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Was the nerve block painful to get?

What helpful advice and items! Thank you ❤ I’m in a similar situation, but I am an ice person 😊

Hya, thankyou so much for doing this video, i had this surgery done 5 weeks ago, i started mobilisation excersizes 2 weeks ago, im getting absolutely no where with supination its starting to worry me, did u find this?x

I watched this prior to getting my heart ablation done in 2023, surprisingly I wasn’t in much pain from the insertion site as much as I was from abdominal pain.

I would love to see this series have more episodes! As a person who also frequently uses a walker this was actually fun and informative! Maybe you could do it in public places if you travel?

Hey, what does gastroparesis feel like exactly? Do you get a pressure feeling in your stomach after eating, like everythings being pushed back up from the stomach area?

Kudos to running your fluids in the ER parking lot to avoid driving during an episode. May not have worked out in the end, but it was a very clever solution.

Okay. So would it hurt to do some veggie strips at the same time? Throw in some frozen zucchini slices. Tofu is a LOT of estrogen so it may fuck with your ovaries. You can make your own chili with kidney beans. This is roughage. Add tofu. Crunchy. Also, it's Kai = Sky 🌈 ⛈️⛅🌩️

Yes, you did technically die. By this time you probably have some benzos. If not; get some.

Omg your voice in the beginning of this video is like velvet - so much texture! You are very funny 😄 and mature for your age.

I was and am a crunchy hippy mom. This means that I leave the skin in my vegetables. Velveta is gross, it's not even cheese - it's cheese food. Good thing? It will fill the holes in your teeth and can re-calcify little cavities so they don't have to be filled.

I am commenting to help you get better ratios so more ppl see you. By EDS; you probably mean Ehlers-Danlos syndrome. I wish that you would do an intro like a running theme that gives us your basic details. 😘

Oh yeah. I took ASL in the 70s. I am a sex worker and had a lot of disabled clients. Mostly I have used it in bars in HI, and San Diego. In Mexico. I am not a big drinker, but it helped me get my weed.🚬 😜

Preface is pronounced preh’ face. I am old and my body was riddled with Cancer. I had never had a surgery before but I have had a lot of life experiences. I will likely do a channel with my daughter.

Has it helped you ?

Hey hope your doing better. My wife has a appointment for her cardiac ablation tomarow. Did it help you ? Have you had high heart rates after ?

Do you believe it was a responsible thing to be driving. In doing so you not only put yourself at risk but everyone on the road

You know its bad when you’re brought into a trauma room

FYI, applying pressure to the neck arteries is called carotid sinus massage, holding your breath and pushing is called Valsalva maneuver

You are so strong ! Most people could not make it through 3 days of testing so far away from home and on their own. I'm also trying to get tested for MALS. Looking forward to the next video

Heya, thought I'd might try giving advice for making the bowels move faster if it helps you any. What I normally do is form a morning routine because that's the best time for it to work, right after sleeping. Taking a laxido to assist the bowels, (powder form because the syrups can hurt the stomach lining) in the morning with breakfast right after and try not to pressure the gut by going anywhere, drinking cold or hot drinks while standing up can help, and being careful because some medications make constipation worse. Having magnesium citrate a few hours before bed can help speed up the digestion too. Hope there was some reasonable advice there, try consulting your doctors before taking laxido and magnesium citrate to know if it'll be good for you.

I have so much respect for you. I've been dealing with mysterious stomach issues for the past 2 years, multiple tests, dr's appointments, procedures, etc. Functional dr says SIBO, gastro said dyspepsia. I was reading about how ginger and artichoke significantly promotes gastric emptying. Have you tried this supplement? I tried this last year but stopped, but started again yesterday. Wondering if my problem is SIBO due to MMC issues. My gastro doesn't seem to take me seriously, wonder if I should just make an appointment at Mayo since I live in Jacksonville and they are suppsed to be the best. I truly hope you can get some answers.

I’m so sorry the doctors are unhelpful and not compassionate! I wonder if any famous people are going through this who could bring attention to the cause.

Thanks for sharing. The whole medical ordeal and gaslighting is just traumatising. Hopefully you get some answers at Mayo ... just keep going !

Had the wpw syndrome... Had nerves in my heart burned aswel

I really appreciate these tips

I just saw your original surgery video. I went through my last hardware removal in early March this year. Glad to see everything is going alright. I wish you all the best!

I’m 22 and I’ve been through two ulnar osteotomies (on both wrist and 4 surgeries total including plate removal) The initial surgeries were the worst, but the plate removal and recovery was nothing compared. I wish you all the best and I hope your arm is doing better. It’s definitely not easy to go through. ❤❤❤

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!