#nf 1

[adhd-chaos-queen]

So, yesterday i talked to my parents about how i'm feeling at the moment and how my mental health is doing...

And then my mom told me she thinks i'm maybe having a hidden depression and my dad just nodded...

And i'm like: ? Is it really that bad?

Anyways, i really need to see a therapist soon, because:

My ADHD got worse

RSD is kickin

Discalculia messes me up

I think i could have NVLD or ASD or some shit like that, but i don't wanna self diagnose

I can't stop thinking about my neurofibromatoisis and the fact that that people could see the fibromas in my face or that the ones in my brain could maybe go cancerous and i need to make a MRI appointment and one in the NF clinic and i'm freakin scared.

I'm chubby and small, i think i'm kinda ugly and no one will ever love me... yeah, my self esteem is shitty af

The fact that i think i have a really weird version if anxiety (Like, i have no problem with calling people on the phone or asking for directions or shit, but as soon as there is a slightly above average amount of people in the supermarket or i have to sit between 2 people in class i feel trapped and uncomfortable... does this even make sense?)

I have almost no friends

I'm way to sensitive

My parents think i might have depressions

I have exams next year and im sTrEsSeD

I'm almost always getting sad as soon as it gets colder and darker outside, daylight savings messes up my sleep sedule and i hate it when i have to go to work in the dark and then also coming home in the dark.

I'm turning 20 in less than 2 months and i just wonder how i managed to survive for 2 decades without dying because of my stupidness...

Also 2020 is shit...

[elliebear1988]

When I heard the amazingly talented @naomigscott was cast as Jasmine I thought of these photos and of a positive memory from a bad time in my life. I have neurofibromatosis type 1 and needed a bone fusion to strengthen my neck. Which is why I am in a halo. And I want to wish her to break a leg. And that past me and me now believes in you.

[nights-nonsensical-ramblings]

hmmm I’m not sure if I’m noticing more splotches cuz they’ve been on my mind lately or if I’m actually getting more. Cuz a lot of the newer ones I’ve spotted are either a slight shade darker than the surrounding skin smaller than my fingernail in some odd spot I have to twist to see or some combination of the three

[revesdautomobiles]

Farman NF 1 limousine 1928 - Cité de l'automobile, Collection Schlumpf 2020

La Farman NF est un véhicule de la marque française Farman produite de 1927 à 1931. Ce sera le second et dernier modèle de la marque après l'A6. Elle est équipée d'un moteur 6 cylindres de 7065 cm3 développant 126 cv avec vitesse maximale de 130 km/h. Farman, comme beaucoup de constructeurs ...

[darknesshayz]

As if I get these assessments :(. I only have the one. NF sucks.

Neurofibromatosis type 1 - Treatment

There is currently no cure for neurofibromatosis type 1 (NF1), so management involves regular monitoring and treatment for any problems as a

[darknesshayz]

This women is brave and awesome. Thanks for sharing your story Gail, it means a lot to those that suffer with this condition.

Don’t look at us as if we are monsters or have a contagious disease, we don’t. Get to know us, let us embrace you with the love that we give back, let us educate you, don’t live life in ignorance, live life being kind to one another.

I am Hayley, and I have a mild from of Neurofibromatosis, I used to pretend online I was perfect, that I was something I wasnt, I could pretend to not have NF online which I did do, but people wasn’t seeing the real me, now I’m more me and I embrace what I have, it’ll never go away. I learnt that being real and honest is better then living a lie.

The lyrics to Santa Monica go:

But on the telephone line I am anyone,

I am anything I want to be,

I could be a supermodel or Norman Mailer,

And you wouldn't know the difference,

On the telephone line, I am any height,

I am any agent I want to be,

I could be a caped crusader, or Space invader,

And you would know the difference Or would you?

I could be anything I wanted to be, but in the end I choose to be me, I chose to be Hayley/Hayz/Ozii/whatever you knew me or know me as now, I choose talk about my condition now to those that ask because we have the choice to teach those that ask questions, remember it’s us that have the ability and power to teach others, to show them the real and true us.

[darknesshayz]

It's May, it's that time of year again.... #neurofibromatosisawarenessmonth (found this on FB and thought to share)

[darknesshayz]

The secret I'm hiding under my baggy clothes

Blogger Arooj Aftab explains why wearing oversized clothes is more than just a fashion statement for her.

Arooj Aftab you are amazing. Beautiful and amazing