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How Convenient.

Six years later, and the thought of my upcoming echocardiogram (and other tests) to see if my new treatment is working is still unsettling. In a couple of days I will see my heart glowing on a black and white screen not knowing it’s fate, and I can always tell when the sonogram tech is fresh because they possess no poker face. After that I’ll walk repeated laps for six minutes in a hospital hallway to see how far my oxygen dips, and of course they will jam a needle into my arm to file away my blood in multicolored tubes.

You see, I have been doing this since I was eighteen because that’s when I was told I was dying. Eighteen is when I was being asked what my end of life decisions should be, how I needed to pay for new costly medication, I can never conceive a child, and everything I thought I knew had been completely wiped out. I will never forget all the “we love you”, “praying”, and other types of comments. The phone calls, and the overall “new” concern that fades. People return back to their lives, their normality, and their family…and yes, I’m still dying.

staygold3Dedicated to the lovely Jenny Janzer

I seem cold-hearted to many and even brutal in my attitude, however what you don’t sense is pure exhaustion. While you see my disease occasionally and you put a sad face on a status I made about my anger – I live with Pulmonary Hypertension daily. I don’t have a choice to hide anything, or forget about my lungs. I instead have to take medication, endure its side effects, wear oxygen, drive to the doctors which means appointments at the hospital, and of course the impending task of hearing how far my disease has progressed. Others who are usually the first to criticize get to kiss their children, go for a run, and probably haven’t been to the doctors in over a year. “Life is unfair” someone told me. I mean, really? You feel comfortable saying that to someone who is battling their own body, who blames them-self, and fights unimaginable grief?

Just because you do not experience, or relate to my pain does not mean it isn’t real.

Just because you do not feel my pain does not mean you get to label it for your convenience. The only label I choose to wear is “fighter.”

“She’s crazy, she’s intense, she’s just weird.” No, she’s just fighting death at twenty-four, and trying to cope with that while still alive.

-haley.

A new “song of the week” is up! Take a listen.

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Yes, It’s Traumatic.

Once Pulmonary Hypertension was brought to my attention, it’s been nothing but a life altering path I did not choose, but was forced to take. The public has a notion that a disease is sitting in a doctor’s office a little more than once a year, and maybe (maybe) sometimes it gets in the way. When a disease arrives, it brings all of it’s baggage: insurance hassles (or life terrifying moments when insurance threatens not to pay for anything anymore), financial struggles, side effects of medication, unplanned trips to bigger and better hospitals…the list really could go on and on. We learn of something new all the time, and with each changing phase in life brings a new set of baggage from this disease. The load is burdensome. But, the most important, ignored, and heaviest one? The mental, and brain health struggles.

I have been living with Pulmonary Hypertension well, since I can remember, eleven, but diagnosed six years. The past two years have been exceptionally difficult with a prescription drug addiction (doctors pushed Xanax rather than looking into a deeper problem) and I felt like I just couldn’t focus. I was so distracted by pure anger, anxiety, and it felt like every emotion I had tricked myself into believing was not there finally rose to the surface. I tried to fix it myself by throwing away my Xanax, and I picked my life up and moved. Change felt amazing, it took the edge off my problem, but deep deep deep in the background I still could not get control over anxiety, depression, and rage. Lots of it. Finally, I stepped into a therapists office surrendering to my “I will pick myself up” attitude. After a lot of sessions, his biggest concern with me was my PTSD, and severe anxiety. My what? I knew I had anxiety, but PTSD was in my mind someone who survived an attack. “Well, technically you have.” That was his response.

“Chronic illness is traumatic on both levels–the physical obviously, but also the mental and emotional. People who are ill very often display classic symptoms of post-traumatic stress, even if they don’t have the full-blown disorder.” -Psychology Today

“Individuals experiencing chronic diseases have been studied with regard to depression, anxiety, and a variety of coping maladaptions, but negligible attention has been given to the PTSD potential of chronic disease over the life course.” – ncbi.nlm.nih.gov

As stated in my ignorance, I had not even given consideration to the fact that PTSD lingered outside the soldiers category; And the problem with this is that most of the world sees it this way too. We have not yet put together that a majority of chronically ill patients are also suffering from Post-Traumatic-Stress-Disorder because being told “you have an incurable and terminal disease” is trauma in itself. Not including the daily alterations we must make to maintain a new normal that we did not choose, on top of surgeries, and bad news. The dangerous thing about this trauma? We are living inside of it everyday. Having undiagnosed PTSD was not even knowing of its existence, not knowing I had triggers, as well as not being able to identify my triggers, and having no idea I was suffering intensely mentally. Instead I was telling myself that “I was always going to be this out of control”, “Never going to find an escape”, or maybe “I needed to kill myself.” Yes, those are real thoughts in the middle of an attack. They aren’t comforting are they?

“But for some, it might be better not to shrug off problems, but rather to acknowledge the dark side. By recognizing the traumatic aspects of illness the ill person can potentially break through denial, modulate obsession, and lessen rage.” -Psychology Today

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Original art by Haley Ann

 

Since I’ve opened my mind to the presence of my PTSD diagnosis I’m not going to say it has become easier. However, maintaining and openly dealing with the trauma, and triggers has lifted some weight. Now I will be able to communicate to health professionals about how I feel in the moment rather than becoming enraged, and shutting down. It has opened a door in communication that I did not know I had, and developing an understanding towards myself. The best part? I am picking myself up. I just needed someone to show me how.

-haley.

Please understand that mental health is an invisible disease just like PH. Your brain is an organ, and it deserves it’s own upkeep. If you feel like you are suffering then please find a professional to help your pain.

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Stay Gold.

Don’t meet others expectations for you. Don’t expect anyone’s understanding towards your suffering, and do not apologize for your pain. Do set your own goals, and meet your own expectations for yourself despite what society wants for “you.” Do feel your pain, acknowledge it, and do not hide your suffering. Stay Gold to what you are, what you feel, and what you do. Stay Gold to what you need, and what you want. Stay Gold to all those little things that appear shattered and broken in your mind, but so delicately and warmly reflect you.

Stay Gold to you.

-haley.

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Awareness IS Power.

I guess you could call me a realistic type of person; for those of us who say that we often border the “negative” side to life. We are hushed, scolded, and covered up while others keep talking about their blessed life, and glare at humans who have an outcry. That’s fine, and all well for you, but my voice and my passion does not exist without a drive…and what drives me are the faults I have been born into. It’s okay to say that. I have a very faulty life. What makes it okay to say that? Well, it’s very hard to keep endless anger and pain locked inside of yourself. My organs are heavy from a daily battle against themselves, and quite frankly, I refuse to let them swim in a secret pain so that others may continuously live a life of comfort.

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The world is in a very weird, and groundbreaking place – can we all agree on that? I think because of the power of social media, life experiences, and just plain intelligence that people (and definitely our kids) are coming in tune with an “awareness.” They get political issues, social issues, climate issues, personal issues, drug issues, racial issues…all of the ugliness delivered to their LED screens, or experience this in their daily life. I feel that America’s new generations are creating a voice for themselves on racial issues, political issues, women’s rights, and yes even healthcare issues because they want to see change. All of the not-so-comforting news that the world has tried to lock away in some secret closet is finally exploding because of the want for change, and awareness. While having your head in the sand might sound lovely, appreciating and trying to help others pain is more rewarding. With awareness I feel it creates intelligent, cultured people who will connect to others easily and form a genuine respect for another persons’ life. A fabulous example of this? Humans of New York. Hearing the struggles behind ordinary faces in turn creates a sea of emotion in us, and a connection to our fellow beings.

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I will not hide my anger, or pain for your comfort. Yes, I will try to be positive while being realistic. I want America to see what such young/ordinary looking people with an invisible illness do daily just to breathe. I want everyone to open their eyes, and mind to what a person really feels with a terminal illness – not just what books and movies let you think. I want the world to see how much companies from movie industries to insurance companies are profiting off of sick beings – including children. I want people to be aware.

Awareness is knowledge. Awareness is power. Awareness is respect. Awareness can change anything.

-haley.

 

Hear what I’m currently jamming to under “song of the week” 🙂

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“Slow Down.”

Having a rare disease where no one knows what’s wrong in the first place is frustrating. A word in correlation with my diagnosis is “idiopathic” meaning of no known origin. No top medical specialist in the world can tell me why the arteries in my lungs decided to shrink. Do you know how many times I have had to explain my condition to even doctors hoping to god they wouldn’t kill me by accident? Do you know how many people think I’m lying about how serious my condition is? So many patients are misdiagnosed, ignored, and not taken seriously for years often escaping a chance to be early diagnosed providing them with options, and yes, some people lose their life instead. Knowing what’s happening inside of a Pulmonary Hypertension patient’s body even during an “episode” could not only help you truly understand what they feel, it also could potentially save their life.

SOO, WHAT IS IT?

Pulmonary Hypertension is not high blood pressure in this whole person’s body. No, I do not relate to your mother’s, sister’s, cousin’s, brother’s friend…that would be regular hypertension. Pulmonary means lungs; I have high blood pressure in my lungs only. How? The pulmonary arteries themselves are very very small therefore oxygenated blood cannot move through them at a regular speed like blood would through a regular very open artery. If you asked an entire high school class to walk down a huge hallway then asked them to all walk down a tiny corridor – which one would they make it through faster?

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When the blood gets backed up in these tiny arteries (the tiny corridor) oxygenated blood is not getting to vital organs in time. The body panics, and the heart picks up the slack by pumping harder and faster thinking it can make up for this problem. Why is this bad? After a while, the heart pumping harder and faster is not a great thing. It’s only one of our most vital organs – why would it be good to over work it? As any muscle would when you work it, it grows. This may have been acceptable for the Grinch, but I’m a human and a growing heart causes heart failure. So now my lung disease is starting to affect other organs. My heart was formed normally, and was just fine until it decided to overcompensate for my deformed lungs.

WHAT IS AN EPISODE?

A lot of people might see me “slow down”, start breathing hard, or hear me tell them to “wait”. This is the beginning of an “episode” – something I have always called the very painful and terrifying moments when my body is receiving literally no oxygenated blood. Just walking around like a normal person, a Pulmonary Hypertension patient’s heart beats like we’re running a marathon. It takes A LOT of effort to pump through these tiny arteries, and get the blood to vital organs. Certain activities that you don’t even think about can upset our heart, and take it by surprise. It differs from every patient – what treatment they are on, what their activity level is, what stage of PH or heart failure they are in, how long they have been living with it…all of this plays into their daily life function.

When I decide to jump up after laying down a while (first thing in the morning, after a nap, after being a vegetable at all) my heart freaks out. My activity level just went from zero to full blast. When walking on a slight incline, or walking long distance, I can feel a dull throbbing in my head and I start to gasp. When climbing stairs, I usually can do about four to five before I have to take a deep breather. On my absolute worst days, washing my hair and applying my makeup can take hours because lifting my arms above my head is nearly impossible. So what is happening during all of these what seem like regular activities? Why am I slowing down?

As stated before, the blood is backed up in the lungs and is not moving through fast enough. My heart starts beating uncontrollably hard to push faster to start sending this oxygenated blood out to all of my vital organs. The first place where I am NOT receiving oxygen is my brain which is why the dull throbbing headache starts. My vision blurs, along with my hearing, I can’t communicate very well, and yes I’ve been known to become combative out of pain and confusion. Having no oxygenated blood in the organ that keeps you awake is kind of terrifyingly painful. If I am even still awake at this point, I usually cannot move my legs, and definitely can’t feel my arms. None of my muscles feel refreshed because they haven’t received blood flow either. This for me leads to extreme cramping, and zero movement. By this time usually I have lost consciousness. When your brain doesn’t receive oxygenated blood, no power source, it shuts off. Hopefully around five minutes later I wake up feeling shaky, and exhausted. My heart just beat so erratically out of sheer panic, and my body didn’t receive the thing that keeps us alive – oxygenated blood. Yes yes yes – we can die from this. What’s even scarier is that it does NOT take a hike to do this. It takes a flight of stairs, a walk across the parking lot, getting out of bed, lifting our arms, getting dressed…it’s just that easy.

Understanding exactly what is happening in a Pulmonary Hypertension patient’s body saves lives. Understanding our bodies helps us feel a little less like an alien too. What can you do around a PH patient who might be having an episode? Call an ambulance, provide oxygen if you have it, and provide the knowledge about this rare disease to medical professionals so they don’t accidentally kill us too. 😉

It’s not dramatic, it’s a life or death situation in the most casual atmosphere of just walking around, or getting out of bed.

Do you remember where you were, or what you were doing when you had your first episode? Do you remember the pain?

-haley.

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I’m That Difficult Patient.

Something very commonly overlooked when living with Pulmonary Hypertension is the meaning of “progression.” Or at least when it came to me, my brain has a tendency to forget this huge “one up” this rare disease has on us: progressive…it could always get worse.

When I finally became somewhat comfortable with my shitty lungs, and started writing about them I also adapted a very invincible type of mindset. I had my disease, but I felt like I also had control, something that we don’t have very often with Pulmonary Hypertension festering in our lungs. I ultimately had control over how long I wanted to live, IF I wanted to take my meds, and where exactly this disease could take me. It was great to be feeling “healthy”, to be positive, and to ride out the illusion that I somehow was in control of two of the most important organs in my body that already had a reputation for throwing us all curve-balls.

surgery

My newest specialist is someone who in my eyes is all about preventative care. Her biggest emphasis is something that I, and all my past doctors have repeatedly not watched; the fact that Pulmonary Hypertension is a progressive disease, and it could get worse. I, on the other hand am all about the “now”, and gettin’ it while you can as Janis would say. I’ve moved into a rougher environment (which I don’t, and will never regret!), blown off weeks worth of medications, done things that have negatively affected my body for a temporary high, and basically thought I could keep tucking my disease away for a later time. That’s what happens when you are technically still not accepting your disease – hint hint. After taking the guidwires out, shutting down the fluoroscopy machines, my new specialist informed me that it was a great thing we did a new cath after almost four years. My pressures have not changed after all this time, and my cardiac failure has gotten intensely worse. I may feel “alright” right now, but a year from now could be questionable. Which has now led us to three new medications that are going to feel very “intense” for a while until my body starts responding. Here I sit with my morning cup deciphering through my “now” type thinking versus a future that I’m not sure I want to even keep pushing for. Is it worth it? Or is it just doctors leading us on like a cat chasing a string; am I going to be paying a ridiculous amount of money, and living in pain to only be here another ten years?

Overall, it’s a shock once again to the system. It feels like we’ve re-winded back to when I was being told for the very first time that my heart, and lungs both were a problem. After years of writing about PH, I started running from it. I felt suffocated by what I was creating, and felt the need to tuck it away quietly. It has finally come back to find me, and it’s earth shattering, hopeless, and just unfair all over again.

Despite writing, contests, shirts, and everything else I have come to discover that never have I ever been fully okay with my disease, but will we ever really be?

New song of the week finallyyyyy.

-haley.

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Textbook Breakdown Part 2: Diagnosis.

So, yesterday we covered what Pulmonary Hypertension is in itself. Now today we’re moving onto how we find PH, and who has it. If you missed yesterdays post, then click here to share or read it.

So, since Pulmonary Hypertension is happening in the lungs itself affecting the heart and internal organs, it’s not affecting much of what happens on the outside of this person. In fact, most Pulmonary Hypertension patients are young; kids, babies, teenagers, young adults, you name it. Anyone could be born with Pulmonary Hypertension. Basically, Pulmonary Hypertension hides behind a mask of youth, or “normal.”

Someone may be born with Pulmonary Hypertension, and take years to finally show it. They could be like me, attending public school, participating in physical activities, then one day feel a very unusual and horrid pain all over, and lose consciousness. Most people would either ignore it, or think they had an asthma attack. Even if this young patient was attended to by medical care in a hospital, or doctors office they would never do an EKG (checking heart rhythms) an oxygen test, or chest x-ray…why? Because why in the world would we check a very young person’s heart when they just got tired, and collapsed? When people ask why we collapsed, we tend to only be able to answer that we couldn’t breathe. People generalize those symptoms down into something like asthma. PH doesn’t have a disease appearance because it’s all internal therefore just about every person does not take the person’s symptoms seriously. A PH patient begins to think they might be crazy, are out of shape, and need to learn to keep up. Maybe they’re told that they have an anxiety disorder, or something. Basically, it is very very very rare for anyone to listen to someone suffering from PH because they can’t “see it.”

So what happens after being ignored for so long? The pressure in the heart, and lungs begins to mount and the patient begins to get worse. Not being able to walk, fainting with any physical exertion, and the downfall of their quality of life. Yes, this will even happen to kids. Pulmonary Hypertension patients can die at any time for a variety of things; blood clots, an arteries bursting, their heart rhythm becoming too chaotic, and finally their heart just stopping. If a PH patient is not taken seriously by medical professionals in time, their chances of dying increase every day.

Echo

So what happens when a patient is actually taken seriously, and what does it take for a doctor to find PH? An EKG, and a simple oxygen saturation test should at least show some concern with a weird rhythm presenting a conduction delay, or showing the right side of the heart is working too hard. The oxygen levels should also be low. A chest x-ray, or echo should show that the heart is over sized which a normal physician would immediately want a heart catheterization done. A heart catheterization is where they insert a catheter in the femoral artery (or a vein in the neck) and move it all the way into the heart. From there using fluoroscopy (a moving xray) they can view the actual heart itself to make sure it was formed right. Then they can measure the pressures, and actually see how the heart is pumping so they get an idea of what is wrong. If the heart is formed normally, but is still working so hard to the point of failure then that tells the doctor that the pressure is coming from the lungs…Pulmonary Hypertension.

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At this point the doctor would finish the surgery, and would contact the closest Pulmonary Hypertension Specialist, or Pulmonologist to start treating the patient immediately. Depending on how high pressures are, and what shape the patient’s organs are in, the doctor would now notify the family of the terminal diagnosis, and then the patient with a very grim life expectancy.

What now? Tomorrow we will dive into treatment.

-haley.

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Textbook Breakdown Series. Part One: PH Itself.

Okay loves this first week in November for Pulmonary Hypertension awareness month I wanted to do an entire cohesive series on the first steps to understanding PH to share with your loved ones,and to help everyone understand just a little better! Each day I will post information about PH breaking down the disease, diagnoses, treatment, and other things about PH that make it hard for others to understand. Here we go!

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So, to start with PH, we have to start from the very beginning; the disease itself. What is Pulmonary Hypertension? Not all the other things that come with it, but the actual disease itself in our bodies. Pulmonary Hypertension is first off, a lung disease that affects many many other things. Where is the “disease” or problem at? In the arteries of the lungs (the pulmonary arteries.) What is wrong with these arteries? Well, they are extremely small, and not large and open like they should be. Why is this a bad thing? Because these arteries carry blood, and oxygenated blood to a major part of our body (the heart) to be pumped out to the rest of our body. Think about trying to move an entire high school class down a very narrow hallway. Imagine that you have to get them through super fast, and in the exact same amount of time that it would take them to move through a very large hallway. Is that possible? Absolutely not, because this class is cramped; they simply cannot move as fast as they originally could in a large hallway. So, these arteries in our lungs cannot get blood, and oxygenated blood where they need to in time, because basically, its small, and cramped in there.

IMG_2467“IPAH” meaning Idiopathic Pulmonary Arterial Hypertension AKA fancy words for PH.

So, here is where it gets a little complicated. If oxygen can’t get where it needs to in time, how does it affect the body? We need oxygen to stay alive, and to literally do everything. If our brain doesn’t receive oxygen then it can’t send out signals to the rest of the body. It literally can’t even stay on, so it would shut itself off (AKA Black out.) Also, guess what else is not receiving oxygen? Your whole body; therefore your arms, legs, muscles anywhere feel like they’re cramping up. A person would literally hurt all over, especially in the chest, would eventually lose consciousness, and stop breathing if the oxygen supply continues to be cut off.

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So, I think we all understand that we have to have oxygen. Now because the heart is the one doing all this pumping, Pulmonary Hypertension directly affects the heart. This organ is the one responsible getting this blood through a very “crowded hallway” or the pulmonary arteries that are tiny. It can’t possibly get this oxygenated blood how fast that the body needs the blood, therefore its receiving signals saying that the whole body is hurting, the brain feels dizzy, and even the heart begins to suffer. What does it do with all this pressure mounting? It picks up the crappy lung’s slack, and works even harder hoping the blood will get through faster. This may get the body by for a while, but what happens when you start working a muscle hard? It grows…just like your biceps would. Is it good for your heart to grow? That may be good for the Grinch, but it’s not okay with anyone else. With your heart growing bigger, it gets tired, the pressure in the heart itself gets higher and higher. Eventually, the heart would start slacking on all its jobs, and then one day just stop; that is heart failure.

PH Heart

A Pulmonary Hypertension patient’s heart most of the time is formed perfectly. There is nothing wrong with the heart, until the lungs come along causing pressure in the lungs, therefore putting pressure on the heart. That by definition is Pulmonary Hypertension (Aka high pressure in the lungs.) Pulmonary Hypertension is a domino game of disease when it comes to the body because eventually all organs become affected, and fall victim to this disease.

There are different types of PH? Yes. Idiopathic, and secondary. Idiopathic means “of no known origin.” There is not something causing the Pulmonary Hypertension in this patient’s body other than they were born with it. A secondary PH patient means they have this disease, or developed PH because of something else.

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Soo, who is PH affecting, and where do we go from here? Then check back tomorrow with my diagnosis breakdown. 😉 I hope this breakdown of Pulmonary Hypertension helps you understand this disease a little better!

-haley.

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War, and Ebola, and Evil, Oh My!

Oh, this is a season known for such beauty, and in contrast, the fright. It’s not uncommon to be terrorized this time of year, and most people seek out those experiences. However, when the terror leaks into the light and confuses itself with reality, we reach a whole new level of terror that is almost unnerving.

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All I see on my Facebook, and hear around the office is somewhere along the lines of, “the teacher got arrested, this hurricane hit, blood moons, and ebola.” What about that is pleasing? What about that makes my heart happy? “It’s important to be involved in current events.” Except no, it’s really not, not anymore. I think its more important to track history, and be consistent with your learning and perception. But why sit in front of a screen that delivers the most awful things right into your mind? And people ask me why I don’t watch TV…

A few weeks ago, I got super worked up about the end of the world, the blood moons, ebola and just about everything else the news thought they needed to grace my news feed with. Thanks, Facebook peeps. You officially got into my head, and for a whole week I thought endlessly about how fucked up the world is. I barely slept (I was afraid the world might end in my sleep) and I couldn’t think straight. Some people call me a person affected with severe anxiety (which is true), but today when a parent called afraid her child might have ebola, who hasn’t been in contact with anyone, or any country of the sort, it seems I’m not the only one. We share articles on Facebook repeatedly over awful, negative things that are supposedly news and it’s really just self destructive. There is a difference in awareness raising (for example: Blackfish) versus ridiculous negativity. After hours, or days of reading, you evolve to a state of living in fear.

End it, and accept there is nothing you can do. Literally, there is nothing. That blood moon is going to happen whether you got a picture or not, and that group of terrorists is going to kill someone next. That disease will infect who comes in contact with it, and there is literally nothing you can do. Its horrible sounding I know, but its the most freeing thing you will hear despite what you keep reading on news channels, and Facebook. What is the point of bottling up every thought, and action you want to have simply because the world might bite you on the ass? Its scary, but there is no point in living in fear. I guess if I get ebola (which I refuse to capitalize because it’s so horrible) but until or if that ever happens, I’m doing what I can to protect myself and I’m living life without fear. I can’t walk around all day with a rock in my stomach. You should take precautions but fear is never, and should never be one of them, despite what the media wants you to think.

Seriously, stop sprinkling that shit everywhere, and instead spread happiness, kindness, positivity because the world needs a whole lot of it at this point. So, I hope you lovelies enjoy your Halloween week getting scared from awesome things like The Shining, or freaky costumes versus things you have no control over. Enjoy, and live your life.

-haley.

Life With PH, Personal Life

Exit Here.

I’ve had some people contacting me over a subject that seems to scare them in this scary time of year; I am no longer PH centered. I know, its shocking to you, but it’s not to me. I think no longer just focusing on PH has given me a breath of fresh air into other subjects that have consumed my heart.

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You see, I’ve been passionately writing since I was in the fourth grade. I remember the exact day that the lesson “clicked” and this writing thing became easy. I was scoring Fours (four being the highest in Texas) while everyone was struggling to make it halfway down their little notebook pages. My thoughts have flowed onto a paper naturally, and I’ve enjoyed it. I stopped writing around sixteen. I have no idea why, but really I had nothing interesting in my life, in fact I was sleeping most of the day. After I was diagnosed, Pulmonary Hypertension gave me an angry and emotional trigger, and just like a bullet, I fired. All of my thoughts from years of silence flowed out onto this blog. I can’t believe I gained an audience, and I am forever grateful for my PH family, the conference, the wonderful thank you letters, and my award sitting at the front of my room.

My PH writing itch has mostly been scratched. There will always be more to cover as new challenges approach, but I have other things on my mind. I am an activist at heart. I don’t want to be the ugly, screaming activist, but I do believe in justice and broadcasting the truth that people mostly miss. That simple statement has a lot of you upset. Some have contacted me asking why I’m not writing, some of y’all refuse to support and voice your opinions on such, and while I respect that I can’t understand that. I cannot live and breathe PH daily because PH is a disease that does not believe in giving “breaths.” I have nothing against my disease, or my PH lovelies, I just don’t feel a desire anymore. I am currently at peace with my disease, but not other subjects that come to mind. I want this page to be something you can come to reflect on for new articles, or search old PH issues that I might have covered in the past. But lets just get one thing across about Haley Ann; I am not a people pleaser. People pleasing is one of the weakest things others can succumb themselves to. You simply cannot please everyone, so what is the point of trying? Please yourself, and do what is right.

So I hope that with all this being said, you can support the blog after the PH years that hopefully it supported you in. There are stages in a disease process, and all are different just like the patients themselves. I am merely exiting one phase, and transforming into another. Thank you (hopefully) for your understanding.

-haley.

Song of the week is “You Sent me Flying/Cherry” by the lovely Amy Winehouse.