Hi, I had mine done & got metallosis twice after changing the hardware!! 🙏🙏🙏 prayers for you that you don’t have any complications..

Girl, I’m so sorry. I feel ya on the gi docs and testing and frustration and confusion and years of getting nowhere! I’m in Florida and it’s been years of a never ending nightmare. I’ve given up so many times. Waited months to either have doors shut in my face and told me go away, or they have to respect all over again. Nobody listens, looks at my old test and results. I feel I’m my own doctor at this point. I’ve been to eight and still no better and not getting help. I totally GET IT! You’re not alone. We have one another for support cause we sure are t getting it from our GI! It’s so scary sometimes!

Can we talk?

Would you be able to chat about this surgery? I have some questions.

Hi my name is Lilee. Im sick too. I have a dog named Betty. I use too many emojis 🤓 Im glad I saw your video. I agree with everything you said. Sometimes you need to have stuff with you. Or gadgets to make life easier. I spend most of my time in my living room so i try to make it aesthetically appealing. And yes just because you're sick doesn't mean you can't be cute too. 😁 And I like nightgowns but I don't have things I have to navigate around.

It sucks.

late to the party - but i was having a particularly bad pain day so i binge-watched about a million chronic illness / pain management videos on youtube and yours was by FAR the most thorough thank you so much !! there were even some things I had never even heard of like a heated brace or motion sickness patches !! thank you again ❤❤❤

I am doing this operation in a few weeks. I love to crochet and was sad I can’t do it again but you gave me hope thank you!

Great video, can I please ask, how are you now

Thanks for sharing, very interesting that the variation you have isn’t yet well known but is affecting the COLA1 gene. It’s the one gene associated with three types of EDS so it’s definitely intriguing and very interesting to hear about. I have no idea how it’s differentiated other than the location on the gene which shows variation perhaps..🤔 I’m sorry it’s probably been a long process, and now You do know something is showing that you are experiencing what You know has been going on. I think the hardest part is knowing something is wrong but being told our symptoms don’t match our test results and we have to get the genetic test in the first place to get answers by then we are exhausted, financially depleted and perhaps even missing therapy because of not having the correct diagnosis. I’m suspecting vEDS too, so I kinda hope that my results somewhat reflect Yours. Although I found peer reviewed papers on varicose veins and Collagen 1 &3 synthesis dysregulation, also myxomatous mitral valve and I have both, the visible veins and unfortunately the gastrointestinal issues too 😑etc (pots MCAS) I really hope that the EDS world advances in the knowledge available to help You and the community get the best care possible Told I will most likely get my results back by October, praying it’s even faster, and Finland is apparently great at genetics ❤

9:15 moist it and garb the bandages❤

Hey! I got this surgery 6 weeks ago today. How many weeks/months post op were you when you made this video? You mentioned 85% healed

Cool honey

People who have never had a seated shower don’t know what they’re missing out on!

I just watched this and I can totally relate! I went to Mayo Jax for three years. Its a three hour drive. They treated me the same way. I left feeling lost and unheard. I got no real answers or advice on what to do with the info I got from them. I just quit them and am quite upset! After three years i still struggle with no advice on how to do what they told me I ought to do. About to start over from scratch. I am complex like you. Its like...how do I do all that if I am unable to...duh! I felt exactly what you were saying. Not sure what to do next. Its just so upsetting! Hope all is well. I am a new subscriber.

Thanks for the VLOG. Due to have my ablation in Slovakia Apr 24 (2024). Quite comprehensive. Never seen an ablation video before which showed the bruising from the catheter insertion area - useful to see what others only talked about.

Glad you got this figured out. You ought to take that anger, well deserved anger, and get back to every place that failed you, and tell them. Let someone in charge really know how you feel and that they are WRONG and put you in danger! It may save someone else!

i just went through a similar experience and just figured out i have Colitis. My symptoms started n November. I'm glad u r ok

I got sick after an incident happened to me in February 2022 and then was in hospital with everything inside me organ wise freaking out by end of March and still struggling 2 years and 2 months on. I hear you about time lost.

When you say they gave you anesthesia do you mean simply local anesthesia or did they actually give you something through your IV?

I have had the shaking experience like I’m having a seizure, buts it’s not. Can you share about your experience with this?

Terrifying. I’m so sorry!

I hope you are well. From what I have been reading, there is a fairly recent development in treating the arrhythmia symptoms. Diltiazem has been shown to be just as effective without the horrific side effects. As for myself, I would never submit to.adenosine unless I received something like propofol first…. I had several episodes of super ventricular tachycardia back in the mid to late 70s. I have been wondering why they never tried to give me that back then so I just looked it up. It seems it really came somewhere around 1978, so I guess that was one of the very few lotteries that I won my life. That wasn’t in yet that often.

Hyper mobile eds life expectancy

I have a heart problem

I have an ICD in my heart

Wow, that was very compassionate of them to give you anti-anxiety medicine AFTER giving you that drug while THEY all knew what you were going to go through. Thanks to watching videos like these. I would definitely demand propofol before I would let them give me that. Hope you’re doing well…… also very considerate of them to neglect informing you what you would feel before injecting. SOB’s

this was great - thanks!

You are AMAZING! ❤

Great video as always. Its nice to learn about your life and how you've adjusted to it with a port. Your experiences are (as always) informative and inspiring. Cant wait to see more!

Thankful that you made this video! I have to get this surgery soon and am nervous 😂

How long did it take to get you vascular appointment? How long did it take for them to call? Or did they just call and schedule you?

yes

This was a great video. Thanks ❤️

I am diagnosed with eds, do u have any advice with joint pain specifically? I find it the worst half the time

I love this video so much thank you for all the suggestions :,) I’m newly diagnosed with a chronic illness and am having a hard time adjusting to the constant lethargy and pain. This was exactly what I was looking for and I’m thankful to have come across this 💙 much love

Haha I love this! Omg we are almost identical I love how many similarities we have besides the EDS and absolutely LOVING DISNEY and cows lol! I guess it looks like I’m buying myself a walker soon! :)

Hi Luigi!

The weirdest thing is when you don’t go back to school in the fall for the first time.

Hello how your doing?

Thanks for sharing your experience love ❤️

Hope you’re healing better after surgery know how surgeries are I’ve broken plenty of bones in my life where I as younger ( 44 yrs. old now)

You're so young to have to be going through all this.. I'm older, Gastroparesis, pots And many more issues that I have.. But i'm a lot older than you.. I certainly hope that as you age, you get better. And stronger.. You certainly have a really good vibe and attitude.. One day at a time.❤❤❤❤

There's no way I could have the fat in both those eggs. I have to eat just the white part of the egg. As far as the rice goes, that sounds like a great idea with the eggs but I would have to do just egg, white, and rice. I'm not able to digest fat well at all and I get very, very sick, very quick When eating fat. No broccoli for me ever. And that serving is way bigger than I would ever be able to eat. The max I can eat is about two thirds of a cup..

I love your glasses! 😍 Thanks for the video

Posterior heart

Holy crap! That's crazy! I thank my lucky stars I don't have any heart conditions of any kind. I do have an allergy to amoxicillin (which was diagnosed in 2020 prior to the COVID lockdown) when my doctor prescribed it for a sinus infection. Then again, I have also taken a BLS course (aka CPR/AED training) back in 2013. Best to be prepped for an emergency! That "posterior" electrode I noticed is an AED electrode in case you went into cardiac arrest and they have to resuscitate you (much like what I was trained to use in 2013). I recall how my sister had a heart murmur when she was 14, but she's long gotten over it. I often document the things I go through with my ASD (I am autistic).

Hi I am in need of this surgery and I am wondering if after three weeks if I would be alright to return to my (college) school work! i see you can move fingers and such and need advice! just like typing and using a mouse. I’d like to do it over my thanksgiving/christmas break but unsure

Hi is it ok if we can talk

I had a blue foam pillow like that. I called it The Lego.