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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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

Fashion Friday Favorites!

Its FRIDAY y’all! Get happy! Friday Favorites are something I love doing, but when is the last time I did fashion friday? Today you’re getting two in one. How special! Friday favorites are existent to encourage you to branch out, and try new things. That makes life just a little more fun. Fashion Fridays are geared to help us with our bodies, and things we might be suffering from as patients. Onward!

FRIDAY FAVORITES

 

-Music

How did y’all know?! Of course its the Fault in Our Stars soundtrack! The directors, and whoever else did an amazing job with music just like the movie itself. This is something I was most worried about because I am a huge music person. I wanted my already favorite movie ever to have a fabulous soundtrack with unknown songs. They are so fantastic! I’m having a hard time deciding my favorite, but overall, I cant wait to have this on Vinyl.

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-Makeup

I’ve invested in so much makeup lately, I do not know where to start. I think the more you experiment and get used to makeup, the more crazy you get. LimeCrime is probably my favorite to glance at, and finally I ordered some of their product the other day. They have extremely bright colors (even PH colored lipstick!) and I ordered the Black Velvet matte lipstick. BLACK?! Yes, black. I’m extremely excited to wear this “color” and test the high quality of this brand. So far, its had fantastic reviews. I’ve checked my mailbox fifty times already this morning since its supposedly out for delivery. I’ll post follow-up photos on Instagram if you are curious!

limecrime

-Book

Lord have mercy y’all. I’m in the process of trying to read like five books at one time. I’m really trying to get through An Abundance of Katherines by John Green, because anything by that man is amazing. I’m also fixing to start something called Never Let Me Go that a friend suggested. I also want to read Perks of Being a Wallflower, and Empire of the Summer Moon. Thats my ridiculously long reading list right now!

books

-Clothing– FASHION FRIDAY – FAT ANKLE SUMMER FASHION

Honestly, like with makeup, I’ve bought a ton of new clothes lately. This whole new trend with these flowy bohemian printed pants is absolute perfect summer fashion. No restrictive jeans, no shorts so you can hide your legs if you want, and if you’re swollen they hide your ankles! However, these printed pants are a little tricky. Unless you are a literal stick, you HAVE to try them on. They can hug in all the wrong areas almost 100 percent on the time. The super stretch spandex ones (mainly found at boutiques) will hug every crevice on your body, and out line every area. Beware. You really want to find the pants made of actual cloth, like cotton, and what not. I’ve only found one pair that hugs my legs in a good way, fits comfy, doesn’t outline weird areas, BUT are ridiculously long so I’m about to cut them. They are by Billabong, and were worth the investment. So if you are looking to spice up your wardrobe, remain comfortable, and hide some summer Edema, look into these lovely things! Pair with a neutral top that is not baggy, or printed. Remember, ALWAYS try them on!

billabong

-Show

I jumped on the Meth bandwagon…and started watching Breaking Bad. I wasnt too impressed at first, but it definitely has me hooked! If only I was making that kind of money to pay off my medical bills. It is a little rough, but its the kind of twisted that you end up swallowed in. Plus Aaron Paul? Um…Yeah, B*tch! (You’ll get that later.)

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-Indy

Words cannot describe how excited I am to experience a new state, city, and to meet PH patients in person! It’s insane to me how the same month TFiOS comes out, I’m going to the exact city it took place in, and filmed! Lord have mercy. I encourage everyone to travel as much as they can. Make the arrangements, and stay safe while traveling! It’s not worth to sit at home. It’s a beautiful life; get out and see it before it’s over.

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-Nail Polish

It may be summer, but I still can’t get into the swing of a bright polish. I’ve been wearing a lot of white, and just bought a new Essie polish titled, “Bahama Mama.” It sounds like summer, but it’s actually a pretty dark shade as well. I know, I know…but I don’t care.

bahamamama

-Movie

No comment.

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-Accessory

I’ll just throw it out there that Texas is the best, hahahaha. Besides that fact, the state shape itself is just awesome and the most identifiable. I’ve been searching for a tiny little Texas necklace for a while now, and finally found one yesterday in a  small town boutique. Its perfect! You can shop on Etsy if need be to invest in your state pride.

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It was a somewhat short Friday Favorites, and Fashion Friday all rolled into one! Enjoy your Friday loves! I’m going to continue to drink coffee, listen to the TFiOS soundtrack, and repair myself emotionally. There is a reason its the number one movie in America right now! See some of y’all at conference. GET EXCITED!

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

 

O2 and Iphones. What?

So, the other day (by the other day I mean like two months ago) I found myself experiencing some chest pain, and I just knew my oxygen was low. I found my little O2 sat machine, and of course it stopped working. We’ve attempted to revive the damn thing several times, but it flat lined a while ago. So, I settled on taking my blood pressure, but as anyone would know that still isn’t the same as knowing where your oxygen is. What to do…

I turned to my phone of course. Why not? I ask the damn thing questions, it has to be able to know something! Sure enough when searching the app store I found the perfect something. Its called the “Oximeter” app by DigiDoc. With that being said, this is an app on your phone. NOT a thousand dollar machine that ensures accuracy for the safety of the patient. This is an app, on whoever’s iPhone that downloads it. If you one hundred percent depend on this thing, then it’s probably not a good idea. You really have to get a feel for it, as well as its faults and quirks to know your true health, and know if you are at risk.

How is it measuring my O2, and heart rate? You take your fingertip and cover not only your flash, but your camera. It takes a couple of seconds if you are super still, and after its finished, it records your results. So it’s always nice to have a record of how you’ve been to show your doctor. Now, Accuracy. I’ve noticed when my oxygen is low the app freaks out. If it is below a reading of ninety percent, it will just saw low rather than how low. That kind of bugs me. But, at least I know its below ninety. Usually if I’m feeling not-great, and it reads something like “96” or “94” I know it probably means 92ish. Overall, I take in to count how I’m feeling, breathing, heart rate, BP, THEN that number.

pulsox

I think this is a fabulous app to have just in case, but should not be your only source. For right now its mine because I’m not a huge risk. But when traveling, and bringing your machines isn’t always an option, this little app should be. For $2.99, I think it’s a great “back up” investment.

Happy Throwback Thursday everyone! This is absolutely my favorite “Picture day!” Anyone knows by now that Instagram is my favorite app because I love pictures. Here is my throwback pic! This was taken at Philmont Scout Ranch in Cimarron, New Mexico. My brother was getting back on the Kwahadi Bus (Native Pride!), and we were telling him bye. I’m sure Dad was helping load the bus. Pictured from Left to Right: My Grandpa, John, Mom holding Holley, then meeee. Enjoy today!

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-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Takes One to Know One.

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

augustus

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

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

Only the sick understand the sick.

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

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

Freedom; Oxygen of the Soul.

Lately I’ve been catching myself saying, “I can’t do that because…” , “Lord knows what would happen if…” , and blah blah blah. It hit me how much I’m limiting myself because of my dysfunctional lungs. I don’t even try, I just instantly throw on the brakes. Therefore, I’m always on the sidelines, I’m always watching, I’m always wishing that I could do such fun stuff…screw it. I’m doing it. Its JUNE! Its summer! It’s a beautiful time of year to crawl outside of your cave, and look into things you’ve never considered. Am I suggesting a running with the bulls? Of course not. But why, why do we make our priority in life to just survive it?

We really tend to find ourselves existing within the limited walls of our disease. We make excuses, we follow doctors strict orders, we take those pills and endure these side effects, and we are therefore living in a disabled rutt. Sounds messy doesn’t it? Thats because it is. This is part where doctors usually want to strangle me. The whitecoats (doctors) are used to seeing the worst of the worst, and prescribing the up most strictest care. They have to, and I respect it. But they really do forget about the soul on the inside of the defective body. I’m not letting my shell rule my life; end of story. I will take care of my shell so that I may continue to have a life, and I will be careful with my shell, but I will not enter the twilight zone of getting so lost in the care for this disabled shell to keep living only to realize I have no life. Make sense yet?

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I’m getting better at taking my pills. Stay on top of your meds, endure the stupid side effects, and communicate with your doctor.

My oxygen goes where I go, just in case. Yours should be a travel companion too, despite whether you wear it all the time or not.

I plan for the worst, and hope for the best. You should be doing that as well. Think through what you’re doing, and the possible outcomes.

Educate yourself. The more you know about lungs, blood pressures, hearts, medication do’s and dont’s, the absolute better.

Know your body. Truly know what you can and cannot do. I go into over 10,000 elevation every summer because I know I’ll have no issues. What happens if I do? I have all my meds, oxygen, BP&O2 monitors, and I know where the nearest hospital is.

Do what you love. Try everything in small quantities, and don’t push your limits.

There is so much more to life than just surviving it.

-haley.

Find Haley on instagram! @haleyann92

Find Haley’s Facebook page! facebook.com/phenomenalhaley

Patience is Prettier.

Happy June everyone! I can’t believe I’ve finally made it to this month. Exactly two weeks until I leave for Indy! This is a very busy time, and I wanted to thank everyone for their patience. Not only is attitude a very tricky, and contagious concept, but I think patience is as well. How can I put this…

I am not just some college kid lounging around, going out with friends, and blowing things off. My average day consisted of getting up in the morning, working at the school until around three, then from there going straight to my other job till around eleven o’clock at night, coming home, trying to catch up on blog things, but most of the time I fell asleep. I am a very busy person. Now that school is out, I’ll have little opportunities and small windows of time to get things completed. In basic words; I push myself enough. If you push me, I will push back.

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I’ve encountered some pushiness, and non patience. I understand frustration, but I will not be understanding in these situations. Right now I’m lucky enough to remember to make a blog post! So, patience. This is something that is quickly trickling out of our economy. We have smart phones that process things faster than computers, we have supermarkets with two-hundred cashier lanes open so you can get through faster, we have fast food drive throughs, and we want everything done now. We’re living a life where we don’t really have to be patient. So when the time comes to wait a whole 30 seconds for the internet to load, driving around a wreck, or waiting in line for a spray tan, we FLIP. Patience is a fabulous thing to exhibit. To hear the excuses of “I’m a paying customer” shows me that you value money over respecting another person. To hear “its their job” is another example of the non-respect you have for another person. When you are understanding, show compassion, and take time to evaluate the situation rather than just your feelings on your side of the story it begins to get easier for everyone involved. The other day I waited almost forty-five minutes on just my food. I got a little questionable of what was going on, but was not upset with my waitress, or cooks at all. I was once a waitress that lost an order too. This is life, full of thrown together mishaps, and somehow (maybe) we make it out alive.

Please look around and acknowledge the humans around you. Exactly that, they are human. Patience was built into your body. Start exercising, and practicing it more; I’m having to work on it too.

Thank you again for everyone’s patience.

Congrats to Karla, our Hazel Grace contest winner! TFiOS comes out FRIDAY! Our song of the week is Icarus by White Hinterland. Perfect, breathable summer song.

-haley.