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
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
whoo.hoo.
#cushingsdisease ##adrenalinsufficieny #raredisease
whoo.hoo.
#cushingsdisease ##adrenalinsufficieny #raredisease
Infusions, ports, PICC lines, hospital stays, and recovery days come with enough challenges already.
That's why adaptive apparel matters.
#AdaptiveClothing #ChronicIllness #DisabilityCommunity #CancerSupport #InfusionDay
Infusions, ports, PICC lines, hospital stays, and recovery days come with enough challenges already.
That's why adaptive apparel matters.
#AdaptiveClothing #ChronicIllness #DisabilityCommunity #CancerSupport #InfusionDay
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
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
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 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
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.
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 #ALEXandANI #KedsStyle #NYYankees #WearPair #IVIGinStyle #AlwaysCoordinated😘
~🦋
#InfusionDay #ALEXandANI #KedsStyle #NYYankees #WearPair #IVIGinStyle #AlwaysCoordinated😘
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
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
Our Raglan & Arm Zip Access Tee features discreet chest & arm access, soft comfort, and everyday style for treatments, recovery, and daily life.
#AdaptiveClothing #ChronicIllness #DisabilityCommunity #InfusionDay #SpoonieThreads
Our Raglan & Arm Zip Access Tee features discreet chest & arm access, soft comfort, and everyday style for treatments, recovery, and daily life.
#AdaptiveClothing #ChronicIllness #DisabilityCommunity #InfusionDay #SpoonieThreads
We put together a guide with practical tips for patients + caregivers.
spooniethreads.com/blogs/thespo...
#AdaptiveClothing #InfusionDay #ChronicIllness #CancerSupport
We put together a guide with practical tips for patients + caregivers.
spooniethreads.com/blogs/thespo...
#AdaptiveClothing #InfusionDay #ChronicIllness #CancerSupport
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
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
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
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
#InfusionDay #AdaptiveFashion #SpoonieThreads
#InfusionDay #AdaptiveFashion #SpoonieThreads
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...
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...
Got about another 30 mins here to finish out my #saphnelo treatment. Keeps the #lupus in check.
Got about another 30 mins here to finish out my #saphnelo treatment. Keeps the #lupus in check.
Five exclamation points = we’re listening. 😄
Our Chest & Abdomen Zipper Access Hoodie lets Christopher stay in his hoodie during infusions while keeping treatment access available.
That’s exactly why we make #AdaptiveClothing
#InfusionDay #SpoonieThreads
Five exclamation points = we’re listening. 😄
Our Chest & Abdomen Zipper Access Hoodie lets Christopher stay in his hoodie during infusions while keeping treatment access available.
That’s exactly why we make #AdaptiveClothing
#InfusionDay #SpoonieThreads