ฝัง
- เผยแพร่เมื่อ 26 ก.ย. 2024
- Hi friends! This weeks days in my life vlog living with my chronic illness gastroparesis and a g/j feeding tube isn't my best one. Overall it wasn't the best week as I was struggling with a lot of symptoms and just trying to push through so I could complete "normal" tasks but things just kept going not as expected.
I really didn't want to post this vlog because of how negative it was but I did want to show that we all have those weeks sometimes where every day just seems rough. The most important part in weeks like these is that you got through! Gastroparesis and chronic illnesses are not easy and these bad days are inevitable and that is okay. We are in this together and will get through it.
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!
Products in this video (affiliate links):
✩My feeding tube backpack: bit.ly/3ghPpxs
✩My sewing machine: amzn.to/2TMYVRR
✩My serger: amzn.to/2TBeb3Z
✩Sewing clips: amzn.to/2T5Mhgs
✩Cutting mat and rotary cutter: amzn.to/3iiJ9Z7
✩Bed wedge: amzn.to/3fVEhrj
✩Apple watch band: amzn.to/2RuBWdu
✩My instagram: kenna.krueger
✩For business inquires: makennakrueger@gmail.com
✩My Etsy: www.etsy.com/s...
✩My Etsy instagram: / threadsofkindnessco
Music
✩Music by Nathanie - Bliss - thmatc.co/?l=F...
✩Music by Ashes to Amber - Arizona Thunder - thmatc.co/?l=7...
#gastroparesis #gastroparesisawareness #chronicillness
awwe kenna…don’t apologize for having a rough week. everyone has them. we all appreciate you sharing your journey with us and that includes seeing the bumpy road along the way. stay strong and remember that we all love you 💚
aww thank you so much this means so much to me. I am seriously the luckiest to have all of you!💚
Sorry for the negative vlog this week, Gastroparesis is always so unpredictable! This past week was a lot better and I’m so thankful for that! I hope you all have a wonderful weekend, thank you for sticking with me💚
Don’t apologise! Rest and take your time💗 totally understand how you feel, going through a flare myself!
Thank you so much!💓 I hope your flare gets better soon!!
Who cares if the vlog is negative because we all can’t be happy 24/7 unless you’re plastered lol 😂
Have you thought of using washi tape for tube clips
TW mentions of weight loss and numbers
I love your videos so much. You’re so real and make things so easy to understand. I’ve been having problems and I’ve been suspecting delayed gastric emptying. I started out at 160lb and now I’m 146.2lb and it’s been less than a month of server symptoms. I found your channel why I was looking for what this could be. I have never been happier to find a channel before. You are so welcoming, relatable, funny, and just loving. The way you light up over crafts and your boyfriend is so amazing and sweet. Honestly I’m jealous of your sewing and cross stitch. I have spastic diplegic cerebral palsy and I suck wt making straight edges because of it. You’re so talented. Even when times are hard don’t forget you have all of us supporting you. You’re not alone. Your feelings are valid. Your pain is valid. Your health comes first. You are amazing
Aww thank you so much! I am so sorry to hear that you have been struggling. Dealing with GI symptoms like these is so rough and I really hope you are able to get answers and symptom relief soon. Your kind words seriously mean so so much to me and made my whole day. I am so lucky to have people like you to cheer me up. Thank you so so much and I am wishing nothing but the best for you💚💚
People don't realize how expensive formula actually is, and what's worse is having to rely on insurances who get a say in whether you need something to stay alive or not. It's not right. I'm so sorry you're going through this too. And don't be sorry! You've got nothing to apologize for! GP is an unfortunate reality and we shouldn't have to apologize for what life's thrown at us. Hope your week goes better!
Yes it is and I am always in awe how insurances get to make these decisions because usually they don’t make the right one and we miss out on care we desperately need. Thank you so much for your support and I hope you have a good week as well!💚
Sorry you experience insurance issues as well. There are ways to fight back. Having your doctor contact the insurance company and insist on a peer-to-peer review to appeal their decision has helped to force my insurance to pay for the things I need. Putting together a good case to prove medical need is super helpful. There's also the state auditor's office, or whichever government entity in your state that regulates insurance companies - I've used their muscle from time to time to force insurance to pay for things I need as well. Hoping you're able to fight back to get what you need!
thank you for all the suggestions! I have appealed so many times with multiple different feeding tube formula companies and my insurance always refuses. If all else fails I will have to try again and use some of your suggestions! Thank you so much for sharing!
" so we're going fabric shopping is what I'm saying" love it!
I'm glad you posted to the video sometimes it's good to hear the hard stuff as well :)
Oh sweetie, I’m so sorry you are having such a hard time and struggling.
I am so glad you shared it with us though. We all have times like that. It makes us know we are not alone and neither are you.
Love you girl. Breath and rest and sending good vibes your way. Hope you get things worked out.
Thank you so much. You are so right we are in this fight together! Don't worry I had lots of breathing and resting over here and I am so close to getting things worked out!💚
Thank you for sharing your truth with us. Reality isn't always sunny, and it's powerful that you were willing to share yours.
You shouldn't feel bad for this video, it's completely necessary.If someone only watches sugar-coated vlogs, it can feel that you are the only one struggling with their problems.
BTW , I love your new "fall collection" tubie pads. Good luck!
This comment means a lot to me, thank you for your support on the good and bad days!💚 And thank you!!
Your “what gastroparesis is really like” is the video that made me follow you, it made me feel so validated cause my symptoms are very very similar except I vomit a lot as well. I shared it with my friends and family cause you were able to say everything that I didn’t know how to explain to them at the time. It honestly helped so much. I still refer people to the video to help them understand day to day symptoms. Plus I can relate cause we both had medical backgrounds and randomly ended up with GP. Also the cute kitty cats help 😻
Aww I am so happy to hear that video made you feel validated. Gastroparesis and GI symptoms in general can be so invalidating and I don't think people realize what a difference being validated can make. I am so happy you shared it with your friends and family as well because I know how hard it can be to truly explain what is going on! Thank you for being here!💚 And yes haha the cute kitties always help!
I love your sense of humour and the way that you say things I love to renew said that you didn't know what made you think you could sew a button-up made out of gause
Plants I suggest! Aloe Vera and cacti!!! They’re super easy to take care of. I just got a wondering jew plant and it’s so gorgeous and is pretty low maintenance!! I’m sorry you’ve had such a rough week and I hope things turn around for you!
Thank you so much for the plant suggestions! I will have to look into getting those and thank you so much!
I loved this vlog!!! You kept it real and honest which most people don’t do on TH-cam!! Thank you for sharing 🥰💕💕 -KLC X KLG
Thank you so much that means a lot!!💕
I love what you named your plant!
I just want to say that I love watching all your videos! How you edit and everything always feels so calming to me. I hope your next week is better and you get your formula situation sorted!!
Aww thank you so much!! That truly means a lot to me! This week was a lot better and I’m so close to getting it figured out thank you!
I’m really sorry that you’ve had such a bad week.
Gastroparesis is hard & it must be even worse when you struggle to get formula.
I’m in the UK & we have the NHS. Even tho a lot of people moan about it, I am so grateful for it.
Thank you for being real in this video. Remember that you don’t always have to be/stay strong. I actually hate the stay strong saying, as that means to me that I can’t express my feelings about how I really feel.
I also don’t understand why so many people with GP keep on about being a warrior. What exactly does this mean? Sorry, I don’t need to be negative about all this.
I hope you have a better week. x
The shirt looks great. I especially love the colour. My favourite colour.
Yes gastroparesis is so so hard. I am so happy you have the NHS as well but I know like with any health system it has its struggles and they are all valid!
And that is so true. Sometimes we need those weeks where we can just be weak and let ourselves feel our emotions. It is healthy and something we need to help us cope with this illness. I think what they mean by warrior is just a courageous/brave fighter of gastroparesis. And don't apologize, this chronic illness is tough!
I hope you have a wonderful week as well💚
Please don't ever apologise for being negative or having a bad day/week/month. So often on social media, even amongst the chronic illness community its still just a highlight reel. It's nice to see something so raw and honest!!
Also that t-shirt you made for your boyfriend is amazing!!!!
Thank you so much, this means so much to me. And thank you so much! I think I was just being extra hard on myself because I was already in a bad mood haha but this past week was much better!
Hey Kenna. I feel ya. G- tube feeding can be annoying. As a Tubie for +2 years, I also have energy highs and lows. Keep the faith and keep on going. It always gets better. :)
Yes it can definitely be annoying but like you said it has just as many ups as it does downs and I am so grateful for that. I will definitely keep going, I am not giving up!
your vlog came at a perfect time. im trying to stay distracted right now, ive been up all night crying from nausea and fear. i’ll probably get an nj tube put in this next week, but it’s the weekend so i can’t get a hold of my doctors office. i haven’t eaten anything in 48 hours. anyways, i’m really happy that your reccomendation popped up. i know you don’t know me at all, but it still helped me feel less alone in this struggle.
awww no I am so sorry to hear about your rough night, gastroparesis is brutal😔 I know feeding tubes can be so scary but they can also be so helpful. Eat and drink what you can and keep in close contact with your doctor and I hope you are able to get some help and relief soon!💚
Bless you it’s hard when you have awful weeks but still you’re superwoman you achieve so much I think that you did amazing like the fact you’re real and not fake/false you tell it like it is don’t stop! I could no way make things turn out as good as you do with your crafts, creations and garments! Don’t be so hard on yourself I’m on Peptamen 1.5 cal & Peptamen 1.3 cal also as I struggled so much with feeds and my body liked the peptide feeds. Thank you for raising awareness #GastroparesisAwareness 💚🦥💚🦥💚 love from the UK xx
Yes it is and thank you so much that seriously means so much to me! And I am so happy to hear the peptide feeds helped you that makes me so hopeful for myself! Thank you for your support! 💚
I just love looking at fabric! 😁
Me too it is so much fun!!
i loved the vlog! everyone has rough days/weeks so please don’t apologize! you always have such a positive attitude and your videos are always so real which i love. i have a question.. before you got your feeding tube did you ever experience low blood sugar / hypoglycemia? i was just curious.. i have gp but have never had low blood sugar like this until now!
Thank you so much, your support means so much to me!💚 And I had issues a couple times when I was severely malnourished but for me personally if I have consistent food I don't experience low blood sugar. However, many people with gastroparesis do suffer with low blood sugar even if they get consistent food because the stomach and digestive tract is so unpredictable on when it decides to digest!
There’s fb groups where people exchange formula & supplies they don’t need anymore. You have to pay for shipping I think, but it’s better than paying full price. You just have to be careful of anyone that appears sketchy. I think my dad bought me some Kate Farms formula from fb marketplace a few years back. If you can find someone local on there then you can go pick it up which is a bit safer than having it shipped. It sucks that the good formulas that people can tolerate are super expensive.
Also, not trying to get political, I’m just curious if you know about the several hobby lobby controversies since you mentioned them.
ooo thank you for the information I never thought of that. I am getting close to getting my formula but if for some reason that doesn't work out I will look into that! And no I did not know of any hobby lobby controversies haha. I kind of forgot about the place but then when I moved it happened to be near all my other craft stores so I was just like ooo I wonder what they have
@@KennaKrueger you’re welcome! That’s good that you’ll be able to get your formula. If you ever have trouble with the DME not having the bags or syringes you need, those groups are helpful for those types of things too.
I mostly heard about the controversies in passing but the most recent was that they opened stores during quarantine last year when only essential businesses were supposed to be opened and there was the thing where their health insurance for employees won’t cover birth control. It’s cool that you have so many craft stores nearby, my nearest Michael’s is 20 mins away.
It’s ok to show the rough times! We all go through them. You still accomplished a lot for feeling so bad. Insurance can be infuriating! I am frustrated with all things medical related lately. I hope you find a formula you can tolerate soon.
Thank you so much and yes insurance and medical related stuff can be so frustrating. I am so close to getting the formula so that is starting to work itself out thank goodness!
Have you tried PureAmino or EleCare? I believe both are tube feed friendly. We paid $40 for a 14oz can over the counter at Walmart but it was the only thing my daughter could tolerate and was a lifesaver.
I haven’t! I am currently on peptamen 1.5 now and it is going so much better than my last one, however this is such good information to know just in case my body decides not to like this one. Thank you so much for sharing!!
You did so well on the shirts I feel crappy for moaning about waiting years for the nhs to help me out but I don’t pay I feel awful for that it seems harsh there’s no system over there to help unwell people who can’t work to there health out that’s so sad …I’ve turned down nutritionist as I want food not soups and shakes I can’t health the nausea and my bowel doesn’t work but the stress you have on you to find a medication that may not be ok for you that’s an awful situation sending my love kenna 💕
Thank you so much and don't feel bad for complaining about the wait because your feelings are also valid! It can be frustrating to have to wait so long for answers. Sending love to you too!
I have Kate farms organic idk if i could be able to send it n it be okay still but my body just rejected it . but i also have a other kind n i have a lot of it but i didnt have issues with it t just clogged my tube for some reason . but yeah!
It is okay you don't have to send it! Shipping would cost a lot too, but I am getting closer to being able to get new formula, but thank you so much for the kind offer!
US healthcare sucks like just sucks. Especially in florida I’m in bradenton it’s just not good.