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glittery_geeky. Saturday infusions and chill! Sitting and knitting this Saturday in my

Saturday infusions and chill! Sitting and knitting this Saturday in my @eatyourkimchi tee! This is how I’m #buildaladder -ing today. It was an eventful morning and my body was being EXTREMELY difficult so it was DEFINITELY time to park my butt and let the saline run! I’m running 2L in today and then another 2L on Monday. Hopefully it will help a bit! #salineinfusion #portacath #saphirepump

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Proud of this pair 🥰 . Mums turn to do Ryder’s factor infusions through his portacath 💉 . 3 x per week this brave boy gets his injections to help with his Severe Haemophilia 💪🏻🤙🏻 . #haemophilia #severe #haemophiliaawareness #sunshinecoast #portacath #bloodylegend #bleedingdisorders #factor8 #advate #shire #ryderismyboy #sunshinecoast

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vongraves. He’s got that whole “Mom, you’re embarrassing me” look down like a pro

He’s got that whole “Mom, you’re embarrassing me” look down like a pro. Legit, though. I am now having to bribe him or threaten to shut off WiFi just for a picture together. #momlife

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chronically_celaena. My feeding tube exchange didn't happen yesterday, so I'm stuck with a

My feeding tube exchange didn't happen yesterday, so I'm stuck with a tube that's too short and doesn't pass my ligament of trites until the new tube actually comes in. Last week I was showing signs of sepsis, this week I had been fighting a low-grade fever, which wouldn't be so worrisome if it weren't for central lines and my body running cold. Between the bruise I have that keeps getting bigger, and the mess of a situation this tube has been this year, I've been pretty discouraged lately. The distance between the outside of my stoma and the inside of my stomach keeps changing, but it keeps getting smaller, I just hope my muscle wall doesn't split open again. We told the doctor I was concerned about it coming out, I've been through enough hell this year and his response was "well, while I'm in there I'm gonna give it a good tug to see if it'll pop out with a fully inflated balloon" And then nobody could understand why I ended up in a MASSIVE pain flare... #pegjtube #feedingtube #ovescoclip #interventionalradiology #gastroparesisflare #gastroparesiswarrior #gastroparesisawareness #ehlersdanlossyndrome #edszebra #zebrastrong #fightlikeazebra #potsie #spoonie #chronicillness #chronicpain #losinghope #isthisyearoveryet #whenitrainsitpours #depressedlately #worriedaboutthefuture #throwback #centralline #piccline #portacath

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nutrishare. COMING SOON!
Join us next week as we roll out our new Friday Fun Facts

COMING SOON! Join us next week as we roll out our new Friday Fun Facts Series! Our topics will be #HPN related. Send us questions ♥️ you have about HPN! Or any helpful tips. #nutrishare #nutrisharecares #fridayfunfactsn #friday #hpn #tpn #tpnstrong #hpntips #chronicillness #raredisease #invisibleillness #hickman #portacath #picc

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hometpn. COMING SOON!
Join us next week as we roll out our new Friday Fun Facts

COMING SOON! Join us next week as we roll out our new Friday Fun Facts Series! Our topics will be #HPN related. Send us questions ♥️ you have about HPN! Or any helpful tips. #nutrishare #nutrisharecares #fridayfunfactsn #friday #hpn #tpn #tpnstrong #hpntips #chronicillness #raredisease #invisibleillness #hickman #portacath #picc

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chronicallycassidy. Today was a hard day. I ended up in the hospital early this morning an

Today was a hard day. I ended up in the hospital early this morning and was there until about 5 pm. Extreme upper stomach pain. Was taken by ambulance and had a severe tonic clonic seizure inside there with my mouth foaming, and I had this medication sprayed up my nose which hurt a ton and made me cough like crazy. Had to get a CT scan with contrast.Now I am on some new medication, as I have multiple ovarian cysts that can be creating fluid in my abdomen causing the pain, as well as my stomach spasming obsessively. It was very very hard! I had to miss my last day of ketamine. Resting up! #er #emergencyroom #stomachpain #ivketamine #ctscan #ovariancysts #chronicillness #portacath #rocephin #seizures #tonicclonicseizures

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stoneyzebra. Rolled a nice hemp wrapped blunt this week! Also did my own dressing c

Rolled a nice hemp wrapped blunt this week! Also did my own dressing change this morning and talk about anxiety inducing. I’m happy with the job and my skin is happier! Second and third photo are of my port so if you don’t wanna see it don’t look lol

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careandwear. Our best-selling, universally flattering, Dual Chest Port Access colle
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sadiejack9. Everything is going great so far 😁👍 praise the Lord 🙌 my whole ches

Everything is going great so far 😁👍 praise the Lord 🙌 my whole chest is numb I didn’t even feel the needle going into my port. It almost feels like when the dentist gives Novocain and your lip is numb. Has anyone else experienced that after port surgery? #portacath #port #centrallineplacment #ivfluidtherapy #spoonie #spoonielife #potssyndrome #potsie #potsawareness #dysautonomia #dysautonomiaawareness #fibromyalgia #fibrowarrior #fibromyalgiaawareness #ra #rawarrior #raawareness #asthma #asthmaawareness #asthmalife #anxiety #depression #chronicillness #chronicillnesswarrior #chronicillnessawareness #bringingawarness

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finnthesd. It’s been a crazy last few weeks and that is why I haven’t been postin

It’s been a crazy last few weeks and that is why I haven’t been posting much. I started doing infusions. I am supposed to get them 3 times a week and they take about 4-5 hours. Unfortunately I have only had two successful IV starts. We know that this treatment works from those two successes. So, it has been decided that I will be getting a portacath. My surgery is next Friday. To brighten the mood here is a pic of Finn doing some agility. . . . . #invisibledisability #lifeline #workingdog #instadog #servicedog #sd #medicalalertservicedog #medicalalertsd #shihtzu #shihtzumix #dogsofinstagram #servicedogsofinstagram #servicedogsoforegon #shihtzuservicedog #ivdd #intervertebraldiskdisease #IVDDwontstopme #IVDDlife #handicappets #dogagility #portsurgery #portacath

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defectivemeatsuit. I have a couple of appointments coming up that will test me and my pts

I have a couple of appointments coming up that will test me and my ptsd. Medical trauma is no joke. It’s just like any trauma, you can flash back to the worst of it given any trigger at all. These appointments in themselves won’t be scary, but just the idea that I have to show up for them is the worst part this time around. Next round will be much more nerve wracking, as I have to make a a pretty big decision next month. Also talk to me if you have a port! I’m not even sure what questions to ask my dr, please help by messaging me! Thanks 😺 #medicalptsd #ptsd #trauma #mentalhealth #anxiety #panicattacks #chronicillness #spoonies #invisibleillness #pots #gastroparesis #eds #heds #hypermobilityspectrumdisorders #ehlersdanlossyndrome #mcas #chronicmigraine #menieresdisease #fibromyalgia #port #portacath #infusions

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jeriaielloartstore. 😷Today’s infusion day. A 5 hour treatment. It’s the second time that

😷Today’s infusion day. A 5 hour treatment. It’s the second time that my port is being used. So far, so good. I’m enjoying looking at Christmas catalogs before the side effects kick in. My treatment team is smart & kind. I feel grateful & safe to be in their hands. My recuperation movie will be POPEYE when I get home. #myastheniagravis #MG #immunoglobulin #IVIG #portacath #treatment

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We did it!!! I. Did. It!!! Hubby helped me brainstorm a way to super seal my port so I could fully exercise and work up a sweat. I have been craving a kick-butt power class for a couple weeks now (and I’m normally a slow restorative kinda girl) but I was determined to figure this out. Staying sterile while having my port accessed is the MAJOR priority because it’s my life (literally). But we did it. I am a hot and sweaty, physically exhausted mess and I am so thrilled and proud right now. . . . . #yoga #yogateacher #spoonie #spooniewarrior #chronicillness #chronicillnesswarrior #spoonieyoga #spoonieyogatribe #spoonieyogateacher #dysautonomia #potssyndrome #portacath #yogafaith #holyyoga #yogaandjesus #kickbuttandtakenames

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Sitting and suffering 😢 in the waiting room with my coat as my blanket and my hot water bottle on my tummy to somehow stand the cramping in my lower right quadrant. #crohnsproblems #morbuscrohn #acceptance #crohnsdisease #rheuma #arthritis #radicalacceptance #ibdwarrior #ibd #ced #darm #pain #🚨 #nausea #schmerzen #waitingroom #wartezimmer #clinic #hospital #nurse #doctor #arzt #tpn #portacath #autoimmune #spoonie

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sadiejack9. I am home from having a port placed. It has been quite a ride getting

I am home from having a port placed. It has been quite a ride getting to this point with my iv infusion therapy. I’m happy to say everything went well and thank you to those who prayed for me today❤️ I was super nervous but am able to relax now 😊 tomorrow a nurse is going to come and show me how to use my port so I’ll be able to do it on my own 👍 #portacath #port #centrallineplacment #ivfluidtherapy #spoonie #spoonielife #potssyndrome #potsie #potsawareness #dysautonomia #dysautonomiaawareness #fibromyalgia #fibrowarrior #fibromyalgiaawareness #ra #rawarrior #raawareness #asthma #asthmaawareness #asthmalife #anxiety #depression #chronicillness #chronicillnesswarrior #chronicillnessawareness #bringingawarness

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when someone in your life is sick or disabled, it can be hard to know what to say. the most well-intentioned people can unfortunately say things they hope will make someone feel better, but only end up making them feel worse you don’t look sick is a particular one where the majority do have the best of intentions. then there are the others who use that as a way to make themselves feel better about a sick or disabled person’s condition rather than confront the hard feelings that can evoke. or even worse, there are those who use that phrase as a tool to question the validity of someone’s situation. let me know if there’s anything i can do is problematic because very few people will actually take a person up on their offer. we often feel like burdens or we ask for too much accommodation as it is. instead, insist on taking care of something on our to-do list. unsolicited advice regarding diets, treatments, or really anything is another biggie. advice given when it’s not warranted can worsen or cause distress, guilt, or anxiousness. if we are looking for solutions or advice, we’ll ask for it. i’ve also realized that lashing out at people for saying the wrong thing rather than calmly explaining why it can be hurtful and offering something better to say instead, is also unfair. people can’t learn how to interact with and support you best if you don’t tell them. i hope this graphic will help some of you teach those around you how best to help you, because you deserve the utmost care and support♥️

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theothersideofthecurtain. Story time y’all. Buckle up because it’s a freaking GOOD one.

6 month

Story time y’all. Buckle up because it’s a freaking GOOD one. 6 months ago today, sitting in the IR holding room in this very building, God answered my prayers with this girl. 6 months ago today when I was crying (a lot lol) because I was full of fear and doubt, I met Jenna. She was a “random” stranger at the time who was just assigned to be my nurse for the day. I now know it to not have been random in the least bit. That day, I was pretty vocal about my concerns and was honest that I wanted no part in the “conscious” aspect of conscious sedation (😂) She reassured me and calmed all of my fears - she explained what to expect every step of the way. She was patient with my million questions (Child life specialist problems lol) and she never made me feel like an annoyance or burden. She even went so far as to play my favorite music (Hillsong United) during the ENTIRE procedure to help me feel comfortable and relaxed. Fast forward 6 months and we’re both in the same building again - but now we just get to be coworkers and friends who have coffee dates during long shifts. If this doesn’t illustrate the redemptive grace and goodness of God, I don’t know what does. Cheers to 6 months of port life. Cheers to the girl who was brave enough to overcome her fears that day 6 months ago and show up that morning even though all she wanted to do was to run away and hide. Cheers to the girl who was the one who made that possible; and who has been in my corner ever since. Cheers to answered prayers y’all - He’s listening even when we think He’s distant. CHEERS to us, @debtfreedestination2025 ! ❤️🥂 ☕️

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smilesnows. The sound of my people LOL #ivpump  #ivfluids #portacath #pots #gastro

The sound of my people LOL #ivpump #ivfluids #portacath #pots #gastroparesis #hydration

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We Will Miss You Marianne! Nutrishare’s Wall of Honor, honors Nutrishare Clinicians who have shown exemplary career dedication to improving the quality of life for HPN consumers and caregivers. This year our very own Marianne Opilla R.N. CNSC has earned this honor. Marianne has been with Nutrishare for 14 years. During her time with us she has show amazing heart, compassion for our consumers and the ability to work with complex teams of medical doctors, pharmacists, dietitians and other nurses! Marianne has been an amazing asset to our team and we are sad to see her go! Have a fun retirement Marianne! ♥️ #wallofhonor #nutrishare #nutrisharecares #goodbye #tpn #hpn #ivnutrition #hickman #portacath #picc #intestinalfailure #sbs #crohns #gastroparesis

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We Will Miss You Marianne! Nutrishare’s Wall of Honor, honors Nutrishare Clinicians who have shown exemplary career dedication to improving the quality of life for HPN consumers and caregivers. This year our very own Marianne Opilla R.N. CNSC has earned this honor. Marianne has been with Nutrishare for 14 years. During her time with us she has show amazing heart, compassion for our consumers and the ability to work with complex teams of medical doctors, pharmacists, dietitians and other nurses! Marianne has been an amazing asset to our team and we are sad to see her go! Have a fun retirement Marianne! ♥️ #wallofhonor #nutrishare #nutrisharecares #goodbye #tpn #hpn #ivnutrition #hickman #portacath #picc #intestinalfailure #sbs #crohns #gastroparesis

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theothersideofthecurtain. Happy 6 months to this little buddy!

6 months ago today, right around

Happy 6 months to this little buddy! 6 months ago today, right around this time, I was crying in the IR holding room. Half of me was scared and doubting my decision even though it’s one that was heavily prayed over. The other half of me was refusing to admit I was “sick enough” to need a central line. I sat there completely rooted in both fear and denial. In the past 6 months I have learned so much about ports, their care, how to access them, and so much more. I’ve learned about traveling with infusion supplies and managed life in both the infusion center & home health care. In just the first month I went from being scared of having it accessed by anyone to accessing it myself with out trouble (I’ve had some issues since then but that’s beyond the point). In the past 6 months I’ve also learned a lot about myself and about my own strength. I’ve learned that, while being cautious is a good thing, being too stubborn is not. Ive resisted so many appropriate treatments because I wanted to be strong enough to not need them. I put off the port for way too long and yes, I’ll admit I love it now. In the past 6 months I’ve learned that God is in the little things AND the big things, and I’m so thankful He’s sent me people along the way to remind me of that.

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swychingitup. //The PICC has landed!// After a rather long wait and pre-chemo assess

//The PICC has landed!// After a rather long wait and pre-chemo assessment, I’m wired up and ready to receive the drugs! Having it put in was absolutely fine...just made me feel a bit 🤢 when I thought about what was happening. I wasn’t really expecting it to be a proper formal procedure, but the nurse was gowned and masked, and my veins were scanned on an ultrasound. I asked to be added to the waiting list to have a portacath fitted (I had to have a PICC first because chemo starts on 18/11, and the waiting list is longer than that). I wanted the port because I’ve heard that although the procedure is more invasive than the PICC, it is less annoying day-to-day...and we’re talking about 6 months here! Anyone seeing this with experience of the portacath, and are you pleased you had it?!? Thank you 🤗 #picc #piccline #portacath #bowelcancer #coloncancer #bowelcanceruk #bowelcancerawareness #coloncancerawareness #cancer #fightingcancer #thisgirlcan #fuckyoucancer #downbutnotout #notgivingin #silverlinings #battlingthebigc #colorectalcancer #cancerresearch #cancerresearchuk #mysurvivalstory #nevertooyoung #standuptocancer #cancerawareness #stronggirlsclub

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olivia.grace.clark. •Today I want to acknowledge the people that keep me strong when I don

•Today I want to acknowledge the people that keep me strong when I don’t feel strong. My mom and my husband. I think we can all agree that CF spouses and mommas are some of the toughest people around. They choose to endure CF with us, when we don’t have a choice. Our constants in an extremely unpredictable life. When I had the opportunity to share my story at a fundraiser this past weekend, I was over the moon that these two were able to be there with me. It’s their story too. I wouldn’t be where I am or have the resilience I do without them. Thank you to everyone fighting right along side a CF patient. You mean more than you know 💜•

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mccardclothing. Even in the Fall chill, patients who are receiving chemo can get hot.

Even in the Fall chill, patients who are receiving chemo can get hot. MCCARD's classic-style tank in blush offers an airy, relaxed fit and is a great option for those who get more hot than cold. Also, snaps along the shoulders allow for easy chest port access. Click on the bio link to see the complete line! #chestaccess #chestaccessshirt #port #treatment #chemotherapy #cancer #cancersucks #fcancer #letsbeatcancer #fashion #tshirt #tank #apparel #clothing #patientware #centralline #chestport #cvad #centralaccess #portacath #medicaltreatment #medical #treatment

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superchiss88. DIARIO DE UNA GUERRERA
Día 78:
Último gotero del primer ciclo, luego u

DIARIO DE UNA GUERRERA Día 78: Último gotero del primer ciclo, luego una semana de desconexión para pasar todos los síntomas que me da y en otras dos semanas empezaré las semanales. 12 en total. Estás me producen cansancio y dolor de huesos según me dice la oncóloga, pero son mucho mejores. . Fin de un ciclo jodido (junto a @laxlaau que me da mucha alegría que esté a mi lado hoy ya que a penas nos podemos ver) y empiezo otro mas suave que me hace ilusión ya que tengo muchas cosas en mente. Voy a proponerme un reto a mi misma. 12 semanas para conseguir objetivos. Ya os contaré cuando pero quiero que sepáis que me hace muy feliz esto. . En la consulta he comentado a mi oncóloga que me duelen las venas, así que hemos decidido entre ambas ponerme el “Port a cath” para tener un acceso directo y no estar pinchándome cada vez. . Algunxs ya sabéis lo que es, explico rápido para los que no... es un único pinchazo en la clavícula donde ponen una vía directa a la aorta, lo ponen en quirófano con anestesia local, algo molesto al ponerlo, pero me va a evitar dolores cada semana al pincharme, ya que las venas son más frágiles conforme avanza el tratamiento. . Te quiero Lau bonita, gracias por estar y ser la primera amiga en acompañarme. Me he reído mucho y has hecho que el rato sea más ameno. #cancerdemama #cancerdemamacon30 #breastcancer #diariodeunaguerrera #dia78 #sonrieycantalealavida #siemprefuerte #portacath #nuevociclo #12semanas

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