pots diagnosis, new stickers & tubie pads + new feeding tube product | gastroparesis days in my life
ฝัง
- เผยแพร่เมื่อ 18 ก.ย. 2024
- Hi friends! I am back with another days in my life vlog living with my chronic illness gastroparesis and a g/j feeding tube. In this vlog I prepare for my upcoming tubie pad, tubie clip, port cover and sticker launch, share about a new feeding tube product I was gifted, go to a few doctors appointments, find out that I do have pots (postural orthostatic tachycardia syndrome), and make a lot of medical related phone calls and appointments. Oh and I also make a pretty cool pair of fun pants!
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!
Tubie Tower: tubiesolutions...
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.onlinelabe...
✩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
Sewing supplies
✩My 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
Miscellaneous
✩My feeding tube backpack: bit.ly/3ghPpxs
✩Bed wedge: amzn.to/3fVEhrj
✩Apple watch band: amzn.to/2RuBWdu
✩iPad pro 5th gen case: amzn.to/3xaFK3O
✩Papasan chair cushion: bit.ly/3gqeiYR
✩Desk chair: amzn.to/3ym4bup
✩Drawer Organizer: bit.ly/3lrNp8K
✩My instagram: kenna.krueger
✩For business inquires: makennakrueger@gmail.com
✩My Etsy: www.etsy.com/s...
✩My Etsy instagram: / threadsofkindnessco
Music
✩Music by Emi Choi - Night Nostalgia - thmatc.co/?l=F...
✩Music by Ashes To Amber - Sand People - thmatc.co/?l=2...
✩Music by Noah Guy - Saltines & Gingerale - thmatc.co/?l=D...
#chronicillness #gastroparesis
im so glad you finally got a diagnosis for pots! being chronically ill obviously sucks, but it still feels good to know that your symptoms are valid. i wish getting a diagnosis was an easier process. it feels like so many doctors just don’t believe people anymore :(
I hear you, same here it sucks!! My cardiologist agrees with me that I might have POTS and has me on metroperol to lower my heart rate and it has been lower but still gets high like 140's and 150 but not as often as it was happening
Thank you so much! And the diagnosis has been eye opening in so many ways. Since this video I am starting to learn what symptoms may be more pots related and trying to find things that may help it. I definitely need to start looking for a new doctor now to help me learn how to manage it better! I wish getting a diagnosis and the treatment that follows was easier too. It seems to be so incredibly difficult
The medicine has helped lower my heart rate to somewhat normal levels I don't get the dizziness but get out of breath and this morning I had heart palpitations for 2 minutes which scared me I haven't had them in years luckily my Aunt Robin is a CMA( Certified Medical Assistant) and also has palpitations and takes the same medication I do, it was because my breathing was so bad I was laying down with my oxygen on 93% and still struggling to breathe she told me to do a nebulizer treatment and even after that I had to put the oxygen back on but it eventually got better. I have my 1st cardiologist and he's young and believes me but first I have to not have anymore covid symptoms.....I tested negative but my body is like nope you are very very ill. I know I my heart it is covid because of the GI symptoms, fevers, more coughing than normal etc, you can have false negatives.
Just found your channel, I am a EDS wheelchair user with gastroparesis and two feeding tubes (PEG and PEJ) and I also happen to be a seamstress ahah lots in common! You are doing so great !
Welcome! And thank you so much!!
I find your videos so calming to watch. I also have multiple chronic illnesses and started an Etsy shop with stickers and keychains and the like to help raise awareness. It's so nice to have this community especially on flare days (btw LOVE the Flare Bears sticker- will be adding it to my cart!)
Thank you so much! It is so awesome you started an etsy shop as well to help raise awareness! Feel free to share the name of your etsy shop so other people can find it! It definitely is so nice to have this community. It helps me feel so understood.
My POTS is rough. So, I’m dizzy, and about to pass out often. So, when my gastroparesis decides to show up, I want to die. I don’t need a feeding tube. But, I’d like the port part that releases gases and bile that cause bloating and nausea. I’m like you. I wish I could throw up, instead of feeling so, so sick with nothing to calm it.
I can relate. Thankfully Mestinon can treat both POTS and gastroparesis.
Aww no I'm sorry! I find it so intriguing how these conditions can effect us drastically different. Even though we have the same conditions, some of us can have one that effects us more predominately and overall the symptoms and severity can vary so much! I am thankful to have my g for those times because the stomach distention and nausea can be so debilitating.
I have the AMT. I love it! I love that it has caps for both ports and the antireflux valves don’t break on them as easily as they do the Mickey button.
That is one of the main reasons I wanted to get the amt! I want those separate ports haha. I don't use my g as often anymore and I hate how I always have to manipulate the little cover over my extension and into the g.
I love watching your weeks in the life :) The new stickers and tubie pads are so cute!!
thank you so much!
So glad you get to see a geneticist! I have noticed some of your joints are hypermobile. I have EDS and it caused so many problems before I got diagnosed. I wonder if some of them could have been prevented had I known sooner. I feel your frustration with medical calls (why do they never answer?)
Wow! Cricut support sounds amazing! We just got the same one as you.
I hate medical phone calls too so frustrating 😤 I have a Foley catheter and trying to get my home nurse back and my doctor is taking forever to sign something that the visiting nurse company needs
Other people have said they noticed I was hypermobile too and once my primary care agreed I was finally like okay I guess it's time to actually start exploring it. It's been in the back of my head for awhile but honestly I think I was just afraid to go because I might actually end up getting some type of diagnosis even if it isn't eds and that scared me a bit. But so many of you have mentioned you wish you would have gotten a diagnosis sooner to help prevent longer term damage so that also helped motivate me to actual make the call. So thank you! And I know I have no idea why they never answer! Cricut support is so amazing, I was genuinely surprised! Have fun with your cricut!
Medical phone calls give me so much anxiety. To the point where all calls give me anxiety now. And I don’t even understand why phone calls give me anxiety. i just wish you could text or email everyone instead. I procrastinate making any type of phone calls, especially medical ones. And if you’re in the medical system you know that you always have to be the one to call, cause they’ll never phone you and they’ll completely forget about you unless you call them. So annoying. The medical system is like technology, you’re so thankful for it and love it when it’s working, but when it doesn’t work you just hate it. So thankful for all our doctors & nurses, but they’re so overworked and have too many patients each that they can’t possibly be in touch with them all and their receptionists can’t handle it all so stuff falls through the cracks.
@@brandifaith3410 I'm the same way major anxiety during medical phone calls and before them I have to smoke a cigarette to calm myself and take my anxiety medication 💊🙃
The fax issues are so relatable! I’ve been going back and forth with my neuromuscular doctor and a home infusion company for about 3 months now trying to schedule IVIG. It seems like faxes never make it where they’re supposed to go the first (or second or third) time.
So much happened in this vlog! Take care of yourself and Happy New Year to you both!!
Thank you so much and happy new year to you too!
I hope you get answers and new treatments to help you!! Happy new year to one of the best , most genuine person I have ever met❤❤
Thank you!! And aww you are seriously too kind!! Happy new year to you as well!
Feeding tube bag exploding in a backpack would be something I'd worry about happening. Does the tube bag and pump unit fit inside of a two gallon Ziploc bag to keep in your backpack to minimize the mess it could make if it leaks?
Glad that you got the POTS diagnosis so you and your doctors will know what's going on with that aspect of your health.
I'm not sure if it does! I honestly don't even know how or where it leaked. I think there was like a small hole in the tubing or something because it wasn't pooling in the bottom of my bag it was kind of just dripped down the sides and on the little bags I had in there but it sure smelled like I had just dumped a whole carton of formula in there haha. I am glad too! It has helped me understand my symptoms a bit more and has motivated me to try to find a doctor who knows more about pots!
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As someone with EDS, POTs, gastroparesis, and colon paralysis, I totally feel your pain. My primary kept trying to send me to a geneticist but the clinic wouldn’t accept my case since I only have a few symptoms for the vascular type and hEDS can’t be genetically tested. So my primary still doesn’t know if I have vascular or hypermobile type. Hang in there! And if you ever have any questions about Eds feel free to reach out!!!!
It's so frustrating when one doctor wants one thing but the other doesn't want it and you are put in the middle of everything! I hope you are able to get tested soon because that would definitely be good information to know! And I will definitely reach out if i have questions thank you!
My mom got a Cricut for her birthday (I think the same model as you, explore air 2) and this exact thing happened to her. It worked perfectly for a few days maybe a week, and then it just wouldn’t cut properly. So we phoned them and they sent her a brand new one. We still have the old one in our basement cause you don’t want to through it out and hope it can maybe get fixed or something, but I’m glad they at least send out a new one with no problems. I wonder if this is a fairly common issue they have?
Yes i have that same model! It seems to be a common issue but I am glad cricut is willing to help!!
Thanks for the video demoing the New Tubie Product. Also, I am super glad you are seeing a geneticist because I think you have HyperMobile EDS. Sometimes the wag you move you are hyper extending your joints. Takes one to know one. I did!N’t get my diagnosis of EDS until I was 45! Also note, some geneticists are better than others. I had to see 3 before I had 1 who was knowledgeable about EDS.
A lot of people have mention that haha And I got a recommendation from someone saying that this geneticist does know about eds so I am hopeful
@@KennaKrueger girl which geneticist is this because I’ve been searching for one to get an official diagnosis! The rheumatologist I saw says they don’t diagnose EDS which I think is dumb because any doctor that has the criteria can diagnose it
I also echo asking for the AMT Mini One cause it is awesome. Sorry you are dealing with Dr. Offices and black hole fax machines been there, done that. Hang in there.
It's okay! At the end of the day I got what i needed to which I am thankful for!
I have a meeting with the Dr the 4th to get pots test scheduled
Good luck! I hope you are able to get some answers!
Good day, I hope you are well. I was hoping to get what the name of the cards you had gotten for eating out, travel, etc. I have gastroparesis also.
Just curious to know if you ever saw a neurologist to see if you had small fiber neuropathy? I know it’s mad random lol, but small fiber neuropathy can wreck havoc all over your body. Gastrointestinal disturbance’s , fatigue, Pots, etc.
I ran into some of your previous vlogs about you having Sibo at one point and being diagnosed with gastroparesis. I’ve had sibo, but I haven’t been diagnosed with gastroparesis. I had a Gastric empty test and it came back normal. Next week I think they are going to recommend the smart pill. I lost close to thirty pounds in a month. I never have an appetite. When I eat I have indigestion,bloating, and feel like my body feels drained. I have to drink tons of water to flush the food out of my stomach. It’s all upper digestion issues I have, nothing with bowel movements. Doesn’t sound like gastroparesis, but this crap is crazy. They think it has something to do with my positive small fiber neuropathy biopsy.
I just had a question about your stickers, do you draw them/make them yourself on the computer or your iPad? Did you just draw them yourself? I’m in awe that you can just think up and draw these designs. I can’t draw a stick man on the computer or on an iPad. Did you watch other people’s tutorials or anything? I’d love to see a video on how you come up with and you do this stuff on your iPad.
Yes and no! I am not the best drawer at all and am still so new to art so I have resources to help me! I have a paid subscription to canva where I get some images from or at least to help me get the shape from, one sticker I purchased an svg, some I traced from my own photos (like the feeding tube bag) and others I drew on my own. Eventually I would love to be able to draw everything on my own but right now I am using whatever resources I can! As for coming up with the ideas they kind of just pop in my head haha I honestly don't even know. I did make a list of words I could use and then from there just began brainstorming a vision for a sticker! When I get more comfortable with the creation process I would love to make a video!
what sticker paper do you use?
hi there, what kind of surgeon who placed the feeding tube? im trying to find one in our area
What heating pad/ heating blanket do you have?? :)
A massaging weighted heating pad i got from kohls!
@@KennaKrueger awesome that sounds amazing!
Where did you get your cute gingerbread man/girl mugs?
Target!
scheduling tube changes is so annoying. i’ve been waiting on my button to come in for over 6 weeks. “it’s a custom order” 🙄 i’ve had this tube since JUNE!!! so frustrating
I have never had a pleasant tube change scheduling experience haha. They have all been so difficult to schedule. omg that is so long!! I hope the button comes in soon! The button is so much nicer
I’m having the same problem but with referrals my doctor will send a referral and it literally took 2 weeks for the other office to get it and call me back it’s so frustrating
Yes it always seems to be such a long difficult process where you have to constantly go back and forth! It is so exhausting to deal with
Making anything happen as far as doctors always means at least 5 calls to accomplish one appointment. 🤦♀️
omg seriously