Invisible

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AS I SIT HERE FEELING LIKE I’M NOT ATTACHED TO MY BODY, LIKE I’M WATCHING MYSELF FROM THE OUTSIDE, BEING CRUSHED WITH THE EXHAUSTION AND WONDERING WHY IT’S SO MUCH WORSE TODAY, WHILE I TRY TO DECIDE IF I NEED MORE MEDICINE OR NOT, WHILE I TRY TO FIND THE ENERGY TO GET UP FOR SOME WATER, AND I REALIZE I CAN’T EVEN REMEMBER THE FIRST HALF OF TODAY BECAUSE IT’S JUST ONE GIANT BLUR, I’VE REALIZED HOW SAD IT IS THAT THE HATRED I HOLD FOR MY DISEASE IS SO INCREDIBLY STRONG.

I remember when I almost always felt normal. I could pull all nighters with my friends, I could dance for 5 hours a day without a problem, and if I was at the doctor it was for a dance injury or the occasional virus. I remember before I had ever known what it was like to lay in a hospital bed, surrounded by countless tubes with a machine helping me with each breath. I remember thinking I would live a long and healthy life. I was going to dance until my knees couldn’t keep up, I was going to enjoy high school and do well, I was going to stay skinny forever, I was going to have fun with friends on endless nights going on crazy adventures while my parents were sleeping. I was going to be a normal and happy teenager.
This is what was supposed to happen. 

But you can’t always get what you wish for.

Some people get a simple infection and they’re fine after a few days of antibiotics. See, that’s how I was at one point, too. And then one day during Nationals for my dance studio I told my mom I thought I may have a bladder infection. If you have ever had one of these b*tch infections you know my pain; the stuff sucks. So my doctor sent over a prescription, seen as though I’m not at home to actually go in to the office, and all was supposed to be well. Ha. See, the problem with this was I didn’t go in to get a culture so they couldn’t actually be certain that the antibiotic I was sent was the right one. We assumed it was, though, because my symptoms got better. Little did we know I wasn’t actually getting better, but worse as a matter of fact. Instead of healing itself my body was shutting down. I couldn’t feel my symptoms because I could no longer feel pain. And now the infection was spreading through my body like an unstoppable wildfire, damaging everything in it’s path as I continued through life completely oblivious.
My family and I took a family vacation back to Chicago a few weeks later so that we could experience the fun of the city, rather than just the sweaty dancers in a hotel ballroom for hours on end. Ask me if I remember this vacation; I don’t. But the pictures looked pretty cool.
I started my freshman year soon after. I went to two days of classes before staying home sick for about a week; probably mono or something. Nope. The day I decided to try and get back into the swing of things I made it up until lunch before I randomly started bawling my eyes out for no reason whatsoever. So, as the embarrassed little freshman I was, I went to the nurse so I could leave that hellhole and go home yet again. Not because I felt sick, but because I felt awkward. The nurse there let me leave after trying to console me for the friend issues or boy problems she assumed I was having. Not even, I didn’t have any problems in my life then.
By now the infection had severely damaged my body. The bladder infection had become a kidney infection, usually extremely painful infections that I just could not feel. My immune system could no longer keep up. Everything was shutting down, I was slipping away and I had no clue. I actually remember thinking to myself as I lay on my couch, “maybe this is what it feels like to die,” before laughing at myself for being so damn dramatic. I never would have guessed that actually, that was exactly what it felt like. It wasn’t until it took my mom 20 minutes to wake up her daughter, the girl who would jerk out of the deepest of sleep from the sound of a simple drawer shutting, that she knew something was wrong. I guess she decided to take me in and they admitted me to Children’s Mercy after seeing how low my blood pressure was. I don’t remember that, though. I was going into septic shock-the significant drop in blood pressure, leading to respiratory, heart, or organ failure and death. …I’m sorry, what? This was definitely not supposed to happen.
So there I was, finding out what it was like to lay in a hospital bed. To be surrounded by tubes and connected to a machine helping me with every breath. To have needles in both arms, in my hands, in my back. To watch my parents break down when they were told their precious daughter may not make it. But there was still hope-I got there just in time. If I come any later I was surely a goner. If I hadn’t gone home early that day because I was embarrassed of crying.
I should be thrilled that a few days later I was more cheerful and energized than ever. I was going to be released, that was a miracle. And at the time it did seem like it. That was before I knew how this experience would change me forever. In fact, it would cause the rest of my life to be a consistent struggle. Just spent trying to make it through every day, one at a time.
The first two years were the toughest. They said it can take your body up to a year for ones body to recover from shock. But what about when the year mark came around and I still wasn’t better? When I still didn’t go to school? When I could barely work with my homebound tutor for over an hour without feeling someone slowly drilling into my head? Or I had to get help just walking up the stairs because I didn’t have the energy to do it myself? What then? I wasn’t better, and I wasn’t getting better anytime soon. The reality of it is, I was never going to get “better.”
So yes, two years was full of this life. Every day spent on the couch with breaks for tutoring or meals. Sometimes I would go out with a friend so I could get fresh air. Not exactly the life of a sophomore in high school. I did have my good days, though. I made it to some drill team practices and a class a day here and there. Every time that happened I was just asked if I was a new student. Trying to explain that I wasn’t eventually got exhausting, especially when they asked what was wrong with me and still I didn’t have an answer.
Skipping ahead hundreds of appointments, endless searches for doctors who specialize in all different areas, weekly blood tests, etc. I found my endocrinologist. He’s basically God to me, now. He solved my mystery, and it only took two years to realize that he was the only one I ever needed to see in the first place.
We don’t know when exactly it started. Maybe I was born with it or maybe it developed later on in life. What we do know, though is that the stupid bladder infection I had fun with at nationals was just the thing I needed to set everything off. It was my bodies breaking point; the match that set the fire to come. So back to the point, it’s called Addisons Disease, the burden of my life. Involving your adrenal glands-those little circles that sit on top of your kidneys and produce cortisol-which basically make your body function. See, those with Addison’s have confused little shits as their adrenal glands who for some reason decided “hey, yeah I don’t feel like producing this hormone that makes you live even though I have nothing else to do.” So that’s that, I get my cortisol through a pill instead of these no good little shits. But hey at least I get it now, so all should be well, right?
Lol. Wrong.
Cortisol is a confusing little hormone. Your body knows when, and how much, to release based on a lot of factors. These include things like sleep, illness, stress is a huge one, and a few others. So for someone taking cortisol in a tablet you have to be the brain behind your own adrenal glands and figure this stuff out on your own. Feeling tired? You need more. Jittery? Less. Headache? More. Big test on Friday? Much more. When I say stress I mean any kind of stress both physical and mental. Ah, welcome to the lovely life of a teenager where stress is one of your best friends. Caught that KU plague? Just a simple sore throat or migraine? What about that essay that’s due in two hours you’re already stressing about? But you’re sick so you don’t have enough energy to write it. But then you’re gonna get a bad grade, you need to write it. But you can’t focus, you just need to sleep. Just take a few more pills you can do it. But what if you can’t? What if this plague never goes away? What if you’re never gonna get better? What if you end up in the hospital again? What happens if if you start going into a crisis and no one here knows what to do? Stress on stress causing more stress, keeping me up at night causing sleep deprivation, both combined causing more illness. A cold isn’t just a cold to me, a fight with a friend isn’t just a fight, a simple homework assignment isn’t just another paper. They’re all just one more thing triggering this stress that can’t seem to go away. It’s a never ending circle in which I can never escape.
Not only that but the fun side affects come with all of that as well. Every day I have at least one, just in case I forgot about my blessing that is Addison’s. Theres a large variety of these bad boys and let me tell you some of them are the most pointless, stupid things you could imagine. Starting with the more known symptoms like fatigue, headaches, weak immune system, nausea, dizziness, weakness, seizures, proneness to depression and anxiety, weight gain, inability to focus. And then going into things like “round face” (I mean seriously look at the shape of my face now and compare it to 8th grade and you’ll know why I hate looking in the mirror), hair loss, thin eyebrows, the extreme fatigue when the weather is overcast, random numbness in your limbs, hearing loss, salt cravings, brain fog and memory loss, and the main one-the Addisonian crisis.
A crisis can happen at anytime and any place. I’m constantly on edge and listening to my body with hope that I can catch one in time. The more extreme viruses and stress are the main causes of these, but sometimes it’s pretty random. Picture yourself sitting in class listening to a lecture, when all of a sudden you can no longer hear your professor speak. Instead your ears are filled with the banging of your rapid heart rate. You look down and see your hands begin to shake, so you set down your pencil and squeeze them together in your lap, hoping not to draw attention. Your vision begins to get blurry, you glance at the clock and then the door, wondering if you have the strength to stand and get out before you only get worse and you make a scene. You don’t. Realizing you forgot your medication in your room and trying to focus on your breathing so you can calm yourself down. You’re sweating, your beginning to panic. And thankfully after a few minutes, you begin going back to normal. You were lucky that time. But sometimes you’re not. What about that time when you were dancing in front of your entire high school and it happened then? When you were front and center with who knows how many eyes on you and all of a sudden your legs were no longer there. When you fall down in front of everyone and could barely get yourself back up as the numbness spreads. When the dizziness begins to set in even more and you can no longer breath. I don’t know how I got myself through that entire routine but I did, and everyone watched me struggle having no idea what was wrong with this weird chick. Yep, that one was my favorite.
Not every day is like that, though. I have my good days if I can really call them that. Sometimes I’m thankful, because I’m alive. But lately I’ve just been bitter. So freaking bitter. I’m bitter because I’m in college and I can’t stay up and hang out with everyone because I need at least 8 hours of sleep to function properly. I’m bitter because every day I have to act like I have all of this energy and happiness but that’s just what it is, an act. I’m bitter because I get offered special treatment and I don’t want to accept that I need it, that I am different. I may not have done great on my ACT, and maybe I would have done better if I agreed to get extra time, but this way feels more fair to me; it makes me feel like less of an outcast. I’m bitter because I missed two whole years of my life and because of that I don’t have the knowledge or experiences that I would have if this didn’t happen to me. I’m bitter because I don’t know what I did to deserve living my life with this disease. I’m bitter because I have to go through life being “careful.” I’m bitter because I can’t go one freaking day without being reminded in some way that I’m sick. I hate feeling like sick is the description of my life. I’m bitter because I’m suffering in silence. Okay, and this is where I become a hypocrite. I don’t like people to know about my disease and if they do I don’t emphasize how serious it is, because again I don’t want to be seen as different or fragile. But then I can continue and say I’m bitter that I have to worry about the fact that no one understands and no one knows how to help if something were to go wrong, which stresses me out once more. I’m bitter that people have to glance at my medical bracelet and wonder what’s wrong with me. I’m bitter that I never forget the smell of a doctors office. I’m bitter that I have a scar where the IV’s and blood tests go. I’m bitter because I’m depressed when people out there actually have a good reason to be. I’m bitter that I could have been some amazing dancer but I’ll never know now because I was forced to stop what I loved. I’m bitter because after not doing anything for two years straight, followed by medications and side effects and migraines that come with any sort of exercise I’ve developed an extreme hatred for my body. I’m bitter that a disease has made me feel ugly inside and out. I’m bitter that things like this make me feel so damn selfish. I’m bitter that I can no longer go along with my plan of be normal. I’m just very, very bitter.
(And wow I’m sorry for how negative this is.)
So, rant over, I’m continuing with my life. Dragging myself through each day and trying to pretend like this won’t last forever. Pretending everything is okay as I struggle with finding enough energy just to finish this post. (Which I’m sorry if theres any errors but honestly just thinking about the amount of energy it will take to review this is difficult). Continuing to act like I’m as normal as everyone else, to not really tell people about my disease because why flaunt something you despise about yourself? I don’t want what I have to be an excuse. I don’t want to have perks because of this devil inside me like it’s actually a good thing. So I’ll continue to get just as many sick days as everyone else, to take tests in the same amount of time as those around me, to put on my show of what I believe I would be like if only I were normal.
So I guess that day is not today, but maybe someday I will except the fact that in reality, I’m just not normal. Maybe someday, even if I can’t say I’m normal I can at least say that I’m okay with that. But again, that day just isn’t today. Because the reality of it is that living like this sucks. It really, really sucks.

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