#however I feel like eating out my entire fridge and I simply cannot afford that in this economy

[toomuchcronch]

So in a few days I’ll have officially been on T for a month which is super exciting!!! The biggest changes I’ve noticed so far are that I smell like shit and I’m super hungry 💀💀💀💀

[metronomeihear]

Please Listen

I’m not sure how many of you know this, and I’m not sure how many of you care, but I’m sick.

I have a genetic disorder called CIRS that makes me sensitive to things in my environment, things like mold. A few years ago, I was exposed to black mold growing in my bedroom, mold that got there as a result of the bathroom above my room having a leak. My illness causes all sorts of havoc on my body, including swelling in my brain, inflammation in my joints and ribs, and imbalances in my hormones. As a result, I have days where I’m in so much pain where I can’t breathe (though those are thankfully far and few between), issues with long term and short term memory, and what has been dubbed “brain fog.” (Essentially it’s making really stupid and strange decisions that seem logical at the time, but in reality aren’t. Things like putting your cell phone in the fridge instead of the milk. You know you’re supposed to put something in the fridge, it just doesn’t quite click that it’s supposed to be the milk and not your phone). 

My entire family has this illness. It’s a strange twist of fate that both my parents have the genes, and thus all my siblings and I have it too. Of the five of us, my mother easily has it the worst. She got ill before I was born, and got worse when I was very young, and I can remember a period of my life where I was lucky if I saw her outside of her room more than once every few weeks. She is better now that she’s getting proper treatment, but she’s still the most ill. 

After her, I am probably the most sick person in my family. I have issues with my hands when I try to type for long periods of time, or if I try to do things like hold a game controller for more than a few hours. My ribs have flare ups, usually minor flare ups that aren’t much more than an annoyance (though they have gotten bad enough that I couldn’t do much more than lay there and hope the pain meds would kick in soon). I get headaches often and I’m prone to migraines. I am physically incapable of standing for more than 10 minutes at a time without having to sit down. I have issues with remembering names, places, things that have been asked of me, and things that I have done before. I can’t remember what I had for dinner yesterday, and I once couldn’t remembering the name of my first boyfriend, not even three months after we broke up. I am incapable of telling how much time has passed since an incident occurred, prone to dizzy spells, and often make poor decisions due to brain fog. Despite all of this, I have been told that I do not look sick.

I am not asking for pity. I am not asking you do donate to a fund, or to message a politician, or start a war.

 I have a story to tell and I am asking for you to listen.

My mother once told me a story about the time she had gall stones. I don’t remember the specifics of the story, and the specifics don’t truly matter in this case, but the story went something like this:

My mother woke one night from a bout of really intense pain. This was before I was born, back when it was just my mother and my father living just across the street from my grandparents. She woke up next to my father, who was still sleeping, and she just breathed. She breathed through the pain until it went away, and then went back to sleep. That was the end of it. Only the pain kept coming back. It would always fade after a short while, so whenever it happened, by mother would just breathe through it until it did. My father was worried, however, and insisted my mother go to a doctor. They described the incidents to the doctor, and the doctor prescribed some pain meds and sent my mother home. “It’s just gas,” he said, “It will pass.” Only it didn’t. Eventually, my mother was hit by a bout of pain so intense my father drove her to the emergency room, where they found out that the pain was a result of my mother passing gall stones.

Gall stones have been described as one of the most painful things a person can ever experience. There have been people who, when they pass them, cannot do much more than scream. My mother, on the other hand, simply got up and continued with her day. This was because she was already used to pain.

It’s not because my father is abusive or anything like that--that couldn’t be farther from the truth. It’s that genetic illness I mentioned earlier. That was the cause of her pain, though at the time everyone thought it was the result of Arthritis, rather than CIRS. She was used enough to pain that passing gall stones simply didn’t bother her until she tried to pass one that was too large for her to do so. 

It’s truly ridiculous what a person can get used to. I saw a study once that tested how long it would take for a person to get used to seeing the entire world upside down. It took them only three days before they were functioning normally. It was the same after the glasses they were wearing to flip their view was taken off. Only three days to get used to your vision being flipped.

Because my mother was as used to pain as she was, the doctor she visited misdiagnosed her. Because I am as used to pain as I am, and because my illness does not affect my appearance, people do not believe I am sick. Not unless I’m having a really bad day, where everything hurts, and even then I might not be believed. 

I'm in college. At the college I attend, there is an office for the disabled and I went there to get forms to fill out to help me make it through the semester. I was feeling fairly good that day, so I left my cane at home, and as a result the people working in that office did not believe I was sick. They didn’t say anything, but I could see the disbelief in their faces, and when I looked back after leaving, I saw them shooting glances at me and whispering. Other than that, I have been told, to my face, that I do not look sick.

And why would I? I have good days and bad days. I rarely leave my home anymore, mostly because I can’t walk very far and there isn’t much for me to do that doesn't involve a lot of walking or being in a building that potentially has mold in it. When I’m out and about and I don’t have my cane with me, there’s no sign that I’m ill. No sign. But I am. And if you looked at my home, you’d see that.

We have a counter in the kitchen that’s dedicated solely to supplements and medicine. We have boxes upon boxes of syringes and saline and needles and medicine. We have an oxygen machine because sometimes our brains don’t get enough so we need the extra help. We take pills at every meal, pills after we wake up, and pills to go to sleep. We eat special diets because our stomachs can’t handle regular, commercial food. We attend online schools because the last time that I attended a normal school, there was an issue with the air vents in my math classroom that triggered my illness so bad that I was down for two days after entering that room. I was pulled from school after that incident.

I compare it to mental illnesses in my head sometimes. To things like depression. I know a lot about mental illnesses, too, because that’s something my family suffers from as well. My brother is autistic. My sister has ADHD. Both my mother and I suffer from chronic depression. We look perfectly fine, and so often people just don’t believe us when we say that we feel these things, when in reality it’s all very real.

I live in fear that one day our insurance won’t be enough to cover the medicine we need. Already it’s approaching that point. We have to focus on what we can treat and what we can’t for no other reason than the insurance can’t cover everything and we can’t afford to pay out of pocket. I live in America, and I really hate the American medical pricing, because everything is ridiculously over priced and it’s literately something that’s killing my family slowly. I live in fear that one day one of my siblings will be exposed to something really bad and get just as sick as I am, or worse, just as sick as my mother is. I live in fear that my father will go to work in a building that’s mold infested, and come home every day sicker than the last because he doesn’t have a choice. He’s been out of the job for months now, and tonight we celebrated because he finally found one again, just as we were starting to wonder if we were going to lose our house. It doesn’t matter if the building he’s going to work in now might be mold infested, because we don’t have a choice. This is the only job he can have. The only job in months of searching that would accept him. And if he raises a fuss, they can drop him just like that. That’s what the last place he worked at did, after all.

(Fuck you, Intel. Seriously, fuck you.)

I’m not sure why I’m writing this out. Maybe it’s because that’s how I deal with things. I write. I write poetry dedicated to sunsets that sound like suicide notes. I write stories were the main character burned to death in her last life, and suffers from PTSD as a result. I write stories were boys walk to their deaths and nothing can stop them. I write stories were people suffer and hurt and struggle and fail. I write long rants that I never post anywhere because I’m afraid of what people would say if they read them. I write and I write and I write until it doesn’t hurt anymore.

I write stories were those people pick themselves back up. I write stories were the outcasts find family and friends. I write stories where the nightmares that haunt them become easier to bare because a friend is there when they wake up. I write stories where the suicidal boy finds someone to catch them. I write stories were people, normal people just like me, find home and happiness and safety. I write long rants to give to my parents to say the things I can’t bring myself to physically open my moth and say out loud. Things like how sometimes I feel like I’m falling apart trying to keep everything together when it seems like everything is crashing down around me. Things like how frustrating it is to not know how to help my brother with his homework because he thinks differently than I do. Things like how much it hurts to hear that my sister can’t force herself to say “I love you,” and “Good night,” when I go to greet her before bed. 

I love my life. I love my family more than I can say and I have never been more grateful for anything than how loving and supportive they are of me and my interests. I love the friends I have made on this website, as few and far between as they are, and I love that I’m finding people to talk to on Discord who share my interests. I love that the people I meet are so supportive of me, who call me strong for being able to talk and write about when I was suicidal when there are days when I feel like the weakest person on the planet. I have been to Yosemite and seen a deer walk right up to my table, so close I could almost touch it. I have seen water falls and sunrises on mountains and the ocean from high up in a plane. I have visited my grandparents in another country half way across the world to celebrate their 80th birthday, and walked a beach in Hawaii at night, my feet in water that felt so warm. I never get hateful reviews on my stories, the worst review I’ve ever gotten on a story I’ve written being a short comment about hating yaoi. I’ve been thanked for the things I’ve written, been told I brought them hope with what I’ve written. “Writing this chapter was an act of bravery I’ll never forget.”  A reviewer once wrote that in a chapter I wrote about a suicidal character, and I remember just staring at that review and smiling so hard my cheeks hurt. I remember getting a review once, only two words long, that read “Thank you,” and bursting out crying because I’d had a really shitty day up to that point and that review--I’m not sure how to describe it. It made my day, made me think that everything I am doing, all the things I am struggling with, are worth it, and that feeling is something priceless, something precious. 

And then there’s today. Today has not been one of my good days. I woke up with minor aches and pains, pain that was worse than what I usually feel on a day to day basis, but nothing too bad. I posted another chapter of a drabble series I’m working on, a funny series that’s something like 90% crack with how ridiculous it is. I went on with my day, browsed through tumblr and rebloged everything that caught my eye. I worked on school work, got distracted, and worked on it some more. My pain got worse however, and it hurts to type right now. I’ve taken my pain meds, and they’ve taken the edge off of things, but it still hurts. My family noticed this. 

Today we were celebrating. My dad finally got a job, so we were having ribs and freshly dug up sweet potato and red wine. It was delicious, but it hurt for me to get up and out of the chair, and I couldn’t cut the meat properly without a steak knife because my hands hurt too much. After we were finished eating, and I put my plate on the counter to be washed, my father opened his arms for a hug, and he told me he was sorry.

He said to me, “I’m sorry you’re in so much pain.” I told him it wasn’t his fault. And he said to me, “Yes it is. And I’m sorry.”

And I wanted to take him by the shoulders and shake him until he understood that it wasn’t his fault, that it wasn’t anyone's fault, and that the only reason this family was still going was because he has been working so hard for all of us, when anyone else would have left a long, long time ago.

I am frustrated. I am so, so frustrated.

I don’t know why I’m writing this. I don’t know why I’m posting this. It’s not going to change the fact that I’m sick. It’s not going to change the fact that our insurance sucks and the leader of the country I live in wants to take away even that. It’s not going to change the fact that my father feels guilty for something that’s not his fault, and it’s not going to change any of the problems my family faces. 

But I want to. I want people to know that there are people like me out there, who suffer for reasons beyond their control. I want people to know that not every person you speak to has a perfect life, and someone who looks healthy could be dying right in front of you. I want people to consider people like me when they vote, to not throw us under the bus just because we’re a minority, or because our voices aren’t loud enough, or because our issues aren’t as public and well known as other issues are.

I want people to listen to me when I say I’m sick.