book haul !!!!

I also had gluten free fish and chips ??? they were amazing and the first time ive had them in YEARS ??

bookstore trip !! successful !!

i'm at a place in my life where I want people that handle me softly & considerately. i'm sensitive. & thats not something that's negative. it just means I need to surround myself with people who are understanding of that sensitivity & naturally are kind & gentle

This only happens to you once

so reminder its okay to protect your energy and rest, please, please do actually. Everything is so so small compared to your health and your being and holy shit is that never louder than when you aggressively become disabled really quick and spend 28 days in the hospital within 3 months🥲

im also feeling so so so very protective over the little energy ive been getting back from this extra flare up little by little cause it was and has been SO much harder on my body so im genuinely like trying to protect what bit I get back each day

pimped out my ride (aka put stickers on my rollator), got some sunshine outside while I repotted 3 plants, have been able to eat 2 meals today without nausea? And i am gonna go see a new bookstore tomorrow with my love and sis in law so like big big celebrations happening with recovering again🩷

I’m feeling very soft and squishy in all the ways today. Mind, heart and body

also i took TWO naps today!! Hell yeah 🤪

BABY STEPS YALL

we are hard-core celebrating the fact I ate 4 chicken strips without zofran and am actually drinking something especially since nerve pain kept me (and my angel babe of a love) up all night last night 🙂‍↕️🙂‍↕️

they've given me 2 rounds of iv zofran and a oral zofran and this nausea STILL has hands and teeth if that helps paint a picture

also the nausea is killing me so so bad holy shit pray for me otw home cause I usually have car sickness too🙃🙃🙃

My body is soooo tapped out

this is so much harder than the first time around 🥲

there are search and seizure dogs that smell CASH thats wild

"the cartels get almost all of their weapons from the US.. where gun laws are far less strict than in mexico.." .... woweeeeee

everyone post your favorite soup recipes (no tomatoes!!) I need ideas plz 😌😌😌

Got my things together for tomorrow's leaving dateeee cause im still manifestingg😌✨️✨️✨️✨️

WE ARE IN THE HOME STRETCH BBYS😇😇

the crows know. that’s all i’ll say. 🐦‍⬛

jay found these info sheets for me to show people when they dont know what nmosd is and to help explain easier🥺

LOOK AT THESE STUNNING BATIKS MY GRANDMA SURPRISED ME WITH 😭😭

also mentally I am also so maybe if you can spare them send good things both ways🥺🫶🏻😭

send me good feeling vibes cause im feeling not so great (physically) and am trying my best

but fck it we ball right

no new pics, where are you at mentally?

Bruh

on another note my grandpa was mid washing his truck and I asked if he wanted me to call him back when he was done and he said "no youre more precious than that" and I- 😭😭

im literally SO close to 😇✨️😇CrAsHiNg OuT😇✨️😇

also they keep trying to give me shit and this doctor keeps prescribing me things and idw anymore!!!! Like tf !!!! Explain the reason !!! My body doesnt like having shit pumped into it!!! Im trying to be a good patient but god damn im tired

!!! I dont like this floor or these nurses !!!! PUT ME BACK IN MY ROOM DOWNSTAIRS WITHOUT A ROOMATE PLEASE!!!!

Got moved to a new floor last night cause they kept trying to share rooms and idk any of my nurses now and im just so tired from having to explain everything over and overrr🥲

Im sooo fucking exhausted yall

oh i care, i care BIG TIME. i care about your favorite song or what book you are reading or what animals you saw today or what you are having for dinner or if you are feeling silly or sad

ur not lazy ur just a princess doing princess things like laying down and daydreaming

hey if u know someone with a rare disease that passed away and meet someone who's dealing with the same rare disease *especially in the hospital* dont tell them about that !!! Its not comforting !!

yall i accidentally answered my other specialist WHILE ON A STERILE SURGICAL FIELD getting a temporary ij central line and was in the process of stitches my smart watch i hit the wrong button and HE WAS TALKING TO ME THROUGH THE SPEAKER OF THE WATCH WHILE I WAS LITERALLY ON THE TABLE akska

feeling very out of patience !! My frustration levels are not grounded and im about to get my temp ij catheter and that shit hurts so bad and puts me in like high sensitivity over drive so im just 🥲🥲

seeing familiar faces at least though 🥺

I count this as day 2 but probably day 1 after being admitted so lets be more realistic 🥲

look im feeling really really not mentally strong this time around for this hospital admission and im just feeling really fragile and exhausted and I just am doing my best but please bear with my live stream thoughts over the next few weeks 🥲😭❤️‍🩹

explaining nmosd everytime a doctor or nurse walks in is exhaussssting like ik its rare but come onn🥲🥲🥲🥲

but we got our shit together and are doing admission!!

had a crash out this morning !!! 😇😇🤪✌🏻✌🏻😚😚🤪

packing for the hospital tonight to go tomorrow morning... but on the bright side we got some new care items while we were out and are mentally preparing for it 🥺 we've done it before we can do it again🥲

new plants acquired!!!!

what in the stars is causing insomnia cause whooo buddy