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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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!

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-haley.

More To It Than Meets The Eye.

Invisibility; one of Pulmonary hypertension’s biggest, and most irritating problems. I have three types of people in my life. The people who are there when something is up, understand, and are doing their best at supporting me. The people who are attempting to learn, and understand this confusing disease, then last, the people who have heard it, seen it, probably don’t understand, and “don’t have time to.” We are human, and tend to do stupid human things like judge others on their outward appearance. Ahh, what a fatal mistake. Doctors judged me on my outward appearance for years, so long in fact that when I was eighteen they didn’t know how much longer I was going to live. Yet, I looked perfectly healthy. I may look fine, and act fine, but PH is still an extremely fatal disease. Judging people by their appearances is not just a social flaw, but a life threatening mistake. I can’t even count on both of my hands how many children, just children, died from PH this year, and how many people are in the hospital PHighting it right now. Its ridiculous. So how much longer are you going to think that this is “no big deal?”

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With that being said, I hear patients talk all the time that they wish their best friends, significant other, parents, and sisters brothers cousin would understand. Remember PH’ers, they are not going to understand, and really it’s not their job to. Their job is to be supportive towards you. If they are trying to understand, then bonus points for them. Support is really the main key in lifting a patient’s spirits, not understanding. I’ve made a post like this before, but here I go again with just a little updated refresher!

THE DO’S AND DONT’S FOR THE PATIENT IN YOUR LIFE

–Don’t Suffocate

When something happens, a new diagnosis, loss of a family member, bad test result, we tend to flock to that person, and back them into a corner for a response. Wait until the crowd dies down a little, and for a quiet moment to show your support in a non-harsh way.

–Don’t Ignore It

“Everyone’s texting them, so it makes no difference if I do.” Really, I mean really? What animal taught you to think that way?

–Do Send a Card

The art of the hand written note, or letter, is pretty much lost. We have social media, texting, Facebook cards, and everything else that substitutes it. When someone receives a card, it shows that you went out of your way to sit down, and write them. It’s a nice thought that few go through with.

–Do Respect Privacy

It’s not everyone’s business that their cancer, disease, or whatever is back, and got worse. Some of us patients are extroverts, and vent when something happens, and others invest privately in a few people. Respect that if you are one of the few chosen. My rule is, if they’ve posted on social media about it, then its ok for me to share with who I think I need to.

–Don’t Offer Fake Support

There is a difference in real support, and “support.” For example, the girlfriend in the movie 50/50 wouldn’t go to chemo with her boyfriend, because she didn’t want to mix with those “bad vibes.” So she only drove him to treatment. Horrible, horrible, horrible girlfriend. Real support consists of hospital stays, visits, knowing exactly what is going on, checking up no matter what time it is, going to events, helping at events, and not leaving the patient even questioning if you’ll be there.

–Don’t Make It a Big Deal

Don’t freak out, make it big, and exaggerate everything. It makes it hard on the patient when the disease becomes the rock. It’s just something that happened to us. When you constantly remind us of what flaw we have, its annoying.

–But DO Make It a Big Deal

At the same time, don’t blow it off. For me, my “diagnosis anniversary” is a big deal. When you blow that off, that can set me off. When a conference, meeting, 5K Marathon, or support group meeting is no big deal to you, you are kind of failing, and being an asshole. It’s a tricky balance of knowing what to make big, and when to do it.

–Don’t Exhaust Yourself

We aren’t asking for the royal treatment by any means. This friendship, like any, is different and has its quirks. It should be no big deal to you. You can still make all the difficult stuff just as much fun, and easy to breeze through. Just like any relationship, it takes two people, and appreciation to make it work.

 

This by far isn’t everything, however, I’m on a series of different pain medications after surgery this week, and I’m having a little trouble focusing! haha! Thank you to every person who texted, prayed, checked on me, and showed true support. It means more than you know! Now, let’s have a fantastic Monday. Check out the NEW CONTEST UNDER THE CONTEST TAB!! Its easy, and exciting! Also, Song Of The Week is BAAAAAAACK! Enjoy the new hit single, Cheap Sunglasses by RAC.

-haley.

I Have No Fear; I Have Only Love.

Isn’t it crazy that after a while we don’t even feel alive anymore? After diagnosis, we spend almost every day of our lives PHighting to stay alive, yet after all this exhausting work we don’t even feel alive. We are numb; numb to hospitals, numb to needles, numb to bad news, and eventually numb to any type of emotion that requires work. How do we find ourselves on the track to living life, and feeling alive once again? Lets work on that this week.

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Obviously when we have to “fight” for things in our life we get pretty tired. Putting up a fight, I mean, doesn’t that prove our love for something? Fighting to stay alive because it’s so precious, fighting to keep someone in our lives because we love them so much, fighting to prove our points, fighting off feelings? Soon, you just realize there is too much fight, and not enough life. I think this society has glamorized “fighting” for things, as if it’s so “sweet”, and makes it seem worth it. What about relaxing? What about enjoying life? What about things unfolding organically, and naturally? What about someone who you don’t have to work on keeping in your life? That sounds pretty brilliant to me. Let me put it this way; I’ve fought for pretty much everything, including my life, obviously. I’ll be doing that the rest of my time until these medical geniuses find a cure. I don’t have time to fight for anything else. That goes for people who aren’t even suffering from some type of disease.

Life is so incredibly short. The only things you should be fighting off are dark feelings, dark people, dark demons, and of course for what you believe in. Dont confuse that with fighting for other people. Fighting for them to be present, fighting for them to understand, and fighting for them to love you. There is no time, no energy, and nothing else that needs to be wasted on fighting. I will not fight a feeling; if I have it, I express it, and what happens from there happens. I don’t drown my feelings out, I feel them full on no matter how awful they may be. How I deal with that is a different story. I wont fight to prove a point, I merely state my point, and I’m done. Above all, I will never fight to keep anyone, no matter how important, in my life. I only have so much room in my heart, and that’s precious. I caught myself these past two weeks fighting for other people, fighting feelings, and fighting against myself. Never again. Let life happen. Feel Free. I feel pretty alive right now, and I’m not fighting; not one bit.

-haley.

Check out the NEW contest, and our song of the week Gypsy by Fleetwood Mac.

Check It Out.

A post on a Saturday?! I shocked myself. This weekend will definitely be full of rest, relaxation, research and organization. I have a lot going on, and I guess I just need to focus myself to be able to give absolutely 100% on everything. Next week I really want to do a series I’ve been thinking on. Life has been so down, so blah, and I really think most everyone is suffering from spring fever. We want to get out, and live life, yet we aren’t quite there yet. The weather needs to catch up to our moods, and quite frankly until then, it’ll be up to us to change our moods. With everything going on, and things we have to manage and balance, we can feel quite dead inside. So, next week we are going to learn about “Feeling Alive!” Wooooo-hoo. And yes, finally, you have another contest you can participate in at your chance to win a T-shirt, and a surprise mystery item!! Stay tuned loves, and check out the contest tab for more info. 🙂 Have a lovely Saturday!

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Also, my friends, please support a group very dear to my heart! Find them on Facebook and Instagram to show your support, or even consider visiting! http://www.facebook.com/kwahadidancers    @kwahadi_dancers

Thank youuuuuuu!

An Artist?

So this is coming to you midweek. Goodness! Its been extremely difficult recovering from spring break, and forcing myself to work once again. Until then, I hope everyone is fabulous.

While speaking with a publisher this week on (hopefully) the future of my novel being in actual bookstores, he asked me what I do for a living. I’m the twenty-one year old college dropout (because I have no money), working for simple cash, being uncommitted, and I’m writing on the side. I sound like a should be dancing in a field with Jim Morrison, and daisy’s strung throughout my wild hair. That actually sounds fabulous, but when speaking with a publisher you really want to sound powerful. When I heard the words “blogger” spill out of my mouth, I realized how vague I sounded. It felt awful too because my blog is extremely important to me, and its my life. This is what I want to DO with my life, and its my art quite honestly. It really sucks that everyone, literally everyone, and their mom has decided to take up on this so-called art.

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Now, lets back up a bit. I’m all for art. I want children, adults, scientists, and their best friends to love art. I hate what education has become which is really not learning at all, or wanting children to feel free. It’s about turning them into little mathematical and English reading specialists. Personally, I think we should all be painting, and studying life…which is why I just can’t work in education anymore. Basically, I’m an artistic advocate nut. Its crucial, at least in my life. Art isn’t something everyone wants to do, and those people who pursue it can do amazing things. There are a lot of artists out there, and different types of artists that make it extremely hard to get recognition. There are artists that are having fun, some stumbled upon their profession, and then there are those who are actively chasing this dream. I guess I stumbled, and immediately started chasing. I’m trying to improve myself, my thought process, my words, my time, my blog, myself, others, and I love what I’m doing. I take it very seriously. Its art; I live it, breathe it, speak it, and appreciate it. Its my life.

With all that being said, I’m incredibly proud of the people who want to be artists, and come to me asking for blog advice because they want to start a one. It’s an incredible thing to know your words (hopefully) reach people. For me, even if it’s just one its amazing, and fulfilling. However, I do have one piece of advice. Writing is an act of faith; it’s an art. All writing is different, just like paintings. Picasso does not look like Leonardo da Vinci. They are a bit distinctive, but they worked their poor insane asses off not even knowing they would be in textbooks. If this is not a faith to you, or an art, then double think what you would be doing, and what you would be typing away about. Your time, your words, and your dedication will be vastly important. I take my art seriously, because it can be scary. That’s what bugs me about people who say, “Art is fun, don’t take it so seriously!” It is amazing, and fun, but its a way of life! It’s a grinding your teeth, crying over characters you made up, upsetting sometimes, all time beautiful endorphin rush that is comparable to a runners marathon. It’s ridiculously difficult, and amazing. Art is not just about appreciation, being poor, dubbed as insane, but about compromise and exposure. You are compromising your lifestyle, money, health, and sanity to expose your feelings, and make sure they appear beautiful in a way not only to yourself, but others. This is a profession; this is the only life I know. Thats how I call myself a blogger, and an artist.

-haley.

P.S – New contest coming, song of the week is Love Street by The Doors, and find our Facebook Page and Instagram!

Hello Spring Break.

Finally, I have a decent amount of free time. Rocco and I are loving just vegging out at home. First off, I just wanted to say thank you to those who have submitted their pic for the PH Pets contest! There is still one day left! Check out the contest tab for more info. Also, I wanted to say a HUGE THANK YOU to anyone who has ever clicked on this page, commented, voted, liked, shared, or supported. It means so incredibly much to be the winner of the Pulmonary Hypertension Association 2014 Young Outstanding PH Citizen Award. I’ll be at the conference in Indianapolis to receive the award, on top of all other functions, and I cant wait to meet y’all!

Moving on…

Since we’re broke as a joke, Rocco and I will not be hitting the beach, the mountains, or a resort. However, we are determined to make this a fantastic spring break. So here are some things to keep y’all busy my loves, and feeling fresh!

WORK OUT

I’m not saying go run some laps, but as a heart and lung patient, it is important to keep yourself as healthy as possible. Unless being told by the doctor, you should do everything possible to stay active without putting yourself in dangerous health situations. I used to be a dancer, so I will always have that love deep in my failing heart. I absolutely love Yoga, and pilates. If you can, start with simple Sun Salutations to your favorite (relaxed) music. I choose Frank Ocean sometimes, for all you young kiddos out there. If you’re wearing oxygen, make sure you have a long cannula so you can set your oxygen down, and move like so without choking yourself out. The goal is to control your breathing during these movements, and to keep your muscles controlled, and head and neck STRAIGHT (aka, mountain pose.) Do not bend your head and neck. Also, squeeze your gut to maintain your balance. If you choose to do hip opening exercises (they feel AMAZING but will PULL a lot at first), they will work on releasing all the tension in your hips. Women carry a ton of stress in our hips, so opening and loosening these muscles will feel fantastic after a while, and you may even notice yourself emotional after this exercise. Remember, do NOT do this before bed thinking you’ll tire yourself out. Your body will release endorphins to make you feel great, energized, and refreshed, which will do the exact opposite. Do these in the mornings to help yourself wake up. 🙂

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GET ORGANIZED

Spring cleaning is underway! It’s proven that when our physical lives are cluttered, we feel literally cluttered, and stressed. It takes a lot to be able to get on here, post, respond, and stay on track on top of working, and what not. I feel like I don’t have time to clean, but I promise, it’s all about time management. Take some time each day to work on one side of your house,  or room. The other day I completely cleaned my room, and today I brushed Rocco’s winter coat off of him, and gave him a flea treatment. It’s the little things to get out-of-the-way that will truly help!

photo(2)Where the magic happens. Ha, just kidding, sort of.

GET OUTSIDE

Yes, feel the sunshine on your skin, breathe actual fresh air, put down the phone, and gadgets! Social media has been killing me lately. Today, the weather has warmed up (almost the 70’s), and sister and I are taking advantage by going and walking! If there wasn’t wildfires, I would be in Palo Duro Canyon. Anyways, get outside and DO something. Unless, its snowing…BUT, if there is sunshine, you should be under it!

mountainsThrowback to being in my mountain home.

A LITTLE SHOPPING

Of course, my favorite, unfortunately. Drive to your favorite place, vintage shop, or even shop online if you have the resources. If you’re in a tight spot, one of my favorite things to do that is shopping, but doesn’t cost a dime is shopping online, but only putting your favorite items into a wish list! When you eventually hit payday, all your favorites are there to choose from. I’m excited, because I just ordered a fabulous shirt from So Worth Loving. Check them out!

BKCM39 CLUELESS (1995) ALICIA SILVERSTONE CLUS 001Clueless is Classic

Enjoy this new season approaching us loves! Stay tuned for more to come this week on some more serious issues, as well as PH fun! Our song of the week? Better by Saint Pepsi. Soooo catchy.

-haley.

Follow Haley on Instagram! @haleyann92

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

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. 🙂