janeaustenprotagonist

[janeaustenprotagonist]

We got a five calls from insurance today, I'm being referred to Medically Fragile Health Management which is basically my insurance's version of palliative care; We got a call to begin the set up today. I dont know how I'm supposed to feel about this. My mom definitely needs the help bc caring for me has become such a burden. And maybe they'll be able to help with the transfer of care between states. And maybe this is my close friend's way of helping me from heaven, I'd like to think it is. I know if she was still alive she would tell me to accept the support I need and that she loves me and is here for me through it. But on the flip side of things, I'm 22. I'm supposed to be out making questionable decisions for the plot, doing drinking games and karaoke. I'm supposed to be a kid, spending money on frivolous things and having a naively positive outlook on life. I'm not supposed to have a home health nurse and be completely bedbound and only kept alive via of a machine and a tube in my intestines. It's hard. As of lately, I've had numerous doctors tell me my case is far too complex for them and drop me as a patient. My team is giving up on me. My team who is supposed to be the ones saving my life are giving up on me. My team, like my body, are failing me. How is a 22 year old supposed to cope with their body completely failing and their team giving up on them? How is a 22 year old supposed to cope with dying? Is there even a way for a 22 year old, who is supposed to be so full of life, to cope with dying?

[janeaustenprotagonist]

holy FUCK stop shaking shane he is going to dizzy and fall and bust his head 💔💔

his brian will FUCKING MILKSHAKE. horrible.

[janeaustenprotagonist]

"do you need to go to the hospital?"

"I can take you in, are you sure you don't need to go to the hospital?"

"will you please tell me if you need to go to the hospital?"

"you look like a corpse."

"you don't look good sweetie."

"I don't want my baby girl to die."

-my mom, yesterday

[janeaustenprotagonist]

My mom basically told me she's preparing for the end-

My health has been on a steady decline since September. Which I avoided until it tried to end me in December when I had to move back in with my parents. It keeps getting worse. My mom is fighting for her life trying to keep me alive. Malnutrition is through the roof and don't get me started on my spine. I have spinal fluid coming out my nose. I've spent two solid months in the hospital, have had five surgeries, ten million scans, and what feels like a million new diagnoses. I am 90% bed bound.

We're moving in a couple months and I've been talking about my bedroom and how I want it decorated and set up. My whole life she's been all about saving money, she's miss budgeting and what's on sale. I showed her all the stuff I wanted for my room. She told me we're gonna go shopping when we get there; TJ Maxx, HomeGoods, IKEA, the works- we'll get everything to make my room how I want it. I said that she never takes us shopping to decorate our rooms. She said that I deserve a place that is decorated how I enjoy- unless I'm able to miraculously get better and be able to move out on my own, which she would love but is highly unlikely, then I'm going to be living with my parents until the end. Until. The. End.

I'm mourning the death of my close friend who had such a similar story to me. I'm mourning while my health is failing and doctors are giving up on me. I see myself in my friend who passed. This is what happened to her.

I'm watching my body fail and my life slip away.

[janeaustenprotagonist]

the inherent tension between the acronyms JFC, JFK, and KFC .......

[janeaustenprotagonist]

Not to sound pessimistic or nihilistic but I don't know if I can do this anymore I can't fight anymore I'm having drs drop me saying my case is too complicated left and right I feel like every breath is a fight with insurance I am in so much pain my spine alone is so severe that I can't function anymore. I'm lowkey thinking I may have spinal fluid coming out of my nose??? I can't do anything I am 90% bed bound my urine retention is so bad I'm concerned I'm gonna start having kidney issues idk what to do

[janeaustenprotagonist]

How am I supposed to cope with the death of my friend who died due to medical neglecence when I am dying due to medical neglecence

[janeaustenprotagonist]

you don't "hate kids," you hate being forced into a caretaking role.

you don't "hate kids," you hate censorship passed off as family values.

you don't "hate kids," you hate the constrictiveness of the nuclear family.

you don't "hate kids," you're just not used to occupying fully age diverse spaces so you're not used to the noise or the many different kinds of needs.

you don't "hate kids," most public spaces just aren't built for kids, and so the few kids you see are always uncomfortable and distressed.

you don't "hate kids," you hate the intense social rules assigned to kids and anyone who interacts with kids.

You don't "hate kids," you hate how society reproduces its most restrictive elements and how kids are powerless to resist it.

[janeaustenprotagonist]

About to me and who myself to the sun

I love you so much I hope we get reborn as housecats who sleep together like puzzle pieces

[janeaustenprotagonist]

pspsps butches with tattoos that will let me be their femme housewife who showers them with love as soon as they walk in the door pspsps

[janeaustenprotagonist]

shoutout to all my people with invisible disabilities

shoutout to people who don’t feel disabled enough

shoutout to people who have been denied care because they don’t look disabled

shoutout to people who thug it out every single day because the world doesnt stop when you’re disabled no matter how much you wish it would

shoutout to people with no diagnosis but still have symptoms because you don’t need a diagnosis to have symptoms

[janeaustenprotagonist]

chronic pain diagnoses are all like yeah we don't know what this is or why it happens. we also don't know how to treat it. good luck out there soldier

[janeaustenprotagonist]

Like a half hour after taking pain relief meds: oh actually it doesnt hurt anymore i probably didnt even need to take those

[janeaustenprotagonist]

let's talk-

so I'm moving either end of June or end of July to a whole new state. I am on Medicaid. I have heavily reliant on my Medicaid as I have a progressive chronic illness. I am afraid.

Yes, I am afraid of the Medicaid budget cuts. But that's not what this is about.

I am afraid. My spine symptoms are getting more and more severe. My ears sound like tv static, my eyes are blurry. I can't sit up, I can't. I am getting worse and worse. I am almost completely bedbound. I need an upright MRI and upright CT scan yesterday, but my hospital here doesn't have it. I can't go out of state, because of Medicaid, and they will claim they can treat it here despite them not wanting to diagnose it all. Not to mention the severe sepsis risk here and I am at high risk for sepsis. I literally had what was considered a life threatening emergency in Dec out of state and my insurance doesn't want to cover it. I don't know if I'm going to be able to make it. It'll be at least a 6 month buffer between moving and getting insurance and getting in to see the right doctors/specialists and getting the tests I need. With my connective tissue disease, you can show something as minor on a test, but feel the symptoms as if it's a severe case. I don't know if I'm gonna make it. I don't feel my bladder anymore. I am struggling. I do everything I can to move my neck and strengthen the muscles and it makes it worse. The pain and symptoms keep getting worse and worse. I don't know if I'm gonna make it physically. I am terrified.

[janeaustenprotagonist]

sorry i'm being an absent friend i'm being an absent self too

[janeaustenprotagonist]

ibuprofen should grow on bushes like wild berries

[janeaustenprotagonist]

my friend died.

she and I had such similar stories.

my heart is aching.

what do you mean I just have to keep going on with my life and she doesn't get to. it's not fair. she deserves it as much as me.

I miss my friend. I miss who we were when we met, so much healthier and naive to what's going come.

I've cried for hours today.

I remember when she reached out to me, saying my symptoms were similar to hers and that I should get certain tests. we bonded immediately. we became immediate friends. I miss her. I remember when I went into liver failure and disappeared from the face of the earth. she noticed. I posted something on snapchat and she texted me saying she'd be so worried and thought I had passed and that she's so grateful I'm alive. she deserves that. I want to wake up from this dream now, where my friend is alive. she did nothing to deserve what she went through. the medical system just failed her. she didn't deserve the pain she endured. I remember all the times we spent talking about Taylor swift. I remember all the surprise song nights.

yesterday I was thinking about her, I think about her everyday. but this time I thought, I haven't heard from her in a while, I need to check in on her. then this morning it was announced that she had passed yesterday. this isn't fair. life isn't fair.

it feels as if the doctors just gave up on her. like they didn't know what else to do so they just put her in hospice. it's not fair. she deserved better. she deserved people fighting to keep her alive, doctors fighting for answers. she deserves to be alive right now, I shouldn't be writing this. she should be alive. this isn't right. she's not supposed to be gone. she's supposed to be there, sending me silly snap videos and crocheting little foods into animals. she's supposed to be here talking about taylor swift. this isn't right. she's should be alive. this isn't fair. why does it have to be her? it shouldn't be her. it shouldn't be. she doesn't deserve this. she's such a light. a guiding light. she was the human epitome of light.

my health story is so similar to hers it scares me. we both have a progressive form of the same chronic disease, both with mirroring comorbidities and complications. the quote unquote "non-deadly disease." I'm watching my health go down the same path as hers. I'm watching doctors give up on me, telling me my case is too complicated. am I next? I'm severely malnourished, severely. my GI surgeon told my mom that my BMI is 13. my spine is going out and no one seems to know what to do. I'm dying. is it painful to die? will I still be in pain? will I still suffer? or is it easy, like breathing? will I see my friend again when I go? will she be there to greet me? I hope she will be there, we can crochet and figure skate and listen to Taylor Swift together.

my sweet friend,

I will see you again. I love you to the moon and to saturn. when I see you again, be stocked up on 8mm yarn and hooks and have all of Taylor's discography ready. I miss you.

rest easy.

I love you.

your summer sun