#tubie life
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two of my packages came today yay!!!!!! i got lots of self care/comfort things, i love the bento box so much its surprising official sanrio even tho it was so cheap and its rlly good quality!! its small for a bento box but thats perfect for me because i cant eat a lot by mouth anyways, and the silverware set is so cute it got etching on it making it extra cute (。◕∀◕ 。)
i ordered some wrenches for my enfit tubes because they are so hard to untwist and disconnect it hurts my fingers ;-; but these will make it so much easier, and my fav thing is the infinity pump USB-C charger keychain, i can literally use a phone charger now to charge my pump and not need to carry around this huge hefty wire that i had to rebuy because i lost my original one at an airbnb・゜・(ノД`)
if ur or someone u know is a tubie and wants these things their etsy shop is TubieTech!! i really recommend it they got things that just make life easier
buying things gives me so much dopamine especially useful stuff, im still waiting on my mountain rose herbs order so im excited for that too hehe
#‧₊📝˚⊹ journaling#‧₊🐾˚⊹ my stuff#‧₊📸˚⊹ my pics#‧₊♿️˚⊹ disability#journalblr#journal blog#jiraiblr#jirai posting#landmine jirai#irl jirai#jiraiblogging#landmine community#landmineposting#landmineblogging#landmineblr#jirai girl#landmine type#actually chronically ill#actually disabled#disability aids#tubie life#tubie#just disabled things#physical disability#disabled#irl neet#neetblr#hikkigirl#hikkineet#jiraiposting
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Welcome to my Blog!
Hi! I'm so happy to have all of you here. On this blog, I will document my experiences, troubles, treatments, interventions, and life with Ehlers Danlos Syndrome. Secondary to my EDS I have gastroparesis, dysautonomia, ASD, hip dysplasia, OSA, Iron Deficiency Anemia, POTS/OH, and more. I display my life with these disorders in order to raise awareness for EDS in the public eye AND in the medical feild!
#ehlers danlos awareness#ehlers danlos life#ehlers danlos problems#ehlers danlos syndrome#ehlers danlos zebra#hypermobile ehlers danlos#hypermobile eds#connective tissue disorder#gastroparesis#dysautonomia#autism#actually autistic#neurodiversity#neurodivergent#sleep apnea#iron deficiency#anemia#anemic#pots syndrome#potsie#potsawareness#postural orthostatic tachycardia syndrome#orthostatic hypotension#tmj disorder#tmj#tmj pain#joint pain#joint dislocation#tubie#tubie life
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12 décembre/partie.3: j’attend plus de 35 min et j’entend la secrétaire appeler le docteur en lui disant “je vous rappelle que la patiente avec la sonde vous attend, qu’es-ce qu’on fait pour elle”. Le docteur lui dit qu’il est en train de manger et qu’on a qu’à me laisser ainsi!!! Donc le docteur savait que je l’attendais mais à préféré aller manger sans même donner de nouvelles! Je sais qu’un docteur ça peut être presser mais passer un coup de fil à la secrétaire pour donner des nouvelles n’aurait rien coûté! Heureusement qu’elle l’a appelé car j’aurais pu encore attendre très longtemps… La secrétaire était surprise de voir la réaction du médecin. L’infirmière me reprend donc dans la salle d’examen pour retirer le guide (fil en métal qui se trouve dans ma sonde pour qu’elle soit visible dans la radio), me fixe la sonde à la joue et me dit que le docteur a dit qu’il ne pourrait pas faire mieux, qu’il n’arriverait pas à la faire passer après l’estomac et que je devais donc attendre ainsi jusqu’à ce qu’on me rappelle pour avoir une date afin qu’on me l’a replace au bloc sous anesthésie générale. Je demande si il ne serait pas possible que mon docteur habituel me la place et elle me répond qu’aucun docteur ne serait disponible pour m’aider et qu’il ne ferait donc rien de mieux en ce jour. On m’a dit de fractionner les passages de la nutrition pour éviter que ça stagne dans mon estomac et de voir avec ma diététicienne. Je demande à avoir la prescription de complément alimentaire pour que le peu que je puisse aussi manger par la bouche en parallèle soit au moins ultra calorique et que je reste en forme/ne perde pas de poids. On m’en prescrit donc que je vais chercher en pharmacie. Au final ce fut une souffrance inutile et je risque d’encore souffrir car ça s’est toujours mal fini lorsque j’avais une sonde naso-gastrique et non jéjunale. Pour finir j’ai aussi gaspillée de l’argent car c’est moi qui doit payer ce nouveau modèle de sonde (presque 70€, non pris en charge même avec ordonnance), étant donné que les modèles de l’hôpital ne sont pas du tout adaptés à être gardé sur du long terme. Elles devenaient toutes noires de l’extérieur au bout d’un mois, et de l’intérieur c’était pire; elles était dans un état tellement dégradée que ça me faisable ultra mal dans la gorge. Alors que cette nouvelle sonde est justement adapté pour être gardé sur du long terme dans l’intestin et ne me faisait pas du tout mal à la gorge comme les précédentes! De l’extérieur elle restait blanche et ne pourrissait pas autant de l’intérieur! Bref je vous tiendrai informé de ce qu’il en est de la situation.
#yamina hsaini#yamina's life#gastroparesie#sonde naso jejunale#feeding tube#gastroparesis#tubie life
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Okay, I know there's an excessive amount of tape on my face, But...hear me out...DINOSAURS!
#caspian gets personal#nj tube#feeding tube#tubie life#gastroparesis#dinosaur tape#look how cute it is#too much tape#the main tape wasnt sticking#so i just kept putting more tape on#i regret nothing
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A truly tragic tail
(Blood TW. But mostly it’s about autistic-boy-man housekeeping and low iron counts)
I have a paper cut. It bleeds. I shall dab it with a tissue. There are no tissues. The cut bleeds. I shall find a new box of tissues. The tissue boxes are suction wrapped in a 3-pack. Blood drips down my hand. Which corner of the plastic wrapping will give way? Blood runs to my wrist. I free a box from the plastic. I am nearly there! But it must be torn open to dispense glorious white paper clouds. There’s blood on my elbow. I use one fingernail to split the cardboard, and AT LAST I wipe an 8-inch blood trail up to the site of the injury, which is…no longer bleeding.
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"It had fuzzy ears. Silky soft, when he dared to brush a finger against the curve of one."
Star by @thesunlikehoney
#commander cody#tubie#single dad cody give me life#💖#star wars#sw fanart#the clone wars#tcw fanart#sw fic rec#tcw fic rec#relax art#my fanart#coline7373
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My night in 🫶🏽
Feeling a bit under the weather today with a pinched nerve and strained muscle in my neck, I've opted to turn it into a cozy movie night. I'll be whipping up some homemade Chinese food, mixing a refreshing mocktail, and popping some popcorn for a delightful snack.
Happy Friday 🤎
Pinterest photos
#black girl aesthetic#black girl blogger#black girls of tumblr#pinterest#black girl joy#black girl magic#soft life#black girl beauty#luxury#soft girl era#tubi#netflix#hbo max#amazon prime#new movie#movie night#popcorn#a night in#happy friday#friday night vibes#girl moodboard#black girl moodboard#sick#mocktails#movies#melanin#black girl blog#black girl luxury#happiness#joy
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Madeline Ford in Grasshoppers (2021)
Please do not save, repost, or edit these gifs for any reason, use the reblog button instead. Also please do not interact if you’re a celeb rp blog or if you write taboo content on your blog, thank you!
#madeline ford#mfordedit#madelinefordedit#grasshoppers (2021)#userdevon#i am in awe i found this on tubi tonight i've been looking for it over a year#can check off giffing her entire imdb page now 🎉 now if the easy life could drop so I can gif her in that too >.>#anyway going back to being antisocial and resting nobody mind me <3#gifs:mine
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biggest thing about buffy is why are a bunch of 15 to 17 year olds hanging out in a nightclub !! at night!! are they drinking mocktails? who walks/drives them home? their parents trust them for this??
#btvs#buffy#buffy the vampire slayer#tubi#halloween#the bronze makes no fucking sense what kind of nightclub would exist exclusively as a safe non-alcoholic after-hours venues for HIGH SCHOOL#*ahem* HIGH SCHOOL CHILDREN WHO HAVE HOMEWORK TO DO#season 1 their school full-ass had an entire prom?? at the bronze???#someone who has a life tell me if this is a real thing that happens in america. they're behaving like college students
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you know, I've always headcanoned that when one of the batchers were injured severely and losing blood, they were directly hooked up to Omega because they were most similar to her
which meant that those were the very few moments when Omega got to see them after they were taken away from her as tubies
also headcanon that she was present when they were fixing up Wrecker after the incident with his scarred ear and lost eye
#NOT ik'aad au#this is canon and I am giving myself PAIN#going through the ideas I gave for her early childhood is particularly horrific#she watches experimental clone tubies get terminated#she holds one as he dies#when tubie Tech nearly dies too she insists on giving her blood and thereby saves his life#ugh some of this stuff is DARK I mean#she watches them implant the chips in the brains of tubies; she's forced to help with decommissioning troopers#by the Force she's forced to perform post-mortems on clone cadavers -> May what the kriff#look!! words!!
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Werewolf fans rejoice, they just got the 2022 Indian werewolf horror comedy Bhediya on the free streaming app Tubi!!! I’ve been waiting to see this for years
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YOU ARE TOO LOUD!!!!! (҂`ロ´)凸
#had to make this because it's this morning's mood#battery was dying and it wouldn't stop SCREAMING and i woke up#‧₊🐾˚⊹ my stuff#‧₊♿️˚⊹ disability#actually chronically ill#actually disabled#feeding tube#tubie life#tubie#disability memes#disabled memes#spoonie#spoonie meme#girlblogging#girlblogger#girlrotting#just disabled things#tube feeding
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the bond between a girl and her favorite giallo film is something so sacred
#Mrs. Wardh I'm kissing you on the lips and giving you a life of luxury#Dellamorte I'm ****** you on the **** of the ****** ********#bless tubi's catalog of italian horror#giallo#the strange vice of mrs. wardh#dellamorte dellamore#cemetery man
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Vendredi 14 juin 2024: Comme tous les mois, raccourcir ma frange chez le coiffeur.
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reinas/the virgin and the martyr (2016) having a better imdb rating than anne boleyn (2021) will be my villain origin story.
#reinas makes reign look like john foxe and i WISH i was joking#all the more infuriating bcus the casting of rebecca scot as elizabeth i is INSPIRED#save eye color she is elizabeth to the life!!#esp in stature#everytime there is a good line it is immediately sank by their flanderization of elizabeth/ the writers adding a sanders twist#'a queen must be as intelligent as the best of your wise men; as valiant as the best of your soldiers; and as rich#as the best of your traitors'#elizabeth: 'and SLUTTIER than the SLUTTIEST of england's prostitutes'#(and no. that is not a paraphrase.)#i cannot believe how long i stayed on tubi watching this...i blame my fever lmao
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When your IR check in time is before 7am…
I am looking forward to ditching my PICC and getting my port back again. Just v tired and not amused to be up and about a solid 2 hours before wake up time.
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