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Are the 10 bags supposed to last you an entire month? Do you use your tube daily for feeds?

Glad your getting proper health care 😊

Also do you have a website for sets for tubie friend here

Im happy your scheduled for surgery for your endometriosis i had mine along with total hysterectomy surgery in August of this year i also have chronic illnesses as well so bless you girly prayers you have a great birthday 🎂 🥳 mine is in November 10th

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Your dog is so sweet!!!!!

I clicked because of the dog ❤

Hello Nikki how are you doing tonight I like your videos so far I don’t have a feeding tube but I enjoy watching you I have cerebral palsy and few other health issues

I love this. Good job

Everything about you and your channel is so cozy 🍂 I did two holters and an echo many one minute ECGs you know.. I have Tachycardia so bad but still under investigation, I don't know if I have it bcz I read the criteria but I don't know.. 2:30 booooi yes yes all of this esp showers sigh My cardiologist appointment is near my numbers range on my oximeter rates from 100 to 250 BPM I don't know Hope you're doing well Nikki❤

I’m so happy you are responding to treatments!! I’m going to get an Apple Watch again for Christmas and might get that app because I have Mcas and it gives me pots symptoms even though my tilt test was negative a few years ago. I still go up to 140 just applying my make up and it jumps up and down due to the dysautonomia. It was so much worse when it started . I would wake up with a pounding chest and heart rate of 180 and it would cause dizziness and nausea and fatigue. It calmed down over time as I treated my dysautonomia but still enough to really throw me off. Thank you for the recommendation!

you are so beautiful 🎉❤

Where did you get the bedroom shoes

Hello I am new to your channel 😀

I stayed in the hospital for 2 weeks

I had PEG GJ TUBE the beings of the year and then I just got my AMT low profile TUBE button with extensions for j and g mine works well but it was very traumatizing lots of complications due to other chronic illnesses it was horrible but I'm out of the woods now yay I'm happy you have everything now

I had my PEG placed on April 9 and switched to a low profile Mic-Key on August 21. I also have a Kangaroo Flush/Feed and only found 1 backpack big enough for both 1000 mL bags and the pump but I have the older style pump. On Etsy, some people will modify backpacks, but again it’s hard to find one that fits the flush/feed system. I wish I could run mine more of the day, but I am not permitted to run my feed at work, so I run it for 12 hours overnight. I am on the wait list for a neuro gastrointestinal and motility clinic who can hopefully help tweak my feed but I’m definitely more nourished than I have been in years. I wish you the best of luck!

Hi! I wanted to tell you that your audio is quite quiet but the music is normal volume! :) A great vlog and so interesting to see the process of healing etc

I haveSomething to say Kenna K make tubie botton

Humm 5:49 so how fast do they tell you?

I'm getting this soon.. also endoscopy and gastropy, swallow study and orher tests.. It's a lot 😢 but I hope I'll find answers soon

Hi! I stumbled to your RUclips by accident so I apologize for asking questions you may have already answered :D Did you have a nasal tube before this? And what is the IVIG for? Have a great day!

My gas pains from gj tube surgery were in my shoulder blade and up my neck it was so painful!

I’m only half way through the video but my gastroparesis and mast cell activation syndrome and my dysautonomia all together cause a combination of symptoms that are similar to yours and these are linked to Ed’s and endometriosis. I don’t have EDS but I did have pots in the beginning of my symptoms 5years ago. And I hand severe endometriosis from my teens until 39 when I had hysterectomy for it. Just wanted to share for insight. They did try me on amitriptyline to calm my abdominal pain because it talks to the nerve In the gut to calm it down and I was finally able to eat. It helped for a year then i was in and out of flares of gastroparesis instead of daily and stuck on fluids and yogurt and soup.

So exciting! Great job on the bedroom reno. It looks amazing!

One reason I’ve found to be a reason among every single person who is looking into EDS as a diagnosis or has finally gotten diagnosed, is the prevention of a permanent decline in your long-term health. If we were diagnosed as children instead of told it was because we were teenage girls or because we have “growing pains,” we likely never would’ve ended up as debilitated as we are. The broken medical systems are what make EDS progress at the rate that it does, at least, if we had medical systems that were set up for disabled/chronically ill people which is really who they should be set up for considering we are the ones who need access to good medical care because we are the ones who have the health issues..I have a feeling a lot more of us would have much less severe health complications down the line. Yes, we would still have problems. Even with a good healthcare system but the problems would be much smaller. I live in the US for context, healthcare everywhere is just trash.

I’m really praying this works for you!!!! I started conspire for mcas and I have no major side effects and it’s helping my condition. It’s such a good feeling when something actually helps.

I know you live in Canada so it’s basically impossible to access a (correct) second opinion, but if your hips are still really bothering you, if I were you I’d try to get your own medical records eventually and try to learn to read them yourself OR get a qualified 2nd opinion, and I know it may be impossible because of what I’ve heard you say and what I’ve heard in general about the Canadian healthcare system but I just wanted to give my suggestion. Sorry if it gives off complete United States 2nd opinion privilege vibes, I’m trying to help not trying to do that just so you know because I don’t wanna seem like I’m totally oblivious to the state of things there. I just know doctors (and radiologists) miss stuff all the time.

awesome news about the feeding tube! Been so worried about you ❤

I'm so glad you finally got a doctor who would approve you for a feeding tube. I hope it works out. I know how discouraging it is to be medically gaslight constantly, I've seen probably 11+ doctors in 4 years, I still have so many undiagnosed conditions that I know for a fact I have because I have done my research, but doctors just dismiss me and mistreat me. I get anxious before every dr appt now because I'm always afraid they'll just dismiss me and even if they don't dismiss me, they do like lite dismissiveness, lol, like they just don't try to help. There's only 2 medical providers I've met that I fully trust to try to help me and to believe me, and that is the nurse practitioner at my neurologist's office and the 2nd hematologist/oncologist I saw. Going to make appts with both of them soon and get the ball rolling because I've been told vaguely randomly before I got really sick that I clot too much, and the neurologist there's a lot going on there, i have idiopathic intracranial hypertension (and the main neurologist, not the np) put in my icd-10 code wrong so gotta address that, and im gonna ask them for a 3 day ambulatory eeg bc the neurologist barely even looked at my eeg, so i feel like there's some things he missed in it, he said i had like small seizures or something so i do have epilepsy but like from what ive noticed of my own seizures. THEY'RE NOT THAT SMALL. i only had a 1 hour eeg, so. this isn't even the half of the gaslighting ive had as im sure what you mentioned isnt even half of it either. all of this NOVEL here, is to say, I relate so heavily to your struggles about medical gaslighting. I hope the tube works out for you. Good luck.

Thank you for sharing all of this. My heart goes out to you with all that you go through 💜 I’ve been looking for a new book to read, if you have any suggestions 🙂

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I too can not eat much.

such a relaxing vlog to watch!! love the skincare products ;)

Was just thinking Nikki has a moustache and beard lol

🎉🎉❤

I’m glad to hear you have some direction. I appreciate all the updates. I hope you and your GI can make the call about medication/tube feeding soon. I know it’s tough, but I also understand wanting nutrition ❤ Will be looking forward to hearing more and thinking positive thoughts for you.

I love Simple Mills crackers! The chocolate mint are my favorite. Go Lytley is so awful. I could hardly keep it down during my colonoscopy prep. I’m glad they were kind about how much you had to drink! I hope you get the results soon ❤

Really enjoy your videos. You’re such a classic beauty. Hoping you get some answers soon❤

Cute jeans! I have been meaning to buy some jeans. I haven’t owned jeans in years.

Love your new haircut. Did your stylist wash and blow out your hair or just cut it dry? xo Sarah

If you don’t follow Maddison strong you should check her out. She’s 25 and so sweet and does chronic illnesses vlogs ,shopping hauls and book reviews and she’s a sweet Christian too. I did an interview with her where she shares about her conditions she has gastroparesis and pots abscess as well.

Besides you being half my age we have so much in common lol I lead worship for years until my symptoms got worse and my husband plays guitar on the worship team and we love Jesus. My heart goes out to you and I really pray that you get a good medicine and supplement routine that helps you feel better. The lord has literally guided my every step that has helped me improve or get diagnosis correctly. Still praying for healing but until then listening closely to him for how to feel my best while encouraged others.

You need more subscribers! You are so sweet and sharing helpful Information. I just subscribed ❤

I don’t know if this will help you feel a little better or not about all of this, but this video makes me feel so much less alone. I have some GI issues but nothing to your level, most of my symptoms are neurological, cardiological, and other types of symptoms. Tons of pain and fatigue, the pain is pretty much untreated, used to take meds for it but they took me off of those and I had no choice in the matter.. I live in the US, our medical system is total crap as well. I have a neurology appointment on the 2nd and I have an mri showing one brain lesion but I’m so afraid since it’s only one and not more that they’ll say it’s mild and send me on my way, and I had multiple messed up (mildly) valves on my echo but they said it’s no issue because it’s mild, all of my elevated or low labs are mild, not enough for any dr to pay attention to, and I’m 23, I feel like logically a 23 yr old should not have any messed up valves let alone five or six like I do even if they’re mild.. I have hEDS too. I am still fighting for that diagnosis and others but I know for a fact I have it my dad has all the same issues and I’ve ran through the diagnostic criteria on my own and I meet the criteria it’s just a matter of getting to a doctor who knows about hEDS and listens to their patients.. it’s so hard to find doctors who listen and validate what you’re going through.

I love the Christmas decorations! The hip brace looks so intricate. I’m glad it helps. I put starchy vegetables & lots of olive oil in my soups to help with calories. High calorie drinks like hot cocoa & mocktails also help. In addition to pudding and nut butters.

I’m sorry your results are taking so long! Nice tips about dealing with disappointment. I totally get what you mean about test results and worry about not getting an answer. I hope your results come soon. I hope they can get your new referral to go through more quickly. Waiting for specialists is so frustrating.

I hope you get your results soon. I’m sorry they cut it short! Thanks for sharing :)

I just want to say thank you foor your discussion about finding a doctor that cares. I recently found a specialist who is more holistic and felt more understood and cared for than the five other traditional specialist doctors over the course of 9 months or so of waiting for referrals and waiting and not having a plan to having a holistic specialist who had a literal diet plan, supplement plan, hair and blood tests ordered, have her personal phone number if I have any questions and that 1 hour appointment. Felt so relieving and just cried because I felt listened to. It's such an important topic so thank you.

Just wanted you to know I’m praying for you-it’s auntie Tina ..if you didn’t know lol