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Maggie Day

@maggieday555

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If you can please click this link, if you have a $1 or $20 or just a post & share it would move mountains struggling with brain tumor recovery & care

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Going to try this again without the instagram imposed crops bc it’s really important. There are millions of us and millions trying to help, millions not listening to us - we know what we are experiencing. We are the experts in our bodies. We live in them.

There are also millions looking the other way. While I also wish I knew how to get people to care, I don’t. This thread is simple & handed me language I can’t access & put this simply in 12 short screens.

Hope you find it helpful. Whoever you are and where ever you may be in this life

#disabiltyawareness

#FriendsFoes
#Advocates
Ghosts by @maggieday555

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a year ago

It's that time again

It rushes in

I have no ribs to push back against the fear, pain,breathing through a torture machine

Do it good

Don't breath

Don't move

No Do Overs

One thing I don't have is "is it still there? Is it growing.

I never needed the results.

I felt u forcing Ur way back in.

It's that time.

It's that time.

"Paperwork" a machine worse than this. A stuck to unstick.

It's the only way.

It bangs takes my brain and bangs it against EVERYTHING, with pleasure

The cliff was built to throw people off of it

We saw it first and tried to warn

I just want a life worth living.

Even if 11k, it's that time again. MRI 6 months.

Jan cliff became Oct

Disabled got thrown off the cliff bc they are betting no one gives a shit

Do you?

We are millions

I am One

How to change One frame.

Stop the same.

As for u, see you in the mirror.

PS Crying is ok too.

#braintumor if I have my way you are getting radiated in Jan

#Seizures U will LEAVE for good

PaperWalk in 4 days temp drops, you will burn and warm this iceberg.

#IamStillHere

#seizuresafety getting a break not soon enough by @maggieday555

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11 days ago

I still got hopes

I still got dreams

We never get those things

Alone

I just got thrown off that final cliff

We keep hearing about

I say this to all of u in free-fall, I'm W/ U TOO

Esp when u feel TOO alone
holding hands w/ hearts

Gratitude, confusion, CONNECTION

I Need correction

It's a system

I'm LOCKED in

If u haven't been in here, please imagine,

Hunger, adrenaline, damage, an infinite wheel u MUST Run

Even when it forces 87% reduction of care, the wheel goes faster

ends treatment, rest, recover, sleep, eat, shelter,

not wants,needs

Not bc

not medically necessary or unqualified

Bc a cliff was built in by pols idk

Live JUSR ONE yr w/ real treatment w/out Poverty Cliffs, Disability Death Deadlines

Homeless

Healthless

SURPRiSE came 4 months Earlier than Expected

Just get to Jan

Meanwhile Seizures I've endured Bc reduced care, can't triage on this wheel- it never ends

Seize, Silence

They areChanging me

My thoughts are caught in the wind

JUST get to Jan Radiation

400%+poverty, disability CLIFF- Mid treatment Cliff Right NOW is a death sentence

"I cannot" DOES NOT Care

U reasoned for accommodation

U somehow planned

Record deleted

Reset-Reach

Things I know

I can shift, hope

I am Home

Realizing U don't know.

Can U help me Reach?

Bc TOO SLOW death sentence -impaired, scared, I accepted...it
But I woke up

I don't want that death, life

1 more try

A huge ask

for life

A baseline

to achieve

42

I know theres more

Asking please for 1 year to end this cycle to finish treatment

To help, me, a person

To breathe, treat

A chance

to those who don't know

to let me shred the "paperwork" burn the wheel

Bc

No there's no help

No there's no rules

No there's absolutely NOTHING I can do

JUST Shift to Reach those who can stop it

A longer arm

To tap the shoulders of those I love but don't know

to those who I may not know but cant reach

To catch Un-exhausted hearts & kind minds

A Day 1

6 peoplex10 buys me a chance

I am Open to ideas

I, Am, Open to receive a life less hard

U have kept me alive

Ur words have been my voice

Help me speak one more time, please?

#braintumorssuck

#MutualAid

#seizureawareness by @maggieday555

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11 days ago

Please help my little sissy get to me without having to weigh gas. We lost Nelly then Josie lost her home next door. She comes to #Caregiver

The rapid changes have me living in crisis and there is always more.

Link in bio bc #mutualaid kept her here for 2.5 years of #Disability - smoothies in the morning, insurance battles, appts every week. Dinner cooked. Nelly & me SURPRISE Sleepover

Link hopefully works

impairments have me posting blind

#BrainTumorsSuck
Disability & @josieday444 rode & almost died.
Getting new footing not great but she shows up.
Please help my sissy. Please help me bc there is NO support for lateral care in 40s
Care ur movies giving but ignore those who need support.
🙏🏼to those who have kept us alive

New developments may stop that. I've always said, 4 years of this, I will die.

Jan radiation - rolling the dice w/ rapid change & absolutely no idea how to manage it.

Love u all. U make life mean more than suffering by @maggieday555

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24 days ago

Seeing my dad was the best thing that's happened in 2 years. He swooped in to help me unbury myself. Thing is I've lost a lot of support & need it now more than ever, so he dug the deepest hole after I became unmanageable. And left with unmanagable. I need such a small amount of support to be independent but that support is not covered, offered, & losing my sister next door right after Nelly has given me absolutely no adjustment time. My 4 neurologist express the importance of things maintaining the same & here I am late on everything. I can't even get someone to take me to the bank. Let me please thank @marles_in_charge @amandacolumbus for acting fast and getting me help. 9 bags of laundry & my father for his remote help that is endless. The tables should be turned. I am losing so many family members. I have no idea how to function when things get like this and my baseline is not a great place but I appreciate it so much bc when it is gone I feel it now.

I'm out of funds to do the mandatory uncovered mobility massages. Offsite laundry & medical suspension of license - not to mention how do I get food when I cannot manage the stimuli these brain tumors attack me bc item item item humans strike me down. I need to hire someone and I just can't. No budgeting skillls are better than none. For my budget anyhow. I've had .3/3 forms for months - I got 1 in. All of which B said he would turn in 2 years ago.

My whole job is to stabilize & also get my spine and hip strong so i can go through radiation in Jan@m

The only upside is maybe the seizures with stop, the influx of growing systems.

There are no words of gratitude. I am trying to practice talking but I am going non verbal. I don't just recover. I need help. And it's truly not much but when it builds up everything falls apart. Missing this mobility massage - weekly- that doesn't recover either. The pretzel I become. The immobility. If you can click the link in my bio to GFM and donate anything or make your own post with it I would be so grateful. This crisis is so much longer than I could have imagined. I can barely see anymore. And when things pile up, I stop functioning. I just desperately need some 🙏� by @maggieday555

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2 months ago

What I want to say is so much but the tumors are flaring I cannot believe my dad and my sister will be here on my surgery anniversary!

Tomorrow! Tonight?

The 2 people who have suffered a deep cost to give me so much love to get here.

Where it goes I hope it’s fast if it doesn’t last, if radiation takes the symptoms, I’ll be the bestest person on earth.

I’d like to wake up again. I’d like my brain back. I’d like to spent time w/ you, as me

#BrainTumorAwareness Dekle Day Josie Day

Nurse Nelly✨ Star baby here. Life is hard. Life is pain. Waiting for some good

For the first time I feel excited about an anniversary. Thank you all for getting me here. 🐣🥹♥️ #disabilityawareness #rideordie

Pre-op

Post-op

Pep talks

Phone calls… I love you so much

#caregivers by @maggieday555

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7

3 months ago

Idk how to make a story

Idk what a reel is

Idk how post a link - except on my bio!

I do know my remaining #braintumor grew 2 much
aGAIN

And get this, I got a new 1 coming mother f🤬

I would be getting radiation right now

Due to the state of the complex recovery Big Insurance laid out for me

& unrelenting emergencies from the last couple months

Ive got 6
Months to get stable physically to avoid worse - than death

I lose more of myself week to circular assisted suicide designed AI ‘help’ bots.

Oligarchs think it’s fun…

They optimize for not just death
- but stolen time.

They measure the pain.

For every $110 they demy a PT, they spent $1millliion to escalate immobility & TORTURE

Wearables, right?

Bc if there weren’t metrics, what would they have for entertainment

If you understand

Please do your thing

they killed my #dog

Evicted my #Caregiver

Are stealing my dad

they are coming fast for worse.

I don’t have the words
#But if you do please help me raise #mutialaid

I need your help

If you can do what I can’t anymore, post in your voice, in your style, reach out to friends, I’ve been 3/300 fail

So if you understand what I mean, can you help?

If loan me your brain & make posts w/ our caregiver GFM link in my bio, u got my 💔 forever

Our caregiver link is in my bio on Fb & here linkinbio👈

I went 7 rounds of seizures tonight

Sending post now- as is by @maggieday555

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4

4 months ago

It’s that time of year again. June & Dec MRI to see if it’s radiation time if remaining tumor has grown.

Seizures are killing me. The intensity is unmanageable with #NurseNelly and care costs have gone up inexplicably

Tomorrow night is my next MRI - only Nelly won’t be home waiting for me.

I’m sorry I haven’t been on here. That I haven’t replied or even had the wherewithal to see the comments from November & april

- I have been in a desperate situation. my brain has been extraordinarily attempting to kill me.

With cuts to covered medical needs. W/demands piling up I cannot do. I’ve been in nowhere land

just t trying to find a place where i understand what day it is. How to write a text to write a desperately needed post for help

If you can spare some funds my #linkinbio👉💻

Help is Needed now more than ever. It may be my last post considering I haven’t been able to just send a plea

I’m so grateful for the care you’ve given

I wish I had better news

I am coming up on 2 years and all my plans to slow down for a 6 month plan blew up & it went upside down

Rest is something I’ve not be afforded— not ever not ever and it’s taking its toll

Please don’t do what I did and push so hard. You can break things. The body is also gentle

Things can get worse

The list of care needs & unmet needs are so beyond my ability to list them

I so appreciate dad, his constant help, his visit & wish I was able to make it easier to help me

much comes w/ my disability

Must figure out how to get my car turned on & avail for those willing to help fill the gap

#BrainTumorsSuck

Still unable to consistently field voicemails & emails- mostly medical- but thank you for those who send me constant love

I will get there - I hope

I just love you all so much

So desperately need someone to be w/ me learn my disability & come to appts with me to communicate

Everything downriver from this tumor- just learn what’s happening to my spine from last end of years push for answers

In the event I am alone, I am unable to understand

I wish I could walk away from this system but at this point it’s die or try to live by @maggieday555

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4 months ago

I’m sitting in the ER with @josieday444 . I hobbled in with my cane without my chair bc it’s that emergent.

Making an URGENT post even without today’s upcoming bill,

We’ve have a collective $3,500 due by May 1st and $1,000 due the 2nd week of May.

We have tried to manage them. I’ve had to stop paying for weekly care without the funds to meet the weekly min as prices go up & support has gone down.

We’ve sold every tiny scrap of dust we can. We’ve cut budgets to min survival.

I’ve cut medically necessary yet unmet mobility massages. I’m not sure what to do but ask for help.

Could you please help us meet our goal of $3,500

Link in bio

I’m sorry I forgot to add that. Please help us spread this is you can. It’s hard times for all. Without community care I wouldn’t be alive, wouldn’t have a caregiver, wouldn’t have someone next door for day to day or emergencies. Thank you so much family!

Desperately need your help. I cannot express the amount of gratitude o have for you all! by @maggieday555

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6 months ago

“On this day” in my phone I am reminded of living

A loved life

Freedom is a body lets you leave the house

That doesn’t hesitate to move when you tell it to.

4.3.2024 2 year anniversary of TIA

2 years in my apartment #cabinfever

Still can’t enter a grocery store

New uncontrolled #epilepsy

Can’t drive, wash 2 dishes, take out my own trash

My little sister @josieday444 is my life line & generosity of friends & strangers

Healing on a timeline that can be so scary. I miss living. I miss working. I miss my friends.

#disability is so isolating. Memories like this can send me into the darkest places not knowing what comes next

They can also lift me up. This did, beautiful day w/ my wonderful talented friend

I look forward to a life that may be new, but that frees me from the prison of my brain

#braintumorssuck

But memories like this give me hope that New Me can be functional… when it releases the lighting storm that is my brain

I love you @lesaamoore

Thank you for being a & many beautiful moments on my timeline

1 that I live in, that I wake up in

“Dementia like symptoms” isn’t something one would want to spend a day in … but the a good thing -I spend most of my time living in this timeline

I wake up 10 years ago. until I am oriented, I get to live in a place where it’s not just my 4 walls or adrenaline fueled appts

Heading to 2 years since brain surgery which means heading towards my next 6 month MRI. Monitoring progression of the remainder

2026 still trying to hold myself back 2024 2025 4/5 days a week rushing at ways to fix vs resting

Way too early. Way too much

Still Trying to figure out what rest is … how to let go of fear

Fear of never being Me again

Fear of infinite isolation

Fear of 1st rent due

Fear of cost to move, mobility massages being delayed, PT NEAR ME another 6 month battle w/ molina my hero

Trying to survive hunger bc having AC > seizures

5 weeks w/out my best friend & seizure stopper

Star Baby I miss you. It’s so empty without you. But I know you are not in pain.

If you can help in anyway, 2 years is a long time. Caregiving expenses unmanageable

1$ 5$ $100, a post - it all helps so much

Link in bio🙏🏼 by @maggieday555

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6 months ago

In my fridge. @josieday444 got to take a break from making my am smoothies thanks to @amandacolumbus

Not only has Amanda given us the gift of laundry (!) & smoothies & healthy breakfast (All day) bowls

She gave us time

Time to spend with Nelly

Sissy time.

Care time

Grieving time

Nelly got so sick, it’s been incredibly tense & painful but also wonderful bc that’s what Nelly is

Amanda’s gift are still paying dividends

The gift card for laundry makes me cry

The amount of time Josie has spent JUST leaving for laundry none onsite is incalculable

In Nellys last weeks we were able to have someone PICK it UP from home & return it for free. We are always drowning in bags. Thank you Amanda.

I really don’t know how to thank you all & in this moment thinking of Amanda, the depth of your help….your gift is memories.

Scheduled the 3rd & likely final laundry pick up for tomorrow

5 bags🙏🏼

I gor to spend time w/ Josie instead of her doing a Sunday laundry, day 2 in shock of losing Nelly

It has been so painful but also a gift you have given us. Nelly time. Sissy time.

So far we got 2 smoothies we loved & saved Josie hours making then *washing of her machine*

We wayched 2 movies together day 1 with our first am smoothies you gifted us.

Day 2 we watched episodes of severance with the 2nd smoothie

Idk how Josie will be able to work tomorrow but if she makes it through it’ll be in part bc you have given us this gift of delicious healthy breakfast meals she gets a break from. From 9 Laundry bags time on Sunday.

We got 2 oat bowls.

Jeez I love you all.

$14 still monthly error unfixed on EBT. this is a gift - truly

I thank you as best as I can write this.

Today my smoothie came with a note I got right before Mawmy died. She sent the same one today.

I cried each time.

Thank you thank you thank you.

Josie & I put the eye masks on tonight trying to do normal things flaying in Nellys light burst where she left this planet

You are so thoughtful, so caring, the way you picked what’d help .

It keeps giving

1 day I’ll be able to say it better w/out mess of post op symptoms

#grievingnursenelly
#caregivercare
#puppylove by @maggieday555

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7 months ago

I’ve prayed two times in my adult life. Like the real kind of prayer, where you put your hands together, close your eyes, and you ask your God for help.

Nelly was my first foster. My next was a bulldog named Holly. I had her for three months and was DEVASTATED when Holly was adopted.

Couldn’t stop crying, hands together in prayer asking “Please show me I made the right choice,” devastated.

The next day I was sitting in my then home’s courtyard w/ all my neighbors. My phone rang, it was Nelly’s rescue, she was being returned. That was 6 years ago.

My big girl passed away yesterday at 1:37 pm, in her home, surrounded by her toys, her Puppy (@maggieday555) and myself. She’d been bravely and successfully battling lymphoma for 6 months, since just before my 40th bday.

Feb 2nd the cancer returned. I don’t remember much from February, just that we didn’t sleep through a single night, even when Maggie helped, she helped so much. I remember the kindness and generosity from my best friend Marley and the exact moment when Nelly looked at me and said “Mom, please no more. I’m tired.” And so I said, “ok big girl, no more.”

She went into comfort care & after a very scary night this week we made the decision to let Nelly go.

When her spirit left her body Maggie & I wept. Nelly’s pain was gone, up to Chihuahua she went. I am filled with relief she’s at peace. I will miss her everyday, forever.

Nelly loved her people. She had so many. She loved car rides, she loved jumping on my bed every morning for cuddles. She loved vacations and staycations, she was my Explorer Dog. She took me everywhere.

She loved watching her programs with M, I’ll never forget hearing sis explaining all the plots.
My heart breaks for Maggie.

More than anything, Nelly loved to make you laugh.
I hear ppl say their dogs saved them & I used to joke that I was def Nelly’s savior.

But the truth is, Nelly was the answer to all of my prayers. She made my life so bright, even in complete darkness. I will miss her humor, her big warm body, her wagging tail, her nightly watching me shower, taking her next door to visit sis.

You can stop working now, my Big, my Brave, my Beautiful Nelly. ♥️ by @maggieday555

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7 months ago