#brainmachinebroke

it’s so easy to say things like “I hate my brain” when I am experiencing a bad symptom from my condition. I have most definitely said it countless times on this blog when describing the things I go through. it’s so easy to fall into such a negative headspace when dealing with a chronic illness. that being said, I still can’t help but feel little excited butterflies in my tummy when I think about the fact I have literal images of my own BRAIN!!! how cool is that??? technology, man!!!!

I might be a little bit of a brain nerd due to my fascination with psychology and neurology in general. if I had the funds to go to school and become a neurologist, best believe I would do it in a heartbeat. it has been a dream job of mine before and after my diagnosis. I nerd out like crazy every time I see my own MRI scans.

with that being said, here are some sick pictures of my silly little mushy squishy brain. I love her no matter what she puts me through. <3

as the title states, I sadly had to get the dreaded blood patch today that I was trying so hard to avoid.

I went to the hospital today at 3pm and left at 9pm. I knew the moment I heard that pop in my back Friday night that I was fucked. so I begrudgingly dragged myself to the ER and asked for the stupid stinky blood patch.

(for anyone who doesn’t know what an epidural blood patch is, it’s a procedure that is done to someone who is experiencing a cerebral spinal fluid leak. these leaks are caused by a hole in the dura, which is a part of your spine that holds cerebral spinal fluid. holes in the dura are caused by things like an epidural during birth or, in my case, a spinal tap. it doesn’t happen to everyone, but sadly, this would make the second time for me.)

this time, I was able to bring my mom for moral support which I couldn’t do last time, so I am eternally grateful for that. the very first nurse I talked to was a little rude and it took over an hour just to be given fluids, which was also a little ridiculous. but thank god I was sent two wonderful anesthesiologists that came from the heavens above. last time, I was given some random old guy who didn’t care how much pain I was in. this time however, I had these two wonderful woman that believed me when I said I needed extra numbing (thank you to my red hair gene for that one!) and did a good job at making me feel strong when I was sobbing in pain, gripping onto my mom for dear life because MAN is it the most painful fucking thing ever. But I did it. it felt like a fiery stab to my lower back but I MADE IT MFERS!!!!!

Now I am home, belly full of yummy chipotle (would’ve been chik fil a but it’s fucking SUNDAY!!!!) and laying in my bed headache free. I do have a majorly sore back, though. But that’s to be expected.

Overall, I am hoping this signifies the end of the suffering these last couple weeks has given me. I am tired of missing work and being isolated in my bedroom. I want to post spiritual stuff damn it!! Not constant negative health shit. Oh well.

onwards and upwards or something like that

-venus

I think yesterday was cursed, to be honest. everything kept going wrong. I woke up early as fuck to do the spinal tap, which I have been dreading since I got it scheduled. to summarize, the last time I got my spinal tap done, the puncture hole from the needle didn’t close properly and I ended up having a spinal fluid leak that could only be fixed by going back to the hospital and getting the most painful procedure ever done with no anesthesia. I promised myself that, for this spinal tap, I was going to do everything in my power to make sure I never have to do that bullshit again.

despite being at an entirely different hospital, I ended up with the same doctor that did my procedure last time. that was kinda cool. this spinal tap hurt more than the last one if I’m honest. With the needle still in my spine, he forced the table I was laying on to be basically completely upright so I was standing and he kept telling me to tighten my stomach muscles, which made the needle hit a nerve connected to my left leg and it was extremely painful. The needle stayed in my back for like… 35 minutes. It seemed like he was taking vial after vial of fluid, and I felt myself getting lightheaded. eventually it was over, though, and I went to call my dad to come get me because I wasn’t allowed to go home without another person. btw, I never see my dad. We have a very strange relationship and the last time I even saw him was in March or February, I can’t remember. I texted him a week ago asking for a ride home since my mom worked and he didn’t, and he agreed. I was excited to see him. however, he told me he couldn’t come after all because he was currently at the emergency vet with his dog. I helped raise that dog when it was a puppy, so of course I was sad and concerned about her now. I was bummed he couldn’t come get me, but it was what it was. I messaged my mom to come from work and take me home, and she agreed. But as she is leaving, because the universe absolutely loves playing the worst jokes on me, she sees a dog get hit by a car and is so emotional from the situation that she tells me she cannot drive to me. At this point, the headache from the spinal tap is starting to form. I’ve been waiting to go home for 20+ minutes at this point, and the Uber home is $35. It sounds selfish to be upset in the moment, but I can’t lie. I was infuriated. I was mad I couldn’t get home without paying for an Uber that expensive with money I don’t have. I was mad I couldn’t see my dad. I was mad my dad’s dog was sick. I was mad that my spine just got messed with and I was mad I had a brain disease. All the emotions hit and I was outside of the hospital holding back tears while sitting on a bench outside. I decided I needed to get my shit together and just Uber home with my credit card, and the cherry on top occurs. The closest Uber driver is 20 minutes away. So I wait the agonizing 20 minutes, trying to make sure I don’t move wrong at any point and keeping pressure on the puncture sight where the needle was in my back. Uber guy eventually shows up, but he parks across the fucking campus. I tell him I really cannot walk too far (my legs were weak and my head was throbbing) and I need him to come just a bit closer. He has the audacity to fucking ARGUE WITH ME. it took me an additional 8 minutes to convince him to drive 100ft closer to me because I can’t go up stairs and walk long distances and he wants to be fucking difficult.

whatever. I make it home safe. I’m exhausted. I’m comforting my mom irl and my dad over text while I barely have enough energy in my body to comfort myself. The dog that was hit ends up being okay somehow (my mom found out on some random Facebook page for lost pets in our area) and my dad’s dog is doing better. I finally get some rest at home.

Results come in several hours later. My pressure is… lower??? Not only that, it’s SIGNIFICANTLY lower. It went from 25 to 19, which means I technically fall outside the guidelines of having IIH. so…. What the fuck is happening? How is my pressure that low but my optic nerves are still completely fucked up? How am I in excruciating pain all the time and my pressure is somehow LOWER??? all of these questions are swarming my head, and I want to be excited because YAY POSSIBLE REMISSION!! but…. It just does not align with recent events. I sent a message to my neurologist but it’s the weekend and I highly doubt she will see it til Monday. I am completely confused and trying very hard to remain optimistic that maybe…Just maybe… that small part of me that thought that my symptoms were caused by my condition getting better rather than worse…. was possibly right? the very thing that I thought was impossible?

well, this wouldn’t be a Venus diary entry if something crazy was shit didn’t happen to end a cursed day like this. I took my long ass nap, ate a yummy dinner, and was proud of myself for being extra careful and preventing a spinal fluid leak this time. That is, until the loudest and most terrifying sounding car accident happens right outside my house. It was straight impact, no brakes, and instantly I heard screaming from a young girl. I just completely forgot about my ailment and ran outside, oblivious to my own pain. I don’t know if the adrenaline kicked in or what, but I didn’t feel any pain while I was running to the cars. I just heard the girl screaming and it made me morph into some other version of myself that only knew I needed to help this girl. On the way there some crackhead on a bike told me to not bother helping and that they should all have died, so I spent 30 seconds yelling at this guy and telling him to fuck off which I honestly shouldn’t have even bothered doing. It was a hit and run, and everyone was okay physically. But this poor 13/14 year old girl was just traumatized and sobbing, and I instantly went over to her and just held her. She was so worked up that she kept almost passing out, so I went down with her, and I felt the pull right to my spine. I basically, in that moment, came to terms with the fact that I most definitely reopened the puncture hole in my spine. But honestly, I’d go through a painful procedure again if it means this young girl was gonna be okay and comforted. you win some you lose some.

I waited with this girl until her grandma showed up to come get her and take her home, and I walked back to my apartment. My back was aching. My head was throbbing. I felt like a shell of myself at that point, processing the last hour and what occurred. Again, an absolutely cursed day. Everyone around me is going through it.

But I made it to the next day, I feel a lot more optimistic today. I am hoping I get answers soon. I am praying I don’t have to miss work on Monday, because I really really cannot afford to do so. wish me luck. sending good vibes to everyone who read this far. what a strange week it’s been.

lately my symptoms have increased drastically in the past month. I am so exhausted, I am lightheaded, and I am constantly confused and irritable. I have missed work multiple days these past couple weeks just because of how hard it is for me to just function at this point. I will be getting some answers this week which I am grateful for, but I am frustrated with how much work I am missing. On top of that, I’ve been stuck editing the same video that consists of footage from legit 4 and a half months ago from a game no one gives a fuck about anymore but I am so bad at deleting footage because I hate wasting my own content. I have been struggling to keep my room clean. I am starting to fall into a deep depression because of how isolated and alone I feel right now. some my coworkers seem frustrated with how much work I’m missing, and part of me feels bad for them, but a stronger part of me resents them for not understanding that I am truly trying so hard. I keep telling myself I need to prioritize my health and my body right now, but my work and my lifestyle doesn’t really accommodate that. my protected paid leave only works 2 days out of each month. I’m starting to worry that I’m going to be fired from the work I keep missing. I feel like I’m stuck living in a world not meant for me. I just want to sleep and I want to take a break from everything so I can heal. I want so badly to request a month off of work or SOMETHING just to rest, rest, rest. I don’t even know if that’s something I’d be allowed to do…. certainly not paid, that's for sure.

It feels like the moment I clock into work, I am consumed with such an overwhelming feeling of demotivation and exhaustion. Just thinking about something feels like a chore. I can't tell if its my ADHD or my brain fog/fatigue. I don't know what anything is anymore. All of my symptoms are starting to blur together into a giant clusterfuck of misery. There is a song repeating the same lyric over and over at work right now as I am typing this, saying: "all we can do is keep breathing." It feels like I am being comforted and taunted at the same time. I have no choice to just endure everything. I am so irritable and bitter and I want to hide away from everyone and everything. I feel like my sickness turns me into a mean soulless monster that snaps at innocent people and hides in the corner away from everybody.

6/23/24

Last week I had to go to the hospital for the first time since last year. I was talking to a patient at work when suddenly the room was spinning and I couldn’t think or talk. It was terrifying. I was at the hospital for 6 hours or so and, unsurprisingly, left without any scans done or blood work taken (but a pregnancy test of course was) because the doctor literally told me he had no idea what was wrong with me.

that’s the reality with rare brain conditions. a regular ER doctor will do a stroke test on me, get negative results, and send me home. I wish my neurologist could be there with me during these visits because I swear to god they have no idea what they’re dealing with every time I get there. I hate hospitals and I hate my stupid brain.

When I was finally able to talk to my neuro, she told me she was upset with the way they handled my situation. because of this, she ordered me another spinal tap. if you read my last post, the last time I got a spinal tap I ended up in the ER due to a cerebral spinal fluid leak. I have a feeling I’m going to have to endure that painful epidural blood patch again and miss even more work, making barely fucking any money and hating my body for rebelling against me again. my neuro promised she would tell them to sedate me this time but I feel like they’re going to decline to give it to me. I just wish I could be normal. I have missed so much work this week since my hospital visit, too. no one ever talks about the harrowing guilt you feel in the pit of your stomach when you have to tell your boss you can’t work. I feel like I’m disappointing everyone. I feel like no one believes me.

I’m so tired and I feel so sick. I’m still expected to leave my bed and function despite all of this. The urge I have to seclude myself away from all of mankind just for a week and completely rest…. Just enough time to get the rest my body craves right now.

I don’t want Friday to come. I just want to be healed.

I was diagnosed with my condition (idiopathic intracranial hypertension) in June of 2023. prior to my diagnosis, starting around 2020, I was frequently seeing my doctor due to symptoms I was experiencing and couldn’t explain. I was diagnosed with physical and psychiatric disorders that my doctor tried to say were causing these symptoms, and I still agree that those diagnoses I received exist in addition to my brain condition, but they weren’t explaining certain other symptoms I was having whatsoever. I was having constant nausea, I was gaining weight despite eating hardly anything at all (partially caused by my PCOS too. I cannot win.), I was sleeping 16 hours a day back when I was still in school and not working, I was lightheaded whenever I had to bend down or crouch, eye pain, visual flashes of light or blurry vision, whooshing sounds in my ears, and I was getting constant headaches at the same place in the back of my skull that I could not get rid of with OTC pain medication. the diagnoses I received were ADHD, depression, OCD, sleep apnea, IBS, and PCOS to name a few. Some nurses and doctors even told me I was just sleeping a lot because I was young, which was upsetting. At one point in 2021, I went through a very traumatic experience that affected my mental health severely. I was struggling with mental health problems on top of my physical symptoms, and it got so bad that I started to experience frequent tachycardia (fast heartbeat during rest) and was wearing a heart monitor for a while. But despite all of this, I was stumping every specialist and doctor that I saw.

That was until June 2023. I had a regular routine, not at all special annual eye appointment one day after a shift at work. I was excited for this appointment because I had been wanting to get a new prescription for my glasses. It started off as any other regular eye appointment until we got to the eye dilation and examination. I remember my optometrist shining a light into my eyes, using a microscope to check them. In the past, this part of my eye exam took about 30 seconds maximum. However, she was going back and forth, almost like she was stumped by something she was seeing. She would look at one eye and hold very still, watching it intensely. After an agonizing 2 minutes or so, she stops and grabs a color blindness test. I was confused and a little worried, but kept my thoughts to myself as she had me answer some questions. I wasn’t colorblind, and she looked even more stumped. She then took a second to think, turned around and said, “I’m gonna order some additional tests for your eyes, it seems that your optic nerves are swollen,” and off she went without further explanation.

I started getting nauseous at this point with nerves, confused as to what that meant and what testing she would need to do. I took the waiting period as a chance to Google what swollen optic nerves were and I really wish I didn’t. The first result was brain tumor. I felt my heart drop to my stomach. Next, it was MS (multiple sclerosis). I quickly closed the tab and held back tears, hoping that it was just a misunderstanding and that the imaging would prove that nothing was wrong.

I did a couple eye checks, more excruciating time passes, and I’m back in the eye exam room waiting for my optometrist to come back. I will never forget the way she came into the room, took a very deep sigh, and sat down in her chair. She scooted closer to me, leaned in and told me “I am so sorry, but we need for you to go across the street to the ER. I really want for you to have an emergency MRI. I am concerned about the pressure inside your head and I want to figure out why your optic nerves are swollen. They know you are coming.” I started tearing up but held it all in, and she escorted me to my mom who was in the waiting room. And thank god she was there, because usually I always go to my appointments alone. But today I needed a ride there, and thank GOD that I did. As soon as I saw my mom, I burst into tears. I don’t remember a whole lot of this part, but I remember I told her a brief summary of what happened and just kept repeating to her “something is really wrong, I have such a bad feeling about this” the entire way to the hospital.

I have been to this hospital before for several minor things. The wait times at this hospital are known for being absolutely god awful. But I knew it was serious when they called me back within seconds of me checking in. Instantly they were asking me a bunch of questions, doing neurological tests on me (touch your finger to your nose, walk in a straight line, follow my finger with your eyes, etc). The worst part is that the doctor I was seeing was emotionless and blunt. I asked if there was any way this could be something else, and he just straight up looked at me and said, “brain tumor usually.” I became so sick with anxiety that they gave me some sort of medication to calm me down, but it did absolutely nothing. I was petrified.

By now it was time for my MRI. I will admit, I can be very dramatic. But I have the worst health anxiety of all time. The moment I was put into the machine for my MRI and forced to lay completely still for 45 minutes, all I could do was think about what I was missing out on. If this turns out to be something lethal, I would never be a mother. That thought was haunting me that entire ER visit. I have wanted to be a mother since I was a child. I carried baby dolls with me every where that I went as a child. I have read parenting books and articles as a teenager despite having no plans to have children. I babysat and nannied just to practice my caretaking skills. Being a mother is my dream, and all I could think about the entire time was the possibility of me never being able to be one. I thought about my childhood cat that may outlive me. I thought about my dream of being a content creator and how I would never have the chance to fulfill it. I started thinking about all the things I was scared to do throughout my life and how much I would give to do those things. You don’t realize how important your life is to you until you think it’s going to be taken away from you.

To save you the dramatics and get to the point, they ended up ruling out a brain tumor completely as well as MS or any brain swelling. So that of course begged the question of WTF is it? And that was when I officially got the diagnosis of IIH.

Idiopathic = “happens for no known medical reason”

Intracranial = “inside the head”

Hypertension = “high pressure”

My body is unable to properly drain my cerebral spinal fluid, causing it to build up in my head and put intense pressure on my brain and optic nerves (hence the swelling.) this condition used to be called Pseudotumor Cerebri because all symptoms mimic a brain tumor. I am at a high risk of losing my vision due to my optic nerve swelling. But the part that sucks the most? It’s incurable. Remission is a possibility, of course, but you can never fully get rid of it.

I was told I needed to get a spinal tap, a procedure where they take a needle and stick it into your spine to drain the fluid and check the pressure inside your head. Don’t even get me STARTED on how awful that was (and I just learned I have to do it again next week….;-; ) The spinal tap itself isn’t that bad, but I had an uncommon reaction to the procedure that absolutely sucked. When you get a spinal tap done, your body is supposed to create a “clot” or “plug” naturally (like it does when you get your blood drawn, for example) to stop the fluid from leaking out of your spine. My body thought it would be absolutely awesome to just… not do that. Because of this, several days later, I was leaking spinal fluid out of my damn spine TOO QUICKLY which at first felt great but quickly started to cause the worst headache I’ve ever had ever in my life. My brain was essentially “sagging” in my head from lack of fluid surrounding my brain. So there I went, back to the hospital I go! At 4 in the fucking morning. By myself. Trying not to puke inside the Uber from pain.

And get this! The only solution besides enduring the headache and holding completely still for a week in hopes of your body creating the clot in your spine? An epidural blood patch. What is that, you ask? The most barbaric procedure of all fucking time. Basically, the take this giant vial and fill it with blood straight from your arm. Then, they take that blood and, using another giant needle, stick it right into your spine and putting the blood where the hole is. The purpose of doing this is to create a natural blood clot to close the hole, stopping the leak. But here’s the thing….you can’t really numb your spine. You can numb everything around it, but that’s about it. So trust me when I tell you that the feeling of someone forcing blood into your spine….it felt like someone is lighting a knife on fire and stabbing you in the lower back. The entire time you can feel this sensation from the nerves being touched, and the best way I can describe it is like lava dripping down your back and into your booty cheeks (lmao). I wish I asked to be sedated. Honest to god, I hope I never experience it again. But despite that traumatizing experience, it worked instantly and I felt relief immediately. So there’s that, I guess.

Fast forward to now, I’m still dealing with this condition. Treatment has been rocky. Lots of trial and error with medication, new side effects creeping up, so on and so forth. I have a recent update regarding my condition I plan on sharing soon, so keep an eye out for that. But other than that, you’re all caught up! Welcome to my silly little brain condition and constant madness.

If you genuinely read this far, I wish I could hug you so hard. It means the world to me that someone takes the time to read my story, especially being the chronic yapper that I am. Thanks for sticking around, sending you my love :)