Pumpkin

i wish there was an me/cfs care home

with specialist carers who knew we need quiet and peace

sound proof rooms

and our doors had labels of our needs

i had a dream about helping a disabled couple and it was beautiful

i woke up and thought about my ex

i was locked in a body thar wouldn’t move for a long time this morning

i worry for winter this year. i keep getting worse. idk what to do.

i am not in that world
and i’ve always wondered how much is it?

congratulations on your special achievement and have the outfit now i am glad for you!

last night was rough
but it was ok

i remember the reallt bad nights before i had pain meds
before i knew i had mcas or how to handle it

guitar learning neighbor learned Mad World and is singing it

i’m glad today isn’t a drums day

please dear goodness universe let my
meds be brought to me
tomorrow

pleaseeee

lol double checking my iv flow bc i’m
foggy foggy head

it’s good

i am hope sleep comes but idk

just grateful for some rest from the pain. still hurts. but. i’m not groaning in pain. bc of meds.

the wordd have

not always been great

oh well. i’m in fairly ok spirits lately even with the discomfort today

but tonight before the meds hit i couldn’t contain some of my groans and yelps of pain

that hasn’t happened in a while

i haven’t been able to get a new weather app but thank you for the recommends everyone who did i really appreciate it

i feel crummy and idk why and so i can’t fix it

i guess it feels kinda like a weather issue. something i can’t control

taking the anti nausea helped too.

i’ve felt so nauseous lately. even when i eat or don’t eat and idk

i always feel nauseous taking lots of pills on an empty stomach. so i try not to do that but sometimes i didn’t eat enough. but this isn’t that

i have so many different problems. and they all seem to be on rotation when they aren’t competing with each other haha

i haven’t been able to tape my hip and now is NOT going to happen

i need to try to sleep if i can. before the meds wear off

i’m finally feeling somewhat ok after a dreadful few hours so i changed the IV bag finally

that wasn’t why i was sick, there was still a little bit left when i swapped it so i wasn’t out or anything

it eas a different kind of icky

the app makes it pretty darn easy but i need something even easier haha

i wish i had the bandwidth to log my meds more. so i could get info on all that

but i haven’t been able to

my ideal would be getting censors and making ITTT codes so i can tap my phone to the med box to log the meds. something easy

i know cold weather makes me achy and i don’t eat when i crash badly

but it’s validating to see the data backing it up. and Guava app lets you change the correlation % and inputs and stuff if you want. but it found so many insights on its own

i really like the guava health app. it tells me “insights” that it finds… correlations between my stats and input. like my HRV goes down when i lose weight (bc i’m sick haha) and i move more when the weather is warmer

it’s been nice

whatever my problem is i am not having a good night

really glad i have meds for tonight. and get refill tomorrow

i also realized it sucks bc on longer months i get less meds. i get enough for 30 days on most of my meds but like some months have 31 days

rude

my tongue tie is minor but bothering me now

so the tight fascia is a problem. and i need to watch it.

it was bothering me earlier today. and i realized.

if i don’t fix it then it will be difficult to swallow next

maybe it’s part of why i felt so crummy earlier

for the chronicnloaf the person who gets on tv shows suing friends

youtube.com/shorts/ftnzy...

i know that doesn’t make sense but it’s the best i can be now and want to save this shaee so here

Suing my friend on Judge Joe Brown

NASHVILLE COMEDY FEST April 19 & 20, 2024https://thelabatzanies.com/show/category/series/2024-palmertrolls/the-lab-at-zanies/nashville-tennessee/

youtube.com

ok it’s finally starting manageable

god to night sucks so hard

it still hurts

please stop crying

please
medicine work

please mcas flare stop pl see don’t get any more worse bad

please

bob ross streams on twitch. did you know

so i am watch and

god it hurts so much

i wish i had the medicine and i do t and idk it’s still a bad night

i found a position

i can’t say it’s comfortable
but it’s. idk. it’s what i’m in.

and i’m just try stay still and wait until meds hit

in my head i think “please make it stop” bit too in pin to wai ir words aren’t coming now

i ate something that isn’t great? idk it

hurts

it hurts and i’m crying trying not to cry it’s

everything feels o awful i’m cold and hot and sore and

i’m not having a good time i am not have a good time

it’s really bad

i took my pain medicine

it’s going to

idk it’s bad

i’m sick so often. i bet he was sick of it.

i always wanted to be near him and hear him and be comforted by him

i always had a flare or a crash. and him not being around hasn’t stopped that

the big crash hand ended

i can’t breathe well and it’s been for hours. i can breathe ok it just is too much work and i feel awful very bad

i took extra clara ton and am waiting g for it

i hate this

i miss my ex’s comfort

oh right

benadryl for. bad flqr. thw w whw other people do

idk it k should
take it or not bc people say the after math is bad

i hate this

i wish i knew what to do when i couldn’t breathe

i guess i can ask my allergist
but
why hasn’t anyone told me how to manage these things?

everyone with mcas has flares
shouldn’t we get more info to manage it

idk

feeling salty about it bc air hunger now

i can do this for one more night

oh no

my roomie had car trouble and got to the pharmacy late. so no pain meds tonight

another night without.

i’m grumpkin about it. but i can get by.

luckily i saved a pill for if i had to go to a doctor and, i’ll just take them tonight and hope meds come tomorrow

ah air hunger hello

go away pls

even with organizing tho i still havent found the pain patch that fell out of the box

my roomie said he’d get my meds for me after work and, i hope he still can. the pharmacy is only open for another hour. some release would be nice

no wait. relief

but i used all pink hair ties so yay i feel cute and matching is nice

color stim for the win!

not that i’ll see it much. but next bathroom trip, i’ll see myself in the mirror and see some pink and be a little happier and that is nice

but, i am used to saving and being conservative with the use of things. it’s the mindset i adopted

disability can make poverty or extend poverty or prevent escape out of poverty or force poverty

and that sucks

i know it’s kind of silly. i have several packets of elastics that i leave in various places to tie my hair up. they are each different color tones. one is pastel, one is neon, one is just black, and the last one is like jewel tones

i got them a few years ago and they’re barely touched heh

i did some cleaning organizing! just a little bit but i am glad for it and every bit of progress i make

then i wanted to tie my hair up. so i got a packet of elastics.

i was going to pick the color i used least. then i thought, let’s live a little life is short, use pink to match my shirt

eee

i call to see if my meds ready bc if i don’t they delay a day and i hurt so i call in the morning

all was well

then i check the app and they canceled one med and put it back early

i call and get it back

then they cancel another med

i call and get it back they have no record of me taking it b4

three. times.

three.

glad today is a fairly ok day to talk even if i feel crummy

but also i had to call the pharmacy 3 times so far and i’m over it

she works every day, and has two jobs. so if she ever had time to rest i wouldn’t blame her at all. i encourage it

when she does pick up my meds i am so glad for it. i try to spread the pick ups around when i can

hehe. a cute convo with my friend who speaks english as a second language

me: can you pick up my meds?
f: today i am in blanket
me: oh! ok rest up!

she meant she was working a banquet and we figured it out after hehe

but i thought she was warm and cozy and didn’t want to leave or was sick

idk what i need or want

other fb a. medicine but. i asked some local friends for help and am waiting to hear back who can do it

what do i do with the day? i don’t know

i
might try to eat some warm
food but i haven’t felt ok to get up for that yet

i really want a warm meal

i feel like i need to eat more bc the crackers don’t have many calories at all but they’re so good i love them

they just aren’t as filling for the work of eating them

i had those and kefir and added some maple syrup to the kefir and idk it was enough

i have medicine ready oh thank goodness

now to coordinate pick up

it’s so inconvenient that they won’t deliver restricted meds i’m too sick to go in but i’m really glad i have friends and support to get them

it’s a crumbs day again