Human Hurricanes.

My life is so full of physical limitations, but I still become that person where if you tell me I cant do it, I will. But sometimes when I find myself breathing harder, or losing consciousness (oops), I realize that maybe working my physical body is not my calling. While looking at someone who is physically appealing (those fabulous abs, and arms) it shows this discipline and strength that radiates off of them. But what about when you choose to constantly work on or workout your soul, and heart? Yea…what? A renovation, or working on your soul is probably one of the hardest things a person can do. To change themselves internally, to change everything they think they’ve ever known, or to work on something that is not tangible. It sounds insane, and most of the time you feel insane when you realize that maybe something things in this area will be, um, hard to reconsider. Understatement.

You see, for a long time I really didn’t care about people. I floated through high school on a very unhappy cloud (I have no regrets) and didn’t give two damns. I’ve always cared to an extent, but not once did I exercise a bit of patience with anyone or myself. Working with young children was a turning point in my life. I was working with tiny, and happy souls, some more than others, and they felt everything so deeply. They were brand new, empty of judgement, and they hadn’t reached this adult stage yet; they were not broken. I saw the humanity in their eyes as I felt their tiny arms wrap around my knees. Everyone was here at one point. We are still human, and despite how much we choose to cover it, we are so worth loving. Extending past my Pre-K and first grade experiences, and onto fifth grade, these tiny humans were hormonal devils. They were going to show you how insane, mouthy, experimental and defiant they pretended to be before they were ever funny, or told you how much they cared about you. Despite the fact they were leaving me for middle school, I still saw them as a version of my pre-k kiddo’s with a few bumps, and scrapes society left upon them. But the days they buried their faces into my shoulders crying, screamed my name down the hall because they were excited to see me, or felt the need to deliver me Valentine presents were worth the awful human hurricanes from time to time. But, I believe there is a hidden beauty in each person, and I so deeply want to find it, and teach them how to radiate it. Seriously though, it’s there in everyone.

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Overall, that job worked me internally. I might not have abs, but my heart has been strengthened more than I thought possible. I felt things beyond deeply, my stomach fell into itself sometimes, and you never knew when you had to step into an empty classroom to cry for a second after handling a situation that blindsided you. That job made me see the humanity in this society (sometimes the inhumanity as well) and showed me that every person is so worth loving. It taught me a lot about my disease, my life, and how much I choose to love others. People will often say, “I just don’t like that person” , “They are so difficult to deal with” and I find myself loving that person the most. Why? As I’ve heard many times “the people who need the most love will ask for it in the most unloving ways.” My response? Everyone is So Worth Loving.

Check out the beautiful company that I am beyond a fan of, So Worth Loving, and their blog post about my story. I hope they show you the worth that exists in you, and other people.

Dedicated to all my wonderful students. Even though I was the teacher, believe it or not, you taught me too.

-haley.

Instagram @haleyann92

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A Sad Little Fantasy.

A couple of years ago I saw a picture on Pinterest (are we shocked) that said, “What messes us most up in life is the picture in our head of how we think it is supposed to be.” That quote in itself about summed up about the age of fourteen through twenty for me. Despite the happiness, and hardworking front I can put on, there will always be an impending sadness that I am continuously attempting to work through.

I think a couple of years ago when I realized I could let go of some very damaging things, mentally I was free; for a little while, that is. You see, despite how they act, or what they say I know people think I’m crazy because of how ridiculous I can be. I choose to be the person that laughs the loudest, has the outrageous stories, the most ridiculous twist and turns, and I also choose to be stupidly positive sometimes. For a very long time those “stories” and “twist and turns” were nightmares, and very long nights of convincing myself not to just end things. I choose to laugh because at this point, it’s all I have left, and why not be the butt of everyone’s jokes? Why not just love people instead of yell, or get enraged? I don’t see the point anymore. I chose to toss that expected picture of life out a long time ago, and create my own.

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For time to time I focus on just reality, and it spills out onto my blog in angry protests and I have to pop a Xanax. I can read through your Facebook posts about ISIS, how downhill kids are these days, and all these wonderful people dying of the disease that I just happen to have, and I find myself in a corner of fury. I don’t find that fascinating at all. So I’ve built my own world full of writing, Nat King Cole, That 70s Show, Augustus Waters, I Dream of Jeannie, Rocco Ricardo, wonderful art, and I am happy. I know it’s an illusion. My writing is not famous, Nat King Cole is dead, no one knows what I Dream of Jeannie is anymore, and there is no Augustus Waters, only men who are weak-minded, and cats are better anyways. There will always be an impending sadness that my little haven isn’t reality; but within this fantasy I feel safe. It’s the only way I can achieve happiness these days.

I’m tired of trying to control reality because it’s just not going to happen. Are you doing that? Are you spending more time focusing on what you can’t control versus what you could be doing right? Love other people, that is something that can be done. Being that one light in a person’s life; that can be done. Focusing on what makes you happy rather than posting on what is going wrong; try it.

Life is not supposed to go any particular way, sometimes it ends before you get to finish it. Stop letting the picture mess up your creation.

-haley.

P.S. Song of the Week is still Rain Song by Led Zeppelin. I just cant get over it yet.

What Are You Doin’ Man? LIVE!

This is about to be harsh. Prepare Thyself.

As I know I sound like I’m ninety saying this, but today’s youth really troubles me. Not necessarily because of how or who they are (well, yes), but because of what we’ve given to them and taken away. It’s what they’re becoming because of that, what side effect they are to our experimentation with socialization. It’s quite literally a disaster.

As seen with such fantastic examples (and classics) like American Graffiti, and Dazed and Confused, socializing back then was an actual event. You had your group of friends, you figured out how in the hell you were going to drive around all night, where you were meeting up, and that is what you did. By being out all night with these actual, real, and human friends, you met other new and interesting humans and probably smoked, and drank with them. You were out until it got blue outside, and OH SHIT, you forgot to wear a watch and its now probably close to four in the morning. Like I said, this socializing was an event. It wasn’t special, it was just normal.

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Socializing today happens through a glowing screen that nine times out of ten is horrible for your eyes. And what are we doing? Staring at it, all day and night. We have these virtual “friends” (who we secretly criticize and hate), these virtual “events” we can RSVP to (we seriously never do) and this is your social life. Updating friends on your meals, most important events, daily conversations, and most recent pictures. Socializing is so convenient for us now that when it comes to actually getting out and seeing people, we refuse with excuses as dates with a virtual movie service, Netflix, or sitting on our bed all night watching pointless YouTube videos, or creeping people’s lives…you know you do it. We have made this such a trend that teen’s (and adults) do not want to get out and have fun with people, we don’t want to go dancing, we don’t want to drive around, we don’t want to bowl….we want to sit on our ass. Now teens have all these so-called awesome (actually dangerous) apps to fish through where they send nudes of themselves (that disappear into a virtual world forever), and at my dinner table I don’t see my family and friends….I see people with their phone turned towards their face for a Snapchat. I exploded when I received news that TEENS have their own dating app so they can meet other people. WHAT. They no longer drive around? Meet up at Drive-In’s? Meet at Football games where you always see a new face? Meet at a school dance, or the fair? No. They are meeting through the internet. Are you sick yet? You should be.

Granted, Social Media has done fabulous things for me. It introduced me to new patients, and launched a career I never thought about having. Therefore, I’m grateful for the internet. I learn more on it than it harms my brain. Why? Because I was taught how to use it correctly. We’ve let apps like Facebook, Instagram, Snapchat, Meet me, Kick me, shoot me, whatever the hell else you can think of, turn our brains into social addicts to fake friends that don’t even care. Its taught us to sit on our ass, and socialize to a world that doesn’t even exist. “It wasn’t so great in real life, but with this edit and awesome caption everyone will think I had a great time. Thirty likes! Yes! I’m so awesome.”

Thats whats happening. In reality we are making ourselves more lonely with all of this “social interacting.” Why? Because it’s not real. When you post that suicidal status on Facebook? The twenty likes, and “praying for you” comments don’t make it better. The friend that picks you up, and stays with you till four in the morning does. There is a time, and a place for the internet, and you need to figure it out, because you are harming yourself. We have harmed our children, their train of thought, and tomorrows leaders. I encourage EVERY kid under the age of twenty to be forced into watching these movies. You know what their response will be? And I quote from the other night, “I never had times like those.” Yea, because you were in your room…Snapchatting.

Get off your phone, and the internet, meet people, and experience the world.

She spoke to me, she spoke to me right through the window. I think she said I love you. That means nothing to you people? You have no romance, no soul? Someone wants me. Someone roaming the streets wants me. Will you turn the corner?-American Graffiti

“If it ain’t that piece of paper, there’s some other choice they’re gonna try and make for you. You gotta do what Randall Pink Floyd wants to do man. Let me tell you this, the older you do get the more rules they’re gonna try to get you to follow. You just gotta keep livin’ man, L-I-V-I-N.”      -Dazed and Confused

-haley.

Ch-Ch-Ch- Ch-Changes.

I’ve pretty much diagnosed myself with the worst case of writers block ever. I’m not feeling inspiration, a drive, or anything else currently but to instead focus on my book. I really don’t want my blog to suffer (it’s what propelled me into writing) so I am attempting to keep my head above water with all of this. With that being said, some serious changes are coming to the blog.

It’s not just about PH anymore. This topic is what started the blog on issues that everyone overlooks with a disease, from fashion to tattoo’s, doctor appointments, and what not, but now its evolved. As I continue through my daily life, I realize how much more I would like to write about other things. Education, my heritage, other issues that need the spotlight of activism, and even little things like my room and pill bottle organization. YES! It will be synergy between my serious writing, and thoughts, to little daily things that help us progress. I think that, overall, is what I need and what people will enjoy more. I hope these changes are more enjoyable to my readers, and also help me find my inspiration a little better. 😉

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With that being said, now we can focus on the book. YES! A Haley Ann book is in the making. However, it’s a young adult fiction book. I will start releasing certain quotes on posts WITH a poll, and you can vote (anonymously) if you liked it! While talking with Colleen Brunetti a couple of weeks ago who is in the process of writing her own book, and it’s already successful, I told her whats stopping me is talking about the book itself. I really don’t want to hype up the book if it’s not worth hyping up, which is why I need your help. You get to be the editor, and audience. So please take time to read, and vote!

Now to wrap up everything, song of the week is The Rain Song by Led Zeppelin because I needed a little classic rock to remind me of song good times with family. What a beautiful piece. I hope you continue to have a lovely week! The next post? Haley’s Room. Prepare thyself.

-haley.

Too Much Pressure.

Hello August! I feel like I’ve made it over a crazy couple months of non-stop on-the-go Haley, and now things are slowing down. More writing, more calm, and more happiness. 🙂

I finally had a two month PH checkup, in which everything is ok except for a high heart rate out of no where, and I’m being referred to a new specialist that is closer rather than going to Houston. Also, I met a new primary doctor to handle all other issues who blew me away with not only his looks (hehe), but him thanking me for choosing him, and taking almost an hour examining me from head to toe to establish me as a new patient. He was very precise, and already knew Pulmonary Hypertension inside-out, and was quite interested that I had it. A PH patient’s whole world is full of pressure. The word hypertension literally means high pressure, high pressure in the lungs, high pressure in the heart, and I also found out that the pressure in my eyes is even high. When my new primary said, “I think we need to check your kidney’s for high pressure” I through my hands in the air with the response, “if there is anything that could ever have a pressure in my body it is high.” He laughed, but I was not as amused.

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You see, with all this “pressure” existing within my body, it makes it extremely hard to deal with outside pressure from other unnecessary things and people. Someone said to me to other day, or more yelled, “I know you’re done” and that struck an angry chord. I walk around everyday breathing twice as much as you, with twice the pain, and other everyday issues (like almost passing out from just bending over) and I’m just tired. Why? Because I have a disease that just so happens to have a side effect of chronic fatigue. When everything in my body is built up to functioning on a high level with outside demands, my body sure does reflect “done.” Emotionally, and really, I’m trying not to be done, but my lungs really want to fold themselves in half. Sometimes people really do not comprehend the realities of this disease…but your lungs and heart are a big part of why you are able to read this. When they don’t work right, despite how fine you may look, you really aren’t. People think I’m lazy, people think I exaggerate, but one of my PH friends who is my age (and shares my name) just received a double lung and heart transplant. While being prepped in the hospital she looked damn fine, because it’s an invisible disease. Appearances are deceiving.

Overall, you as a patient, or even just a caregiver, or person will have a lot of pressure throughout life. When its unnecessary, get rid of it, and embrace what truly matters. I’d rather my heart be overjoyed than overworked.

Song of this week! Houdini by Foster the People. Its fun, and perfect right now. Enjoy this week which is the start of a new month!

-haley.

Four Years.

I was only fifteen years old while watching my freshman English teacher scribble inside of a John Lennon book that she decided to give to me while repeating, “Life is what happens while you are busy making other plans.” She said this often, and as fascinated as I was with the quote, I had no grasp of the concept. I mean, doesn’t every fifteen year old know exactly what they are doing with their life? I did. Mrs. Hepler had spent that year critiquing short stories I wrote in private, and we continually bonded over the Beatles, writing, and feminism. She saw something I guess, and felt the need to repeatedly say that quote to me. Its been seven years since I put that book on my shelf, and since I’ve sat in a desk in Mrs. Hepler’s class.

seventeen2Two weeks pre-diagnosis.

You see, my life was all planned out at one point. I was graduated, eighteen, had a fabulous relationship, and even though I was walking into a hospital at five in the morning well aware of what was about to happen…I still thought I was in full control. I remember the nurse having me sign “death papers” in case anything happened. That sting of reality hit hard because I had been eighteen maybe two weeks. I mean, werent my parents supposed to be signing these? I recall the same nurse taking literally eight tries to start my IV, and feeling the frustration of my family standing around telling me their goodbyes before I was wheeled off. But I had to remind myself that this was surgery, I would be asleep soon, and it was all no big deal. The masked female telling me that I had to be awake took another hack into my control theory, and soon I watched it crumble when they injected me, and slowed my breathing. I felt a giant tube squeeze its way through my throat, and watched a cord weave its way into my beating heart on a glowing screen. Doctors chatted around me in professional gibberish that I was too tired to comprehend, and soon I was being yelled at because I was losing consciousness, and bleeding out. Then with blinding lights flipped on, and nothing but silence filling this tiled blue room, I heard my doctor say, “Its your lungs.” My control was shattered.

At first I was told I was physically dying, and then I was just mad. Later, I felt like mentally I was dying, and wanted to actually physically die along with my broken heart, and my life was a collage of unidentifiable direction, misleading information, and trying to fight for control. I’ve been PHighting for a long time. I’ve taken pills, had more tubes shoved into arteries, scans of my organs, and oxygen crammed up my nose. Four years has gone by quick especially when you are told you only have two years left to live. At times I really thought I would rather take my own life, than to continue to fight this tiring disease.

The blue prints in which I thought I had planned my life out perfectly went through the shredder a long time ago. At one point, you just have to sit back and think, “what the hell happened?” But this weird, and unpredictable road has been painful, but as I’ve said before, there is an odd beauty in pain. I saw this John Lennon book collecting dust on my shelf the other day, opened it and read a little message from Mrs. Hepler. I smiled, and soon everything fell exactly into place. I’m still me…but my life really did happen despite my other plans.

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Four years strong.

This is dedicated to Tricia Hepler, who without, I probably would have a ridiculous amount of comma’s on this page. In fact, I bet I still do. What a fantastic person, writer, and general artist you are. Thank you.

-haley.

Get Out of That Box!

I may not be able to pinpoint how I feel exactly lately, but I do know at least one emotion that has been consistently pumping through my veins all week; Anger. So much freaking anger just completely surrounds my world with situations, and with people…mainly how they decide to treat other people.

I follow this lovely vlogging couple on practically all social media (Anna-lee and Jesse) because they are adorable, smart, and creative. While scrolling through Jesse’s Instagram one of my other sleepless nights, I saw a picture of two dogs in which the caption was “retard club.” The dogs were being dogs, and Jesse was being funny. Jesse and Anna-lee both are constantly in the public’s eye, talking to people, giving advice, and successfully just showing who they are. Back to the picture. I noticed a ridiculous amount of people commenting that they were now unfollowing because of his word choice, how awful he was, he needed to be a better person, delete the picture…blah blah blah. Then you see Jesse’s reply to all of this. “It’s like you have to edit yourself until you are plain and boring to please everyone.” This stood out like a slap in the face because it’s what I’ve been wanting to scream all this week. I’m always on Pinterest (um, yea) and see all these lovely artsy quotes saying how much we need to be patient, not judge people, be ourselves, live life to the fullest, and live happily ever after. In a world so full of these thoughts that “be yourself, and screw everyone else!” we sure are criticizing every little bitty thing anyone ever does. We can’t show cleavage (you might get offended that your husband looked), we can’t take selfies (how awful that we love our makeup, or awesome beard that day!), we can’t support abortion (you have different religious views that you need to push onto us), we can’t use certain words, we can’t love the people we want to love, and we just can’t exist it seems like. I’m literally editing, touching up, walking on eggshells to make sure that I fit into society’s perfect little acceptable box. That box is an illusion.

letmelivecourtesy of Pinterest, of course.

After editing me, changing, feeling self-conscious, watching everything I say and do….I just give up. I give up, and choose to stop doing that because I am respecting me. It’s about respect, and it’s about kindness for all of you people in general. From what I hear for some of you Jesus followers (I know some pretty awesome ones) but I hear those are called Fruits of the Spirit in the Bible. Start working on them. There is a difference in an actual, horrible, and offensive person versus someone just trying to be a happy human. You don’t have to agree with what I do, what words I say, what I choose to put on my body, what selfies I take, or my spiritual views…but I would like you to respect me, and stop asking me to edit myself down for your personal viewing.

That is all.

T-Shirt orders are being shipped out all this week! 🙂 If you want to order your Just Breathe Tee, email me to see if your size is available. Also, follow Anna-lee and Jesse on Youtube! They are so fantastic.

annaleeandjesse

-haley.

Adrift.

Coming back from Indianapolis has been rough to say the least. Not because I’m tired (I definitely am), not because my symptoms have become gradually worse, and not because we don’t have some of the same amazing places…but it kind of put me in perspective. In Indy, I felt like I had reached exactly a place I belonged. People knew who I was, knew my work, credited my work, and I felt like I was doing something right. Now I’m back here where I explain myself, and yet I’m still forced to find a college degree to find some sort of “work” that will pay the bills.

What am I doing? I mean really. I work almost thirty hours a week with maybe a couple of days off from the place that I’m just existing at. Its money, and that’s it. Is that going to be my life? Get up, drag myself to some regular job, where I work late hours doing “whatever” type stuff, then I come home exhausted to try to power through my real work? My real life’s passions? Does that not sound exhausting to you?

Everyone always asks me what I’m doing, what school I’m going to, and I really have no idea how to answer. I love to teach, I hate education. I want teaching to be organic, and in this world its the furthest thing from that. Screw working at a school, because its like picking at a scab. I cant do it. I would love to write, but where? How? Who would read it? How would I get paid? Dont forget, I need health insurance! I would love to own my own business, but its an infinitive circle of the same questions….

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I really have no idea which way I am going. I am just standing in a spot that has so many different, weird, and confusing paths that I just feel like sitting down for a while. The moment I do, I’ll realize that I should’ve done something a long time ago, and I’ll watch all these people I knew with their careers, kids, houses, marriages, and here I am…just hoping for direction and medical insurance. I’m really not throwing a pity party. I’m just really lost.

I  need help y’all. If you have any words of wisdom, feel free to comment. The end of my rope isn’t even existent anymore.

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Song of the Week is the beautiful Without Words from the TFiOS soundtrack. Its beautiful, and lost is exactly how Augustus and Hazel felt when this song played. You can purchase Just Breathe shirts still!!!! Personally email me to check your size. There may be more items added to the shop section soon!

Shopping? YES!

Finally! After many many months of people asking, begging, and wondering…I can finally say that my Just Breathe Lung T-shirts are for sale! The catch? These are left over Tee’s from the Lantos grant. There is a very limited amount of sizes available. It will very much so be a first come-first serve system! Follow the directions below to finally purchase one! I will work through email only. 🙂 haley.ann.92@gmail.com    I hope everyone can finally have one! Thank y’all for being supportive, and patient!

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Thank Y’all.

Finally, I am home. I have nothing left but exhaustion, and happiness. This was such a perfect trip! I wanted to thank my readers, and the PH Association for making it possible. This was an absolute highlight of my life. Most of you followed on Facebook, and Instagram, and thank you for that! I am so glad you got to see the events unfold online. To those who I finally met in person, that was such an uplifting experience. As most of you know, I was nominated for the Young PHA’s Outstanding Citizen Award which still baffles me. I watched so many other PH’ers get on stage to accept their awards, only to hear about all the amazing things they’ve done. They are some PHenomenal people doing PHenomenal things! It was hardcore proof of the importance of connecting with other people who are affected by the same disease as you. Get involved! It will change things. Congrats to all of those who accepted an award, got to attend conference, had an amazing time, branched out, and learned. Everyone has done amazing job in the PH community.

As I’m coming up on my fourth year anniversary of being diagnosed, I’m reflecting heavily on my original feelings towards this disease. How absent I was, blank, unresponsive, and I possessed not an ounce of fight. When you are diagnosed with anything it’s really starting a challenge of overcoming yourself. That sounds easy; you know you better than anyone else. Except, most people leave out one huge detail about a diagnosis. You are no longer you anymore. From day one, you are wearing a completely new skin, adapting to what feels like a completely new body, treatments, a new circle of people (or survivors) and everything you thought you once knew about yourself is dust. Well, some of it. Now you will be tested on your mental, and emotional strength, how far will you go to physically overcome, and to one day make it to an infinitive finish line called “survivor.” Overcoming yourself is not easy; it’s the hardest thing you will go through. In the meantime remember, that mental dominates physical. If you can understand, comprehend, and get a handle on this mentally…your body will catch up. Mind over matter. I had to dominate my own self, swallow pride, not listen to certain thoughts, cut certain people out, let doctors in, and really figure out what it is I exactly needed. It really is possible to pull yourself out of that dark place. The only thing keeping you down is you. Look at yourself and heavily evaluate what is going on, and what needs to be changed. It took almost four years exactly to get somewhat on the right track. You will fall off every now and then, or take a wrong turn. I struggle mentally, emotionally, and physically. This is a lifetime disease, and until we can get that cure, it will be a lifetime battle. Find the will to live, and hold onto it. There is beauty in this struggle. Who knew I would get to wear glitzy shoes, and accept a ridiculously heavy glass award, meet fans, take pictures, stay in a four star hotel, have people ask me questions, and have my face and story all over the world because of PH? Quite frankly, I’m thankful.

Train your mind to see the good. Mind over matter. Thank you to everyone for showing me the good side of PH! Its been a trip. Pictures are below! Thank y’all again.

-haley.

Instagram! @haleyann92

Facebook.com/phenomenalhaley

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