Infusion day = stay warm. Stay dressed.
Our hoodies, shackets & tees feature discreet arm access for IVs & PICC lines — no more freezing in treatment rooms. 💚
Comfort that works with you.
#AdaptiveWear #InfusionDay
Infusion Day again. Fighting Ulcerative Colitis isn’t just physical—it’s financial too. I’m so thankful for those who’ve helped me stay afloat. 🧡 If you can donate or share: gofund.me/e107462bc #ChronicIllness #UlcerativeColitis #SupportMatters #GoFundMe #InfusionDay
Heading into infusion day? Feel your best in clothing that puts comfort and access first. Soft fabrics, hidden port openings, arm-access zips, and easy layers = infusion day game-changers. Read more: spooniethreads.com/blogs/thespo...
#InfusionDay #AdaptiveFashion #SpoonieThreads
A photo of me, my head is in the bottom left corner of the photo. I am sitting in a blue medical recliner. My pink hair is slicked back into a ponytail I am wearing my glasses, cateye shaped and green glitter rims. I am wearing a mask. Behind me is a window open to a hillside of forest landscape. And to my right is a tall IV bag stand with a bag of my medication.
Been a while... it's #infusionday!
Got about another 30 mins here to finish out my #saphnelo treatment. Keeps the #lupus in check.
Collage of photos showing me with Yankee pinstripe mask, shift, & cup, with matching bracelets & shoes
Of course everything has to match the pinstripe pattern – even my coffee cup!
~🦋
#InfusionDay #ALEXandANI #KedsStyle #NYYankees #WearPair #IVIGinStyle #AlwaysCoordinated😘
Photo showed me at getting an infusion through a port in my arm
It's #InfusionDay!
First day with the new dose: 40mg #IVIG every 2wks, down from 30mg 3/4wks, so it's an extra long day. Going ok so far, just super tired & achy (what else is new) – but maybe that means time for a nap!
~🦋
#ChronicIllness #dysautonomia #sarcoidosis #SmallFiberNeuropathy #SpoonieSky
Collage showing nurse accessing the port in my arm (L), and graphs of my ALT and AST results over the past year, always above the highlighted normal range.
It's #InfusionDay!
Blood work today, too. As usual, liver enzymes are elevated enough to keep checking, but not enough to actually do anything about it.
Otherwise, all going smoothly with #port access, hydration, premeds, and #IVIG is flowing now.
🦋
#ChronicIllness #sarcoidosis #SSFN
🧵 continues...
DrippppFASTER-iv pump
I’ve got my #ThirdStory
Workshop w/the lovely & Delightful Ms Ana MC
Late this afternoon
And thanks to her & the
Fab nurses ♥️
Helping me today
Women helping
Women
Is The WAY
Let’s GOOOOO
.
🦋🩵
@anamariecox.bsky.social @ohsuknight.bsky.social #InfusionDay
Hospital room view of Alaska Chugach Mountain range on clear, sunny day
Some days, I don't mind being sick here #chronicallyill #pots #Infusionday #alaska
Photo of me at infusion center with arm exposed to show port accessed (& bandaged); smaller photo insert shows nurse's gloves hands drawing blood from my arm
It's #InfusionDay!
All went smoothly, from #port access to blood draw, hydration to #IVIG (& more hydration).
So comfy with my fuzzy #IVhoodie; passing the time with #Wicked movie 💚🧹 & #HellsKitchen cast recording 🎶
~🦋
#ChronicIllness #infusion #sarcoidosis #SmallFiberNeuropathy #SpoonieSky
Photo of me with one arm stretched out & tubing leading to an IV machine; laptop, phone, & coffee are on the table before me
It's #InfusionDay!
All going smoothly here: #port accessed (seriously one of the best medical decisions I've ever made); hydration & premeds done (to mitigate side effects); #IVIG flowing now.
~🦋
#ChronicIllness #dysautonomia #neuropathy #RareDisease #sarcoidosis #SmallFiberNeuropathy #SpoonieSky
#infusionday calls for rainbows, mocktails and internally screaming #moronsaregoverningamerica
whoo.hoo.
#cushingsdisease ##adrenalinsufficieny #raredisease
It's #InfusionDay!
It took 5 tries to get my BP to register this morning. A frequent hassle, but still better than when they had to stick me so many times – thank goodness for this #port! Otherwise, all good, & (7+hrs in) I'm almost done.
(1/2)
#IVIG #infusion #dysautonomia #SSFN #sarcoidosis
It’s #InfusionDay!
Things are going smoothly: #port accessed, hydration & Benadryl to mitigate side effects done, and now the #IVIG is flowing. I wasn’t feeling great this morning (still not), but didn’t want to miss another week.
It feels like it’s been a while since my last infusion.
#InfusionDay Remicade @ $31 every 7 weeks keeps my immune system from killing me. Hate to think what it would cost in the USA #medicare
It's #InfusionDay!
I'm here early this week 'cause they'll be closed for Thanksgiving ... so I'm thankful they could get me in today. We just finished the pre- hydration and started the #IVIG itself. We do this at a slower rate than it's usually administered because I had a bad reaction ...🧵
🦋
1/
It’s #InfusionDay!
Blood work to start the day. All levels somewhere close to normal-ish, though liver enzymes and glucose are always a bit high - enough to always keep monitoring, but not as high as it was a few years ago when they all got worried. Other than that, all good here.
Happy #infusionday to me!
Made it to the hospital outpatient clinic. Got my pre-meds. Hooked up to an IV to get Ocrevus, the $74,000-before-insurance medication that is taken every six months.
#MultipleSclerosis #MS #chronicillness
Left forearm with IV cannula attached to back of hand
IV drugs in pouch sitting in plastic tub awaiting attachment to patient.
All hooked up to saline, drugs arrived waiting to get connected.
#infusionday
