phoenix-nerd

[phoenix-nerd]

The pillars of despair! 🩸

These pictures are from day 1 of Magwest! Had an amazing time at this convention and hopefully I'll be back next year!

The pictures were taken by the amazing @renzuthelens on Instagram and the Junko Enoshima cosplay is none other than my amazing best friend @smolsanicos on Instagram as well! Thank you all so much!

[phoenix-nerd]

Follow my New Account

this one has been dead and I have no idea what to use it for anymore. Trying to actually utilize my socials and build a following. Trying to actually show my interests and enjoy myself.

That being said, my new account is @phoenixnerdcos

[phoenix-nerd]

I completely understand this. The first time I flared up, I was bound to a wheelchair for a bit since it took me months to get a diagnosis and treatment. I had to act like I was fine during that entire time but I was in so much pain and there was so much blood. It was scary stuff and if I didn't act like I was okay and it was going to get better, then it would've just made everything worse for me and those around me. 🤷‍♂️🤷‍♂️

Something I haven't seen spoken about a lot is the psychological impact of being chronically ill and experiencing horrific symptoms, and knowing that literally no one can help you.

I could call a doctor, but I already know what's wrong. There's literally nothing they can do for me. And I can't afford to go just for reassurance.

I'm just in a flare and sometimes it's Like This. And you just have to swallow symptoms that live in the nightmares of well people, because you can't just have an emotional breakdown every time you're in a flare.

So I'm in horrible pain and distress, and I can't call for help, because no one can help me, and I have to act like it's fine, so I don't worry other people who get Very Upset that I can't just Fix It

And there's just a deep psychological burden in that, that I don't think well and able bodied people ever really think about.

[phoenix-nerd]

So a little bit of a vent, I know I don't post on here often but I didn't know where else to put it. Now from here forward, I'm going to leave a trigger warning for the rest of this text: Disease, Near Death, Starvation, Bleeding, general hospital stuff, health-related issues, talk of death, mortality, etc.

For context, I've been struggling with my health for the past couple of years. I never really brought it up to anyone and I tried avoiding it to the best of my ability. I had no energy and was tired almost all the time. My stomach was in constant pain and I could never figure out why. That was up until a few months ago when I experienced my first flare-up. I started bleeding internally and I couldn't stomach anything. I couldn't eat and I didn't eat for a total of 34 days. I lost around 38 pounds in just a few weeks, I lost my ability to walk more than three feet without collapsing, I was vomiting and excreting blood, I developed a Bartholin's cyst, and so many more symptoms. I couldn't even ride in the car without being in constant pain from the movement. It got to the point that I could feel my body dying. I went to E.R. over 8 times, each time they were never helpful and asked invading questions relating to my past traumas. I even got turned away at the door of the main hospital I was a patient for. It wasn't until the last visit that I was finally hospitalized and sent to a hospital in a different city. They ran several tests on me and for my first week there I was essentially comatose. During my whole stay, I was hooked up to I.V.s and had to get a PICC line put in my arm. I had to get put under and had some very invasive operations done on me which I am not comfortable enough to disclose to anyone. After they disclosed to me that I have Crohn's disease. That's why I didn't have the energy to talk or hang out with anyone, that's why it hurt to eat and hurt to not, that's why certain foods and spices upset my body more than others. They also told me that during a flare-up, I get open sores all over the inside of my digestive system. From my mouth to the end, and because I wasn't hospitalized sooner, one of these sores tore open to another organ. I'm actually going to schedule surgery soon and terrified of it and want it to be over already. They also told me that Crohns has no cure. I relearned how to walk, I had to learn how to stomach solid food again, and I had to regain some weight. I was hospitalized for a little over half a month. I now also have to go in every month to get an I.V. infusion so this hopefully never happens again but it's never certain as flare-ups can be completely random. Crohns is also a disease that can worsen over time so I can't help but worry it'll happen or that my body may reject my treatment. I also discovered that I'm 10x more likely at risk to develop cancer and a mutation of the BRCA gene runs in my family, so while nothing confirmed as that'll all be in the future, it's still a worry for me that I might develop ovarian cancer as my life goes on. All in all, I'm terrified of the future and scared of dying. I don't want to be alone when this happens but I don't want to hurt people if I leave too soon. I know the reality of that might be slimmer in reality than in my head, but I can't help but worry. It also doesn't help that lately my hair's been falling out. I've been distant with people for so long because I wanted them to leave me thinking I was a bad friend than ever forcing them to face the trauma of losing a friend early. I know that one day I will pay the toll to the river Styx (if my family can even remember I'm pagan and to pay my way) and drink from the river Lethe, but I'm scared of Thanatos collecting my soul before I could fully live the life I want. I know I likely won't die of this disease, however, I can't but worry and feel like my world is crashing around me. If you've gotten this far, thank you. I needed to get this out of my system. This will be my first and last post like this. So the rest of my page will be filled with whatever fandom I'm into or whatever fanfic I'm reading. So yeah, more memes instead of depressing stuff like this lmao. 

[phoenix-nerd]

Nine Inch Nails performing at Madison Square Garden, New York 1994, © Al Pereira [X]

[phoenix-nerd]

[phoenix-nerd]

Chapter 4

Prologue | Previous | Next 

AN: The long awaited fourth chapter is finally here! Thank y’all for your patience and support. And I hope y’all will enjoy! 

Warning(s): None

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