feedingtube gastroparesis tubie chronicillness gtube gjtube dysautonomia tubielife chronicpain disability medicallycomplex ehlersdanlossyndrome feedingtubeawareness pots spoonie baby childdisability fibromyalgia invisbleillness keeponkeepingon ngtube posturalorthostatictachycardiasyndrome specialneeds tubefeeding chronicfatiguesyndrome cute heds hospital gjtube
// Don’t let the baby face fool you. My scars represent my true age. With each procedure, emergency surgery, device installation, trauma, disease progression - my true age went up. This is the face of a weathered warrior. I may have not battled in a war, but I’ve faced and conquered countless battles. This is the face of unwavering determination and complete desire to defeat all that dares to cross my path.
Don’t let anyone think you’re less than because the wars you’ve waged are different than their own.
#ownyourresilience
#tbt to when they stopped feeding me through my tube and i started eating on my own. Im a little pushy.. #throwbackthursday #throwback #zapp #zappleton #zappzappleton #zappbrannigan #cats #cat #catsofinstagram #catsofinsta #catsoninstagram #catstagram #kitty #kittycat #kittygram #kitties #kittiesofinstagram #thatface #gwow #hungry #feedingtube #gwowchow #meow
TW: weight/emetophobia/nutrition talk
So I no longer have an NJ tube. Which is terrifying. It blocked this week so we came in to get it fixed as usual and got told they would only do a surgical tube, so that's what we were expecting. And then on Thursday a new gastro took over my care and told me everything is in my head and they want me to just sustain myself orally
This isn't in my head. I know that for a fact. There's many tests that haven't been run, plus I have gastro diagnoses so this has come out of nowhere and we don't know what to do. I have no nutrition and hardly any hydration and we're not sure where we're going to go from here. Even just trying to keep drinking to stay hydrated is causing me to throw up. I'm still in hospital but might be discharging soon as I'm just sitting getting sicker and then we'll be looking for an EDS/GP specialist gastro BC I'm not due to see my gastro til July and we know I won't be in a decent state til then.
It's frustrating for this to be happening again. I have been told in the past that my pain and dislocations were in my head just for them to turn round months later and go 'huh, turns out it was real!' and whilst I have no doubt that'll happen again, I can't just sit and wait. My weight is only just above the line for being underweight and I'm dropping quickly.
Please can I ask you guys to pray. Pray for a plan, pray for the right doctors, pray for my nutrition to get figured out. I'm getting worse everyday and am genuinely suffering pretty massively right now. We need God to show us a path because at the moment things are so unclear.
Love you all
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Picture creds to @thechroniccommunity
Hi Keto fam ♥️ many of you pray for my husband, and I wanted to ask you again to lift him up. Larry was admitted to the hospital on Thursday. Symptoms are consistent with sepsis, but we won’t know for sure until the final cultures come back in 48 hours. The preliminary culture from the PICC was positive for a species of staph, which can either be indicative of a line infection or a contaminated specimen. The doctors didn’t want to take the chance of delaying treatment, so Larry was started on antibiotics. The other two cultures have been negative so far, so that’s good news. He will be here a few more days, which means he will can’t escape my cuddles
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Love you, sweetheart. You’ve got so many praying for you. You’ll get through this, too ♥️ God’s got this.
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#ketocommunity #ketogenicdiet
#ketofriends #lowcarblifestyle #ketofam #ketogeniclife #ketolifestyle #ketoweightloss #sepsis #ketotribe #intermittentfasting #weightlossjourney #fatfueled #lowcarbdiet #ketomaintenance #eatingdisorderrecovery #gastroparesis #gastroparesiswarrior #raredisease #caregiversupport #hospitallife #faithoverfear #feedingtube #gtube #jtube #tpn #catholic
“ .” // Flare day essentials: feeds, venting, IV hydration, and making a complete mess of my desk while playing with makeup. Tomorrow I head to Boston for a consult with a second cardiologist I see occasionally, in hopes he may help find answers to this latest episode + TIA. I do my best not to get my hopes up too much before appointments as I’m all too often met with “I don’t know♀️”. But as always, I will remain cautiously optimistic.
As many of you know, I’m on out of work for the next month on doctor’s orders to recover and hopefully find answers. To help raise funds during this time, I’ve launched two new Joyfully Rare designs with @bonfire. I’m really proud of these two designs and I hope you enjoy them too! Lots more colors and sizes are available this time around. Links to both designs are in my bio and I have a highlight with more information as well. Please let me know if you purchase anything so I can send you a thank you letter!❤️. #wearbonfire
Life with a feeding tube. I didn’t expect it to be easy, but it does come some struggles. The day of the placement I was crying it felt like giving up. It felt like I was too weak to save myself. I felt helpless. But in reality it gave me my life back. It’s crazy to think that some formula and plastic tubing is keeping me alive. But holy heck it’s worth it. I’m back to a healthy weight. In less pain jam I have been in a year. But it’s not easy. My tube has to be flushed every 2 hours. Most people can go 4 hours but mine gets clogged too much it’s needed. I run feeds 24/7 it use to be 18 hours of formula but my cardiologist started pushing more fluids. Which means I have to bring supplies everywhere, my backpack, a syringe, tape, water, gauze, pump, charger and a few other things as well. You always have to be prepared for something to happen. I’ve had my tube leak, I’ve had it clog at the most inconvenient times. And I’ve sprayed water all over myself in a target bathroom trying to unclog it .
It’s frustrating, it’s irritating, but it gives me life. I’m still here I’m still moving forward and with the help of Cas together we can accomplish things I never thought possible.
Pawtners:
@asia.and.lotus
@menmyshadow
@jojothepembrokecorgi
@service.stars
Use code: Cas15 @geeksterpets for 15% off your order!
Use code: Cas10 @frostedpawsdogsupplies
#servicedog #servicedogintraining #sd #sdit #labradoodle #doodle #guardianangel #respectthevest #POTS #transgender #ftm #spooine #feedingtube #chronicillness #njtube #tubie #chronicallyill #actuallyautistic #gastroparesis #autistic
Meet “bear” (as Isla calls her), our little tubie friend from @tubiefriends. It’s the best teddy Isla has ever received, it comes to all of Islas hospital stays, to her therapy sessions and even to nursery when she tries to explain to others what her tube is for but she doesn’t always want to show hers. It’s also massively help Isla understand her tube and feel a bit more normal, or unique depending on how you view it. @tubiefriends is an amazing charity that send children with a variety of different needs a teddy that is exactly the same as them; some have NG’s, others have trachys etc. They survive purely on donations and volunteers. But they brighten up so many children’s lives. She even smells of strawberries ❤️
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#tubiefriends #tubie #tubielife #feedingtube #tubefeeding #gtube #gastrostomy #peg #minibutton #mickeybutton #unique #teddy #tubieteddy #complexneeds #additionalneedsparenting #specialneedsparenting #medicallycomplex #parentingblogger #mumbloggeruk #blogger #mummyblogger #motherhood #neurodiverse #raredisease
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