehow…oh well… Happy vlogmas! Hi! I'm Sarah! Welcome to my channel where I share my experience as a disabled and chronically ill woman with a Service Dog, Ollie. •follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y= •follow my spoonie/personal IG @chronically.sarahdayton instagram.c...
day in the life of a chronically ill/disabled woman | IV hydration and G-J feeding tube | Vlogmas 02
Просмотров 336Год назад
Happy Vlogmas day 2! Here is a “day in the life” styled vlog! I went to get IV hydration and showed my feeding tube set up. I also showed some stuff in between and lots of Ollie’s cute little face! I hope you enjoy it! 🎄 Hi! I'm Sarah! Welcome to my channel where I share my experience as a disabled and chronically ill woman with a Service Dog, Ollie. •follow Ollie, my multipurpose Service Dog @...
Decorating my room for Christmas | Vlogmas 01
Просмотров 59Год назад
Happy Vlogmas day 1!! Here Is how I decorated my room for Christmas as a spoonie. And of course, Ollie had to help too! 🎄 Hi! I'm Sarah! Welcome to my channel where I share my experience as a disabled and chronically ill woman with a Service Dog, Ollie. •follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y= •follow my spoonie/personal I...
How I set up my FEEDING TUBE in depth MUC-KEY button | G-J feeding tube | feeding tube backpack
Просмотров 467Год назад
I know this video is super long, but I wanted to show everything in detail in real time. Hi! I'm Sarah! Welcome to my channel where I share my experience as a disabled and chronically ill woman with a Service Dog, Ollie. •follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y= •follow my spoonie/personal IG @chronically.sarahdayton instag...
bedtime routine with a G-J FEEDING TUBE and a Service Dog | gastroparesis, spoonie, hEDS | 11•10•22
Просмотров 1,3 тыс.Год назад
Hi! I'm Sarah! This is my multipurpose Service Dog Ollie! •follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y= •follow my spoonie/personal IG @chronically.sarahdayton chronically.sarahdayton?igshid=NjY2NjE5MzQ= •follow my TikTok: www.tiktok.com/@chronically.sarahdayton My linktree for everything else: linktr.ee/chronical...
my SERVICE DOG’S FIRST TIME going to IV hydration with me! *mini vlog* | 11•01•22
Просмотров 325Год назад
Hi! I'm Sarah! This is my multipurpose Service Dog Ollie! •follow Ollie, my multipurpose Service Dog @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y= •follow my spoonie/personal IG @chronically.sarahdayton chronically.sarahdayton?igshid=NjY2NjE5MzQ= •follow my TikTok: www.tiktok.com/@chronically.sarahdayton My linktree for everything else: linktr.ee/chronical...
Training Ollie “shark/orbit” Service Dog in Training
Просмотров 1352 года назад
Hi! I'm Sarah! This is my multipurpose Service Dog in Training Ollie! •follow Ollie, my multipurpose Service Dog in Training @Ollie.Service.Dog ollie.service.dog?igshid=YmMyMTA2M2Y= •follow my spoonie/personal IG @chronically.sarahdayton chronically.sarahdayton?igshid=NjY2NjE5MzQ= •follow my TikTok: www.tiktok.com/@chronically.sarahdayton My linktree for everything e...
The times I have been ✨medically gaslit✨ by doctors
Просмотров 4992 года назад
The times I have been ✨medically gaslit✨ by doctors
How I set up my feeds | GJ FEEDING TUBE SET UP | bedtime routine with a G-J feeding tube pt.2
Просмотров 1622 года назад
How I set up my feeds | GJ FEEDING TUBE SET UP | bedtime routine with a G-J feeding tube pt.2
How I set up my feeds | GJ FEEDING TUBE SET UP | bedtime routine with a G-J feeding tube pt.2
Просмотров 852 года назад
How I set up my feeds | GJ FEEDING TUBE SET UP | bedtime routine with a G-J feeding tube pt.2
Service Dog in Training. POTS alert training session (high heart rate alert)
Просмотров 1822 года назад
Service Dog in Training. POTS alert training session (high heart rate alert)
Ehlers Danlos Syndrome awareness. h-EDS -my story
Просмотров 3182 года назад
Ehlers Danlos Syndrome awareness. h-EDS -my story
POTS alert training session in Walmart with my Service Dog in training, Ollie! IG:@ollie.service.dog
Просмотров 7162 года назад
POTS alert training session in Walmart with my Service Dog in training, Ollie! IG:@ollie.service.dog
MY G-J feeding tube set up routine *in depth* gastroparesis and SBO
Просмотров 2242 года назад
MY G-J feeding tube set up routine *in depth* gastroparesis and SBO
Ehlers Danlos Syndrome awareness month: MY STORY diagnosis, co-morbidities and symptoms
Просмотров 882 года назад
Ehlers Danlos Syndrome awareness month: MY STORY diagnosis, co-morbidities and symptoms
cracking my knuckles- Ehlers Danlos Syndrome
Просмотров 2662 года назад
cracking my knuckles- Ehlers Danlos Syndrome
Service Dog GEAR TOUR 2022 | Etsy, Instragam, Amazon, and more *affordable* our necessities
Просмотров 9 тыс.2 года назад
Service Dog GEAR TOUR 2022 | Etsy, Instragam, Amazon, and more *affordable* our necessities
Bedtime routine with a GJ feeding tube (gastroparesis and small bowel obstruction)
Просмотров 3182 года назад
Bedtime routine with a GJ feeding tube (gastroparesis and small bowel obstruction)
Where did you get his vest/harness??? I love it!! ❤
@@Poodlewithapurpose thank you!! Unfortunately, his harness is made by a company that has closed. The all white leather one is from Bridgeport but Ollie has outgrown that one now. All of his gear is in my gear tour video with chapters and links, so if you are curious about anything else, it is in that video. It's my most viewed, so it should be easy to find. we are currently waiting on a new custom harness so hopefully all goes well with that. I will probably post a review if all goes well. Sorry I can't give any recommendations but thank you for the kind comment!💚
@@Chronically.sarahdayton thankyou so much for taking the time to help me out!! I appreciate it!
@@Poodlewithapurpose of course!!💚
My service Dog training‘s name is 🐾 Oliver 🐩 . We’re almost done and our training service/company says that we really have to find leashes harnesses that call out to us to our dog. They’ve mentioned a few, but we didn’t like them. 🐾 Oliver 🐩 is a standard poodle that weighs about 50 pounds, do you have any real suggestions on harnesses or companies that you would use. Just a sidenote today I was at the mall with 🐾 Oliver 🐩 and someone said service dogs and training aren’t real. You buy them and they’re already ready to go. I just kept walking. Another woman said I look snobby and I didn’t need a dog to help me.luckily my husband was with me because I started to cry and felt sad. I’m a type on diabetic and have a resting heart rate.
@@michellecolegrove I'm sorry that someone made you feel so awful. I wish I could say it got better but it doesn't. I have learned how to respond to people, if I do at all. A lot of it is misinformation or ignorance. Regarding the harnesses, it really depends on they type of work they do. Because Ollie does mobility, he has to wear a harness that is safe. Unfortunately, The company that made Ollie’s everyday harness I use now is no longer in business. I am actually waiting on a new one from Misty’s Dog Gear (on IG). I bought an x back this time (his current one is a Y front). If you don't need mobility, you may not need a harness. You could just get straight front vests for labeling reasons. Ollie’s cape is custom and it's from PatienceAndLove143 on Etsy and I love it. I also use the One Tigris vest as a cape with patches and I like that as well for days I don't need mobility or extra bulk (like the airport). I also use it around holidays (like Christmas)!because I have specific patches that I love to theme out but you could do it that way and have a few sets of patches to swap out bc it's a lot of fun and it makes it special. I have used Bridgeport harness before during his training, and I liked that a lot but I prefer biothane over leather. Idk if this is helpful. It truly depends on what you need. I have a full gear tour on my channel. It's linked in the description and it's the most viewed video on my channel so it should be easy to find. I hope that helps. 💚
I was training an older bully for a bit to be a service animal and we went to Walmart as our first outing very proud of her when there was a little dog in a cart and she didn’t react at all when it barked. (She was indeed a washout however)
They should be banned from Amazon!
@@Behind-the-ears_FF_ I couldn't agree more!
@@Chronically.sarahdaytonwonder if there is a way to report them
I love the name shark for this task! 🦈
I often find my self questioning if I'm disabled enough so that hit me hard because that's the kind of stuff I ask my self ❤
@@ILikedrawing13 It's something known as imposter syndrome. I've personally struggled with it as long as I've been “sick”. I know how hard it can be to struggle with that and the constant second guessing yourself. It's tricky. I still struggle with it now, even though I'm dependent on a feeding tube, and my port for infusions, take over 2 dozen medications, have a Service Dog, unable to live on my own, am in need of a liver transplant, etc. I hope that you learn from me and be more kind to yourself. And most of all, know that *you are valid*. 💚
@@Chronically.sarahdayton I'm sorry i didn't see this for so long but ty for taking the time to talk to me ❤
thats why i am training my own service dog. Making someone pay that much is INSANE
I love that some of the photos after are still what would be considered “normal” it really goes to show how people like us have our good and bad days, and aren’t always bedridden.
God bless you dear 🙏
@@1313fidel 💚💚💚
Happy disability pride month. If you have a few, could you make a communuty post with profile pictures for it?
Thank you! Sorry, I'm not sure I understand. 😅 What do you mean by profiles?
@@Chronically.sarahdayton profile pictures, sorry I'm not good with english.
@@colorfulphoenix23 no worries! I have dyslexia, so I'm not good at it either lol. Do you mean like the one with the pride flag in the profile picture? I just updated mine. I also just made a community post using that so you can let me know if that's what you mean. Is it that what you mean or do you mean sharing other people’s accounts? It’s hard to explain so I hope you understand what I’m trying to say 😅
lolol AI can't seem to know how to say A D A for Americans with Disabilities Act. Still, yeah, these things all mean nothing and I wish the gov't would shut these scam sites down somehow.
I am very happy someone has already spoken up about the fact that even though service animals are considered medical equipment they are still not covered under insurance. This is very detrimental to those who actually need it
@@jessicalingo4346 I completely agree. A lot of people don’t see it that way and tend to misinterpret my view of it. I’m glad someone else designated with this. 💚
@@Chronically.sarahdayton I commented on the fact that service animals are considered medical equipment in some areas but not in others on another post and I was so excited I wasn't the first to say that. I do hope that changes in the future. Unfortunately I can see it being a money trap since insurance companies are a beast with common required medications. So in some ways I'm happy they're not because of that reason but I still very much think the things i mentioned should still be available. I could also see fake sa owners trying to take advantage of this.
What?? They take away the disability income if you get married?? That's awful! What if the spouse is also disabled, or has a job that's not paying as well? Also that's so frikin RIDICULOUS that insurances won't cover the cost! They cover for other medical equipment, don't they? Is it just cuz it's a dog that it doesn't count as medical equipment in the insurances' eyes?? Uuugh! Honestly! I don't have a service dog, nor do I need one, but I will forever be an advocate for the disabled, and the amount of hoops you guys have to jump through is so unfair. I am really starting to hate America more and more. 😤🤬
People do this to my dog and sges not even a service dog !
Good boy ❤❤❤❤
Im disabled and broke. So i have an Amazon vest im saving for a cape tho :3
The vest doesn't make the dog, the training does. I used a cheap vest from Amazon during a lot of Ollie’s training. It's totally okay to use them! The problem is that people think that getting their pet dog (who doesn't have any training) a harness and “certificate” (they are fake and illegal) means their dog is a service dog and they think that they can take their pet everywhere. I hope that makes sense.
I hate when people fake a service dog a few months ago I went to a restaurant with my mom and There was a guy and he had a fake service dog. It was barking and pulling on the leash and just misbehaving.
Yeah, it's a huge problem, unfortunately. That behavior is unacceptable, even *if* it was a legitimate service dog (and if it was, that handler needed to leave and get their dog out of that environment and regain control. We all have our bad days and mistakes, but that was just not okay imo). People and their fake “service dogs” make the real Service Dog teams look bad and that's why we have such a bad rep (along with so many other huge issues like safety, access issues, Karens, etc.)
About to get a G tube…what is granulation tissue? Would tubie pads be helpful for leaking??? And do regular G tube buttons leak or just GJ
Hi! So, u have a full video about how I set up my feeds if you want to know more about that. Yes, G-J (gastro-jejunal) tubes leak the same as G (gastro) tubes. J tubes are just like g tubes but they have an extension into the small bowel (or jejunum). Granulation is kind of like scar tissue but it keeps getting irritated and the stomach acid leaking sends it in a vicious cycle. It’s super painful because it’s new tissue and it has a lot of nerve endings. When mine is bad, I clean my stoma like 6x a day (depending on how leaky my tube is). Tube pads can help, but when my tube is really leaky, I use gauze because it’s disposable. Plus some tube pads have stitching on the inside, and I got really bad granulation tissue from the friction. That’s why I will use gauze sometimes. I hope that helps!🤍
as some with POTS, MCAS, EDS, and many more, i’m so glad i came across this video. you are so right when you say their invisible, it’s almost like people don’t think they exist sometimes. i hope you are doing well 💕
I have all of that too! I also have dysautiomia, and a few other things, and I really appreciate everyone coming together to support one another!
@starlight_gaxcha7516 💚💚💚
A lot of service dog vids I’ve seen have some entitled Karen’s but I never generalize anything
Is it safe to drive with POTS? What if you have an episode while driving?
It depends on the person, their symptoms, what medications/treatments they are on to mitigate their symptoms, etc. Not everyone with POTS passes out. It's a choice they should make with their doctor’s recommendation. It's just like any other health issue. Personally, I do not drive, but that's for many reasons and POTS is only one of them. I'm grateful to have someone to help me and drive me where I need to go. But just because I don't drive doesn't mean everyone with POTS can't.
I am on my first one but I feel it coming
Lmao
This is totally the behavior of someone who “doesn't care” 💀
How did you train him to get to know that scent? Im training a service dog myself for my pots, everywhere i see says train them to recognise that scent but im not quite sure how to go about that
Hi! So, I used my sweat and swabs and froze them until I was ready to train. There are some great RUclips videos that go into depth about it. I have also now trained him to alert hypoglycemia using my saliva. It sounds gross, but that’s the best way I’ve found, or at least that’s what works best for Ollie and I. Thankfully, Ollie naturally picks up a lot of it so scent training was a bit easier once he knew how to alert (using paw or nose, and occasionally “jump” while we’re at home and I’m not paying attention to his alerts). Sorry I can’t give a detailed answer, but there are many videos that can explain it far better than I can. I hope that’s somewhat helpful 💚
@Chronically.sarahdayton thank you so much i appreciate it!!
Where did you get that vest! Its lovely!!!
Thank you! I have a video on my channel of Ollie’s gear tour. That video has chapters and links in the description to everything to make it easier for y’all. That video is linked in the description of this video too. I’ll link it here, but RUclips has taken the link function sometimes. I hope that helps! Link- ruclips.net/video/NeIBGKlK1PM/видео.htmlsi=_lGmo7pgWZP_a5VC
Slow down the video
Sorry! This was as slow as I could make it to fit everything in. I have a full video of setting up my feeding tube on my channel if you want to see it slowed down a bit more.
No one cares
Lol ikr. The 165 comments totally prove that. For real tho, if you don't care, just scroll. Click the “not interested” or “don't recommend the channel” if you feel so strongly about it. There is plenty of other content out there. Oh, and maybe don't leave hate comments on disabled people's channels. We have enough going on and we don't need your hate in addition. I might be able to laugh off the hate comments that sound like they're coming from an 8 year old, but some of us might not be in that place. Idk what's going on in your life, but hurting other people (especially people who are already suffering (liver failure +10 other diagnoses in my case)) just to make you feel superior isn't going to help. And it's really gross. Normally I don't respond to hate, but I can tell you're likely too young to know what you're doing. It's also so ironic your handle is “sunshine2502” 💀 Thanks for the laugh though.
@@Chronically.sarahdayton 😂 my "no one cares" isn't a" hate" comment. Unfortunately it's true. All these"service animal" channels are simply just a bunch of you guys with your cameras out. Simply just waiting for interactions like this. Let's be honest. Also I myself am disabled but would never behave like such a victim. It'll get you no where in this world. I apologize if you don't like facts.
@@sunshine2502 where did you see me filming an interaction? That's not what this video is. I've never posted one of those types of videos on my channel. Under the ADA, Service Dogs are considered “medical equipment”. I'm allowed to stand up for my rights if I'm being discriminated against. Just like someone would with their wheelchair or oxygen tank. I'm allowed to stand up for my rights. Also, this is an educational video. The audio isn't mine (as stated in the pinned comment and description, along with the link to the original). This is a waste of your energy, and frankly mine. There are plenty of other people that you can call out if you want to feel superior, but it won't be on my channel. Thankfully I have the “block” button if you decide to continue to be rude.
Also, why did you delete your previous comment? It was something like “the people you're trying to teach don't care..”. Idk if you noticed, but there are plenty of people who do care and who now have a better understanding of service dogs. You're 1 in over 23k…so…
You care enough to watch and comment this
Thank u very much for explaining this. I might get a service dog for social anxiety. I am trying my best to learn all abt service dogs and how to train them. Btw do u have any tips on how to train a service dog for social anxiety?
Hi, thank you for asking my opinion. So, I **personally** don't think that having a Service Dog for anxiety is the best option. I have anxiety as well, and sometimes with all the extra attention, comments, stares, public access issues (where I have to stand my ground and educate), the anticipation, etc. has caused anxiety attacks on its own. And that's not even commenting on training Ollie for PA. That caused a ton of anxiety and I often left the store in tears while he was in training. It was just a lot for me until he was fully trained. Now, having a service dog that works at home is absolutely an option, but they may play a similar role to emotional support animals (that do not have public access rights). Actually, Ollie works a lot more at home than in public (mainly because I rarely leave the house lol). The best advice I can give is that- I would recommend talking to your doctor about it. Psychiatric Service Dogs should only be recommended by your psychiatrist. There are so many other ways to treat anxiety/panic attacks/(anxiety in general)and improve your quality of life. Having a Service Dog may or may not be the best option, and only you and your doctor can decide that. I hope that's helpful. I wish you the best! 💚
@@Chronically.sarahdayton thank u so much! I still have to talk with my doctor about it. They said that maybe a service dog is best but they aren’t sure bc I rarely leave the house and other stuff.
@@Astrryxoxo I hope you find the best treatment that works for you! 💚
@@Chronically.sarahdayton thank you!
Dont you need to prime first the tube for removing air.?
Yes, you probably should and I normally did when I had a MICKEY button, but I ran out of syringes and I forgot to wash the ones I had. I mess up sometimes. It was so little air so it wasn't a huge concern of mine. I'd rather have a little air than bacteria from a used syringe.
Fake service dogs are huge issue, service dogs that don’t qualify as a service dog under the ADA even though their owner has a disability is just as big a problem. It doesn’t matter if you have a disability or not if your dog is not completely under your control at all times and well-trained. It is not a service dog. To be a service dog. It has to meet those two criteria along with performing a job to help manager disability. Fake service. Dogs are big problem but people who are trying to train their own service dogs and don’t have the ability or the knowledge to do those things are huge as well. Your dog is not a service dog if it is lunging at people and unable to walk through a public space Without constantly pulling. It clearly isn’t going to be doing the job very well either. So both are huge problems. Fake service dogs that are not service dogs and people with disabilities who have dogs that are not trained and not under their control control are not service dogs. They are a problem.
Sorry, I'm confused. Are you talking about fake SDs in general or me specifically? I can't tell if you agree with what is being said or not.
Why does Amazon allow it than?
Probably because they don't care...and they make a profit. Walmart did the same until about a year ago after the SD community spoke up about it. Amazon is probably too large to get it under control at this point. And plus, they make money off of it so they have no reason to put in the hours of work to get these off their platform. Most people don't care that it's illegal and negatively impacts legit Service Dog teams, and the SD community as a whole.
I worry about so many people using their pets stating they are therapy dogs. It makes it so hard on those who need their dogs. My little Pomeranian was the best service dog in the world. People would constantly talk to her and I had to say please don’t speak to her she is working or someone would say whst can she do she is such a small dog. Service dogs come on all sizes and shapes. Little dogs can pick up things you drop and often with disabilities you get the dropsies. Little dogs have great senses and can alert yiu to a seizure waiting to happen. Please if you see a dog wearing a vest respect thdt this dog is on duty and your good meaning attentions can cause harm to someone who depends on their dogs strick attention. Thanks for Sharing this. 😂😂❤
Yes fake service dog people need to stop
Facts!!!
Thank you for sharing! This is very eye opening. How often do you feed? You said it takes 19hours to finish the whole thing, do you finish the feed in one sitting? You have to stay still for 19hours?
Thank you for the thoughtful comment! 🤍 I feed every day unless I'm doing a “gut rest” for whatever reason. It is my only source of nutrition, so I do need to do this every day. I feed for 19 hours (it's more like 20.5-21 now) a day because that's how long it takes to get my full amount at the rate my pump is set to. That means I am “attached” to my feeding pump (I use a backpack rather than an IV pole when I'm home because my house has levels, so a backpack gives me a bit more freedom. Yes, I do it in one sitting. I start my feeds right before bed and it runs until the next afternoon/evening (depending on when I start it. Sometimes it's 10:00 pm, sometimes it's 2:00 am because of my insomnia). I get a couple hours off to shower or do anything I want or need to do without my tube. The pump has about a 24 hour battery, and I charge it at night or while I'm in bed. Because my pump has a battery, thankfully I don't have to have it plugged into the wall all of the time. Having a feeding tube definitely limits me a little bit, but I'm just thankful I have it as an option. I hope that answers your questions. Thank you for the kind and thoughtful comment! It means a lot to me!💚
Im almost sure i have pots not eds though but everyone thinks my symptoms are anxiety ive never passed out but i have all the symptoms i had a tilt table test today and it triggered my symptoms but the flare up i was having with the high heart rate when i would stand has stopped so im not having that issue at the moment so i didn't meet the diagnosis but i cant regulate my body temperature well my hands and feet get cold and sweat when im hot my face turn red im tired all the time i get headaches i have chronic stomach problems and my body is just weak and achy all the time i have pvc and pac's those extra heartbeats i think they are they put me on metoprolol to help with that and i cant fo much excersise when i get the flare ups of when my heart speeds up it happens when i stand and it will be like 80 when laying down and then 120 to 140 standing up until i lay down again i do have anxiety and it makes my symptoms worse for sure but a panic attack doesn't go away as soon as you lay down also its really common for people with Autism to have an autonomic disorder and i have Autism hopefully i find someone who will take all of my symptoms and look at it all together and not just the high heart rate
I had a little trouble reading your post because I'm dyslexic and there was no punctuation so I'm sorry if I missed something important. It's a me thing. I have panic and anxiety disorder (as well as C-PTSD and depression) as well, and sometimes symptoms like high HR can mimic POTS. There are times when it's hard to tell. I would recommend talking with your primary care doctor about it and see if you can get a referral to a neurologist (as POTS is an autonomic nervous system disease known as dysautonomia) and/or a cardiologist. They should help you to find doctors that are able to diagnose you and get you on treatment that works best for you. You should also look into seeing a GI specialist as well. Hopefully, they will send you down the right path to help you get the care you deserve. 💚
I don't think people realize that private businesses can choose who they allow in thier businesses and those of us with real service dogs need to do better when Interacting with minimum wage employees and carry your doctors prescription note for your service animal and be prepared to present it when asked to avoid conflict and to minimize abuse of the ADA rules
Yes, private businesses can absolutely choose to refuse service to anyone. However, refusing service to someone simply because the person has a service dog is *illegal* , as it is a form of *discrimination* . I don't think that it's fair to expect all SD handlers to provide proof of an illness/disability simply because they might run into issues with their SD’s public access. Rather than putting that burden on *sick and disabled* people, I think that everyone should be educated on basic ADA laws when they are hired. Trust me, I despise people who abuse the ADA laws when it comes to Service Dogs, but the handlers shouldn't be the ones to pay for it. Hopefully, there will be a better system for authenticating Service Dogs (like an ID or certificate) down the line, but this is all we have for now.
Omg I'm about to cry i get my G-tube changed every 3 months and you made me feel so safe😭
My doctor recommended getting mine replaced anywhere from every 3-12 months, depending on what's best for the patient and the type of tube I have (I have a different type of tube now because I had some issues with the MIC-KEY button). Covid really delayed my tube replacements but thankfully everything was okay.
Same I get mine changed every 3 months dang we all relate 🥹
Fake service animals don't only affect service animals, as a essa owner (check out #essa for more info) I shouldn't have to worry about my essa getting shredded into bits in a non pet friendly store or get lunged at. My essa has almost become a chew toy for a loud untrained dog, yes my essa is replaceable but I shouldn't have to replace it. Not only are they expensive for a stuffed animal but it would definitely affect me if I were to witnesses one of my most prized possessions get destroyed by something that shouldn't even be there.
Isn't the gauze spose to go over the button, not under? My mom was putting it under like that and it lead to infection.
It depends on what your doctor recommends. I have to wear gauze under or I get severe granulation tissue. I no longer have a MIC KEY button but I still wear one layer of gauze and gauze over top to catch anything else that might leak. I'm not sure how wearing gauze under would cause infection if you're changing it at least every 12 hours as recommended. Where was the infection? On the skin? The stoma? I'm confused.
I plead the fifth 😂
Why can't I have a feeding tube too? I want to suffer more...😔
I'm sorry you're suffering. Can I ask why you would need a feeding tube? If you really feel like you need one, please talk to your doctor if you feel it will mitigate your symptoms.
I hope you’re still doing okay.
What’s bad is I have a blue pit that recognizes when I’m about to have a seizure and also when my ankles and feet swell up too much. But I can’t get him registered as an ada dog because Tennessee hates pit bulls. So what do I do?
I've done videos on this before, but there's no such thing as a registry/certification for Service Dogs. All of those registrations, certifications, and IDs are fake and scams. They are actually illegal. If you need a Service Dog, you need to talk to your doctor and come to an agreement that a Service Dog would be beneficial and mitigate your disability. From there, you need to be sure your dog meets the requirements to be a Service Dog. I'll comment with the section of the ADA website below along with the videos I've done, but they are easy to find on my channel if you want to do it that way. I hope that helps.
Videos on ADA laws and website ruclips.net/user/shortsi2MM1Kn84-A?si=nnSsv0UAONusqC2Y ruclips.net/user/shortsMeKxMSq16io?si=gxmR-MmjKppw8lgA
Thank you for sharing this I thought about all the things you said ❤