so i might have a new diagnosis... a week in my life with gastroparesis
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- Опубликовано: 25 авг 2024
- Hi friends! Today's video is a week in my life living with my chronic illness gastroparesis and a g/j feeding tube.
This vlog is a little bit random and I just take you along and show you bits of my week. Some things that happen in this vlog are getting an exciting package, going to a really cool art exhibit, going grocery shopping, taking our cat for a walk, decorating our house some more, shopping and preparing for my winter tubie pad launch, organizing my tubie pads, clips and port covers, celebrating Halloween and at the end I share that I found out I might have a new diagnosis.
I hope you enjoyed the video and don't forget to give this video a like and a comment and to subscribe for new videos every Saturday! And as always, don't forget to spread kindness and joy!
Pumpkin cookies: organicallyadd...
Products in this video(affiliate links):
✩Always pan: bit.ly/3ByVuOR
✩Plastic drawer storage: bit.ly/3CBbu4e
✩Cat tree: amzn.to/3btTzAi
Products I frequently use(affiliate links):
Cricut items:
✩Cricut explore air 2: amzn.to/2VWeeIK
✩Transfer tape: amzn.to/2VQLUro
✩Vinyl: amzn.to/37MIqZQ
✩Cricut standard green mats: amzn.to/3xJdrbD
✩Cricut accessory set: amzn.to/3xQ5Gkb
✩Cardstock: amzn.to/2Xz2fC5
✩Brayer: amzn.to/3ANaGrp
✩Sticker paper: amzn.to/3kbikFm
✩Sticker laminating sheets: amzn.to/3jaxonF
Sewing supplies
✩My sewing machine: amzn.to/2TMYVRR
✩My serger: amzn.to/2TBeb3Z
✩Sewing clips: amzn.to/2T5Mhgs
✩Cutting mat and rotary cutter: amzn.to/3iiJ9Z7
✩Iron: amzn.to/3xPulFe
Miscellaneous
✩My feeding tube backpack: bit.ly/3ghPpxs
✩Bed wedge: amzn.to/3fVEhrj
✩Apple watch band: amzn.to/2RuBWdu
✩Papasan chair cushion: bit.ly/3gqeiYR
✩Desk chair: amzn.to/3ym4bup
✩My instagram: kenna.krueger
✩For business inquires: makennakrueger@gmail.com
✩My Etsy: www.etsy.com/s...
✩My Etsy instagram: / threadsofkindnessco
Music
✩Music by The Ambient Light - Summer Thoughts - thmatc.co/?l=D...
✩Music by Noah Guy - Saltines & Gingerale - thmatc.co/?l=D...
✩Music by Nathanie - Bliss - thmatc.co/?l=F...
✩Music by Karlush - With Me - thmatc.co/?l=4...
✩Music by Nico Anuch - Good Vibes - thmatc.co/?l=4...
#gastroparesis #chronicillness
When you cut your hair it takes the weight out of it. Therefore, your hair isn’t being pulled straight anymore. That’s what my hair dresser told me lol 😆 xxxx 🎄🎄🎄🎄
Excellent job advocating for yourself and requesting a copy of the tilt table test! Definitely get a second opinion, from a doctor who knows dysautonomia.
If you go with a POTS medication, trying one that can also treat one of your other medical issues gives the best chance of receiving some sort of benefit from it. Mestinon (Pyridostigmine) can be prescribed for POTS, and is also a prokinetic that can treat gastroparesis and/or constipation. It was developed in 1945 to treat a different health issue, has a long safety track record, is inexpensive, and has recently been repurposed by Mayo Clinic and Vanderbilt researchers to treat both POTS and gastroparesis. Although it doesn't help everyone, it's worked wonderfully at treating my POTS and gasroparesis.
Thank you so much and yes I will have to find a doctor who has background information in that. I am glad that medication has worked for you!
I love your channel so much! I have a chronic GI illness too, except I have rapid emptying instead of delayed emptying! There's not a lot of info out there about my diagnosis and my Dr is still running tests so we're still looking for more answers. Even though your condition is different than mine and you've obviously been through a much bigger battle than me, you help me feel less alone. Being nauseous and in pain every single day gets very lonely and frustrating, your positivity helps me so much!
Thank you! I am sorry you have a chronic GI illness as well, the symptoms are so tough to deal with on a daily basis. It is also frustrating when there isn't much known about the condition. I hope you are able to get more answers and better treatment options! You don't have to apologize or mention that I went through a bigger battle! That may or may not be true and also, we are all unique and go through different experiences and are effected by our illnesses in different ways. No matter how you are affected, no matter how mild or severe it is, you still deserve to be validated, understood and treated properly. You are definitely not alone in this!
@@KennaKrueger you really are the sweetest. Thank you so much for the kind words and the reply!
I'd love to learn about rge!
@dizzypancreaspump it's really interesting to read about it actually! It's mostly known as a side effect of bariatric surgery, known as dumping syndrome. So things move too quickly through the GI tract and can't be absorbed or processed properly, causing pain, nausea, dizziness, and other symptoms. As I've had more tests done and been to specialists I've actually learned that my motility tends to switch between both extremes, so right now it's just diagnosed as generalized dysmotility. But RGE is definitely a big issue that needs to be studied more, as well as gastroparesis!
Your haircut is so adorable! It looks so good on you.
Thank you so much!
Hey hey that’s a pretty pan love ur vlogs wow that neon place is so cool
thank you!
Those cookies sound amazing 😋😋 where can I find the recipe? I’m always up for GP-friendly cookies 😅
Hi Kenna!! I’m also a chronic illness fighter and I’ve had moderate-severe POTS for 16 years (although it took me 6-7 years to get diagnosed!) and so long as I’m on my meds and daily IV fluids I have some days my symptoms are manageable and not bad. It definitely sounds like you could have POTS or at least Orthostatic Intolerance or OH, that dr shouldn’t of hidden your results from you! I suggest you go to another cardiologist for a second opinion. I’ve been binging your videos and just saw the one with the TTT and thought it was suspicious that he said you may or may not have it…hmm ok lol 😂 I also have a channel about my chronic illness battles and vegan and GF food if you’re interested!! Lots of love, stay amazing 💜💖💜
The doctor definitely should not have hidden the results! He was definitely a little suspicious haha but I need to go get a second opinion. I will go check it out and thank you!
I feel like you should check if you have more symptoms of Ehlers Danlos syndrome because both gastroparesis and POTS are super common comorbidities
we love a turtleneck QUEEEEEEEENNNNN 👑 where is that cheetah turtleneck from? I’m sad that most of your tubie pads were sold out by the time i ordered- any chance you’ll do a restock? also i’m sorry you have pots symptoms, it’s so terrible and basically the bane of my existence except for my GI issues. sending you lots of love! 💓💗
i love turtlenecks so much! I thrifted it and I don't know the original brand but my guess is that it was from somewhere like tj maxx. I am actually doing a restock soon. I have a few more things to finish up before i do but I will make another post on my instagram and community page on youtube announcing the date and time! And thank you!!
you hit 2k 🥺😭
I know I honestly can't believe it😭😭 It feels like just yesterday I hit 1k
Thanks for the vlogg Keena! Your house looks so beautiful!!! Thank you for sharing your medical issues. I think everyone who has a chronic illness has heard 'maybe you do, maybe you don't' or has changed doctors to find someone who you can relate to better. Do what's best for you! Stay strong! Hugs
Awww thank you so much! Yes I feel like a lot of us had that experience and thank you so much!🤍
That looked like such a cool place you went! where was it? I love your vlogging style too! I might be wrong but I think Izzy Kornblau mentions in one of her videos that some people's heart rate goes up, then drops then goes higher again. I am just going from memory so you might want to check out her stuff :)
It was so cool! It was called Joy Box and it was an art exhibit that was up from september to october in downtown orlando. I will have to go check that out thank you so much for sharing!
@@KennaKrueger That sounds awesome!!! It's such a cool idea :)
You're most welcome :) Hope you're hanging in there :)
Oh and also have they tested you for intestinal dysmotility? I have it and can go weeks without a BM if don’t overload with stool softeners and a TON of fiber in my smoothies with leafy greens!!
yes and no. Awhile back I got a smart pill which showed a mild delay in my small intestine but I had no constipation back then but I tried to get the smart pill recently but my insurance won't pay for it so I can't check up on my motility. However I recently had a sitz marker and all 24 markers were still in my colon on the 5th day so intestinal dysmotility is apparent and my GI has said multiple times that he believes my motility is slow from my esophagus down to my colon. I am lucky to have two medications that have helped me manage that for the most part!
Good luck with everything.. got a question had my tube in since June ( 21 ) my Dr prescribed Destin diaper rash to keep everything from rubbing , but now and then especially when I'm asleep it still rubbing it even starts bleeding occasionally.... any ideas on how to keep from rubbing?? Thank you so glad I found your videos ,love you......
Thank you! I am not sure what you mean by rubbing but creating a barrier between the tube and your skin is probably your best option. I don't have much experience with this but as your doctor said the cream and probably gauze is your best option for now. If that cream isn't working I know there are other options! However, if it still continues to be an issue definitely inform your doctor about that
It is very important that you look at your health and when a doctor tries to hide things from you that is very bad. Having that diagnosis is important and there are a lot of people who are borderline to having something but they are just an 1/8 of an inch away from being able to gwet the diagnosis they need so they can get the proper treatment but the way things are diagnosed really can hurt people and I hope you can get the answers you need because you are the one that is living with your disabilities and they are part of your life?
Yes the hiding of information is not good. I also feel like having a firm diagnosis is important which is why I should probably go see another doctor. I was just unsure still because my test results are so borderline so I wasn’t sure if it was worth it but I probably should, especially since I am experiencing some symptoms!
Hopefully a different doctor can shed some light on the possible pots!
Yes I am hoping so too!
You should see a different doctor I told my doctor about my dizziness and I was supposed to see a doctor but never did. Now my home nurse said that he's upping my saline infusions bc of it.
I definitely should and I am glad your home nurse is helping you manage your symptoms!
It is so frustrating when doctors do not give us the test results, but they will tell us the results were normal! How can we be expected to trust them to help make decisions in our care when they hide results/blow us off? I hope you are able to see a different doctor and get clear answers.
Exactly! I can't believe that is allowed. Trust is definitely hard to form with doctors when that happens and I am even hesitant to go see another one about this same thing because of how i was treated this last time. I know I have to though I just have to find the right one
You hair is so cute! 🥰
Thank you sm!🤍
KENNA YOUR LIVING ROOM IS STUNNING! i love it so much!! Also, I am so happy that y’all were able to finally find some curtains that you like hahahaha. That is frustrating that your doctor hid that result from you. I am glad that you now have a possible answer though. I know it’s so frustrating when you just have no idea what’s happening with your body. I love your videos so much, I look forward to them every week.
Thank you so so much! and haha we are so happy to have found curtains we like too. It definitely is very frustrating all around but I just have to keep pushing for answers. Thank you so much!
I just love your house! Really nice 😊
thank you!
your new hair is so cute! it really suits you 💚💚
Thank you!!💚💚
Yuhhh first to comment on Kenna’s vid🐿it’s Lhia btw lmao
hahah hi Lhia!!🤍🤍
Jeans are so hard to wear with gastroparesis! Have you tried miralax? I use it every other day. It has been amazing for my motility.
Also, I love your scrunchies!
Yes they definitely are haha and I have tried miralax and it unfortunately doesn’t work for me anymore :( but I am so happy it is helping your motility!!