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A Sad Little Fantasy.

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

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

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

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

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

-haley.

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

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Life With PH

Hollywood is Still Hollywood, and I Am Still Sick.

Being a sick young adult in this world is not straightforward path. It’s a winding road full of surgeries, painful treatment, people who might not believe you, and even companies demanding money for saving your life and threatening to not save it anymore. With that being said, anyone who isn’t sick will not understand the sick. How could they?

The first thing I say when someone is experiencing a situation that I have never personally dealt with is, “I really don’t understand what you are going through, but I am here.” Why? Because it’s the truth. I think it’s a high form of ignorance to try to relate understanding when we really do not understand. How can we be understanding when we’ve never stepped into that world, we’ve only had a slight view of it? It’s completely different to see something, then experience it. You can watch someone chug vodka yet remain sober, but its different when you are the one chugging it too.

Lately I’ve spent some time reading very well written articles about how this is the year that social media is portraying “sick kids” and how it’s in style. Often I catch myself thinking, “no this isn’t a movie prop” when I walk around in public with my cannula up my nose. I definitely feel the anger as movies like The Fault in Our Stars rise to fame, and people become obsessed yet fail to realize that these sick kids are real, not just lovely on-screen actors. I’ve felt that ridiculous anger, believe me. These articles go so far as to say, and quote:

“But teenagers with illnesses do exist. I am one of them, and it hurts to see movies and television glamorize our suffering.”  –Lillie Lainoff at Yale University

But amongst this rage, I had a lovely realization that is much easier to deal with than that annoying anger which I have every right to feel.

When I noticed the white and black clouds of a bright blue book at Hastings, it succeeded in triggering me to read the back. I didn’t have seventeen dollars at the time (I know, ridiculous) but I ran back into the store on payday, and immediately made it mine. The minute I read about Hazel’s cannula I laughed and screamed. I was hooked, which is an understatement, just like all of America. I wasn’t enthralled because Augustus is “so cute”, or Amsterdam is romantic, but I was enthralled to read that someone could describe my feelings on paper. It was refreshing to read of an illness which you think I would be sick of; pun intended.

I can’t say for other TV shows, or movies, but I’d like to think that The Fault in Our Stars was anything but glamorous. So many people, including myself, described it as emotional death. Yes, it needed a little glamor because it was in fact a movie, and it was nice to experience butterflies for just a bit before impending death. I think what I love about John Green is not only his intelligence, but how realistic he is. His writing is real, and TFiOS is raw. John Green was a chaplain in a children’s hospital which inspired TFiOS. As John Green has stated a long these lines in an interview, “What struck me about these kids was the fact that they weren’t always smiling, they had no amazing wisdom just because they have cancer like everyone thinks, but they were just kids who happened to be sick.” Exactly. As I saw Augustus’s missing leg, Hazel’s hospital visit, her rapid breathing, a shitty author with a twisted view of sick children, and the raw yet horrifying scene of Augustus throwing up and screaming that he “hates himself” days before his untimely death was not glamorous. A lot of people actually hate TFiOS because it wasn’t perfect. But those scenes, as many tears as they provoked, and as much my heart hurt, I smiled. Those feelings were so real; those scenes were amazing. I hate myself when I have to sit down because my body is failing me, and everyone else gets to do what they want yet I am once again reminded of my own fault.

The fault in people saying “Hollywood has it wrong, and is glamorizing my illness” is that they are looking to people for understanding where understanding is not due. Stop getting mad because you are searching for understanding which is beyond unrealistic, just like this show titled, “Red Band Society.” That show may be unrealistic, which from my research it does in fact sound like a shitty portray of disease, but I think its lovely John Green wrote this real book, inspired by real kids, and it ended very real. Dont attack TFiOS. He wasn’t looking for people to understand, or glamor, he just created a lovely work of art. I personally experienced a version of that story, but I know that a lot of people who saw that did not, and they probably never will. They wanted Augustus to live, and hated Hazel’s walls that she built around herself, but I have a version of those walls, and I accepted Augustus’s death. It still sucked though.

So yes, I am aware of the anger of feeling like my oxygen is a movie prop, and the possessive thoughts of feeling like TFiOS is “all mine” and that these teen girls are clueless. But I catch myself in remembrance that I am expecting understanding where it is not due. Those kids will not understand my story, they weren’t meant to, and they can’t help it. They can only see my story, and respect it. So appreciate this art, The Fault in Our Stars, rather than bashing it. Because when they buried Augustus Waters, and Isaac couldn’t even see that because he just had his one eye he had left removed, I felt anything but glamorous. I smiled though, because I knew that I was a rare person who has cried those tears, and had those exact thoughts. I understood, I felt it was meant for me, and it was beautiful.

faultinourstars

-haley.

Instagram @haleyann92

Life With PH, PH Health

Too Much Pressure.

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

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

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

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

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

-haley.

Life With PH, Personal Life, PH Health

Four Years.

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

seventeen2Two weeks pre-diagnosis.

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

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

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

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Four years strong.

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

-haley.

Personal Life, PH Health

You Should Be Scared.

Oh, yes. Haley had to blog on it, because I think it heavily affects us PH’ers. If you’ve seen my posts on Facebook, I’m sure you are just all sorts of annoyed right now. Please, be annoyed, but seeing as how I’m someone who is alive because of medication that is used for erectile dysfunction, and I just so happen to have a uterus and ovaries (which apparently I have no say over) I feel strongly on this subject. My blog, my views. If you can’t handle, then don’t read it. You’ve been warned.

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Now you’re thinking, what in the world does Viagra medication have to do with birth control? Lets start from the beginning. All the way back religious freedom. For those of you who don’t know, Hobby Lobby just won its case in Supreme Court saying that because they are a “Christian” based company, that they will no longer cover for any of their female worker’s birth control. This is shocking to me, and disgusting on so many levels. Lets start with the basics and build from there. I grew up in an era where “Worth the Wait” came to your classrooms and preached to you on not getting pregnant, and if you chose to be sexually active then to be protected. They even told us little eighth graders and freshman where to get free birth control. I was raised in an era that wanted us all to have birth control to prevent making a stupid mistake that would not only affect us, but this child, our families, and so forth. Now, America has spiraled completely backwards as if to make women feel horrible about preventing an unwanted pregnancy. Really? You aren’t going to stop them from having sex. I don’t care what God you shove in their face. With that being said, now we want to take away their protection so we can force them to pop these unwanted pregnancies out? I hope you follow-up with those kids, and make sure they are taken care of. If you’re pro-life, then you better make sure that kid has a life. Otherwise you are just pro-birth. Don’t even get me started on why us PH patients can not have kids. Yes, we can get pregnant, but eighty-five percent of woman die before the baby is born because it accelerated the heart failure. You would deny a woman who might be able to take birth control (depending on her situation, I can’t) so that she might possibly get pregnant and die? You would shame the woman who can’t be on birth control, got pregnant maybe even with her husband, but had to have an abortion because she knew the pregnancy would be fatal? Shame on you, you judgmental Christian. Aww, forgive those serial killers though…

I think its disgusting that in 2014, as a woman, I am still fighting for full control over my body. I was born with my ovaries, my uterus, my hair, and my fingernails. I will do with them what I damn well please. Is this sex slavery? Are you just deciding for me what I shall do with my ovaries and vagina? No. They are mine. They are the woman that they belong to. If we want birth control, diaphragms, babies, no babies, or fifty sex partners then that is that woman’s decision. To deny them basic access to basic needs is a human rights violation. I think it’s a violation of freedom. With the Fourth of July coming up, it really makes me think of America and all these soldiers who have fought to maintain freedom in this country. But as I see all these stars, stripes, and fireworks being prepared, I’m not proud to live in America. Freedom is being taken from us one step at a time. Basic rights for the pursuit of happiness. Not everyone’s happiness involves pregnancy. In fact, most of you bitch when you’re friends get knocked up, and are not married. Are we really free anymore? Compared to other countries yes, but this is a scary path we’ve turned down.

Now, back to the Viagra. If Hobby Lobby can go into court and say because its “beliefs” that it will now basically force it upon its employee’s, and no longer cover birth control, what about other companies? I read in an article earlier, can a Jewish company now say that they wont provide any medication that is derived from a pig because they don’t believe in that? What about another christian based company that isn’t as sexist as Hobby Lobby, and wont cover things like Viagra? Guess whose treatment is Viagra? Yea, um, my life saving medication, as well as many many many other patients, even children. This is a very complicated, ugly, political tree that branches off in so many directions that should’ve been left alone. Someday, your treatment will not be covered by your employer, American. Why? Because they don’t agree with it. Ahhh, such great doctors, right?

Ahhh, now the religious part, my favorite. I am so tired of Christianity. Sounds horrible, doesn’t it? But really. I’ve grown used to the idea that Christianity is about forcing your beliefs onto another person. In this case, its proved so. “Well Haley, they are a christian based family, so these employee’s can work somewhere else.” Are they a church? No, they are a profitable business. What about the females that have worked there a steady amount of years? They now have to look for another job because God knows what their birth control costs out-of-pocket? The birth control that they’re taking for possibly cysts, or hormone therapy, or maybe because they just had a kid and don’t want another? Too bad now unemployed female in an already jobless economy!! Hobby Lobby thinks you should no longer cure those painful cysts, receive hormone therapy, and they think you should be the next 19 Kids and Counting star! Just wow.

Overall, it’s just a horrible thing to support. Especially if you are a female. How can you support a company that strips away your freedom as a woman? If men had to be on birth control, I bet they would have bacon flavored candy of birth control available to men at those check outs by those colorful sharpies. Ha, Religion. If we’re talking about the same God they claim to believe in, its funny how he gave us Humans a choice. He said,”You can choose to believe in me, and believe in everlasting life, or not.” He gave us freewill. GOD DID. Yet, these humans…do not.

-haley.

#BOYCOTTHOBBYLOBBY

Instagram @haleyann92

Facebook.com/phenomenalhaley

Life With PH, Personal Life, PH Fashion, PH Health

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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indycollage2

 

Life With PH, PH Health

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

Life With PH, Personal Life

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.

Life With PH, PH Health

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?

freedom2

 

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

Life With PH, Personal Life

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.