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” 🙂

“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.