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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

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And I lived Happily Ever After…with Me.

I feel content in my very single bubble. I guess you could say I’m dating myself. I take myself out, buy myself the drinks I want, watch the movies I want, I eat what I want, I talk to who I want to talk to, and I am having a blast. I really don’t see why people make a huge awful deal about singleness. There are a lot of upsides to spoiling yourself. With that being said, I’ve become a little terrified of dating. Not only because of the shitty options that people present themselves to be (they aren’t shitty people, they just have no idea what dating etiquette is) the actual shitty people, and because of how people choose to act in relationships. Here are a few things that are the up most terrifying dating behavior that will maybe clue you into why you are single if you are one of those who bitches about it constantly, or why people might dislike you and not want to hang out with you and your significant other.

Looking for Your Person.

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And why are we looking to begin with? When you are on the prowl, you are openly scanning people like a meat market, and seeing what fits to your delight. By doing that, you are probably looking in the wrong place, you are being fooled by outward things, and therefore you make the proud decision to talk to someone completely wrong for you. Dating apps, and websites? You’re rating other people based on stupid facts that don’t even really sum up a person, and in return you are allowing yourself to be rated to. It’s a sure-fire way to dating failure.

Smothering a Person.

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It’s all happened to us. You meet someone with potential, maybe they have a nice smile, and hopefully they aren’t an axe murderer. Except it might be worse than that; you wake up with five text messages the next day from them. “Good Morning!”  “How are you?” “I guess you’re still asleep!” “Text me when you wake up!” “Have a great day!” OH MY GOD, DUDE. Jump off a cliff. Not really, but still this is such a huge turnoff and no-no. Give someone space, and if they are the right person for you then they will respond. If they are not responding, then they don’t want to talk to you (which you need to accept), or you are giving them a reason to not want to talk to you. Yikes.

Becoming Your Significant Other

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Can I just say that when you are finally dating, you realize it’s about two people dating, right? Two different people, with two different dreams, two different personalities, and two different interests? Since when did it become a “we” world? What happened to your friends? Even in marriages, yes you are becoming “one flesh” or whatever, but still, COME ON PEOPLE! Do not give up, and throw away what you want, or desire for an image you are trying to achieve. There is a difference in compromising with your significant other, participating in things they like, versus transforming yourself into someone who your friends cannot stand to be around. Another example of this; Couple facebook’s. Really? Like who am I talking to when I post on your wall? Are y’all just a united force? No. You are two people who are now becoming annoying.

Reaching Desperation

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Believe in or not, in my opinion this can happen in and out of relationships. We all know what someone looks like who’s desperate and single. Making single humor jokes (good lord), constantly cruising through online dating profiles, talks about dating, and just keeps going. But desperation when you are dating? To me it’s the person that can’t function without their person. They become desperate for them. Attempting to make things work that do not work, cramming the other person in other people’s faces, does not care about their life outside of this person, and is slowly making a fool of themselves. You cannot look up to someone, and let a person run your life. You run your own life, because someone else will run it into the ground for you whether they are a good person or not.

Well, lovelies these are just very short descriptions of what is getting on my nerves lately. Human connections, and relationships are supposed to be of an organic chemistry that comes together. It is not forced, it is not figured out for you by the internet, and there really isn’t a damn thing you should be doing about it other than minding your manners.

-haley.

@haleyann92

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My What Spot?

My white spot. 

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“I can’t see it!” Well, it’s there. 

A month ago (maybe longer) I made a post about tanning titled  “Fake ‘N Bake.” If you read that, then you might get a sense of my tanning history. I started tanning at seventeen (before it was illegal in Texas) got realllllly tan my senior year of high school (and loved it!) Every since then I bet I spent close to three hundred dollars a summer on my tan. Last year I started working for a tanning salon, and got a little bit smarter about my tanning as I was educated more. However, all of us girls loved being tan! As long as we didn’t get the ugly C-word, we would probably still roast ourselves everyday.

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A really dark seventeen year old, pre-diagnosis Haley

This summer I’ve been too broke, and too busy to worry about tanning. I moved to a very remote location that doesn’t offer it – which is a great thing. A few months ago, while putting on my makeup, I noticed a discoloration of a part of my face. It was weird because it wasn’t hyper pigmentation but rather than hypo after I did some research. Why did I have a white spot right in the middle of my extremely red cheeks (I have rosacea) and of course this ugly thing was right in the middle of where I contour.

My search results? UV damage. Hypo pigmentation is when a trauma to the skin occurs (like UV rays), now the cells that produce melanin die, and you are left with no color in your skin. Sometimes its a disease where it spreads, which is the last thing I need. Everyone remember Michael Jackson? Yea, its called vitiligo. But in my case, hopefully, it’s just going to be a small little white patch that will forever irk me.

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I don’t regret what I said in my last post, in fact in the beginning I reminded you of the dangers of tanning. That post is merely to help those that still decide to tan indoors. However, after my experience I can officially say I’m done! I tanned for five years, and I got off really lucky yet with damage. It’s not just one of those things where it might happen to you, it WILL happen to you. I am not one of the crazies that protests tanning, and thinks it should be outlawd. If people want to do that, that is their choice. There is a right way, and a wrong way to do something, and the wrong way is trying to get everyone to do it the right way. 

So what am I doing now? Well I’ll be that person that will be wearing sunblock mixed in with my primer to protect my face, and whenever I can I’ll invest in a spray tan. My day to day routine consists of Jergans lotion (the darkest one) that has actually given me a great color, and it smells fantastic y’all! I’ve tried Sally Hansen’s spray on legs (the medium color) and I’m not too impressed. Its very shimmery, a bit of a nasty orange tint, so I don’t know If I will continue using it. Over all, I have a natural red tint to my skin, and I hold a decent color all year. I will settle for a less than amazing bronze color over skin damage, and cancer. I think I can live with that, because I’m choosing life. Merrrrp.

Have a fantastic Monday everyone! Song of the week is Sometimes Part 1 (Interlude) by The Nth Power who I got to see live at Gathering of Nations! They are sooo fantastic, please check them out.

-haley

@haleyann92

Welcome, Newbies.

Welcome to all of you who just recently started following. The blog has changed a lot in the past couple of years, as well as meeeee. You can always check the FAQ page, and here are some  fun little questions I answered recently. Comment, rate, or shoot me an email if need be.

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How old are you? 

I’m about to be twenty-three.

When did you start blogging, and why?

I want to say in August of 2012 because I had finally figured out I was okay with my disease (Pulmonary Hypertension) and had a lot to say about it.

What is your blog’s primary focus?

Honestly, just things that capture my heart.

Do you still work on writing outside of the blog?

Yes, I’m finishing my book (I’m re-writing the ending) and I’ve dabbled in poetry.

Where are you located?

A very colorful, and cultural state. :)

Describe your personal style?

Boyish with a few jewels, and vintage pieces thrown in.

Which fashion icon has most influenced your approach to style?

Janis Joplin, Millicent Rogers, Stevie Nicks, and Betsey Johnson. I could never narrow it down to just one.

What is your greatest splurge?

Food, purses, jewelry and art.

What is your best feature?

My Kat Von D cat-eyeliner that is painted on, always.

Where do you find most inspiration?

Within nature, my culture, and music.

How has Education influenced your career?

If we’re talking about the piece of paper you pay a lot of money for, then it hasn’t. I’ve taken my college courses, but everything that I’ve learned that has truly helped me in meeting other people, talking with them, loving them and learning through them…I’ve learned by living. I love learning. Not everything important comes by a paper earned by sitting within four walls. But if you have that piece of paper because you worked your butt off for it, that’s cool too. I have to get that one day too.

What are you currently most frustrated with?

I can honestly say I’m not…is that insane?

What most boosts your confidence?

When I’m tan, having a good hair day, and when people compliment my writing.

What is a woman’s greatest asset?

Independence, and knowledge.

Which character trait do you must value in others?

Probably humor, and honesty.

How do you relieve stress?

Painting, drawing, and writing.

When are you happiest?

When I’m in the mountains, making new friends, and when I’m cuddling with Rocco.

What do you want people to know about your disease?

Yes, I’m actually sick.

What do you think is the most important thing in life?

Never stop learning. And of course loving other people.