chronic illness tune up vlog gone wrong, seizure sent me to ICU, new central line & gj tube!
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- Опубліковано 10 вер 2024
- Today's video is a #chronicillness tune up vlog gone wrong because of a seizure that I had during my picc line replacement which sent me to the ICU! Hangout with me during a hospital stay replacing my picc line and g-j tube. Get an inside look into what my day to day looks like with invisible disabilities (Ehlers Danlos, Gastroparesis, POTS, epilepsy). I hope you enjoy this video and/or that it helps you feel less alone! Sending all the love and spoons! #disabilityawareness #spoonie
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Music: Provided by UA-cam and iMovie Library
FAQ:
How old am I: 24
Where did I go to college: Towson University Alumni 2021
What I used to film- Nikon D5500 / Vlog- Sony a5000 / iPhone 13
What I used to edit- iMovie
Voiceovers- Ice Blue Snowball Microphone
It breaks my heart to see you have to go through all of that. Shame on that nurse for treating you that way, you know your body better than anyone else and instead of yelling he should have taken your concerns into account and make sure you got your seizure meds. I just can't believe medical staff can be so rude and mean towards patients its truly heartbreaking. I hope you are doing well sending all the love and spoons❤
Thank you so much for the love and support! Sending you all the love and spoons 🫶🥄❤️🩹⚕️I hope you get some relief from your flare up soon!
@@ChronicallyLindsay thank you!
Sadly that’s hospitals for you! Especially in my area they are absolutely 💯 horrible towards the patients in certain areas, however the heart ❤️ tower is the only place where they are nice and they treat patients with kindness and compassion as well as respect.
being in the ICU sucks, especially not being able to even go out the room (that’s how it was for me) because i had to be hooked up to all the stuff. hospitals suck but at the same time im so glad for them and doctors
Ikr! It’s a combination of being thankful for the care and people who really help and make a difference and the difficulty that comes with being stuck in the hospital/ICU, was so nice getting the fresh air at the end! 🫶🥄💕
I really appreciate you including the mentally difficulty part of it. In my most recent procedure (my g to gj also!) I reacted to the antibiotics and I have never dealt with medical trauma in the same way. I'm still figuring out how to maneuver it. Thank you!
I’m glad it was helpful! It’s always hard to be so open but it reminds me I’m not alone! Sending you all the love and spoons, medical trauma SUCKS 🫶🥄❤️🩹thank you for watching!
12:30 idk why but this feels like peak chronic illness girlhood. like yes im in the hospital and yes, i will look fabulous 💅💅
19:09 girl how do you look so pretty even with post eeg hair??
i know a lot of people already commented this but i really appreciate you showing the emotional journey as well as the physical journey. sometimes i feel like, compared to others, im doing a terrible job of coping with my health problems and that i need to just be thankful im alive. your videos in general but specifically this one remind me im not alone. words cannot describe how thankful i am for your channel. sending love and spoons ❤🥄❤🥄
It’s called pretending to be sick. She isn’t sick she’s what you call munchausens by internet which is a mental disorder
She doesn’t need spoons 🥄 she needs therapy
This video is i think my favourite of yours yet, its incredibly raw and relatable, Im so glad you allowed us to share your vulnerability and it makes me feel so much less alone, I'm incredibly sorry for everything that went on in here especially the medical trauma and the nurse, life just sucks for us sometimes, but im happy you made the most of it and felt fabulous ❤️
ps the eyebrow lash combo is a literal stunner
love and spoons❤️❤️🥄🥄
I love your channel so much and watching it just makes me feel so much more comfortable and not alone. I’ve had epilepsy for three years and just hit my one year seizure free yesterday. I know how it feels to abruptly be in a situation in the hospital you don’t wanna be in and be treated unkindly by doctors it’s terrible and I’m sorry you had to go through that. Sending ❤ and 🥄
One year seizure free is huge ahh im so happy for you!!! 👏🏼👏🏼💜💜 I’m so glad you are enjoying my content & feel comfy here, means the world to me!! Sending you all the love and spoons!! 🥄💜🫶
Chronically fabulous!
Thank you for being vulnerable and real on your channel. Showing both the good and the hard. It truly is helpful in the chronic illness community, to not feel alone!
Chronically Fabulous ♥️. I am so sorry that you had to go through all that. It was so lovely to see how supportive your fiance and Mum where and that you where able to have your gorgeous service dog with you all the time and your fiance was able to stay overnight with you. I can't believe the behaviour of that nurse. I hope he was reported. Sadly I have had several horrendous interactions with nurses over the years so I absolutely believe anyone who says that nurses have said horrible stuff to them beacuse it's happened to me. I hope that your doing better now and your new lines are working better for you. I really appreciate your bravery and courage in sharing your experiences with us. 🙂💖💖
I don't know it's just a spoonie thing but I also do my nails and wash my hair and self care before going to the hospital. I literally look better than I normally do when I go to the hospital lol. I hope you feel better soon. It hurts my heart to see you struggle. Love you so much. Sending healing and healthy vibes and all the spoons!
OMG I have had so many concussions in my life but two new ones this year and that's when a ton of everything, all my EDS symptoms got worse before getting diagnosed! I have been in and out of the hospital 6+ times with 8 or more scans just in this past year. And the most pain I literally have ever been in, with no meds working/me not responding well to anything. Thank you for sharing, as always I relate so much and am so so so glad we can fight together and be there here for each other!!! Much love and so much strength. I have been so worried about you and hoping you were okay!
Oh Lindsay. I am so, so sorry you had to go through all of that. I can't even imagine. I suffer from chronic pain so I know what you are feeling. My heart hurts to hear about how that nurse treated you. That's not how medical staff are supposed to behave. They should be there to help you. Good for you though with advocating for yourself. You're so strong. And it is so awesome to have your mom and Autumn in your corner and on your side during all of this.
Hey Lindsay! ❤❤ Just wishing to stop by and tell you, I really (sadly) relate with you, and oh I so wish you wouldnt experience the things you do! It sucks, bad..
I have a GJ tube too, gastroparesis here as well. I can maybe give a few tips? Idk if they will be welcomed or not, but it comes from a good place! With frequent vomiting you can expect it to "flip". The jejunal part comes back in the stomach from vomiting. You can test that by injecting blue colored liquids in the J and drawing back the G! if it comes out blue, its flipped.
I would also ask your doctors about aproval of maybe being able to crush your meds and push them down your J! they act so much better and faster this way! definitly ask before tho!! And confirm with a pharmacist. But being able to take my meds this way is what saves me from so many hospital visits.
Hii! Thank you so much for the tips, I appreciate it so much! I'm still learning the lay of the land with the gj tube and trying to learn the ins and outs, so thank you! All the love and spoons from a fellow gp warrior!
@ChronicallyLindsay Another GJ veteran popping in also offering to give tips any time if they're welcome!
If you're not 24/7 on your feeds, you can use the "off" time to supplement hydration (in addition to your fluids). Double-check this with your dietitian first if you have one, but mine recommended doing 3 parts plain water to 1 part cold-pressed apple juice through the J tube as an alternate to pedialyte for balancing electrolytes and sugars during the day (since I do my feeds overnight).
Wow..that was tough to watch. So sorry you had to go through all that. I know what it's like to depend on others for help during these episodes. It's good you were able to advocate for yourself n you didn't deserve to be yelled at. Lindsay it's true, you are "Chronically Fabulous! "❤
Chronically fabulous! I love you girl! You’re stronger than you know. Sending hugs❤.
Lindsay I'm so sorry you had to go through that I'm having an upper endoscopy June 1st and I'm scared the Austin's going to be here for me he's going to hold me in his arms and reassure me that it's going to be okay. He knows I'm scared. So I hope you have any advice about calming my nerves that would be greatly appreciated cuz your channel is like my safe place. I love your service dog I saw him trying to help you during your seizure and I hope you give him extra pads cuz he is like really awesome and I love your eyelashes they made you look really pretty sending spoons feel better soon❤❤❤❤
So sorry you went through that. Sending spoons! 🥄 ❤
Sending you all the love and spoons as well! ❤️🥄🫶 thank you for watching!
You are absolutely chronically fabulous! Sorry it was such a hard experience. Sending love and spoons.
Also, in case its helpful for editing in the future - sonetimes the text on the screen was too quick for me hit pause and read it before it disappeared, it would be great if it stayed on screen just a tad longer :) x
Sending all the love and spoons to you as well! Thank you for watching!! That is definitely helpful I will try to make the text last longer in the future, thank you for letting me know I appreciate it!! 🫶🥄💕
Girl, trust ME, I know how it feels to be invalidated by a medical “professional” when asking for the MOST BASIC of things from them. I once went to the ER (side note - this was before I realized I’d have to be unconscious or close to it to be taken to the ER, before so much medical trauma pretty much), my bp was running 93/46 at home and I felt like I was going to faint, which was not a chronic and typical thing for me at that point, and when I got to the ER,, they did get me in quickly BUT then the doctor said to me: “I have sicker patients.” And he also ran two drug screens on me without my permission..Sorry, I tend to ramble a lot but all of this is just to say, you aren’t alone in all of the struggles that come with being chronically ill. 💕
7:14 idk of your a musical theatre person but the first names that came to my mind were either Glinda from wicked or Elle from legally blond, both girls who push themselves to do great things while keeping the femininity and looking after themselves! Hope this helps!!
I LOVE ELLE!!! Omg yess thank you! & yes haha I was a theater and musical theatre girly in high school and I LOVED it! 💝
Your welcome!! I'm glad you like it!! I hope you have an amazing day with many Spoons!
Sweet sweet girl. I’m so sorry you had to go through that. Heart breaking to see, but ty for keeping it real. It helps us relate and know we are not alone. I am SO proud of you for advocating! I was cheering for you! I was being my NJ tube and had an awful nasty nurse who let my feeds run out after day two. I had to stay three days for refeeding syndrome. I fought and yelled and she never brought my feeds. New shift came on and freaked out. I had to start my three days all over again. Had to advocate to keep her out of my room. I’m still traumatized by it. Girl, we got this! Just fill out backpack with all the spoons!
Every time I comment the same thing😅 Cuz it's so true. Your family is so awesome! You, your fiance, your mom, Sebastian and Luna❤❤❤❤❤
Lindsay,
You are an amazing human!
Never think different of yourself and remember that!
Thank you for everything you do!
Have a great evening and sending spoons!
:) :) :)
P.S.: medical trauma is so real!
P.S.: This was an amazing video (like all the others)
P.S.: I would love to put my usual zebra, hearts and spoon emojis but if I do, I can’t post comments, so imagine they are there :)
P.S.: Thank you for the trigger warnings once again :)
When's the I'm so sorry that you have to go through that. I have an upper endoscopy coming up June 1st and I was wondering if you had any advice to help me deal with that. My boyfriend Austin is going to be coming up in time for that so he said he was going to help me in his arms and reassure me that it was going to be okay cuz he knows I'm scared. I love you and I always come back to your channel cuz it's a safe place for me sending spoons. I don't know if I could deal with the procedure without Austin he is everything to me. Give my love to Autumn and Simon your service dog and Luna your cat. 💚💚💚💚🦴🦴🦴
Chronically fabulous ❤❤❤
Thank you advocating for yourself I took alot from this video. I too have severe hospital medical trauma I've just had surgery #9 for a congenital bone disorder I really am inspired by your videos
I am so sorry you have to go through thatso scary. You are so strong amd i am proud of you. Hugs
I have medical PTSD and we need to call out the hospitals and healthcare providers who help us but also that hurt us. We need to hold them accountable. There needs to be a website we can anonymously tell our story, list the hospital, and name the provider.
You are totally chronically fabulous! Especially in your crown! Queens unite 💗👸🏼👑
Rose would be a great name for your Rollator walker, especially since it’s pink.
I was in the hospital with a rough admission at the same time (we need to stop making a habit of that...) also had to get a line replacement (have a hickman as well) and it was the admission the finally got the ball rolling for doctors to realizes how badly I actually need a G/GJ tube placed. Still waiting to get one but hopefully the pieces are getting put into place now for it
chronically fabulous and we have a lot in common ur my favorite chronic illness youtuber, i have heds,pots, syncope convulsions and just got diagnosed with epilepsy a month ago I also believe it was triggered by a concussion I had a year ago, im now on kepra, idk bout u but i feel like iv kepra works better then the pill form
Me and my sister both have epilepsy and keepers didn’t work for either of us. Starting to think my seizures are med resistant lol what brand of eye lashes do u use? Also chronically fabulous lol
I use Kiss imPRESS on falsies, in curly or voluminous! I’m obsessed w them! Sending all the love and spoons 🥄 it’s so frustrating being med resistant and dealing w seizures in the first place 🤦🏼♀️💜🧠🫶
If nobody has told you in the last 2mnths and you can get them in the US you can get something called an independence dressing thats kinda for dialysis patients that can cover a dressing in your chest more easily than many methods
i waited until today to watch so it could be a birthday present for myself :) and sorry in advance that this comment is basically an essay, i'm good at rambling and bad at condensing my rambles lmao
your eyelashes do look gorgeous! and even with EEG hair you look pretty! also that's so exciting that you're writing a book!! i will definitely read it :) writing is one of my favorite hobbies (mostly fiction and occasionally fanfiction too!) but my brain fog has been AWFUL lately so i haven't written much of anything in months.
i'm so sorry that you had to go through another ICU admission so soon :( it must be terrifying to go back for a basic procedure and wake up in the ICU! i know that disabled people like us don't have a choice in being resilient, we just have to be, but i'm still impressed that you deal with medical complications over and over and STILL want to vlog and share your journey! like it's hard enough to just deal with these things, i would not be able to handle the added vulnerability of sharing it with 24.3k people online.
i have a major surgery coming up this summer. I've thought about vlogging the experience since i've never seen a disabled person sharing about having this surgery and the recovery and such, but i'm really scared that something will go wrong with the surgery or recovery bc of my disabilities and then i wouldn't want to post the vlog yknow?
hopefully the hickman works well for you!! when i had a central line, i preferred having a hickman vs a PICC because it was in an easier location. the only issue for me was that it caused A LOT of pain, the doctor said it might've been pressing on a nerve or something? idk for sure what happened, apparently that is very unusual so i don't think that will happen to you hopefully! :) also hopefully the GJ tube works well for you too!! i've never had a feeding tube of any kind, but it looks like the GJ tube is basically one tube inside of another slightly larger tube? that's so interesting!
oh and while i'm here in the comments... i was wondering, do you have any tips for getting used to walking with the rollator and your service dog? i really benefit from using a rollator on busy days, but my SD is having a difficult time staying in a heel next to it. i also use a hands-free leash like the one you have, but when i'm trying to walk with her and use the rollator, i have to hold on to the leash so she won't pull away from me. it's really frustrating and difficult to manage, even though i've dedicated time to practicing, so I've just kinda stopped using the rollator even on days when i need it :/
im so sorry about the male nurse... that is awful. Especially because you need your anti seizure medication literally for him to yell at you about it is awful... It makes me sad how callous people can be :/
I loved the quote “Shoutout to kiss lashes, they are seizures proof, faint proof” I found it funny yet a necessary addition to the shoutout :) Sending love and spoons 🥄🥄🥄💕💞💕
Chronically fabulous!
Chronically Fabulous ❤
Ily yess! ❤️🫶🥄
Actually the nurse is right Lindsey you should write a book😊
chronically fabulous.
Name suggestions: Boo/Boo thang(BT for short sounds like Beauty), Catniss, Ella, Stacy, Felicity, Athena, or maybe Patricia(but in all caps(because it reminds me of that funny vine)I hope that might make you laugh a bit!))) Love you Lindsay!! Sending spoons!! 😍😘🥰😇🤟💖
I hope this not inappropriate to ask, but I’ve recently been diagnosed with hEDS and suddenly having every problem possible. I am in Maryland and had horrible experiences at the ER over the past two months. Is there an ER in this area that’s better than the rest? I may have to stay inpatient for gastric motility issues and I’m terrified I’ll end up somewhere with doctors who don’t know anything about EDS. I also have a histamine intolerance or possibly MCAS. I’m pretty familiar with navigating the healthcare system but not on the inpatient/emergency side of things. If anyone has advice, please let me know!
Chronically fabulous I love you Lindsey
chronically fabulous ✨
So sorry honey
Tell us the nurses name! List the hospital! We need to not let them get away with it.
Chronically Fabulous💕!
I certainly hope you filed a complaint against that nurse!
Can you show how you drain your GJ tube. You don’t have to film it. It can be educational purposes
I actually just filmed video footage for a video about my gj tube and how I take care of it; from feeds to draining! Working on editing it together in an educational way, coming soon!
@@ChronicallyLindsay gotcha
Did you have your eye mask for the light sensitivity?
Yess!! An essential! 💝
Are you doing OK now?
Home safe, doing much better now!
@@ChronicallyLindsay I always worry about you whenever I see these vlogs I'm glad you're okay
@@caseyslifewithcp3727 You are so kind, thank you for your love and support, I really appreciate it! I hope you’re doing okay, sending you all my love & spoons! 🥄
Again bob haircut vlog.pls ❤❤
Chronically fabulous ❤❤❤