Its Been a Minute.

Sorry it’s been a little bit y’all. I have so much writing I want to do right now, and I’m currently cleaning up my novel in order to submit it for a contest, and also I have another heavy subject on my heart that I need to write about. Until then, there is a NEW CONTEST that ends two weeks from today. Submit a pic of your PH Pet(s) that get you through these insane times. I have no idea what I would do without my Rocco, even though we both have crap lungs. Send me your pic, and a random person will win a Just Breath Tee! Remember, whoever wins this contest will have their shirt shipped March 28th. Winner will be chosen March 12th. Send your pic to haley.ann.92@gmail.com! Also, we will post pictures with your permission. 🙂

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Novel? Yes, Novel. I’ve been busting myself on a work of fiction that is heavily based on my life. I drew from personal experiences, but yes, its fiction. Anyways, a lot of people are requesting to see it because Pulmonary Hypertension is the big star in the book. However, I’m just not quite ready for that yet. Previews are always nice though, right? So here’s a little sneak peek below. If you copy my words, please give credit and quote me. If you STEAL, I will find you with my fancy Texas lawyer. Give some feedback, and let me know what you think loves.

This is a scene where the main character is having an echocardiogram done.

“It wasn’t a child, it wasn’t kicking its way out of my body, and people didn’t crowd around asking if I was excited. But it was my heart, it wasn’t shitty, and it wasn’t broken. Beating vigorously, I watched it trying. I couldn’t help but stare in amazement that this unbelievable organ was locked up inside my chest, and how wrong I was in my attempts to stop its wonder.”  -Haley Ann

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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.

My Best Decision.

A few months ago someone asked me what the best decision I ever made was. I’m a girl, and on a small level that answer changes daily. Sometimes it’s a vintage find I purchased, or a club I danced it. But, when we’re talking about the big overall lifetime one…I had just a simple answer for that.

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Months I spent trying to exist in this life, and fight to remain normal rather than fight for my life. I thought because I newly alone, newly diagnosed, and because I had an incurable disease that maybe my purpose was in fact to die, I mean, why else would anyone be diagnosed with such a fatal disease? My small, closing arteries were a powerful force not only dominating my lungs and heart, but my brain, and it felt more natural to hate myself than to attempt to move on. I resisted moving forward with treatment, and daily, had to listen to my doctors trying to talk me into abiding by their rules. I pushed life away, because in my eyes I was no longer worthy to live, and I was no longer normal. My body spent most of its time lying in bed processing negative thoughts yet death never came. My lungs did not receive the medication they needed to move forward, and my relationship didn’t defy my social life. I continued to exist, I was in fact alive, yet still, I was never normal. I realized that I was never normal, I was never meant to be normal, and that I’ve always been phenomenal. The thought of my family lowering my casket into the ground, wearing their purple ribbons and realizing that their daughter or sister didn’t even attempt to fight, overwhelmed my mind. I lifted myself off my bed, walked to my dresser, unscrewed the cap off my pill bottles and ingested the medication after almost three months of no treatment. Soon, slashes of self abuse on my wrist began to heal, and the pain in my chest disappeared along with the rising pressure in my heart. I saw the joy that overwhelmed my doctor and nurses faces, as they showed me that my treatment was successful, and I was going to actually live. I then made attempts to get involved with the Pulmonary Hypertension Association, creating my own T-shirt design, and launching them on my newly created blog. It has been an intense, yet ecstatic feeling to see such uplifting words from readers, newly diagnosed patients, and even moms contacting me for advice, because finally I was acknowledging not only this invisible disease, but the mental side to fighting a disease that is too often ignored. Thank y’all for making all of that possible. At eighteen years old I was handling emotions, hospital bills, surgeries and mental struggles that sometimes even adults are not prepared for. I’ve never had a chance to be a young adult, because beyond my expectations I was definitely propelled into the real world with Pulmonary Hypertension being one of the many options it has to offer.

On my own as a new adult, I have had to rise up out of my depression, and my messy bed to progress through life, becoming brave enough to see other options. Daily, it’s a scary thing to actually confront this world, and consciously choosing to exist in it despite the frightening realities that consume our minds and hearts. The best decision I have ever made? Why that’s simple; to live.

 -haley.

P.S – Our song of the week is Space Cowboy by Jamiroquai. 🙂

Monday Funday! Yea, Right.

Got a case of the sucky Mondays? A contest can fix that! Finally! We are pretty much caught up on ALL of our shipping (and sending out goodie packs), so the contest shall commence! Yes, we got behind in the past on shipping because of trying to keep up with all the shipping when it came to the T-shirt mishaps AND contests. However, the new rule for contest winners! ALL WINNING PACKAGES ARE NOW SHIPPED THE 28th OF EACH MONTH. Whenever you win, it’ll be shipped the 28th, no matter WHEN you win. That is the official shipping day to keep us on track, and to keep our winners happy! Moving forward…

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To kick off our first contest in 2014, it’s a super easy one. All you have to do is find the official Facebook page (Facebook.com/phenomenalhaley) and like it! Everyone who likes the Facebook page will be put in the system, and one random person will win a Just Breathe T-shirt! So head on over, and like the page! It’s as simple as that. The Facebook page keeps you updated on my life, contests, upcoming events, blah blah blahhhh. Sometimes its just easier to pop on Facebook and update that quickly! So please find us to stay further in tune with whats going on on the blog! Y’all are awesome, so participate. 😉 Have a lovely week y’all! Its only the beginning!

-haley.

Heart Healthy Week: Thoughtful Thursday.

Oh, this week y’all…we’re going to stay positive!!

Heart Healthy Week: Thoughtful Thursday.

Dont let the goofy title confuse you. I’m not talking about thoughtful as in thinking of others (because you should be doing that anyways), but I’m speaking about your own thoughts…and how powerful just those can be.

The other day I heard someone mention the word reputation, and I think I might have actually twitched. I had either a Clueless or Meangirl flashback. Isn’t that the meanest word you’ve ever heard? Okay, maybe it’s not the absolute worst but still. I had no idea that we still linger on our idea of “reputations” and other people’s “reputations.” GoodNESS.

For the longest time I was a gossip, loved to gossip, and still catch myself doing it. Hello, we all do. However, you can learn to control it and flip your state of mind when it comes to gossiping. Living in a small town word gets around fast, you bump into people who you already somewhat know, but have never even met, and when something happens you want to escape. Why? This so-called “reputation.” Let me just say this, when you reach a point to not care about other people, and their opinions, life is so freeing. Reputation to me just screams scoreboard! Like we’re all walking around with little pens and paper, and keeping tally over who is doing what with who, where that happened, how they are, and how much we can laugh in their mistake. Seriously people? Is the word reputation sounding awful just yet? In December, I kind of had this revelation. No longer will I ever judge a person based on what someone else has told me. I will meet them myself, what they say to me will in turn leave me to my private thoughts about that person. And even then, I have no idea what they have personally been through, what their personal choices are, and it’s not my place to even try to understand that. It’s merely my place to smile, and be supportive. Why? We as humans are called to love people.

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Also, has anyone ever thought about spending time alone with your own thoughts? To anyone that has ever gone through anything mentally, that sounds like a terrifying idea. Usually we’re encouraged to stay busy to escape our own thoughts. Lately, its been so refreshing though to just soak in a bath, write, sketch, or lay down with Rocco. I consider this a reconstructive time that I’m going to need the rest of my life. Sometimes when we’re so busy with other people, and clouded with their talking, and their thinking, we really lose ourselves. I know a lot of moms go through this when it comes to our loving families. But, our own bodies, and minds are keeping us going. Sometimes you just need to sit down or go out, and be alone for a while with yourself, and reconstruct your mind or way of thinking for that time. Get into a habit of relaxing into your own thoughts, and it becomes quite peaceful rather than scary…and a process of accepting yourself.

People should be less consumed in their thoughts associated with someone’s “reputation”, or the fact that a “reputation” should even exist. Its called actually learning to love and accept people…which in reality could reflect into accepting yourself. You should never be concerned with scoring others, or even yourself. What a miserable life that makes for not just you…but seriously. When you have medical bills, tubes up your nose or coming out of your chest, pills to swallow…who has time to judge others or you? Think of who you are, and think of other peoples feelings. Relax. Love you, and love others!

-haley.

Heart Healthy Week: Willpower Wednesday.

Day Three…and it took some willpower to do this in itself.

Heart Healthy Week: Willpower Wednesday.

Lately, I’ve been annoyed. Like super annoyed. One of the biggest issues I’ve seen is people who want out of their situation but sink further into it. They want to change something so much that all they ever do is just talk about it. I’m totally guilty of this, especially when it comes to my “dieting.” I’ve wanted to lose almost thirty pounds for so long now I can’t even remember, yet I still find myself at Whataburger. I’m eventually going to have to dig down deep, buckle down, and get the willpower to change things. It’s not always about weight, maybe its about personal relationships or goals. People always talk about things, but never do anything. But where, and exactly what point do we hit before we say, “I’m actually going to do something!”

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I remember when I started dreaming about this blog, dreaming about my posters to go into a school, and dreaming about my lungs being on a shirt. The overall dream seemed SO big, and honestly just too much that I would never, in fact, get it done. This to me is exactly what everyone does when they envision something…they envision the end result. Just remember loves, the end result is the result of the massive amount of steps you took to get there. It’s not one giant leap! I did this with my novel. I’ve been dreaming of it for quite some time, even special little moments that would happen in the book. I had so many in fact that when I sat down to write it, I immediately became exhausted. It was just too much. This is why out of all times in my life I chose November (while in school) and signed up for National Novel Writing Month…and won. It gives you one month to write a fifty thousand word novel. Impossible? No. Why? Because its teaching you to sit down and work through the steps, and actually complete them so that you can say you finished something. After staring at a computer for hours, upon hours upon hours, living through fictional stories (which was emotionally disturbing), and existing in a state of tired that I didn’t even know I would live past….I finished, and won. I cried when the NaNoWriMo team sang the winner song on the winner page I was directed to like a complete stooge.

Steps y’all, just a step. Before you know it you turn around to see how far you’ve come, and you realize you’re at the top. Just have the willpower to take the freakin step that is required to go anywhere…and you never know where you might end up.

-haley.

P.S. – I might go do some sit-ups now…

Heart Healthy Week: True to Yourself Tuesday.

Second day into Heart Healthy Week! We’ve got this y’all!

Heart Healthy Week – True to Yourself Tuesday.

The other day while scribbling in the days date somewhere, I actually had the most ridiculous moment ever. I questioned for a second whether it was actually 2013, or 2014. Yes, I’m serious. It just seemed like it couldn’t possibly be 2014 already, in fact I remember when 2012 was supposedly doomed. Goodness!

With this all of a sudden being 2014, I don’t see how most of the public still finds it a problem making it over the hurdle of acceptance by others. We are so afraid of these “other people”, and their thoughts. What they are saying, what they are thinking, what they could possibly persuade others into thinking…and I’m totally guilty of it too. It’s amazing how another human being can scare us into the most miserable thing ever; not being ourselves. Within this little reality, comes another ridiculous reality. This is a cycle that will never stop. Children learn to criticize at such an early age, and breaking people down becomes almost a sport to the human race. It provides “great” gossip, “great” laughs, and overall a demented state of life.

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I feel as though finally, a part of the human race has risen from this zombie state of mind and stood up for the love of others. I’ve recently discovered a wonderful community called, “So Worth Loving” that has re-established my faith in people. Please check out their wonderful website as well as Instagram. We accept our faults, that we are guilty of these faults too, and it becomes a tricky balance of not being judgmental of judgement itself. Overall, you can’t be a people pleaser. It’s just not possible to please every soul in the room, and when you think you can, you find yourself hurting others to please in reality another human that could hurt you. There are only a couple of people you should love and stay true too. Yourself, and your best friends. The best friends that love you, not the idea of you. The ugly you, not the “only on your good days” you. You have to love yourself, you have to present the real you, and the right people will love you. When you’re fake, you attract fake. Thats why I’ve made it a number one priority to stay myself on the blog, and present the truth no matter how dark and twisty it can be.

Accept yourself, accept others, love yourself, and love others. To quote Sex and The City, “If I gave a damn about what all the bitches in New York City thought of me, I’d never leave my apartment.” Have a lovely Tuesday y’all!

-haley.

Heart Healthy Week: Be Your Own Hero.

Happy Heart Healthy week!! The week of “Valentines Day” I post everyday about something that is “heart” healthy. Not literally, like Cheerios, but things that will help your mental and emotional self this week rather than men, women, and “single awareness.” I think we get lost in a sea of red hearts and chocolate, and forget to love ourselves. This is hard for even me to write because this is definitely a challenge. Lets work on it together! Even if you are in a relationship, take this whole week to focus on you, and loving you…then love your person. After all, if you can’t love yourself, can you truly be happy with anything?

Movie Monday

I chose movie instead of music because I already did song of the week, which is Sentimental Reasons by the one and only Nat King Cole. An amazing, and true love classic. For those of us celebrating by ourselves this Valentines Day, I chose a movie with the perfect logo, and cutest story. I don’t need to see a couple fall madly in love, and I don’t need to feel isolated from the “love” world. I do need something that makes me feel like I can love life, others, and myself. Whip It| Be Your Own Hero. This movie has that perfect indie edge, and ridiculously cute story line. I fell in love with the characters immediately (who doesn’t love Ellen Paige), and how this was legitimately about being your own hero, and saving yourself. A great feel good, and laughable movie. Also, it takes place in the greatest state ever. So, relax and turn this flick on to save yourself from any doubts you could possibly be having. Life is beautiful, and so are you.

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-haley.

Emotions Are High.

Finally, Rocco is asleep and I’m done crying. I honestly do not know how you caregivers do it sometimes, and I reached my breaking point today.

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The meaning of Caregiver to us patients has always been who’s provided for us from the beginning. Who comes with us to appointments, drives us home after surgeries, and who is at our side when this disease shows its ugly side through our challenging bodies. I never thought much about how my Dad has felt towards me, and after being a caregiver to Rocco Ricardo through a very rough almost six months, I’m losing it. Rocco came to me shortly after being diagnosed, and was in a way a caregiver to me. He was the consistent lovable force through very ugly times, and looked to me as his “mom” for just as much love and support as he was showing me. From day one he has always been my baby, and this is truly one of those cases where he, in turn, rescued me. When his episodes started happening I really hoped for a change. I’ve prayed, shoved pills down his throat, liquids, diet changes, and we see his doctor more than I see mine in a year. I really felt that miraculously he would improve, and that the good phases he goes through would get longer, and eventually his episodes would just stop. After all, he is only three years old? Why is my eighteen year old cat still climbing his bony self up tree’s and my three-year old is in the house sleeping all day? It’s not fair. Not at all. Rocco’s bad month has extended into almost six months. His doctor said that his lungs are looking worse, he sounds worse, and dad and I are taking different shifts when it comes to administering treatments to keep him breathing. I cried today because I’m exhausted. Hooking tubes up, paying for medical bills that don’t seem to help, keeping him somewhat breathing, distracting him, and keeping him happy. I am so damn tired, yet I will still do all of these things even at four in the morning just to see Rocco somewhat breathing good (the best he ever will), sitting upright, walking around, and attempting to be happy maybe one hour a day. Last Friday I watched him aspirate a liquid medication that was supposed to help, and he almost left us. After an hour of treatments and hooking up my oxygen to blow in his face, he finally was breathing in big chunks of air. Today he coughed his lungs up, and treatment after treatment he put his head down, and tried to hide from me while I caught myself yelling at dad asking why he is acting weird, and to figure it out. I watched myself finally realize how terrified I am of death, and that my three-year old is definitely not far from this black hole. I realized that I have never been so scared for him, and that I am losing one of my caregivers. He was there for me when I was on bedrest, experimenting with treatments, and when I cried my eyes out into his black fur through a breakup. Now Its my job to make him as comfortable as possible, and to be his caregiver. I’m exhausted, I’m upset, and I don’t know  how the parents of any kid with a disease can do this. I cried today because I am so questionable of death, and am scared to see him in his last moments not acting as himself. Kuddo’s to you caregivers, and what you do for ANYONE, child or adult, that needs assistance. There are not enough words to describe the unknowing and numbing pain you experience as a caregiver, that you were not originally warned of. Thats all I have to say about that.

-haley.

Friday Favorites!

So its been a couple of months, and instead of Fashion Friday I’m doing a “Friday Favorites”. If you’ve never seen one of these before, I just talk about my favorite things lately to encourage y’all to branch out and try new things. Why? Because its life, and we need a little refreshing from time to time. Also, I don’t believe in posting about PH all the time. Yes, this is a blog revolving around a rare disease, but other parts of our life are just as important. “Don’t tell me you’re one of those people who becomes their disease.” (The Fault in Our Stars) I have an actual list I’m going to stick to so that every one of these posts will at least have the appearance of being organized. Each post, I will mention my favorite (at the time) music, makeup, book, clothing, TV show, something to do, nail polish, movie, drink and household item. Here we gooo.

The Music.

I’m always discovering new bands, and rediscovering my classics. When I tell people music is important to me, I’m extremely serious about that…hints why I do a song of the week. Music is what feeling sounds like. Right now, I feel Night Beds one hundred percent. Favorite song? 22 and Ramona. Their sound is so emotional, and moving. There are no other words.

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The Makeup.

Lately, makeup has currently been eating my face away. Every morning I wake up I find a new little red dot tucked in the corner or crease of another part of my face. Good grief. However, MAC foundation has saved my life! Its been my absolute favorite (I can’t tell you which kind because its like I got a personal fit, so go find your match.) What I can say is it does cover and matify your face. Also, Too Faced Primed and Poreless powder (can be found at Ulta) has been so fantastic as well for covering up those little ridiculous blemishes.

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The Book.

As much as I talk about The Fault in Our Stars, I don’t give enough credit towards Looking For Alaska my other favorite by the inevitable John Green. Its dark and twisty in the most perfect of ways, and I loved this book incredibly much. John Green is beyond talented. So, as much attention as TFIOS is getting, don’t forget to shine some light on Look For Alaska.

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The Clothing.

Oh, Jeez. Honestly, I’m obsessed with gold jewelry and vintage lazy finds. I love finding REAL plaid, not this shit at old navy that’s stiff and pink. I love finding the plaid that is soft, worn down, vintage, over-sized and the sleeves are rolled. I’m also obsessed with simple gold jewelry to accent this lazy look. It’s like taking a loud, boyish fashion yet giving it a delicate womanly touch. Try it, which might require a Goodwill run.

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The TV Show.

I am so obsessed with Sex and The City right now. I used to watch this all through high school, and at the time it was weird but cool. Now its hysterical in ways I thought I would never imagine, and it’s just always going to be that all time girl show. Plus, I love the writing in it, for obvious reasons. Sorry loves, I’m just really in touch with my chick flick side lately.

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Something To Do.

With the same old partying, shops, bars, movie theater’s…things just get tiring really fast. However, I never get tired of bowling. Honestly, it seems like the fun is overlooked. Everytime we go we all have so much fun, whether we are drinking or not. Not everyone is from the same small old town as me, but next time you get the chance, take a date, friends, family and go bowling. A little bit of competition, beer, and a whole lot of laughing.

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The Nail Polish.

When I first saw this color I had flashbacks to my first grade years. However, I think Essie did a great job of turning it into not only a fun, but chic color. I’m not quite ready for light “summer” nails, and this bright yet overpowering color is the perfect balance. Aruba Blue by Essie.

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The Movie.

This has been a favorite since high school, and has a special place in my heart. Dan in Real Life is that perfect little love story, that’s screwed up in its own ways to make you appreciate it even more. The characters, setting, dialogue, and music have always been fantastic. It’s just one of those “feel good” films to uplift your spirits in the weirdest of ways, and when has Steve Carrell ever been not funny? Valentine favorite this year y’all, even for the singles.

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The Drink.

I know I’m a Texan, but beer will never be my thing. Three words y’all. Cherry Vodka Sour.

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Household Item.

Recently, my obsession with candles has taken a new turn. I have them everywhere (usually tea lights) because I love the look in my room. Also, I’m a very picky candle-scent person. Usually I have pumpkin candles, evergreen tree candles, and that’s it. I hate the flower ones, the fruit ones, the cookie ones…just no. They get my stomach going, and before I know it I’m nauseous. I like something clean, or relaxed smelling….and y’all I have found the most perfect candle scent ever. Might I add it’s not seasonal, so it’ll be out all year. Its called Mahogany Teakwood… also known as Sexy Man. This scent is so masculine (not too much), and leaves my room smelling like a guy just walked out. That sounds tacky, but I really don’t care. This to me is such a romantic scent, and why not get it for yourself around this time of year? Helllloooo Ladies. Sexy candle alert! Buy it.

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Sorry this post is up late loves! Branch out, and now you have some new things (hopefully) to think about trying! Enjoy your weekend y’all with not too many Cherry Vodka Sours. 😉

-haley.