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Facts Vs. Feels

America is so scary right now. Outbreaks of racism, the persecution of women and our rights, and it just keeps going from there. I’m astonished at how much America doesn’t care. We are more interested in who has the newest drama, or the funniest posts rather than things we need to get involved in, and stand up for. I guess that is just too much work.

Let me just say this right now; if you support Donald Trump then you openly support racism, sexism, and a type of unprofessional that cannot even be put into words because it is so horrific. He is the modern Hitler. If you are woman, and you support Donald Trump then you are just plainly an ignorant person. Why? He thinks you are a disgusting animal, pig, and a sexual object cut out just for him. Have fun with that! While arguing last night with someone over the Keystone Pipeline problem, they stated that they like “facts more than feels.” I’m so glad they stated this because I was finally able to put a finger on what exactly is wrong with America. While it is important not to get carried away with emotions on some subjects, I don’t know where we would be without “feels.” It’s kind of important to feel, and to feel for others.

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For example; a lot of people right now are undergoing medical treatment for rare diseases that they did not choose to have, and that are beyond costly. The facts are that insurance companies have laid out the rules of what they will, and will not cover, and after that it is the patients responsibility to meet the cost of treatment. If the bills are not paid, then the treatment will discontinue. This happened to someone I knew once…when he was around fifteen years old. Despite him having cancer, they were facing the discontinuation of medical care. Those are the facts. The feels? People seeing that this is a fifteen year old DYING of cancer. A fifteen year old with one parent who exhausted her insurance limitations, and cannot pay for medical bills because she’s at her sons side. The feels were people feeling for this situation and lending assistance that they could, paying for treatment, and seeing him to the end. Ps – he lived because of people’s “feels.” The facts are that my Adcirca is around $2,300 monthly. Its a fact that my dad and I cannot afford a medication to keep me alive. So the fact is that my medication will no longer be supplied, and yes I will die. The feels are a non-profit company that “feels” for patients like us, and picked up the tab for an entire year. Feelings are what keep me alive, and also someone feeling for people with this disease, and finding a method of treatment for us.

We all think highly of people because of their feelings, and what they can do for others. I will always respect a person more not because of what they are required to do, but because of what they extend themselves to do when they are not expected to. That speaks much more highly of someone’s character.

On a side note, I will always feel it is my job to protect my Mother Earth who is sacred. Water is life, and it cannot be replaced by the human hand. Mother nature, mother earth is a gift, and she is life-giving. If we continue to contaminate, and destroy her, we will be nothing. Keep that in mind if you choose to support Keystone Pipeline. Those are the facts, not just the feels.

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Song of the Week is Sometimes Part One by the Nth Power who I got to see live at Gathering of Nations.

-haley.

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Lose Yourself.

Can I just say that one of my most favorite movies in the world is Don Jon? A lot of you haven’t heard of this because it’s an independently produced film with the fabulous Joseph Gordon-Levitt. Some of you have, saw the preview, or got five minutes in, and turned it off. If you can get past all the porn, and make it to the message of the film it kind of blows your mind.

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I’m pretty much a huge fan of whatever Joseph Gordon-Levitt does mainly because he goes all out. Yea, he’s kind of a jackass, but he genuinely loves his career, and strives to improve it while providing a deeper meaning. He’s not just an actor, he’s truly an artist. Moving on from my Joseph rant – most people would look at Don Jon, and think “this movie is outrageous.” But you see, that is what is so good about this movie to begin with. We like to watch “fluff” films that yes, may entertain and give you warm fuzzies, but films like this to me are so much better because they are realistic with some movie glamour sprinkled on top.

Don Jon deals with the porn addiction that of course everyone deals with. Yes, pretty much every guy watches porn, and soon it becomes hard (no pun intended) to break away from watching it even in relationships. I really don’t care about porn itself. In fact when it comes to every guy I’ve talked to, we’ve always been able to openly discuss porn. It’s great when you can have an open relationship like that with someone. So now, we have two major problems presented. The women who refuse to believe that porn is active in their relationship (despite how well he covers his tracks), and then the porn problem in general.

Lets just openly state that porn in general is unrealistic. None of it from point A to point Z happens that way. Mainly because that isn’t real sex; let’s just face it, it’s fucking. There are no fireworks, no connections, no huge explosions because it’s just an act. Everyone is pretending from the little skits they put on, to the costumes, all the way down to the actual sex. No one is having the best sex of their life, they are literally just using another person for a physical function. There really isn’t even another person there. What makes it even worse is that people get disappointed by actual sex because of their “porn” expectations.

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While porn may seem natural to us these days, what is so unnatural is the fact that we see each other as objects. Just things to ride, and get us to some other destination in life. Women are not women, we’re just “pussy” with a phone number attached sometimes. Guys are just “d” to others as well. Not people with obsessions, culture, passions, fantasies or anything…

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It’s a very unhealthy life we’re living when women are exploited as sexual objects to merely attain, and men are as well (Magic Mike.) It teaches us the break all the “scary stuff” down like emotions, and attachments that really despite all the work are kind of awesome, and teach us to love a person even more. I recently was talking to a guy, and he expressed that we didn’t need to know anything “bad” about each other yet. Like deep emotions, past experiences, and everything else. It blew my mind because liking someone, getting to know someone does not just depend on the good. I love people even more when I know the “bad” parts. It just makes them beautiful despite how much you have to work through it. It makes you love them that much more because you love all of them. If someone doesn’t care to hear everything about you within a decent amount of time then you probably shouldn’t care to stick around.

Stop expecting a fantasy whether it’s in a relationship, or in the bedroom. Instead expect tears of joy, laughter, or sadness. Expect emotional outbursts, fights, or no text. Expect passion, late nights, faults, and innocent kisses. Expect to lose yourself in a person.

Song of the Week is the original Me and Mrs Jones by Billy Paul.

-haley.

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So Much to See.

Happy Monday everyone!

I have a few serious posts coming, but until then I just wanted to update everyone on some new things. Get your own portable Haley Ann PH Blog in your hands! All the emotional posts, and advice bound together just for you. A great gift for any PH patient!  Yes, you can still purchase the book by clicking here.   

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Also, you can check out the Zazzle store by clicking here!

Spice up your mail with Haley Ann stamps, stay warm with a hoodie, decorate your walls with posters, have fun with stickers, or get a binder for school or medical documents!! There is a good variety to choose from. :)

just_breathe_stamps-raedf9d61de8e4975a5436f6cd58ff9cf_zhon1_8byvr_512I hope you will consider buying a book, or checking out the store. Thank you for your continued support on the blog as we approach my three-year blogging anniversary.

-haley.

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Take A Stand.

I’m so sick of the world right now. I’m so done with all the racist war shit that people keep throwing fire on rather than helping. Also, I’m sick of women being attacked. If you are a woman, and a PH patient, you should definitely be re-thinking how you vote, what you support, and you need to take action.

A lot of people are surprised to find out I’m Pro-choice. As if I’m some inspirational girl who supposedly is now an evil queen because I support “killing babies.” Yea, um, you’re ignorant. You see, I just don’t think it’s anyone else’s decision what I do with my life. What color my hair is, where I work, who I talk to, what car I buy, and most importantly when I will have children. “Well you decided to have kids the minute you conceive.” Not exactly, sister Christian. Lots of people like to participate in the act of sex before they ever think of having kids. Like getting married, celebrating that with your loved one, then years later finally deciding that you are “ready” to have a kid. What makes these women so different?

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You know, in a medical setting we can never force someone to do what they do not want to do. I didn’t want to be on blood thinners, and despite my then cardiologist trying to bully me into doing so, I chose not to then fired him. When I was first diagnosed, I had to release everything and give consent that they could even tell my parents what was going on because I was eighteen. Usually, you get such high respect in the medical field of what can and cannot be done to you, and if you don’t then legal trouble will follow. But why do we lose such respect when someone doesn’t agree with our life decision? After all, isn’t this medical?

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Something we are not really familiar with until we get into a bad situation is called Body Autonomy; ones right or control over their own body and it must not be infringed upon. For example, only you can decide to be an organ donor in which you and only you have to fill out paperwork saying to do so. A doctor can’t just walk up to you and say, “I like the way some of your organs are functioning. Since you are probably going to die today, we’ll be taking those after you are gone.” Would you be furious? Yes. Because it is your body. Even after a person has died they cannot just take the organs they need because a dead body still has body autonomy…a dead fucking body still has a right until proper consent is given.

You see, women should be able to decide what they want to do with their body despite what you think. Since when did you feel the need to control everyone’s decisions when you probably couldn’t decide what to wear this morning? What’s scary is the outlaw of abortion if all these psychotic religious nutbags get their way. Women who have Pulmonary Hypertension cannot carry a child due to the eighty-five percent mortality rate. Most just collapse and die from heart failure around seven months into it. On top of that, was the fetus ever getting enough oxygen the whole time? Probably not. So now we just lost a mother, and a child. Prevention? Women with Pulmonary Hypertension already have a risk of blood clotting, stroke, and heart attack. Birth control is a very unsafe, and deadly “option.”

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Why, why, why would you take away someone’s right? Why does a dead body have more control over their body than a woman? Who would ever think that this is okay? If you don’t agree with life decisions then keep on your side of the fence, and love others despite what psychotic outbursts you think you need to be having. I’m tired of “freedom” just being an advertisement for America rather than the truth; after all, what kind of freedom are we progressing into?

-haley.

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Look Beyond the Medication.

The other day I couldn’t help but see a negative comment from a struggling person that is dealing with PH in their life, or someone else’s. It read along the lines of, “PH already has you, and it will kill you” and yada yada yada. Does anyone think that this person kinda sounds like Peter Van Houten from Fault? Yea…

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Besides just being caught up in our bodies that fail us, we are caught up in medicine. A medical way of thinking, being by the book, and paying attention to statistics. We get sooo caught up in our outward images, and what we are being told all the time that we never strengthen ourselves inside out. We’re so used to adopting this “weak” lifestyle and image. People ask me why I’m at peace, or why I have a good attitude about seventy-five percent of the time, and it’s because I preach preach preach on mind over matter, and on spirituality. I’m not perfect, and there are definitely sucky days. Overall the spirit will always dominate the body. Our body will sometimes get its way, but that doesn’t mean we have to be miserable.

The more I immerse myself in my native studies, the more I discover exactly how amazing it is. Native American culture is good about stepping back, and appreciating things a lot of people dont…like the earth for example. ;) But seriously, it’s awesome. When digging the other day I happened across this man comparing Western medicine with Native Spirituality in which he said The idea of wholeness is paramount in understanding Native-American perception of disability. Unlike many cultures that shun people with disabilities, Native Americans honor and respect them. They believe that a person weak in body is often blessed by the Creator as being especially strong in mind and spirit. By reducing our emphasis on the physical, which promotes our view of separation from our fellow man and all that is, a greater sense of connection with the whole is created, the ultimate source of strength.” -Laurance Johnston

Honor Song good sir!!!! Yes yes yes. The differences in how people view themselves, and other people greatly affects their life. How people choose to live, how to seek and find their true selves, their gifts, and cleansing their spirit greatly will affect their life. Another great example of how we are taught to think versus what we should be doing is proven by Kenneth Bear Hawk Cohen; Western Medicine – “How can I destroy my disease?” Native American Medicine – “What can the disease teach the patient? Is there a message or story in the disease?”

jingleFun Fact: The Jingle Dress (as pictured above) is a healing dress. It originates from the Ojibwe nation in which a girl was sick. Her father prayed to the Creator, offering tobacco, and seeking a vision. That night he dreamed of a dress with rolled up tobacco snuff lids, and a certain dance. He constructed the dress for his daughter, made her dance, and she recovered. To this day the Jingle is a competitive dance in Pow-Wows, and a lot of women will dance for those who need to be healed who still follow their traditions associated with the dress. Love love love it, as it is a powerful dance.

I’m not saying you need to start wearing feathers, and attending Pow-Wows (actually you should) but maybe this will give you a different perception, and outlook on your health. Summing someone up into a disease that we define as “it has you, and will kill you” is such an insult to our Creator. He made such beautiful things, including you; like you. Not just your body, but you.

-haley.

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Life Outside the Cave.

Can I just say that I know my new home is amazing. The very real friends, and companions I have in my life, all the way to the little hummingbirds that fight on my porch all day. I had no idea how amazing though until the other night when I went on a two hour drive that made me feel like I was in another country. The mountains were gorgeous, old buildings falling apart, extravagant paintings on sides of buildings, valleys (that made me feel like I should be in a ball rolling around Jurassic Park) and there are just no words for something like that. To see that kind of beauty, to experience it, no cameras, just the memories and feelings of what I felt, and seeing what the creator had done.

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Now that I’m permanently out of my “cave” I can look back with confidence and say that those were the worst years of my life. Not all of them, but at least the last two. I was tired, uninspired, confused, and hopeless. I was trying to make mountains out of molehills, and act like no big deal. Of course, everything looked fine because my “cave” looked a lot different to me then. Holy crap wow was I wrong. Growing up in your childhood place is supposed to feel like home, and it always will. But naturally in life we are supposed to progress, and grow out of things so that we may continue to grow in a healthy way; Spiritually, mentally, and psychically. I enjoyed living with my dad, hanging out with friends, and going to all the same spots until one day I just didn’t. I could not identify what was wrong with me until I knew my heart was trying to put me somewhere else which I thought was insanity. Actually, it was perfect. We reach a point where we have grown out of what we have been living within our whole lives, and then we create our own lives. Kinda like my favorite pair of  platform tennis shoes when I was a kid. My mom finally made me get rid of them in which I threw the biggest fit the world has seen. When I tried my new ones on though, I didn’t realize how cramped my toes had been for at least two years.

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Some people are content with their lives, but do you know what you are missing? Get out, travel or see things you haven’t seen. Meet people, and surround yourself with things you do not know so that you can learn. There is so much more to life than your cave. We outgrow so many things, and they may be hard to part with, but it will be the best decision you will probably ever make…to try new things on.

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Ok loves, the water bottle contest is over! Serena is our lovely winner!! Congrats! I will be sending  it your way this week love! Song of the week is Love is the Answer by England Dan and John Ford Coley.

-haley.

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The Book is Here.

Holy cow, the book is finally here. What a happy week! Not the book that I’ve quoted from before, or talked about, but this book is a little different!

http://www.blurb.com/b/6346395-haley-ann-phighting-to-stay-alive-while-remaining

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This is more of my blog made into a book. All the best posts, advice, emotions, and quotes all bound together, and portable for you! I know some people think it’s crazy to pay for a book when it’s all right here. Except, having a hard copy is better. Just scrolling through, and digging through my three year old blog was exhausting! On top of that, it’s all edited, updated, and together. I’m so glad something like this is available to PH patients now! There is little to no literature on PH out there for young adults, or just patients in general. Check it out, and order your copy! Thank you to everyone for the support, and positive words. :)

Song of the week is But, It’s Alright by J.J. Jackson!

-haley.

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Got Oxygen?

From day one, I was the patient that pretty much did everything they were told not to do. I gave my doctors almost more anxiety than I have, because I was so rebellious. However, I love my primary doctors, they are always very truthful with me, and I know when to be serious and actually listen. A good doctor is very hard to find. The doctor that finally listened, did my first heart cath, and diagnosed me was not a good doctor. I will always be grateful, he is great in the operating room, but he will not listen to you. He will tell you the worst, and hand you a plastic bubble to live in, which is what most have done. “You have maybe two years to live” are some of the first things he had said to me. From there on out it was “you have to be on this medication” “No you cannot do that” “You probably have a blood clot” yada yada yada. After comparing with two other doctors, I got pretty good at being a BS sorter, and fired him. He wanted me to not live a life, but just live under my diagnosis, and in his office with his rules.  While it’s important to listen to your doctors who know your situation, you have to be really good at not putting yourself inside of a medical prison.

I was very unhappy in my hometown; like addicted to Xanax and didn’t want to live anymore unhappy. I knew where I wanted to be, and I already could hear everyone’s opinions. “You won’t be able to breathe!” “You won’t be able to even live!” “The altitude is too high!”  Even then, this is the place that called to me. When I broke the news to my primary PH doctor who I love, I built up my defensive side ready to beg him to see the good side to where I was wanting to move. He said, “When you vacation up there, do you have trouble breathing? Will you have an O2 sat reader with you at all times? How far away are you from a hospital?” After answering all his questions, he said, “If that’s what you want.”  My mouth dropped. My doctor grasps the concept of my mental happiness.

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Yes, I live in 10, 350 feet elevation. No, I am not “barely living”, and yes I do get short of breath here and there. I get altitude headaches, and some days, walking around the town is just enough. But I am absolutely loving it! No, I’m not saying you should go live on the top of a mountain to love your life. What I am saying is that you should be doing what you love, despite what your crappy lungs think. Hazel Grace still flew to Amsterdam with Augustus despite her doctors yelling about it. Do not let your crappy lungs be an anchor within your body.

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Moving here was no more rebellious than what I was doing everyday in my hometown. Five years ago they said I wouldn’t live another two…so I guess I’m just not quite inside the lines of what a PH patient should be in their eyes. I’m very grateful for my doctors, and their support in my new life! Sooo, my loves, if you follow me on Instagram you saw that I am giving away a water bottle (pictured above) from my store! I think it’s perfect for PH patients with the little phrase “Got Oxygen?” on it. Whoever wins this bottle, I don’t want you to think about the risky altitude, but the mountains in your life, the challenges, the new risks to overcome, and of course maybe starting a new life. Plus, it’s really freaking cute. If you want a chance to win this super cute bottle then follow the directions below:

Follow me on Instagram @haleyann92

Follow my store! :) @mainstreetmercantileredriver

Then shoot me a DM on Instagram (or email haley.ann.92@gmail.com) saying you followed both, so I know to look for you!!

I will pick from who follows both, and the winner will be announced Monday July 27!! Have fun lovelies. :) Song of the week is Colour My World by Chicago.

-haley.

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Lets Try Some Humanity.

This week has been insane; like running into my eighth grade science teacher insane. It’s not that often that I liked any of my teachers, and this was one I truly  loved and had always wanted to catch up with. I was the student that spent most of my time arguing, or in the office. I hated school, I hated everyone, and most teachers hated me back. I never turned in homework, I spent my time drawing instead of taking notes, if I was dealing with something emotional then I was beyond unfocused on top of already being unfocused. When I went home I was in charge of trying to keep dads house clean, then loading up my sister and I’s belongings to travel back and forth to my mom’s. I was also dancing eight hours a week on top of having no idea that I was dealing with (at the time) an undiagnosed, and fatal lung disease. I was a very unfocused student.

10392087_103359571218_4635716_nSuper tired, and super grumpy pre-diagnosis Haley.

Because of my background, and my responsibility I was an angry kid. If it would not have been for my dad taking care of me, my brother teaching me how to manage my temper (and introduce me to healthy activities and music) and a few awesome teachers here and there, I know exactly where I would be; dead. I was a suicidal mess. Very few good people outside of my family looked past my temper, and showed me a human side to a world that I thought had no humanity. When I decided to start working with kids, that is exactly who I wanted to be too.

I have worked with the most insane kids where a lot of people (including the very little family they did have) were in the process of giving up on them. People hated them, showed them how done they were with them, and did not make any room to treat them like humans. These kids had a lot going on besides bad behavior, and I absolutely loved them. Why? Because I was that kid. There is a lot more story to that horrendous behavior than “I hate school.” When I started working with kids in a different program, I encountered the same thing. We had kids that pushed the limits, caused problems, and I was always with them while everyone else talked shit. “I don’t know how you do it, they are problem causers, they act horrible.” You know what else? They are awesome. They are some of the best kids, and people I have ever met. Why do I say that? Because I chose to be a human with them. Because I chose to show them consistency. Because I chose to show them humanity. Because I chose love, over what everyone else has ever given them. And you wonder why they act the way they do?

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When I hear about these types of kids not being invited into people’s homes, or certain events because “they don’t want them in their Christian household” I could literally fire off, and orbit. You just put them where the rest of society has, and now what will happen? You have no idea why they need to come into your home, and you will never know because you do not choose love. You will never be the face of understanding, love, and acceptance despite what religion you boast about. After hearing about incidents like this, this is why I chose to write about this today.

People need humanity, more than they will ever need “rules.” Because of the kids I chose to talk to, and treat like they were human, I had wonderful relationships with them. I hope I inspired them to make better decisions, not by just telling them that, but by showing them what good decisions look like, and what a person who truly cares about another person looks like. Open your home to the bad kids, because there IS a good kid in there somewhere. A good kid who can learn from your love.

Rant over.

-haley.

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Angry Cat.

FullSizeRenderAngry Cat face courtesy of Rocco.

So, my loves, I was going to make a post about all the same-sex marriage legalization and Texas’s appalling actions following. However, it was going to come out exactly like a post a made a couple of months ago. Remember all the awesome MASH memes in my Religious Freedom post? Yea, that one. It’s been updated with all of this news. Its pretty simple, and it’s pretty funny if you know who Frank Burns is to begin with. Check it out, and feel free to share. In fact, please share. Click Here to Read the Religious Freedom Post!

Song of the Week is Baby Don’t Go by Sonny and Cher because…Cher. :)

-haley.

@haleyann92