isn’t it fun to need to justify to my insurance company why i was hospitalized

ugh getting back on track is so hard it’s so hard and i’m so tired and like i think my MECFS is still not kicking fully after the December tons of antibiotics oh, forgot to say, i looked thru my hospital records and there was another antibiotic i didn’t realize i was getting

i was scrolling YT while waiting for meds to work and Joey has a grey beard now from NSync he’s acting in a play and he looked happy seeing so much of celebrities without having to buy Tiger Beat feels like too much power

It has come to my attention that a funny hospital story I tell people at parties is actually called a TRAUMATIC EVENT™

i fell asleep. while trying to work. lol welcome back, me. it’s ok i can work more later to get my hours in. if i can. but jeez my body is not happy about this

The needle has started to move! Can we keep making some progress collecting towards our relocation out of this tent?? Anything helps! 🙏⚒️💕💸🏳‍⚧♿💜

i did it i returned to work my laptop is back to being set up and i logged in and all i don’t know what’s going on but i’m catching up. and someone sent a draft, so i looked it over and fixed some stuff wheee back at it

sigh. SIGH. weather app lied and it’s raining rn no wonder i feel awful yesterday i planned my return to work around the weather this sucks

i know this is kinda inefficient but i couldn’t help it and i’ve been getting more dead skin off by kind of “waxing” my skin with kinesiology tape just to feel a bit better more clean haha just a few pieces on the worst areas i feel so much better with less dead skin 😭

i would really like for the broccolis in my fridge to be magically warmed up and come to me food dreams haha also i’m now trying to track some of my food to see if i can find more trends

for whatever reason today i kind of keep thinking about a juice cleanse which yes is very LA and bougie of me but i listen to my cravings and try to see what’s happening. am i missing fruit and veg nutrients? is it because my stomach is a mess and would that help me? both? something else?

i know i've ask for so much already, but if there is a handful of you that can help, please do. i have to pay $881 minimum (yes, it has gone up bc of all of the hospital stays recently) on the bills to be in compliance with the debt repayment agreement i signed with them. paypal.me/thelongestroad

i found my work laptop!! it was in my bed. as i knew it was. under lots of stuff. i’m so annoyed at my living situation but unable to fix it

my diet was really not great for the three weeks of rain and now that it’s not raining or rainy weather, i’m suddenly craving more healthy foods yay for that. but also ugh correcting crash time eating is not that fun but also yay i can improve things a lot!

thank you everyone for being my community 💛💫 i hope you have a gentle day and some nice times and remember to take your meds, hydrate, get nourishment, and take care of yourself 💛

i feel really sick today nauseous and weak like my body is hung over from the rain but bestie made me a colorful ducky to watch and as long as i don’t get too excited about that it will be ok

i am on calls often with bestie and he has an intermission screen he puts up when he isn’t sharing his game we’ve been playing Hitman and you can sometimes find special rubber duckies that like blow up i just notice he added the rubber ducky icon to the intermission screen haha then i got sick

bestie is cooking and as he often used to do he’s sending me pictures and like on one hand i feel i can smell the onions sautée ing and the memory is nice on the other hand i can’t eat them or anything else he’s making and i hurt and i’m sick and it’s such a bad day i’m in the full dark

i am laughing as i lie in the dark waiting for meds to kick in because i feel so awful god i feel so awful i feel really awful and i don’t know why that’s funny i forgot but it was tears running down the outside corners of my eyes and idk if it’s from laughing or pain i feel so awful

why did i use the bad IV tubing the day before i was supposed to go back to work why can’t i figure out how to get my watch back to working why do i feel awful when the rain is gone ugggg

Those are incredibly gorgeous colors. Wow.

i sleep with my next IV bag next to me except not last night so now i am bringing a really really really cold IV bag under the covers with me and it is not fun but it’s more fun than if i hooked it up cold lol Central Line life #NEISvoid

Bex is a cancer patient who is drowning in medical debt. ❗️❗️ Please help them to pay the minimum on their bills so that they can get the care they need. The hospital is refusing care until their minimums are paid. If 40 people give $20 this can be done!

i can’t find my work laptop i should have found it before to prepare but i did not and my bed is a mess it’s here. i just can’t find it and i’m very sick still so i can only do little looks and breaks sigh

using my bad IV tubing sucks

bestie has been playing the game Hitman lately when i watch his games and Hitman has rubber duckies hehe i got sad because once you use a rubber ducky you don’t get it back, it’s gone forever but bestie said, it’s ok, they are fulfilling their purpose that did make me feel better heh

in two hours maybe three the rain will stop and be gone and the sun will come back after three weeks of this

i just wished bestie could be here with me and away from his fucked up family and then i had to remind myself it’s not safe for him here. that sucks.

Switching back to setting a large goal that /should/ cover the relocation and updating the display with how much actual cash we have on hand. That number IS going to go down frequently as we have to buy medicines and other supplies to survive in the tent. Anything helps! 🙏⚒️💕💸🏳‍⚧♿💜

i keep going to my weather app and like counting down the hours until the rain stops haha i’m so over rain aches and pains and today tonight is the last day of rain! so i keep looking to see how much longer #NEISvoid #ChronicPain

i’m glad the rainy days are almost done so i can re calibrate and stabilize without all the extra input from rain

i feel off like something is wrong but idk what and it could be the rain but idk it could be the off IV day resonating? idk

this is so messed up please help if you can

URGENT!!!! ‼️ Rebeka needs to pay $881 minimum to get medical treatment at the hospital. They have several bills that are overdue!!!! NEEDED ASAP!

I have no idea what the copay is going to be or what kind of bill this will rack up. I've made less than $5 in MA and only have $11. My husband can help some but he's also low on funds. I'm getting ready to go to the hospital. If you can spare anything at all, my info is pinned 💕💸

Iris still needs our help!! the ask is very doable for a community effort, money for masks! and also, they have lots of other needs that money could help with. so please share, and donate if you can. even $1 helps support them 💫

hey friends! i'm doing okay and they're sending me home today. i can't digest much but i don't have anymore pain or swelling. could someone please help me out with $29 to get home (i have $19 left from the last mutual aid request)? paypal.me/thelongestroad

please? my food has gone off so i'm gonna need some for that

I've stalled at $240 of $700 rent needed by 11AM TOMORROW. This is only 12 hours away, with most of the time being late at night. #PleaseShare, and PLEASE chip in if possible? My survival depends on staying housed, and I have no other options. #DisabilityCrowdFund #MutualAidRequest #KeepFolksAlive

rain messes me up pretty bad

pain is loud but so is MCAS and so is POTS and it all felt way too loud yesterday. and today when i woke up. it is better now. a bit. but also i am tired of it being so hard to fix all the things over and over and over again.

i think i stressed out my kidneys from all the IV fluids yesterday they ache sigh

if i wax my body would it remove the dead skin? i am Disabled with no home care bc all my home care nurses were abusive and i literally do way better on my own last year i showered 2/3 of my body. total. the other day i used KT tape to remove some dead skin so, would waxing help? #NEISvoid

i know i wasn’t able to do that much with MA to begin with but i really miss helping people not just sharing but to chip in it adds up and cash app says the total and seeing it slowly rise for people was really nice but also, sharing posts is so so helpful for people, so i hope people do💫

Under 16 HOURS until 11AM due time for rent, and so far no progress since hitting $240 last night. Please help quickly if you're able! My survival depends on staying housed, and right now I have so little energy. Please share, and chip in if you can!

the rain pause it slow now for the forecast and not all the it’s i really hurt

hello i am done with rain pain all done please no more please i do not want to do this again. i do not.

i really hurt it’s getting bad again and it sucks and it sucks and it sucks

i want broccolis so bad it hurts i don’t have any here and making stuff is too hard rn anyways and also it’s raining a lot bad conditions to ask a delivery driver for help and also just there’s so many reasons and it’s so frustrating

luing in the dark and ramon fly thought of the horrible mean nurse in the ER when i was admitted i hope some day she’s in terrible pain and gets treated like she treated me so she can finally get some empathy she fucking lied to me about my pain meds and said they weren’t on her list only tylenol