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I'm sorry I disappeared

On August 26th, my friend gave birth to her beautiful baby boy, who I will refer to as C. Within 8 hours they were back at the hospital because he turned blue. He's been on a ventilator ever since and has been transferred twice to bigger hospitals that were better equipped for his condition. On September 11th, they finally received a diagnosis. He has an extremely rare mitochondrial disorder that they have requested to keep to themselves. I heard this afternoon.

As some of you may know, I can't remember if I've shared this, in February 2010 I was diagnosed with cervical cancer. In March, I gave birth to a baby girl that I will refer to as N. She lived for 42 minutes, after I was induced at 19 weeks. The cancer would have killed us both.

Today, when I heard about C, it was upsetting. Obviously I feel for his mother and father, I care for them deeply. I didn't realize until 1am that this situation had more of an impact on me than I originally thought. My heart breaks for C and his parents, the same way it broke for N and her father.

As of yet, they have not been ready to talk in depth with anyone, but I'm trying to be there for them as much as I can. Unfortunately, my health won't allow for me to travel to them at this time.

On top of all this, K's father had spinal surgery about 3 weeks ago due to a fractured vertebra caused by a tumor growing on his lung. They have since found second tumor on his lung and mets to his brain. This week he had 17 staples removed and started radiation.

It's been a very long few months. I'm so grateful for everyone who has been supportive of all of these incredibly strong people and I'm very glad I've gotten to know each of them so well. Hopefully I won't be quite so MIA from here on.

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Sometimes Life is Worth the Pain

Don’t ever let anyone tell you that you should’ve done less because you’re now in pain.

As a disabled person, I’m often faced with the choice of enjoying myself now and paying for it later, or missing out on the things that are important to me.

Sometimes I know going into something that it will cause a flare leaving me out of commission for a day or three. I need to determine whether it’s worth that or not.

Able bodied people take this for granted but us disabled folks weigh this constantly.

For all my disabled peeps out there just remember: sometimes life is worth the flare.

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self care for when you hit rock bottom

i fucking hate self care posts made by neurotypicals so here’s one from someone who Actually Gets It

-can’t shower or take a bath? me either. dry shampoo can make your hair look and feel cleaner, and baby wipes or makeup wipes work great to get the top layer of grime off your skin.

-can’t wash your sheets and make your bed? i feel you. push your blankets out of the way and shake the crumbs off your sheet. it will at least be a bit more comfortable.

-can’t even change out of your dirty pajamas? been there. hit yourself with some febreeze and a lint roller. if you can, brush your hair. if you can’t, hair ties and bobby pins are fantastic.

-can’t make anything to eat? same. if you can, there’s no shame in ordering food. in fact, it’s probably better you eat something rather than go hungry. if you can’t, try and find something that comes pre-made or takes minimal effort to make. at the very least, drink some water.

can’t respond to messages or reach out for help? yeah, i get that. set an alarm for a few hours from now and respond to any messages you need to once you’ve given yourself time to prepare. if they’re Important Messages that need Professional Responses, you can find fill-in-the-blank format rough drafts on google. as far as personal messages go, don’t feel bad for sending a mass “I’m sorry, I’m in a personal emergency right now. I’ll get back to you as soon as I can.” response to everyone.

-can’t even sleep because it’s so bad? asmr videos always knock me out, personally, but i also watch a lot of bob ross. just try to find something quiet and soothing to use as background noise and take your mind off it, or at least give you a more peaceful environment to think about it.

-can’t go for a walk/drive? try opening the blinds or curtains. you’re still exposing yourself to the outside world. baby steps. (i also play animal crossing or sims; it may be virtual but fuck it. i went on a walk.)

-can’t go into work/school? let people know. let your coworkers or classmates know it’s an emergency and you can’t make it. give yourself up to two days, but then you have to go back. ask to have your work emailed to you so you know what you missed.

-can’t brush your teeth and wash your face? makeup or baby wipes and gum or mouthwash. don’t let yourself physically rot bc you’re rotting emotionally.

-remember that you’ve been here before. if you survived then you can survive now. that’s what this is about- survival. you don’t have to be living your Best Life. right now, it’s more than enough that you’re alive.

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Dead ass scary. Society taught men to behave like this. We need to do something.

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Hello lovely people who follow me for some reason, the boys of PRAT are having a meet the artist night. Super funny dudes who just happen to be in my general region. Spread this like aids in the 80's

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depression after years of having it isn’t even sadness it’s just being exhausted and being allowed one (1) emotion a week and sometimes your brain is like “die” and you’re like “shut up brad”

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person with disabilities? no. person with diss abilities. i have a gift for clever but biting comments & also my knees don’t work

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depression after years of having it isn’t even sadness it’s just being exhausted and being allowed one (1) emotion a week and sometimes your brain is like “die” and you’re like “shut up brad”

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i can’t even express to y’all how beautiful dark skin is. i’m not trying to fetishize it or sexualize it or anything, but dark skin is just so beautiful, and so poppin, and it breaks my heart to see gorgeous black and brown people who hate the color of their skin. y’all are beautiful.

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Please, bring more attention to this and all the missing girls! Every girl could get this kind of message, this is really dangerous! The media doesn’t want to talk about it, so we are forced to act independently!

I can name about 5 white girls that got international attention when they went missing… everyday teenage girls whose names will forever be in my head from seeing their images everywhere over the years! But black girls can go missing and the worldwide media can look the other way!

The media can give 24 hours coverage of riots but when it comes to these missing black and latino girls they don’t want to cover it.

Smh.. I’m tired…

BOOST THIS!

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Her name was Vanessa Raghubar and she was only 22 years old.

#SayHerName

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Me for the past lifetime and a half.

nice

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this guy went OFF and I completely agree with everything he’s saying. someone give him an award.

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Fuck you Morbid Metals and your shitty circles made of lies...

For my birthday, I decided to get myself a new septum ring. It was adorable and super comfortable. However, a few weeks ago my nose started getting sore. The ring I purchased was a Morbid Metals product that claimed to be surgical steel, which is the only metal I'll use due to poor reactions with piercings in the past. TONIGHT, it started to hurt, like the ring was made of barbed wire. When I removed it, it has turned green with oxidation. I have never been so angry in my life. Hopefully, my nose will heal without me having to let the hole close.

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My reasons for doing things:

1. Spite 2. The Aesthetic

That’s it.

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Reblog and you might save someone’s life, especially with all our Black Girls going missing #ProtectBlackGirls #SaveLife