so i had a really terrible doctors appointment while a was away from tumblr, i don’t think i explained it

my blood work came back and indicated that my lupus is pretty well controlled right now. my organs are safe. WOOT. but then my rheumatologist basically told me the pain was in my head. i stood up for myself for the first time in a doctor’s office and explained that i limp at the end of most days, my physical therapist who that same doctor prescribed suggested the cane, and my pain limits my daily functioning. 

he told me i probably shouldn’t be using a cane, that if i’m limping it’s not because i physically need to and there’s no reason i shouldn’t be jogging. “you’re a young lady, you should be exercising. i mean, you can continue physical therapy if you think it helps but you’re a young lady.”

he told me explicitly: you won’t become disabled

goddammit if i’m not already. thank GOD my physical therapist is an empathetic compassionate human who told me my dr. is ridiculous for these things. but i’ve never been more invalidated in my life.

and now the circle of blame and self loathing is so much more active. i constantly wonder how much of this illness i’m “faking.”

bad doctors can ruin everything. and i need a different physician if i want to apply for disability. which costs money i don’t have. maybe i should just get better. since it’s all in my head (ALSO EVEN IF IT WAS IN MY HEAD IT’S STILL DEBILITATING BUT IT’S NOT DAMMIT ALL TO HELL)

sorry i’m in a ranting illness mood.

1 week ago
6 notes

so if i bend over at ALL i puke. that’s an issue. i wasn’t even particularly nauseous but i dropped something on the floor and went to pick it up and like WOAH BODY CALM DOWN.

like are you fucking kidding me my boyfriend gets home in 9 hours couldn’t my body wait 12 hours to freak out just please

and i have pre period cramps and again i invite my body to wait just 12 fucking hours give me some time please please before i’m miserable

also i have a class tonight that i’ve missed way too often but now i’m a puke risk which is an issue

fuck this

this is what being chronically ill is

it’s a FINE HEALTHY DAY ruined by my body being a fickle prick. this is why i can’t have a full time job. why i can’t get through a semester. why i can’t just “take control of my own fucking destiny” or whatever people who want me to push through say

1 week ago
2 notes

adoption thoughts though

so like i said

i talked to a bunch of my maternal birth family today

it was good

but it opens old wounds

wounds i didn’t realize were there until i found them

i think i wanted my birth mother to be heartbroken over me. 

that’s not actually what i want for her. but i think in my search, on some emotional level i was hoping that she couldn’t live without me. which is so selfish and narcissistic but how can a mother live without her child? but i’m not her child. not really.

fuck i don’t know. 

i also was disappointed when i didn’t magically have everything in common with my birth family. or really anything  in common for that matter.

i know these were all unrealistic and selfish expectations, but i honestly didn’t even realize i had this hopes. it’s taken me a year of knowing my maternal family to understand what i was looking for.

i also think that looking for my birth family for my entire life made that search part of my identity. 

so after finding them i almost feel like i lost an essential part of myself

oh the irony

2 weeks ago
2 notes

i talked to my half brother today

it was just a quick facebook chat exchange but it was extremely cathartic.

i found my entire maternal birth family nearly a year ago. i haven’t met any of them, we’re all just friends on facebook (though my half-sister and i are friends on snap chat)  we’re all more like pen pals. we catch up on each others’ whereabouts and wellbeing every few months.

but at first when i found them it felt like a whirlwind. i found my birthmother and i was overwhelmed with emotions. it was the end to a 21 year search. i didn’t realize the emotional doors i had just thrown open. and i realized how different i am from them all.

now i’m no longer looking for pieces of myself in them. i understand that that isn’t the relationship we have. it may never be the relationship we have. and that’s okay.

but there are three more people in the world that i’m rooting for, and i believe they’re rooting for me. and that’s cathartic. that’s some kind of full circle. there’s so much more to it, but it’s something.

2 weeks ago
1 note

tomorrow night is the last night i have to sleep without you

i can do this

2 weeks ago
1 note

fellow illness warriors! i want to write a thing. please reblog with your opinions.

how do you guys feel about comfort/hurt fiction and “sick lit?”

i find myself frustrated by sick, frail, dizzy, fragile girls on film and i can’t pinpoint exactly why.

think The Fault in Our Stars, My Sister’s Keeper, A Walk To Remember (ugh) 

anyone else annoyed by these stories and their portrayals of illness? is it the simplification of sickness that is frustrating? or the romantic and heroic notion? reblog so your other warrior followers see this and tell me what you think please!

2 weeks ago
0 notes
Mmm Yeah? Mmm Nope.

Honestly, I was kind of waiting for a feminist with some traction to tackle this song. But it’s been a couple months now and no one is angry. Are you kidding me?

The song [Mmm Yeah] is just plain stupid. It’s bad. It’s lazy. It is not good.

But it’s also street harassment to a melody. Every single time it comes on the radio I get angrier and angrier about it. Let’s look at the lyrics, shall we?

[Link to full piece]

2 weeks ago
1 note

when i hurt like this i’m usually clinging to you. my head’s on your chest and you’re reading the new yorker. and you’re running your hands through my hair, and it hurts a little less.

2 weeks ago
0 notes
We’ve got to be able to get along with people we sincerely passionately disagree with.

Andrew Sullivan on Colbert Report, no less. Andrew Sullivan says politics have no place in the work place.

Yup. It is entirely acceptable to ask for queer people to work with homophobes that think they don’t deserve basic human rights. Are you freaking kidding me? It is not merely passionate disagreement when one party is focused on oppressing another. WHITE CIS MEN can be so wrong. Even if they’re queer.

1 week ago
0 notes

bf and i share a bed again in 24 hours thank goodness 

2 weeks ago
1 note

Helianthus

I used to dream of sunflowers
Now their roots sit in my hands
My gloves
My rings
My flowers grow
In my palms, my own earth stands
You ask why I have stained my skin
My hands have not been stained
I refuse to say
They’re soiled at all
My hands have simply changed
My garden is not like my dreams
These are a different seed
But I’m still here
With sunflowers
And that is all I need
2 weeks ago
0 notes

It’s Tuesday night there and he gets home Wednesday night so he’s closer to being home than I think? But it’s still Tuesday morning here and I don’t see him until Wednesday night THEMINDREELS

2 weeks ago
0 notes
Mary Caroline: NaPoWriMo: Day Seven

i wrote a love poem to my cane for today’s prompt and i don’t hate it so maybe go give it a read yeah?

2 weeks ago
2 notes

my room is a shrine to the great audrey hepburn

breathethedownbow do you approve??

2 weeks ago
3 notes

if you find this

if you find this know that you will see the more broken parts of me

it’s not that i hide them from you

i don’t hide anything from you

but your voice is louder than the voices of doubt that always stay near me

so this is where i run when i’m not in your arms

i’m not ashamed of these broken parts of me but i do not want you to try and take them on

i am an open book to you

i would tell you anything

but please let it come from me

don’t look through these pages and try to make sense of me

although i don’t think you would

and if you’re curious ask me anything

just not here

i love you madly

but this is my own

2 weeks ago
1 note