starliit

[starliit]

On the note of this blog [starliit] - I'm going to be putting it on an indefinite hiatus. As of right now, while my mood is doing great, I've made myself aware that some things about Kaveh and Kaveh's mindset hit a little far too close to home for me and right now I don't think that's a very good things to be around. So for the time being, I won't be returning to this blog. I love yall so much and appreciate the time and community you gave me!

so anyway i'm alive

Turns out one of the new medicines I was on for my brain condition was causing a bunch of bad things to happen and also took my mood for a dark spin. I spent the past month in/out of the psych hospital mostly but now I'm off that medication and feeling a lot better. We're no longer having as many seizures, and not as violent seizures either and my mood is doing lots lots better. Thanks for any well wishes anyone sent, they're appreciated.

[starliit]

I know I don't really have to explain anything but I still feel the need to explain what's going on to y'all that are interested in knowing.

CW: Talk about seizures

Starting off - I have Idiopathic Intracranial Hypertension, basically too much csf pressure builds up in my brain & spine for some unknown reason. It causes a slew of problems, most notably – the non-epileptic seizures I’ve been having on & off for the past two years.

Usually these seizures are pretty “gentle” (can’t believe I’m using this term to describe them) – they cause my muscles to “seize up” and my breathing to stop for a few seconds. They last no longer than 10-15 seconds and they’re over. I’m awake the entire time and I can return to what I was doing as soon as it’s over, including talking.

They initially thought these were psychogenic but it became obvious they were connected to the pressures, because they would get worse the higher the pressure became and go away for a time after my lumbar punctures.  

Then by the 28th of June I was having seizures almost every other hour of the day. If I wasn’t sleeping, I was seizing. I was desperately trying to get my doctor and the ER to give me an LP which was not going well. Yall probably saw me complaining a lot about not getting that LP, bc I was seizing CONSTANTLY. Bc there's no medicine for non-epileptic seizures.

On the 12th of July, my seizures changed to something much more violent and more similar to a tonic-clonic episode, however, since I’m still not losing consciousness and the movements are different, they still believe they are psychogenic. They did finally give me the LP that night. And I went an entire day without any seizures and I thought I was better.

Unfortunately, the violent seizures started back again and have been going pretty regularly until about yesterday. [7/19] I would upload a video if I didn't think it'd be too graphic for some to see. But if you've ever seen someone have a tonic-clonic seizure, imagine that or a child throwing themselves down on the floor and having a tantrum quite honestly - idk why it also looks like that sometimes. It hurts. I hate it. It's scary. And I'm horrendously conscious during all of it.

At this point in time I’m waiting until the beginning of august to see my neuro and new psych to figure things out. No one has a clue whats happening.

I’m at my wit’s end because I don’t know what to do. I don’t know what would cause it if it WAS psychiatric, but they refuse to do any further workup to say its epileptic.

Bear with me please. I don't know when I'll be back to roleplay.   

[starliit]

Everything took a turn for the worse and I'm not doing so hot again so I'm gonna be away for the time being- love yall.

[starliit]

Hey kids we're feeling pretty good today - yesterday was the one of the worst days of my life but I got the lumbar puncture I've been needing finally so the worst of my shit is subsided for the time being again. Can't wait until my neuro is back from vacation so i can ruin his life with my 6 ER visits.

[starliit]

im this close to putting an eye patch on - for the aesthetic.

[starliit]

I am so sorry to the birthday boy.

[starliit]

i've been to the hospital almost every night this week between the seizures, blackouts and the dimming vision in my eye and they still refuse to do a new lumbar puncture but at the very lease they said the pressures in my eye are fine so its all neurological thats cool!

[starliit]

I apologize for continued absence - my health just doesnt agree with me. That is all. I'm trying not to continue to complain but its just not going well. And my neuro and I are at odds with each other right no and eughghghghghggh anyway hopefully I'll be back to writing soon I'm so sorry for the wait everyone. Thank you for your patience. <3

[starliit]

update: apparantly it was a pharmacy mix up. someone misheard me or something and tried to order the wrong medicine that i was on months ago rather than the new one smh. anyway i might get my meds tonight after huzzah

[starliit]

me to the universe: is my life a joke to you?

I'm finally free from the hospital - again.

They found a medicine that allowed me to keep food down and a possilble diagnosis.

Go to pharmacy - EVERY WALMART PHARMACY IS OUT OF THAT MEDICATION. Okay is cool That's fine. w/e. I'll just transfer it to another pharmacy.

Call the other pharmacy - they have it yeah? Cool. Gonna transfer! They call back -

The doctor has - for some reason - rescinded the medication script. So now I'm at risk of going back to step one again and I....WHAT??? IS HAPPENING???

Anyway.

Help.

[starliit]

#NOVASTRAE // and at the end of the day, you think to yourself 'my body is a product being sold on the shelf!' // a study in: grief, understanding, revenge, and finding oneself after life altering trauma.

a genshin impact && hsr oc. written by danny. 21+. promo temp. by @honeypsd

[starliit]

Oh I didn't mention I got readmitted to the hospital. But yeah its....its not going well yall.

[starliit]

Hey all - I'm out of the hospital but I am not doing well. The hospital can't figure out what's going on and is sending me to get worked up by my GI again which is on friday.

As of right now I'll probably be sparse as I just genuinely don't feel like I can do much of anything. We'll see but no expectations to be had thank you <3 Love yall!

[starliit]

Guess who ended up admitted to the hospital :3

[starliit]

I love beading so much thanks

[starliit]

Thought the hospital & stopping my meds had solved my tummy issues but they have not. Got a GI appt scheduled for monday though yippee. Gross on main below the cut :

ive got really bad blood in my stool and my tummy hurts so much I just HNNNGG why

[starliit]

me: i'm gonna do a craft table this weekend everyone: YOU WERE JUST IN THE HOSPITAL AGAIN? me: SHHHH.