“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?

pulmonary_hypertension

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.

Libtard. 

Lately, Americans have been so focused on tearing the other political parties apart that it literally makes me laugh when they think they’ll defeat ISIS. Like, how do you expect to move forward as a team when you attack your fellow Americans? 

I never gave much thought to politics, and wanted to avoid it forever. I remember taking a quiz my senior year of high school so that we would be informed on what political party we identified with. I remember being one of the only kids on the extreme left side; yep, I was a liberal. I was also super confused because I was raised in a republican environment. Ya know, Texas, where everyone is supposed to shoot things all the time. I’ve always been different than my Texas environment. I was always uncomfortable in Texas because I think I was finally starting to figure out I didn’t belong. My values, and what was important to me was not to be found anywhere in Texas except in a few friends. This played a huge part in my relocation. 

Several months after I took that political party test at seventeen years old, I graduated high school and turned eighteen. A few weeks later I was diagnosed with a rare, terminal disease, and given around two years to live. I didn’t think much about it because one – I had literally just turned eighteen, and two – I thought having a disease meant sitting at home being sick…kind of like a day off from school. Until a few months later when my first medical bills started rolling in with my name on them, and I saw the stress unfold on my dads face did I realize not only was my health in trouble, but WE were in trouble. 

I swear getting diagnosed with a disease is like being handed a special form that reads, “Surprise! You didn’t sign up for this, but we’re taking everything you’ve got!” You think I’m exaggerating?! Just ONE of my life saving meds is $2,300 a month…that’s the COPAY. If I don’t find a way to send that in then they don’t ship me my miracle pills. If I don’t take my pills then I could maybe survive a year. This cost does not include my mandatory doctor appointments, tests, oxygen, other pills, speciality doctors, surgeries, and travel expenses. It didn’t occur to my eighteen year old self that medicine costs money…I thought my dad paid for that monthly when they took out of his paycheck for a thing called “insurance.” When my dad showed me what he pays monthly for our insurance, I about lost it. On top of that, we were being threatened (and still are sometimes) that I will “max out.” Ohh, you’re twenty three years old, and will die without this treatment? Too bad!! You’re too expensive for us!! That’s literally how we are treated. I am not a life. I am a dollar bill, and a number. 

Seeing as how I was eighteen when I was diagnosed, I really thought I would go to college, and pursue an education. However, with this mounting medical disaster at home, it doesn’t leave much room in the pocketbook for success. Believe you me, after hunting for scholarships, applying for financial aid, I literally gave up. I was tired of going into stupid little debts every semester. However, I have to have some type of successful career with health insurance by the time I am twenty-six. 

Let’s not forget about the uterus, people! I can’t get pregnant (it would kill me and the fetus slowly), I can’t be on birth control. Hmm. Okay. Maybe I should get my tubes tied, or everything removed?? Oh that’s right, doctors don’t just “do” surgeries on PH patients because of the risk of anthesia killing us, ontop of other risks. However, just two weeks ago my doctor told me they are working on coming up with a plan so PH patients CAN get pregnant! So maybe I shouldn’t get myself “fixed” and go through menopause at twenty three. I’m also told I can’t have an abortion because that would make be a murderous whore. 

I am a liberal. I am a democrat. Why? Because until the government stepped in on my life, I had no idea how horrible this country is set up. You cannot possibly survive under these financial conditions. I have given serious thought most times about quitting my treatment, saving my money, and living my last months on this earth happy and financially burden free; for not only me, but my father. I am twenty three years old, and I have to make decisions that people not even in their fifties make. 

  

I am a liberal, because I believe that despite any women’s reasons she deserves access to safe healthcare. 

I am a liberal because as a woman who has been sexualized – I acknowledge the war on sexism and racism and choose to FIGHT it, instead of burying my head in the sand. When your sister, mother, daughter, cousin, or friend is raped or attacked, then maybe you’ll choose differently. 

I am a liberal because I believe that your body shouldn’t be a financial burden. 

I am a liberal because I believe that you are an actual life, and people shouldn’t profit from you falling ill. I am literally a dollar sign. 

I am a liberal because I believe in loving, and accepting people. All of your hate speech will not change them. I’m tired of hearing “libtard” “liberal pussies” “damn liberals” and whatever else. Republicans use the bible to beat people in their arguments, yet they are the most hateful. Hmm. Make Jesus proud! 

I am a liberal because I appreciate this earth. Your drinking water, your mountain vacation, your fresh flowers, your eggs, animals, and the AIR your breathe will disappear. Nothing will matter when those things are contaminated. You won’t have to worry about ISIS when your planet is ruined. 

I am a liberal because I want change. I don’t want to have to choose paying to stay alive, or having an actual life! I’m a liberal because I believe in freedom; I believe in affordable healthcare, and education. Those two things right there could completely change not only my life, but MANY people’s lives.

 I’m tired of being called names. I’m tired of everyone only listening to reply rather than listening to understand. THE LEFT AND THE RIGHT WING BELONG TO THE SAME BIRD. Stop attacking other people because they are different than you. 

Libtards, really? 

-haley.