Life With PH, Personal Life

Onward!!

Holy cow! It’s finally here; Conference week. I’m heading off to Indianapolis in about seven hours (its almost midnight)….and I need to pack. I know, how shameful. Rocco is feeling anxious, and its making me sad to leave him, yet anxious as well. Most of you know I was nominated, and won The Pulmonary Hypertension Association’s Outstanding Young Adult award for 2014. I am extremely grateful, and proud. I know we are always talking about how much this disease sucks, but really, I want to thank my disease for what it has done to me. Its given me a privilege to dig way deeper into myself than I would have ever done before, to find out who I truly am, its taught me what it means to survive, how fragile life is, and to conquer. I am thankful for my shitty lungs.

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Sooo, since I will be on the road (and worrying about Rocco 24/7) I don’t want to leave everyone out of the experience! I will be vlogging the whole time. Vlogging? Yes, vlogging. I guess I will take a Claire Marshall whack at this, and see what y’all think! I can’t wait for everyone to see the experiences (including Funky Bones park from TFiOS), and until I can upload it all you can follow me on my social media sites!

Song of the week is Boom Clap from the TFiOS soundtrack because this is the song they played while Hazel and Gus arrived at their destination in Amsterdam. Such an exciting song! Find, and follow me to keep up with this week! Have a lovely day everyone!

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

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Life With PH, Personal Life, PH Fashion

Fabulous Friday Favorites.

Happy Friday lovelies! You made it to the end of this week, we’re going to make it a fabulous weekend, and smile like crazies. 🙂 I don’t even know anymore. Its been a rough couple of days, but a week ago today I was in a hospital bed. I don’t know what can be worse sometimes? Needles, and people monitoring how much you pee, or dealing with people who betray you? Hmm. Anyways! Its Friday favorites time because it’s been a while, and I’m not quite feeling fashionable. For those of you who aren’t familiar with this type of post, I do it to encourage you to branch out and try new things! Soo, lets jump right into it!

 

MUSIC

I’ve been on a Fleetwood Mac kick like nobodies business. Seriously, they are timeless. When you want to feel happy, you can turn on a song like Gypsy, and when you feel like crying you can listen to Silver Springs. I’ve done my fair share of crying! And come on, Stevie Nick’s fashion? WHO can get over that? Purely amazing. I would love to be her, right now please.

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MAKEUP

This sounds crazy, but I got Chella blue eyeliner in my Ipsy bag last month. What is Ipsy? For ten bucks a month you get this cute little bag, and awesome makeup designed around your preferences delivered to your door. My bag for this month is on its way, and I’m excited! My first bag did not disappoint me! Primers, eyeshadow, then blue eyeliner. I know, you probably just rolled your eyes. I literally just read an article (I think in Glamor) about how blue liners are in style, and fun to play with. This brand of blue liquid liner is AMAZING! Goes on clean, easy to apply, and a fabulous shade. It looks very chic, and yes I wear it all the time. If you want to see what all the buzz is about on Ipsy, or join, you can check it out here: http://www.ipsy.com/r/7aj7. It’s a great deal, and a great thing to treat yourself to once a month, even for younger girls. 🙂

ipsy

BOOK

I’ve been attempting at getting involved on Hitrecord. If you’ve never heard of it, it’s an open collaborative company that was started by (the amazing) Joseph Gordon-Levitt. His ideas are brilliant, and what makes Hitrecord brilliant is these just aren’t his ideas. People from all over the world submit writings, pictures, designs, audio, videos, and they turn it into a TV episode, or create stories, or BOOKS, or songs. Its fantastic. Check it out if you’re an artist, or think you might want to contribute. I’m excited to read this open collaborative book that came out (three now, I believe) The Tiny Book of Tiny Stories.

hitrecordbook

 

CLOTHING

I am so beyond obsessed with kimonos. They are so in style right now, and I hope they never go out of style. They make a statement, they’re comfortable, they’re artistic, they are everything. You can find one that I’m sure would interest your style pretty much everywhere. Forever 21, Etsy, and if you are willing to spend big bucks, Free People. Channel your inner Stevie Nicks, and sport a kimono.

kimono

 

SHOW

My inner 90’s streak has been peaking through this month, and I’ve been watching 3rd Rock From The Sun almost nonstop. The humor is fantastic especially on a bad day! Sit down, and watch Joseph Gordon-Levitt’s sass mouth, and long hair cheer you up. I never thought alien humor could ever interest me.

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NAIL POLISH

This month has been so crazy that I don’t even have an official favorite nail polish picked out. But, I’ve been wearing nothing but bright pink on my nails to make me look tan. So, such brands as Piggy Polish, and China Glaze have great neon-like options. You do need to be prepared to have a glossy top coat ready (you should have that anyways) because they don’t say on the bottles, but most of these colors will dry matte. AKA, no shine. So, prepare thyself!

chinaglaze

 

MOVIE

I warned you about the 90’s streak….but I’m so in love with 10 Things I Hate About You. If you, or your daughter is having a sucky day, pop this flick in and enjoy Heath Ledgers adorableness, as well as Joseph Gordon-Levitt. Such cuties, and the perfect 90’s comedy. Rest in peace Heath.

tenthings

 

DRINK

Seriously, I haven’t been drinking a lot lately, or going out. I’ve hit an exhaustion period with my PH where all I want to do is lay around the house. However, when I did go out, my friend Jess always gets me a White Russian. Vodka, Kahlua, and milk. Delicious.

whiterussian

ITEM

Like I said, this has been a super chill month, and I wish I had better answers for y’all. But, my favorite and most used item this month would be my Betsey Johnson cards. I’ve been sending out Thank you to loves who have helped me, and what not, and I’ve loved writing actual letters. Plus, who wouldn’t be excited to write with a Betsey Johnson stationary?! You can find the collection at your local Michael’s store.

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Okay loves! I know I wasn’t super exciting, but its the end of the week, and we are all tired! Celebrate, smile, and relax. Dont forget TODAY is the LAST DAY to participate in the current contest!! Check out the CONTEST TAB for more details!! 🙂

-haley.

Life With PH

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.

stevie

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.

Uncategorized

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!

Personal Life

Silencing Thoughts.

I guess when you have been “up” for so long, the very second you realize you’re “down” for the first time in a while, it’s a hell of a fall, and it hurts.

Tonight was the first time my stomach shriveled into a little ball, and wanted to be anywhere but locked up inside this body. After hours of attempting to try on “summer” clothes, I gave up, storming out of the store with “workout” gear instead. I drove around for hours today trying to shake my body conscious thoughts, but I felt it eating my mind alive. Upon arriving at home with a salad, and new diet pills, I did some extensive research on getting published which is pretty much a road block for anyone who isn’t someone. Over, and over again I felt attacked by the repetitive negative feelings, and found myself held a prisoner. For the first time in months, the whole idea of suicide was once again dancing around in my mind. What a silencing thought.

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I honestly don’t know how we get to this point, or how powerful such negative emotions can be. It’s ridiculous that even when we feel happy, or positive, it almost never holds a candle to what negativity can do. The dark, the horrible, is just so destructive. What amazes me, and what is viciously dangerous, are people who can hide it. People who can swallow back the pain until they are so numb that they do not feel the effects of  a knife sliding across their wrist, a bullet going through their skull, or a noose snapping their neck. Thats what is scary, are the people who suffer in silence, and the people who don’t state the obvious for them. Suicide is not only terrifying for the individual going through the actions, but also for the friends or family who will be left standing to plan a funeral. What you are doing is vitally important.

Now, with that being said, no I am not fine, and no I am not okay. Eventually, I will be, but until then that is the dumbest question to ask. Your job is to show support to anyone who can’t be themselves because they hate who they are so much. Your job is not to say vague phrases, and hope that ignoring the harsh yet truthful words they need to hear will help. Your job is to not criticize, or judge. Your job is not to throw things in their face for them to “deal” with. Your job is not to make us feel different, or “special” in any way. We don’t know what makes us this way, we just now that we are this way and it hurts. Dont make us hurt anymore than we have to; help us heal.

-haley.

PH Fashion

Fashion Friday: Always On Time, Sort Of?

Well, here’s a little post to lighten things up on the blog. My views will never change, and its so refreshing to see y’alls comments, and sharing your stories with me. I love to see that there are real people out there that had to deal with real problems.

Moving forward! As always!

Happy Fashion Friday! After all this nasty talk, fashion is a for sure cheer up. Lately, I’ve gotten so many compliments and just people in general noticing my giant gold watch. I’m not kidding when I said its giant. I was super inspired by my favorite fashion vlogger, Claire Marshall, and the giant gold watch always on her wrist.

photo(12)As seen here, and her lovely cat Bruce! Y’all can follow her on Instagram or Youtube @heyclaire

When I was still working in retail a couple of months ago, there was a mens watch, gold, huge, and everything I needed. I, of course snagged it up, and I absolutely love it! Yes, its HUGE, but its fabulous. Claire’s I think is in fact a mens watch as well. Anyways, back to actually wearing the watch. A watch should be versatile, as well as add a sophisticated touch to your wardrobe. I hate seeing the giant colored ones, and what not (unless you are Betsey Johnson), so always keep your wardrobe in mind. Nina Garcia frequently wears mens watches as well because its very chic for a woman to be able to wear a mens wardrobe with elegance, and it can even be a tease. Hints the 80’s look that slammed our runways around ’84, and is still popular these days.

watch

I love my gold watch. Keep your eyes peeled, and if you find a mens you love do not be afraid to throw it into your wardrobe. Chic and sophistication at its finest. Thank you to my wonderful co-worker, Anthony, who had to take a billion links out of it to fit. Have a fantastic Fashion Friday my loves!

-haley.

Life With PH, PH Fashion, PH Health

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. 🙂

sunsal

hipopeners2

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

Personal Life

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

Life With PH

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.

Life With PH, Personal Life

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. 🙂