handicap parking, new pins for my shop, new feeding tube formula | gastroparesis days in my life
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- Опубликовано: 13 янв 2023
- Hi friends and welcome back to another few days in my life living with my chronic illnesses gastroparesis, ehlers danlos syndrome and postural orthostatic tachycardia syndrome!
In this video I go get a handicap parking pass, show you my new desk set up for my business, show you the new pins i have available in my shop, pack some tubie tape orders, show you some more books that i am reading and get set up with my new feeding tube supply company!
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!
My shop: threadsofkindnessco.com
Products in this video (affiliate links):
Cricut items:
✩Cricut explore air 2: amzn.to/2VWeeIK
✩Cricut standard green mats: amzn.to/3xJdrbD
✩Cricut accessory set: amzn.to/3xQ5Gkb
✩Brayer: amzn.to/3ANaGrp
✩Weather proof matte sticker paper: amzn.to/3lU8Vni This is the amazon link but I prefer to order them from the actual online labels website: www.onlinelabels.com/products...
✩Standard matte sticker paper: amzn.to/3rXyc3Z
✩Sticker laminating sheets: amzn.to/31BFkrL
✩Epson eco tank et 2760 printer: amzn.to/3osWuR2
✩Sticker organizer sheets: amzn.to/3omHO65
✩Thermal label printer: amzn.to/3sS1wt0
✩Thermal labels: amzn.to/3zkwzPA
Sewing supplies
✩My old sewing machine (more affordable/beginner friendly): amzn.to/2TMYVRR
✩My new sewing machine: amzn.to/302463D
✩My serger: amzn.to/2TBeb3Z
✩Sewing clips: amzn.to/2T5Mhgs
✩Cutting mat and rotary cutter: amzn.to/3iiJ9Z7
✩Iron: amzn.to/3xPulFe
✩Drawer system for my plastic snaps: amzn.to/3ndxT1J
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
✩iPad pro 5th gen case: amzn.to/3xaFK3O
✩Heating pad: amzn.to/3GyeMag
✩My instagram and tiktok: @kenna.krueger
✩For business inquires: makennakrueger@gmail.com
✩My Etsy: www.etsy.com/shop/ThreadsOfKi...
✩My Etsy instagram: / threadsofkindnessco
Music
✩Music by milo. & Chrmng, - DOSHTI - thmatc.co/?l=FA0F3F76
#chronicillness #gastroparesis
The pins look absolutely amazing!! I can’t wait to see new designs!!! You should start a good reads account if you haven’t already!! It’s so much fun to log books and write reviews on there!!
Glad everything has got sorted with your supplies.
Thank you!
Love the idea of pins, because now I can use them to decorate my tube feed/TPN backpack. Can't wait to see future designs. I also use option care and have had really good experiences both with their tube feed and their tpn teams
Oh my goodness, Every Last Word is AMAZING! I'm lucky enough to have a personalized signed copy. It's one of my favorite books, and the TWIST--omg I nearly threw the book across the room when I read it for the first time. Looking forward to seeing more of your 2023 reads!
It was so so good I loved it!!
Jansport just came out with a line of bags for wheelchairs and rollators. They look cute too
I just found your channel, and It's so cool I didn't realize you had a channel- I have a bunch of your stuff in my cart on Etsy currently! Cant wait to get some fun stickers!
congrats on the covered formula, you’ve been waiting for so long and you deserve it so much! your pins are absolutely adorable but i think the most adorable thing in this video was joseph’s dance moves 😂
Thank you!!
heyy kenna and 😂 lol his dance moves
I have several cases of Peptamen AF 1.2 that I don’t tolerate. If you need it, it’s all yours!
WOW it is great to hear your formula is now covered....YAY !!! I love how enthusiastic you are about the escape rooms. Personally I've never tried one, so maybe I should try and find out if there are any in my area. I also had my birthday on the 8th of January so a good day was had by all. I love love LOVE your new pin. I started watching your vlogs when you first started out with your sewing, and OMG look how much you have accomplished. I love it. Sending you and Joseph all my love and support from Karalyn Laurette from Perth Western Australia 😁😎🤗👍💕💖💝
I find escape rooms so so fun! Happy belated birthday! And thank you so so much!
Kenna I am so enjoying your channel. I also have Gastroparesis, Type 1 Diabetes, Fibromyalgia, and severe stenosis in my back and hips. Unless I'm in a bad flare, I am still able to eat, albeit a limited diet. And I'm a foodie and a personal chef. LOL Some days when I'm cooking for clients, it's so hard to sample and taste what I'm making. I'm much older than you and so admire your drive and push. I know how hard some days can be. You're kind and gentle to yourself when you need to be, and work hard when you can. May your health stay stable and only improve and your channel grow in leaps and bounds. :) Edited to add I love that pin and just bought it and a couple stickers.
Aww thank you so much!!
i’m getting my j tube on thursday the 26th. i’m gonna be getting a bunch of stuff from you!!
4:11 I’m only part of the way through right now, but I literally went to CVS today and spent over 200 on my motegrity and I was like wtf but I need it cause I don’t have any more backfill! It’s crazy, same is happening with my migraine meds right now too ugh
Getting my handicap parking permit has been soo soooo helpful. It also took me a while to decide, should have done it sooner tbh. YAY for the insurance issue being resolved!!! I also got my insurance issue resolved this past week and now all my line supplies are covered🥳. Btw this tubie tape launch was EVERYTHING! I got quite a few sheets but they were all so beautiful I couldn’t choose!!! The pin is gorgeous too, so excited for the clothing launch coming up😅
Side note: not sure if you’ve read these but I recommend “The Silent Patient”, “Sometimes I lie”, and “Behind Close Doors”. In that order too lol.
Yay im so happy it has been helpful for you! And yay for your insurance issues being resolved too!! Aww thank you so much I’m so happy you are enjoying the tape!! I’ve read silent patient and I absolutely loved it but I’ve never heard of the last two so I will have to check them out!
@@KennaKrueger thanksss!! Yes the silent patient is one of my fav books I have ever read I thought it was so good. The other two don’t compare tbh, but they’re good reads nonetheless. The Maidens is by the same author as The silent patient so a bit predictable but a good read too :)
I’m only a bit into the video so I don’t know if this got solved, but in TX I was able to qualify for a permanent placard with just POTS, NCS, and EDS (at the time) so you should hopefully be good to qualify for a permanent one!
I'm so glad the supply company issue is resolved. It's so stressful when it's a piece of equipment or medication you absolutely have to have and it's not covered. Congrats on the new merch it's great! I hope the next pin will be, "Out of Order", that is the BEST design, humorous but so relatable lol
Me too and yes it is so so stressful! I am definitely thinking about making that one into a pin!
Yay for a good supply company! I love the pin. Your business keeps expanding into new territory and it is fun to watch.
Aw thank you!
Reading more is a goal for me this year too! I started a book over the holidays, but I still haven’t finished it yet. You’re certainly a faster reader than me lol
That’s okay! All reading is good reading no matter how much you read!
Love the spontaneous dance moving busting out in your living room, lol. I would love to hear your thoughts on chronically ill adults using wheelchairs and walkers for POTS. There was a very heated debate about it recently and since you got your wheelchair, I would like your input. Also, is your family supportive about you using? I just mentioned that my OT mentioned it to me and my family reacted very negatively towards me.
I didn’t hear anything about that debate but I think it’s simple enough if you need it then use it! And my family hasn’t said anything about me using it!
Happy to hear the supply company issue was resolved. I’m sorry it took 2 yrs to get the formula covered. I had to fight w/them as well. My dr was a huge help with it. Sad part was I was denied because I could swallow…doesn’t matter that my stomach doesn’t work. It’s awful what they get away with. I’m happy that they’re finally covering it!! Good luck with Option Care. They’re good to an extent. I have them and every month it’s like pulling teeth trying to get a hold of someone but it may be bc of the state I’m in. I do however get all my supplies, even if it comes within a few days of each other. I also use them for my IVIG supplies and that department is awesome!!!! I’m so excited for more pins to be released down the road. My egg pin is on its way to my house. 😊 I also am looking forward to the sweatshirt release. I’m already coming up with a game plan, lol. The gravity feed bag is for draining and/or used during a power outage. I get them every month. Also welcome to the world of enfit extensions. I’ve been using them since day one (well after my first tube change). It’s amazing. It’s a bit hard sometimes to turn the feed bag one or the extension but I just bought a wrench from an Etsy shop to help. The enfit products are amazing but I may be biased as that’s all I really know. Lol
It’s so crazy how they can deny things like that! Hopefully things aren’t like that with optioncare here! So far everyone has been so helpful so I’m hoping it stays that way. Thank you so much for ordering a pin!! And yes that’s what I assumed the gravity bag was for and I’ve been using enfit for awhile now and I love them so much more!
I had trouble getting motegrity also! My doctor was able to call and state that it was medically necessary (I take motegrity and linzess together and I guess most people don't take them together?) And as soon as she did I got my motegrity approved! Maybe that could help? Big hugs 🤗
My doctor is currently filling out a form for me so let’s hope that works!
@@KennaKrueger fingers crossed!
Hi Kenna, I LOVE your videos and Instagram!! May I ask a question? (You do NOT have to answer!) How did you come to the conclusion that a wheelchair would be helpful for your symptoms? I also have EDS and dysautonomia/pots and have never known that this was an option! Does it help with the pain?
At this time I mainly got it to use during bigger outings like theme parks or places with a lot of walking/standing! I knew it would be helpful bc we starting renting wheelchairs at places like Disney and Disney springs so I could actually go for the full day and enjoy it. And then there have been multiple times where we had to leave places early based on my symptoms, especially during the summer where it gets super hot here and really flares up my POTS. For me it helps the pain as well, with a lot of walking my hips really start to hurt and feeling like they are grinding so if I know I’m going somewhere with an excessive amount of walking the wheelchair will help with that!
@@KennaKrueger thank you so much for the reply!
ليش مسوين عمليه خزل المعده وشنو سبب صار وياج هذا مرض شكراً
For motegrity, have you done the application for assistance? My insurance approved it but it's still $200 with the insurance and the discount card! u_u i might give the application a go.
I haven’t yet! I will have to look into that