Life With PH, Personal Life

Takes One to Know One.

I guess, emotionally, I’ve come to a stage where I feel “checked out.” Nearly everything I do when It comes to talking to people, attempting to write, and even watching a movie, I feel as if there are no feelings left right now. Emotional drained, whatever you want to call it, that’s how I’m feeling. Really, I have no idea why I’ve reached such a weird spot, but I have. I think back to The Fault in Our Stars, and of course I become like every teenage girl, melting into a puddle on the floor when Augustus comes on-screen. But for me, it goes deeper than the superficial feelings of “he’s cute” and “he says all the right things.” For me, it strikes a deep chord of acceptance. He doesn’t care about Hazel Grace’s oxygen, in fact he teases her, helps her, and understands that her lungs suck at being lungs. He understands the seriousness of being checked into the hospital, and the mental torture we go through as patients not to be “grenades.” He doesn’t care, and he’s still there with his non-lit cigarette hanging out of his mouth, and escorting her around.


I wonder sometimes whether it takes the sick to know the sick. The whole, “takes one to know one” phrase has crossed my mind many times. Diagnosed at eighteen, I was fresh out of high school, and had literally been a so-called adult for maybe a week. I was still a kid at heart, and so was the kid I had been dating for a long time. I guess you could say that Pulmonary Hypertension was the equivalent of being T-boned by a semi…for him. I saw this so-called semi coming for a mile now. I felt my lungs, I felt how much work it was just to stay awake all day; I knew it was coming. The mental side in which not only attacked me, and tricked me into hating everything, attacked him too. Who expects two eighteen year olds to deal with surgeries, oxygen machines, mental acceptance, and acceptance of each other? It’s almost impossible. You really don’t even know yourself yet, but all you supposedly know is “I hate myself, and I should die as how my body intended.” Yea, a giant bolder in a tiny pool. It’s not fun. What was shock, turned into superficial acceptance and support while trying to figure out what was going on, which turned into being tired, figuring out how tough this is, finally understanding these shitty lungs aren’t going away, boredom, moving on, making fun of the disease, non acceptance, and separation.

There was no Augustus. There never has been. I don’t blame him, it was a lot for me to handle, let alone him. As I meet all these new supposed “men” they still don’t understand. Not to show hate, but they don’t ask the questions, they really don’t comprehend that taking on me is taking on an emotional Olympic course. “It’s no big.” While I want someone to treat it as if it’s “no big”, I also want that balance of they completely understand how big this lung monster can actually be. Just saying. They have no idea. Maybe if they did, they would run like him. I really don’t blame him, and sometimes the little things he did of showing his superficial “Augustus” side can make me smile. But I stopped trying to explain my lungs a long time ago to certain guys; It takes more oxygen than it should. Overall, I just loved the story of Hazel and Augustus. I think it fell together beautifully because they both knew what it was like to be trapped in a failing body, and to hate yourself.

Only the sick understand the sick.


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Enjoy our song of the week, Let Me In from the Fault in Our Stars official soundtrack.

Life With PH, Personal Life

Happily Ever After.


So, the month of April and May have almost killed me. Not only am I physically trying to keep up, but mentally as well. Enough about those hardships! As I stroll through aisles of local stores, I’m starting to see graduation caps everywhere, and hearing my sister get her graduation stuff together just sends me into a flashback about what I was doing four years ago…I was probably serving burgers, and would be till around eleven o’clock at night. I was just as tired, just as stressed, and really had no idea what world I was about to enter into. I was lucky enough to be walking around yet even that was a task, and all these other seniors made it look so easy. Damn them. I just didn’t understand the difference in their bodies, and mine. Why they were lucky, and why I was breathless.

It’s a fascinating thought that from day one, we were born into a body; a body in which we’ve spent more time with than anyone else in our lives. We know the creases, age defying marks, bumps, and scars…we think we know everything. Truth is, we don’t. Our body makes attempts to communicate with us, and sometimes we listen subconsciously. Our body is really in itself its own being that we were put into, and it deserves its own upkeep. It’s really an amazing machine that we have to polish, wash, be gentle with, listen to, and treat right…even then it can still fall apart, and fool us.

I had no idea my heart was huge; no one did. I had no idea my lungs were decrepit, and formed wrong. I had no idea I had about the same internal age of a seventy year old…my own self didn’t know of these secrets. My body tried, no one listened, so I decided not to either. Four years ago when I was buying my graduation gown, when I was walking across that stage, all I could think was “I am tired, and I can not breathe.” I wasn’t thinking about college, scholarships didn’t cross my mind (who could think about that when there was so much sleep to be caught up on?), I wasn’t even thinking about how happy my teachers were that this cranky, almost failing, defiant student was finally exiting. I really didn’t want to think at all. I wanted to marry my then boyfriend, I wanted answers, and despite what answers I got I wanted to live happily ever after. My answers came a little over a month later along with needles, surgeries, swollen ankles, medication, and doctors. There was no ring, cute apartment, supportive guy, or amazing university. I still can’t look at a graduation cap because that’s how horrible that time was. I still can’t bear the thought of listening to “pomp and circumstance” because it throws me back to shattering dreams. Eventually my heart shrank, my medication worked, and after all the IV’s were pulled out and doctors stepped away, there was just me…still alive almost four years later, something they thought my body would never let me do. Happily Ever After.



PS- Song of the week is the amazing “Love Never Felt So Good”. I’m beyond impressed, MJ!! Also, new contest. Check it out under the contest tab!