Current Events > I get to Zoom with my gf in about an hour

(+) Yeah! (+)

tl;dr about her condition - got diagnosed with anti-NMDA receptor encephalitis (Brain on Fire disease) and been in the hospital for 2.5 weeks now. Havent been able to talk to or see her since then.

But today, I should be able to Zoom her in the hospital and even though she likely wont be able to respond (or even be awake), the fact I get to talk to and see her again just makes me so damn happy. Was gonna try a couple minutes ago but the nurses are busy with her right now so gonna try at noon.
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Can I get a non tldr version explaining what brain on fire disease is

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HighOnSolar posted...

Can I get a non tldr version explaining what brain on fire disease is

your immune system attacks your brain and it looks like the person is going psychotic/has a psychiatric disease

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AdrianBeterson posted...

your immune system attacks your brain and it looks like the person is going psychotic/has a psychiatric disease

jesus

is there a cure for that? Or at least pills you can take to keep it away?

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god damn. Yeah what he said

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littlebro07 posted...

jesus

is there a cure for that? Or at least pills you can take to keep it away?

Yeah, its super treatable with steroids. The hard part is the diagnosis but once thats established, its a very manageable condition

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littlebro07 posted...

jesus

is there a cure for that? Or at least pills you can take to keep it away?

The girl who wrote the Brain on Fire book had a full recovery and she went through it 11/12 years ago. Theres a movie adaption on Netflix that goes through what she went though.

But yeah, as the others said, its treatable once diagnosed, but is often diagnosed as a psychotic disease until they can do lumbar punctures to confirm the encephalitis.
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Or not

Apparently somethings going on and shes a little unstable or something, idk, and I cant right now. Just texted her mom cause the nurse said I should talk to her about an update so....


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shockthemonkey posted...

Fuck man, thats rough as hell. I hope you get to see her soon and that shes able to make a full recovery, much love to you both.

Thanks.

I might try after work, but I get home roughly at 10:30 so I just felt like that was really late to be trying to Zoom someone in the hospital. Especially when shes likely to not be aware/awake during the day.

idk, was feeling really good the past couple days cause I met her parents and it sounded like she was taking a step forward and now it seems like it went backward again. Or at the least stagnated.

idk, I also fear that maybe the nurse talked to her about me while checking up on her and doing the rounds and maybe something went crazy for her, idk. Pessimistic me is coming out at times.
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Her mom texted back.

Apparently she was progressing a decent amount yesterday (actually moving around a little and whatnot) but she stopped all that today and the nurses are worried about that so theyre doing another CAT scan and put her back on a ventilator for that.


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And apparently she had a bad stroke and might not wake up.

Fade me fam. Just end me (in a completely non-suicidal way mods, just really raw with emotion right now).
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Fuck.

(wish i could say something else, but that's all I got)

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LostForest posted...

Fuck.

(wish i could say something else, but that's all I got)

Yeah, same here.
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sktgamer_13dude posted...

tl;dr about her condition - got diagnosed with anti-NMDA receptor encephalitis (Brain on Fire disease)

HighOnSolar posted...

Can I get a non tldr version explaining what brain on fire disease is

AdrianBeterson posted...

your immune system attacks your brain and it looks like the person is going psychotic/has a psychiatric disease

AdrianBeterson posted...

Yeah, its super treatable with steroids. The hard part is the diagnosis but once thats established, its a very manageable condition

That was a mini rollercoaster.

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Lost_All_Senses posted...

That was a mini rollercoaster.

Yeah read post 12 for the next dip in the rollercoaster.
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very sorry for what you're going through, tc, and hoping for the best.

shockthemonkey posted...

Fuck dude. Im so sorry. If you believe in any deities Ill pray to em tonight.

Thanks man. Im not very religious, but Ive definitely said some prayers over the past couple weeks.

Omnislasher posted...

very sorry for what you're going through, tc, and hoping for the best.

Thanks. Me too, but its hard to stay positive right now.
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sktgamer_13dude posted...

Yeah read post 12 for the next dip in the rollercoaster.

Damn :(. I liked the happier ending

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Hey man, sounds like you're doing your best to be loving and supportive. You sound like a great SO.

You did say one thing that bothers me though:

idk, I also fear that maybe the nurse talked to her about me while checking up on her and doing the rounds and maybe something went crazy for her, idk. Pessimistic me is coming out at times.

In no way, shape, or form, is this your fault. Her body is attacking her and it's horrible, but when she does start to recover please try not to blame yourself. That'll just cause unnecessary and undeserved stress on you both.

Also I don't know about everywhere, but CA has some free phone numbers that are kinda secret that I can hook you up with that help with stress and if you need life advice or someone to vent to. Pm me if you want them.

Keep your chin up, I'm sure she'll appreciate how much you care and are trying.

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I'm sorry man

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Really sorry :(

kirbyakaZ posted...

Hey man, sounds like you're doing your best to be loving and supportive. You sound like a great SO.

You did say one thing that bothers me though:

In no way, shape, or form, is this your fault. Her body is attacking her and it's horrible, but when she does start to recover please try not to blame yourself. That'll just cause unnecessary and undeserved stress on you both.

Also I don't know about everywhere, but CA has some free phone numbers that are kinda secret that I can hook you up with that help with stress and if you need life advice or someone to vent to. Pm me if you want them.

Keep your chin up, I'm sure she'll appreciate how much you care and are trying.

Yeah I know I probably didnt do anything, but pessimistic me comes out at my most down.

And thanks for all the well wishes everyone. Literally the only thing keeping me positive is that and the fact that shes at an amazing hospital. Its just really, really grim right now.
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shockthemonkey posted...

Ive got a lot of hope for her

At least one of us does.



Its so hard to stay positive right now, sorry if I sound like a dick and pessimistic and whatnot.
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It's understandable that you're struggling to remain positive, just please try not to blame yourself!

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Yeah I moved past that when I heard about the stroke.

Before knowing that, I thought maybe she tried to do something she shouldnt because she heard my name or like it overstimulated her or something. Not saying that I directly caused anything I guess, idk.

I just dont have the will to do anything right now. My mind just goes straight to the worse case scenario because thats what were staring at now. Like, her mom straight up said she might not wake up to me.
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Had to open her skull to relieve pressure and theyre doing another CAT scan and a MRI.

Wont know much till the morning most likely. Gonna be a long night
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I came in here to make a Zenon: Girl of the 21st Century but that'd be a huge dick move right now.

I hope it goes well for her, man.

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any disease that ends with tis is essentially a lifestyle disease, Ive got one too, its terrible when untreated but after a while you learn how to manage it, you learn to develop healthier habits to avoid flare ups and youre mostly good

best of luck TC I hope shes gonna be fine

shockthemonkey posted...

Fuck man, its gonna be crazy when you two are telling your kids about this in 15 years

Thanks for the kind words. Honestly.

I just dont know what to feel or how to feel right now besides pain and sadness. Like, this is someone who asked for months to come over to my place (alone) to just play video games. This shit doesnt happen to me. No girl has ever asked more than once to come over. And this one did. Every day. Ive never felt so loved by anyone in my life before and I would deadass tell my entire family that to their face (already said that to my mom).

I hope shell get better and like I said, shes at an amazing hospital thatll take amazing care of her, but I just cant even right now. Everything I think is just bad thoughts and pessimism.
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Yeah.

The main reason why I kept saying no at first was cause I was her boss. She eventually left at the end of last semester and we became official about 2 weeks before she left. Probably actually started dating around the beginning of the semester, but we didnt put labels or anything on it until she was almost out.

Like, if I would have taken her up at first (or second or third or...), wed be going on like 9ish months or so, depending on when we actually would have become official. Like shit, its been 13 months since the first time she kissed me after driving her home from a game night. And then she did it again later that week when she wasnt drunk to show it wasnt just the alcohol.
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Hey TC, I hope she gets better. I know it's tough but stay strong.

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I'm hoping for the best

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Sounds like a wonderful person. She's at an amazing hospital, right TC? Try to put your faith in the doctors.
You mentioned you aren't a religious person, but I hope you don't mind I say I prayer for her tonight.

Some actual advice: try to focus on something you can do for her. Something that she'll need when she gets back.
Can you help her mom/parents with bills?
Does she need her room painted?
Does her oil need changing?

Find as many things you can, both big and little, and work with her parents to try and solve them. Yes Covid is a thing right now and normally I call people not social distancing jerks, but here I think we can all make an exception. Go and do whatever you can to make her life easier for when she can come home.

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You sound like a good dude TC, I hope everything goes well for her and you two can get back to being a happy couple. This sounds painful, and I cannot begin to imagine what you're going through.

To her getting better, may Freyja come through help her heal.

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kirbyakaZ posted...

Sounds like a wonderful person. She's at an amazing hospital, right TC? Try to put your faith in the doctors.
You mentioned you aren't a religious person, but I hope you don't mind I say I prayer for her tonight.

Some actual advice: try to focus on something you can do for her. Something that she'll need when she gets back.
Can you help her mom/parents with bills?
Does she need her room painted?
Does her oil need changing?

Find as many things you can, both big and little, and work with her parents to try and solve them. Yes Covid is a thing right now and normally I call people not social distancing jerks, but here I think we can all make an exception. Go and do whatever you can to make her life easier for when she can come home.

Some good advice tbh. The only thing that sucks is that her parents are roughly 3 hours away, as is most of her stuff, and her hospital is about 5 hours away. I know Ive told her mom multiple times that if she needs anything, to let me know and Ill do it.

And again, thanks for all the well wishes and prayers guys. It is helping and making me feel a little better.

And yeah, shes an amazing person. Probably a dream girl for most here; loves video games, doesnt mind going outside for camping/a day hike/the beach but nothing amazingly strenuous, and loves food. Like, shes one of those girls thatll throw down on steak and potatoes and all the fixings. Also the kind of person to give you their coat if you dont have one or some money if you need it. She always hated that I paid for everything and always wanted to help (sometimes we went Dutch and shed pay).
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My condolences, TC. I hope things get better for her.

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wow holy shit dude. hope things turn out okay
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Thanks again for the well wishes.

I really hope that I can wake up to a shes progressing and things are looking better update or at the very least, shes stable and not getting worse. Ill take literally anything that can be contrived as positive.
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This is insane.
I feel so inspired by your love for your girlfriend, and I will pray that her condition improves. Remember to be strong for her, and please dont beat yourself up over things you have no control over.

Returning_CEmen posted...

This is insane.
I feel so inspired by your love for your girlfriend, and I will pray that her condition improves. Remember to be strong for her, and please dont beat yourself up over things you have no control over.

Thanks.

It means a lot that you could tell my love for her from text when I just met her parents on Saturday to talk and get to meet each other. Hopefully that means they got that from our meeting.
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Hope the best, and get some sleep. That's not to encourage you to take things lightly, but the stress in still life will hurt more than help.

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ROOTFayth posted...

any disease that ends with tis is essentially a lifestyle disease, Ive got one too, its terrible when untreated but after a while you learn how to manage it, you learn to develop healthier habits to avoid flare ups and youre mostly good

best of luck TC I hope shes gonna be fine

In medical terminology "-itis" means "inflammation of."

Some are chronic, some not.

Like pinkeye is conjuctivitis, "inflammation of the conjunctiva" and goes away, colitis is the colon and doesn't but is manageable.

Hope things are going well this morning, TC.

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Dont have an update yet and idk what to text her mom, if anything, to get one. When she posted on FB about the stroke (she texted me before that about it), she said to not text or call. I want to respect that, but like....I also want to know.


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sktgamer_13dude posted...

Dont have an update yet and idk what to text her mom, if anything, to get one. When she posted on FB about the stroke (she texted me before that about it), she said to not text or call. I want to respect that, but like....I also want to know.

Yeah I can imagine how frustrating and scary that must be. Here's hoping for best

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