I Am THAT Sick. 

“Do you feel like you have quality of life?” was something asked by my palliative care nurse yesterday. Honestly, who could call this tube and machine attached to me “quality?”

I have been writing for almost five years about living with a terminal disease that is masked by this perceived normal, if you will, and the absolute frustration of everyday ignorance when it comes to people respecting and believing your reality. We are made out to be drama queens, negative, “too much”, and just about any other word humans would like to use as a buffer for their level of comfort. It’s an isolating feeling to know you are surrounded by people who will slap a prayer on a Facebook status, but will indirectly do what they can to keep your “suckage” far away from their steady life. It’s a dull feeling to know that you live among people who are contributing to the lack of early diagnosis problem by once again thinking you are just being dramatic, or negative. Patients literally die because they are told consistently that nothing is wrong.

Late January, death was on my mind quite frequently. My “end of life” wishes, and how they might find me in my home. I was having tachycardic episodes just even trying to pet Rocco, and found myself laying in the floor more often than not trying to calm my breathing, and move past that suffocating feeling. I knew what was coming; my invisible illness was working its way out.

After an almost two-week hospital stay, countless mental breakdowns, bruised arms, bruised hands, new nurse friends, and “mixing classes”- I walked away with a tube in my chest attached to a little machine. I never realized how many v-necks I own, or tops that lace up until I noticed a little white patch peeking out in the mirror. I have attempted to walk across my living room countless times before feeling a little tug reminding me that I am permanently bonded to this anchor. I forgot to enjoy just seeing my necklace resting against my bare chest, or how amazing my weird habit of rubbing my collar bones felt in which now my right one has a tube stretched over it.


Quite shockingly, the amount of “I didn’t know you were THIS sick” messages I received is more sickening than my heart failure in itself. I guess people really do want this justifiable evidence that you are in fact suffering which I guess seems understandable, but; while they see tubing they still don’t see the bills pile up for the expensive maintenance that is required to keep you alive. While they see your pump now they still don’t see you spending enormous amounts of time mixing your medication just right so you don’t accidentally kill yourself. While they see grumpy Facebook updates they don’t feel the mind numbing reality of laying in bed, throwing up, running to the bathroom every five seconds, and doing what you can to manage your pain level. While they see your spotty red rash along with your chest they don’t see your mini hospital that is quickly swallowing your cute home.

Congrats. You have your physical evidence. I am sick. My body is now reflecting its insides – and you know what? Despite whether Pulmonary Hypertension was visible to you or not, it has been this way for seven years – since day one of my diagnosis. It has always been this level of life altering since the moment they told me I did not have a good chance at a quality of life for long. It has been this horrible since the first echocardiogram when I was eighteen, or finding out I could never carry my own child. Open your eyes, listen to people, and gain some perspective on what sick means. The thought, and fact that you are stuck inside of a body that cannot carry you across the finish line, and that will cost you millions of dollars is realistic. You are allowed to feel this way; do not minimize your pain for others comfort.

While I realize I am NOT my disease, I find myself enveloped within it quite frequently. Instead of fighting it, I am making friends with it whether you can conveniently see that or not.

-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.