Takes One to Know One.

I guess, emotionally, I’ve come to a stage where I feel “checked out.” Nearly everything I do when It comes to talking to people, attempting to write, and even watching a movie, I feel as if there are no feelings left right now. Emotional drained, whatever you want to call it, that’s how I’m feeling. Really, I have no idea why I’ve reached such a weird spot, but I have. I think back to The Fault in Our Stars, and of course I become like every teenage girl, melting into a puddle on the floor when Augustus comes on-screen. But for me, it goes deeper than the superficial feelings of “he’s cute” and “he says all the right things.” For me, it strikes a deep chord of acceptance. He doesn’t care about Hazel Grace’s oxygen, in fact he teases her, helps her, and understands that her lungs suck at being lungs. He understands the seriousness of being checked into the hospital, and the mental torture we go through as patients not to be “grenades.” He doesn’t care, and he’s still there with his non-lit cigarette hanging out of his mouth, and escorting her around.

augustus

I wonder sometimes whether it takes the sick to know the sick. The whole, “takes one to know one” phrase has crossed my mind many times. Diagnosed at eighteen, I was fresh out of high school, and had literally been a so-called adult for maybe a week. I was still a kid at heart, and so was the kid I had been dating for a long time. I guess you could say that Pulmonary Hypertension was the equivalent of being T-boned by a semi…for him. I saw this so-called semi coming for a mile now. I felt my lungs, I felt how much work it was just to stay awake all day; I knew it was coming. The mental side in which not only attacked me, and tricked me into hating everything, attacked him too. Who expects two eighteen year olds to deal with surgeries, oxygen machines, mental acceptance, and acceptance of each other? It’s almost impossible. You really don’t even know yourself yet, but all you supposedly know is “I hate myself, and I should die as how my body intended.” Yea, a giant bolder in a tiny pool. It’s not fun. What was shock, turned into superficial acceptance and support while trying to figure out what was going on, which turned into being tired, figuring out how tough this is, finally understanding these shitty lungs aren’t going away, boredom, moving on, making fun of the disease, non acceptance, and separation.

There was no Augustus. There never has been. I don’t blame him, it was a lot for me to handle, let alone him. As I meet all these new supposed “men” they still don’t understand. Not to show hate, but they don’t ask the questions, they really don’t comprehend that taking on me is taking on an emotional Olympic course. “It’s no big.” While I want someone to treat it as if it’s “no big”, I also want that balance of they completely understand how big this lung monster can actually be. Just saying. They have no idea. Maybe if they did, they would run like him. I really don’t blame him, and sometimes the little things he did of showing his superficial “Augustus” side can make me smile. But I stopped trying to explain my lungs a long time ago to certain guys; It takes more oxygen than it should. Overall, I just loved the story of Hazel and Augustus. I think it fell together beautifully because they both knew what it was like to be trapped in a failing body, and to hate yourself.

Only the sick understand the sick.

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Enjoy our song of the week, Let Me In from the Fault in Our Stars official soundtrack.

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Attitude Adjustments.

Attitude; Thats such a negative word to me. In fact, I just had discussions with some of my fifth grade girls, and how they are over loaded with it. I make them think that because they are growing up they need to learn how to drop this so-called attitude, but who am I kidding? It only gets worse with age sometimes.

This simple little moody word has a lot of power behind it. It’s a force of destruction, a glimmer of hope, and a knife in someone’s heart. When you step back, really look at yourself, and evaluate how you communicate with people you start to see that without actions, you’re left with your words only. Your ONLY communication. Your attitude; It can take a life of its own, and overpower you if it wants. What vibe are you giving off? How are you communicating? Whats overpowering you?

I’ve seen so much attitude lately that it completely blocks off any actual communication. People just don’t want to listen, they just want to be mad. They want to jam their words into people’s feeble ears, and make their points boldly. In return, you were never heard. I’ve seen humans with such bad attitudes that the oxygen in their nose is no longer beneficial because spiritually, and emotionally they just cant believe in themselves, or others. I’ve always said you had to drop barriers to let the good overcome you. Nothing will happen with a door shut. Drop it, open a door, and open your ears. Listening to others more than  you speak, being patient more than being forceful, looking for improvement rather than making points is so much more helpful.

Attitude; it can be a lifesaver. Literally. I had such a bad one about my disease. I really wanted to just exist within it rather than fight it. Developing, listening, improving really did change things. It changed my outlook, it changed my attitude. I became a teacher instead of a cop. I felt like instructing, and listening more than I did pointing out error. Some of us even had to make attitude adjustments about wearing our oxygen, me included. My attitude saved my life. Step back, and really evaluate yours this week. Is it worth changing? Because you are worth it.

Congrats to Karla, our contest winner! Thank you to everyone who submitted a “Hazel Grace” picture! They are all so beautiful. Our song of the week is So Many Details by Toro y Moi. Enjoy!

oxygencollagewinners

-haley.

Your Quick Guide On the “White Coats.”

Happy Monday everyone! New week, new day, new opportunities ahead to succeed in the ways you want to. I have a couple of doctor appointments coming up this week, and honestly I don’t really dread them. Like I’ve stated before, my family is extremely medical, so I’ve been medically savvy for most of my life. I was blessed with a fantastic primary doctor, then have gotten my fair share of doctors who don’t listen, are pushy, unclear, and what not. So here we go loves!

whitecoat1Since when did anyone’s doctor look like this?

 

HOW TO HANDLE THE WHITE COATS

With so much happening to our healthcare system, insurance, and having a government not give two craps what happens to your body, it’s up to you, and you only to maintain track of what goes on in a doctor’s office. Bills, testing, insurance coverage, and blah blah blah. From day one its nothing but a hassle, but it has to be taken care of. I unfortunately have lost track, and owe so much money in so many different places that I just don’t care anymore. Do as I say, not as I do people. Aside from money, actually dealing with doctors is a whole different issue in itself. Their treatment methods, bedside manners, and whole setup differs. Know how to handle them appointment to appointment to ensure better outcomes for you. Its important to remind them that you deserve the best, you are not just another “body.”

1. LISTEN & TAKE NOTES

I sound like an old lady, but it’s extremely important. My primary doctor has a thick Spanish accent, my cardiologist has a thick Indian accent, and I have a hard time understanding sometimes. It’s not rude, its truthful, and its better to ask them to repeat it rather than smile, and agree to whatever the hell just happened. If you are super confused on what they’re doing, or have track balancing numerous doctors (for instance if you have three, and each of their opinions is different) you might want a “Doctor” spiral that you document in. It’s not being rude, its being smart.

2. BE BLUNT

We’re not talking blunt force trauma to their ears, but I think I get along with my doctors because I’m extremely blunt about what I will and will not do. They see and hear everything. Be honest about your period, pee, sex life, and any other thing they might need to know. If I don’t like the sound of something, I ask for other options. Don’t confuse blunt with tacky. Even if they have an attitude, your responsibility is to maintain yourself. I have a tendency to get temperamental extremely fast with a certain doctor for other reasons, but the best thing you can do is keep your cool. Think about the people they have to talk to all day! After everything, they just need to hear something that’s straight to the point…whether they realize it or not.

3. DON’T BELIEVE EVERYTHING YOU HEAR AND STAND YOUR GROUND

Most people know that I used to be on Warfarin. I’m a difficult patient in the pill department (I’m beyond inconsistent), so Warfarin was World War three. I hated maintaining myself on that, also I hated getting my pro time checked. I don’t always have time in the day to run across town to have my finger pricked, and sometimes I don’t even have gas in the car to do that. Also, after insurance, it was almost $70 each time I got it checked, which is two times a month. Yea, kiss my ass. I got to a point where I wasn’t showing up, then finally they were sending me letters in the mail that I “didn’t comprehend the full effects of my disease” which at that point, I wanted to type a lengthy letter back. It attempts to scare and piss me off, I went in for stomach pain (below my ribcage that hurt when I took a deep breath), they said it was a blood clot, and I spent seven hours in a waiting room to have a scan done to check for a clot when I could’ve been on the road to a mountain vacation. Everything was labeled STAT, but apparently to that office that means two days. Moving on, there was no clot. My blood was fine, and I immediately got on the road to my vacation. When I came back, I talked to my primary who agreed with me that I’m too young, too active, and I bled out my first heart cath BEFORE Warfarin was in my body. I need to take a baby aspirin every other day, and I’m fine. I relayed this information in which they argued with me, but I had to take control of my treatment options. Bottom line, doctors get stuck in a routine of what they think is best. You do your research, be smart, get second opinions, and do not let ANY person scare you into or out of something.

4. BE COOPERATIVE

….to a point. Obviously in the above story I wasn’t, and had good reason to be. Sometimes doctors need a little refresher that you are human. If they are doing their job correctly, and all is well, the best thing you can be is calm, cool, and cooperative. I understand the medical side because I’ve watched my Dad and Mom for years. The calmer you are, the more likely you are to get the best treatment because you are not being a distracting patient. If that makes you feel degraded as a human, I’m sorry, but that’s the truth. You are a customer to them, and they need to focus so they can keep you here.

Overall, I’ve dealt with ridiculous Doctors, oblivious doctors, and you just have to learn how to play the game while keeping yourself healthy in the meantime. All in all, I’m thankful for my fantastic doctor that treats me like a daughter, and continuously praises me for how far I’ve come, and also my nurse. Love you Dr. Sahad, and Maria!

Have a fabulous week lovelies. Normally I would tell you what our Song of The Week would be, but the music player isnt working. Ugh…

-haley.

Find Haley on Instagram! @haleyann92

 

 

Throwback Thursday.

So in the spirit of Thursday, I thought I would participate in a little throwback.

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This picture. It was taken in possibly November 2010, when treatment was unsuccessful, I had just spent an entire week in Houston trying to find a treatment, and I was having to wear oxygen. I was pale, I was cold, and yes I have tubes in my nose. As you can also see, I’m in my own home because I wouldn’t have been caught dead out in public wearing oxygen. Why? Because for so long oxygen tubes have been nothing but a symbol for the sick, diseased and elderly. It’s not attractive, and most of the time people stare. So why mess with it?
I love that my point of view has changed dramatically, and it’s going to be funny to see if America’s does too after June. What I love about John Green is that he gives you raw information and makes it beautiful. He puts ugly truth into a paragraph, and it’s amazing. He put a girl wearing oxygen twenty four seven into his book, and made America fall in love with it. Pretty soon, that same girl (Hazel Grace) will be on the big screen and no one will be able to hide their eyes from seeing the cannula crammed up her nose. No one. He made oxygen, this ridiculous annoyance, beautiful.
I think it’s sad that patients like myself, and most teens compromise their health in order to appear normal, and don’t in fact want to wear their oxygen. It shouldn’t even matter anymore. Loves, you were never normal! Don’t throw away and damage your body even further to attempt at existing in a normality that was never even there in the first place! You were always PHenomenal. Wear your oxygen, proudly.
DONT FORGET! This is the LAST DAY to go like the Facebook page to possibly win a just breathe t-shirt!! Check out the contest tab for more info. facebook.com/phenomenalhaley

-haley.