Stuck in Reverse.

When you try your best but you don't succeed

When you get what you want but not what you need

When you feel so tired but you can't sleep

Stuck in reverse

And the tears come streaming down your face

When you lose something you can't replace

When you love someone but it goes to waste

Could it be worse?

I'm about to break. I can't pretend to be happy anymore.

Never Satisfied.

I hate when people just seem never satisfied. Desires seem to overcome every single person these days. They complain they don't have a job, then they complain they have too many hours when they finally get one. They complain they want to be a in a relationship, but then when they're in one they just complain about how it's going too fast, or too slow. They say they want to get away from everything, but then when they do, they claim they miss the past. They say they want to lose 5 pounds, but then the next week they say they meant 5 pounds a week. I don't get it. What's the point in even wanting anything or wishing something when you're never happy with what you have. People aren't thankful for what is right in front of them until someone else points it out to them. They don't see the beauty within someone as another person does. They don't realize other people are jealous of how people perceive you in the world. They don't realize they have a million great relationships, a career obviously set in stone, supportive family and close friends. They just see what they want to see. They focus on how they're overworked and unappreciated. I wish I could make people see what I see in them. Maybe then they'd have a different perspective. But then again, I'm sure this whole statement is just a hypocritical opinion. I know I do the same thing. So this is not only a letter to other people out there, but also to myself.

I don't want to seem unsatisfied with my choices I've made. Even though I can't stand my living situation, I am still happy with my choice to live here. There are always going to be obstacles in every choice you make, but you just have to learn how to take the good with the bad. Not everything can be perfect or have a fairy tale ending. Not every relationship can have no arguments, not every friendship can have no falling outs. Not every job can have the exact amount of hours or pay, not every class can have no homework. Acceptance is the first step to satisfaction. Once you learn to accept that everything cannot and WILL not be perfect, you'll find yourself being a lot more comfortable with situations you were once uncomfortable with. As bad as it sounds, I find comfort in the fact that things can always be worse so it makes it hard to feel sorry for myself. When things are bad I think at least I don't have a crazy roommate who parties and leaves my house a mess instead of being annoyed at her OCD tactics. Instead of being frustrated with my family, I think at least I have a family. At least I don't have divorced parents like most of the world and at least they aren't alcoholics or unfaithful. Instead of dwelling on the fact that I've lost so many good friends lately, I think of all the new friendships I'm now making, and how past obstacles are making those only stronger. I truly believe mistakes help form your perspectives on the future. I don't think I would have these views if I hadn't seen so much pain in the world, or gone through some tough situations myself. But I know that things could be worse, and that I don't want to live my life constantly unsatisfied.

You Can't Have it Both Ways.

Is it better to be a doormat or be the foot stepping on it? Is it better letting others push you around, or being the one pushing others around? It's really hard to find that balance for me. I think I'm either a bitch or a pushover. I need to work on this a lot. But I just hope people don't mistaken sarcasm for being truthfully mean. Because I think I use sarcasm so much due to not standing up for myself enough. I just don't see the point. People act how they want to act, and their minds most likely won't change based off whatever you say back to them. So I would rather avoid a fight since it doesn't get you anywhere anyway.

But lately it's annoying me that people take advantage of this. Especially my friends who know my tactics. They know I won't get mad back at them even though they were in the wrong. So maybe I should change it up. But that's a lot easier said than done. I wish it wasn't so difficult for me to be nice and stand up for myself at the same time. I'm envious of people who have mastered this skill. I hate when people call me a bitch, and I hate when people call me a pushover. I don't know where this leaves me.

Don't Wonder why you were Chosen.

Instead of asking, "Why me," ask "Why not me?" If an exact replica of your problems were passed on to someone else on the Earth do you think they'd handle it better than you? Maybe you're the best candidate. Take it as a compliment rather than a burden. Instead of asking why you were chosen, figure out what to make of it now that you have been chosen. You can't change the cards you've been dealt, so bluff and make do with what you have. My favorite bible verse relates to this well:
 "The Lord directs our steps, so why try and understand everything along the way?"
-Proverbs 20:24 (New Translation)

Life is how you define it.

I'm not going to lie, this is going to be difficult for me to write about because I don't usually talk about this topic with people, even though I should. And it's 4:30 in the morning so bare with me. I just think people need to be informed about an issue that affects me every day.

I was born with Ichthyosis, a rare genetic skin disorder. It is where you make your skin every other day instead of every 8 days (approx.) like a normal person. This means my body is constantly producing new layers at an abnormal rate. For instance, if I get a cut, it might be almost healed in a couple days where most people it would appear a lot longer. Also, hair is considered a "bamboo type." It grows in shoots like bamboo which cause it to break off more easily. I was born with only a 10% chance of surviving, and it took years to even diagnosis the disease correctly. Ichthyosis is not something you would know could appear in your child. Both of my parents have a recessive gene for the disease, meaning they had no idea and were rather confused when I came out. I was kept in a hospital immediately after birth for months and wasn't allowed to come home permanently almost a year later. My mom spent the majority of her life in the hospital trying to figure out what was wrong. They later found out it would be a 1 in 4 chance of their child getting it. I got it, while my younger brother, born on my fourth birthday did not. A lot of treatment is trial and error, and I believe my condition was worse when I was younger because I had no input in what was being done to me, and doctors were so unfamiliar with me. My entire childhood I went to hundreds of doctors, missed school in hopes it could lead to beneficial research to them. I later realized they couldn't help me. I would go into an appointment optimistic hoping a doctor would have a better lotion for me, and the entire time he would just ask questions to gain knowledge for himself. I hated it. I didn't understand why I knew more information than they did. After years of that, I gave up. I haven't been to a dermatologist in years, while most others go every month. I don't see the point anymore, and doctors just frustrate me and make me lose hope.

It only affects less than 200,000 people in the United States. I know, that number might seem high, but to compare, cancer affects 1.5 million people EACH year and equal to 1,500 deaths per year. Let's just say what I have is something you probably won't ever come across again. Because of this, there is little research. I have always relied on my parents for information up until recently I got annoyed that they knew close to nothing, and have been spending hours on the Internet trying to find some kind of modern information. I found nothing. Literally, nothing. Google it...it's pretty sad, honestly. The problem is people are so unaware of disorders not constantly discussed about. People donate to organizations all over the media such as cancer. You can just walk into a store and find loads of "pink" products to buy in which will support cancer research. It makes sense though. Cancer impacts more people, it is more lethal, it is more in your face. If I had a lot of money, I'd probably donate to them too. Why donate to organizations so far behind and extremely rare? I don't have a good answer except that you have to start somewhere. My parents made me think negatively from the start on this one. They told me it is so in need of funding that barely any research is even being done anymore because doctors are so focused in finding cures to more commonalities. Doctors get discouraged with the lack of support. Think about it, when you ask an aspiring doctor what they want to do, what do most say? "I want to find the cure to cancer!" But like I said, it makes sense. And I don't blame them at all. It's hard to think about the fact that if our organization could even have 3% of what other organizations make, maybe there could have been a cure by now. At the same time, it's frustrating to not have anywhere to turn, and nobody to ask aside from yourself. I think for that reason it has made me purely rely on myself for any medical problem. I never go to the doctor for anything, unless I really think I'm dying.

 It's not like one of those disorders in which you can treat, and maybe it'll go away someday. You can't just see doctors, take a pill, pray to God, and it will go away. It's not like that at all. You can't have a surgery or buy a lotion to fix it. You can't control when you get infections or constant illnesses so extreme it is painful to walk. You can't escape the rigorous, painful, daily morning routines you can't skip even for one day. It is common to get a lot more bacteria in your system. Bladder infections, ear infections, overheating, difficulties getting blood drawn, high heart-rate, exhaustion, depression, anxiety, are all common additional factors people experience on top of this disorder. It is probably why I have had Ecoli more than three times, and a recent kidney problem, along with extreme versions of common illnesses such as severe strep and even chicken pocks (which I was both hospitalized for). Simple sicknesses can easily turn into deathly infections. But I never treated myself as any different than anyone else. I believe I can do anything anyone else can do. While others think they shouldn't exercise to do overheating, I work out as a solution to the frustration I get from all of this.  I don't consider it unbearable to any degree, and honestly I wouldn't notice it very much if it weren't for other people noticing it for me. I'm so used to it by now it doesn't phase me, and I'm used to the fact that there isn't anything I can do to change it. It is like trying to change your brown eyes to blue. My parents have never treated me any different, were never over-protective at all, and forced me to do everything any other kid was doing. At times that was really difficult, but looking back I'm thankful because I was included in normal activities and have no regrets. I was able to play sports and have a normal social life. I was blessed in that area, and have always been able to maintain great friendships which means the world to me.

The only products out there to help are pretty dangerous steroids which are really not worth the end result, and is hard to keep track of. I think it's easier just living life how it's meant to without having to constantly monitor pills and doctor appointments. Despite my negativity for the treatment to my disorder, I think I am optimistic in how I live my life. I don't change anything. I still go out when I'm in pain, and I won't let anyone know. I'm not the type to just stay at home in misery, or let people feel sorry for me at all which is why I don't usually talk about any of this. When strangers come up to me curious, I don't even tell them the truth because I don't want anyone worrying. It's hard to explain it where people will understand; people jump to conclusions, offer to call the paramedics, give me phone numbers to their so called "life-saving" doctors, tell me stories in which they believe relate to me, baby me, or mistake my disease for carelessness and lack of protecting myself. I remember when I was younger people would come up to my parents and yell at them thinking they did not take care of me. I think the worst feeling of this whole thing is the guilt. I hated that feeling more than anything. I wanted to yell at them for even accusing such a thing. It doesn't matter when people come up to me, but when they drag others down with me, that's when it gets to me. I hate when people have to tell me their hour-long stories when all I'm trying to do is shop with my friends. I hate when people make stupid remarks, I let it go, but my friends feel like they have to be mean back to them for me. I appreciate it, but I can handle it. It's easier to let it go sometimes even though there are many times where I would just LOVE to just punch them in the face instead of answer all of their repetitive questions.

I think I've spent too much of my life being in denial. I want to use what God has given me to help others. To help inform instead of ignore and hope it'll just go away. Because it won't. I'm going to be stuck with it forever, so I might as well make the best of it. I can't even begin to blame anyone or feel sorry for myself. I don't think I'd have it any other way. Today I was talking to someone similar to me and read an article she wrote describing the disease as "chronic." I asked her why she considered our disease chronic and she told me it is because it is considered being long-lasting and recurrent or characterized by long suffering. To me, I never ever defined it as chronic. To me, that makes it seem deadly, and a hinderance on your entire life. I don't believe Ichthyosis is a long suffering. That just sounds morbid to me. It's more of a blessing in disguise. I can't bring myself to consider it that serious after I see people with much more painful endeavors. I can't bring myself to complain about it because in the back of my mind I know it could be a million times worse. I'll admit sometimes I've asked God, "Why me?" out of frustration and discouragement, but I know God has given me something this tough for a reason, and I know he wouldn't have given it to me if I couldn't handle it. I find peace in the trust he has blessed me with. I can't question his reasoning. I can't ask him why was I chosen instead of my brother. Everything is for a reason. He gave me the gift of ambition, writing, and concern for others. And I want to put all of those to use as much as I can. Without Ichthyosis, I would not have been able to meet the MANY inspirational people I have. Camp alone has made it worth it for me. Meeting kids with diseases a billion times worse than mine makes me feel like an idiot for even thinking what I have is a problem. Some of those kids are just amazing. Their smiles never fade, their ambition and strength is more than I have ever seen. It keeps me holding on during the tough days. I just think of them and think if those little kids can get through severe pain every day, I can get through a moment. It's worth feeling low self-esteem at times, discouraged, and down even if I can help one single person.

I want to be completely open about this now because I think I've been too closed off for way too long. I'm sorry for not discussing it before. I want anyone to feel free to comment or ask any questions!

Psych.

I wonder if it's better to try and not think about things that hurt us. I guess we don't really have a say though really. It's like when someone says think of anything besides an elephant. What do you think about? An elephant. You always think about what you don't want to think about the most. You know when every song can somehow relate to a situation, even when it clearly was written for something completely unrelated? That's when you know it's seems impossible to control. When one line in a song can trigger a flashback so real you think you're experiencing it all over again. You end up not wanting to listen to anything, but then you end up listening to your thoughts again. So you go out, but then every street has a memory of them. But when you stay in you remember when they used to spend every free moment at your house, or pictures of them appear everywhere you look. And when you close your eyes, visions appear anyway. It's just a viscous circle you can't ignore. So maybe I should stop trying so hard to dodge it. Maybe I can use some reverse psychology on my thoughts. I guess it can't hurt anymore than it already does.