Life With PH, Personal Life, PH Health

Four Years.

I was only fifteen years old while watching my freshman English teacher scribble inside of a John Lennon book that she decided to give to me while repeating, “Life is what happens while you are busy making other plans.” She said this often, and as fascinated as I was with the quote, I had no grasp of the concept. I mean, doesn’t every fifteen year old know exactly what they are doing with their life? I did. Mrs. Hepler had spent that year critiquing short stories I wrote in private, and we continually bonded over the Beatles, writing, and feminism. She saw something I guess, and felt the need to repeatedly say that quote to me. Its been seven years since I put that book on my shelf, and since I’ve sat in a desk in Mrs. Hepler’s class.

seventeen2Two weeks pre-diagnosis.

You see, my life was all planned out at one point. I was graduated, eighteen, had a fabulous relationship, and even though I was walking into a hospital at five in the morning well aware of what was about to happen…I still thought I was in full control. I remember the nurse having me sign “death papers” in case anything happened. That sting of reality hit hard because I had been eighteen maybe two weeks. I mean, werent my parents supposed to be signing these? I recall the same nurse taking literally eight tries to start my IV, and feeling the frustration of my family standing around telling me their goodbyes before I was wheeled off. But I had to remind myself that this was surgery, I would be asleep soon, and it was all no big deal. The masked female telling me that I had to be awake took another hack into my control theory, and soon I watched it crumble when they injected me, and slowed my breathing. I felt a giant tube squeeze its way through my throat, and watched a cord weave its way into my beating heart on a glowing screen. Doctors chatted around me in professional gibberish that I was too tired to comprehend, and soon I was being yelled at because I was losing consciousness, and bleeding out. Then with blinding lights flipped on, and nothing but silence filling this tiled blue room, I heard my doctor say, “Its your lungs.” My control was shattered.

At first I was told I was physically dying, and then I was just mad. Later, I felt like mentally I was dying, and wanted to actually physically die along with my broken heart, and my life was a collage of unidentifiable direction, misleading information, and trying to fight for control. I’ve been PHighting for a long time. I’ve taken pills, had more tubes shoved into arteries, scans of my organs, and oxygen crammed up my nose. Four years has gone by quick especially when you are told you only have two years left to live. At times I really thought I would rather take my own life, than to continue to fight this tiring disease.

The blue prints in which I thought I had planned my life out perfectly went through the shredder a long time ago. At one point, you just have to sit back and think, “what the hell happened?” But this weird, and unpredictable road has been painful, but as I’ve said before, there is an odd beauty in pain. I saw this John Lennon book collecting dust on my shelf the other day, opened it and read a little message from Mrs. Hepler. I smiled, and soon everything fell exactly into place. I’m still me…but my life really did happen despite my other plans.

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Four years strong.

This is dedicated to Tricia Hepler, who without, I probably would have a ridiculous amount of comma’s on this page. In fact, I bet I still do. What a fantastic person, writer, and general artist you are. Thank you.

-haley.

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Personal Life, PH Health

You Should Be Scared.

Oh, yes. Haley had to blog on it, because I think it heavily affects us PH’ers. If you’ve seen my posts on Facebook, I’m sure you are just all sorts of annoyed right now. Please, be annoyed, but seeing as how I’m someone who is alive because of medication that is used for erectile dysfunction, and I just so happen to have a uterus and ovaries (which apparently I have no say over) I feel strongly on this subject. My blog, my views. If you can’t handle, then don’t read it. You’ve been warned.

hobbylobby

Now you’re thinking, what in the world does Viagra medication have to do with birth control? Lets start from the beginning. All the way back religious freedom. For those of you who don’t know, Hobby Lobby just won its case in Supreme Court saying that because they are a “Christian” based company, that they will no longer cover for any of their female worker’s birth control. This is shocking to me, and disgusting on so many levels. Lets start with the basics and build from there. I grew up in an era where “Worth the Wait” came to your classrooms and preached to you on not getting pregnant, and if you chose to be sexually active then to be protected. They even told us little eighth graders and freshman where to get free birth control. I was raised in an era that wanted us all to have birth control to prevent making a stupid mistake that would not only affect us, but this child, our families, and so forth. Now, America has spiraled completely backwards as if to make women feel horrible about preventing an unwanted pregnancy. Really? You aren’t going to stop them from having sex. I don’t care what God you shove in their face. With that being said, now we want to take away their protection so we can force them to pop these unwanted pregnancies out? I hope you follow-up with those kids, and make sure they are taken care of. If you’re pro-life, then you better make sure that kid has a life. Otherwise you are just pro-birth. Don’t even get me started on why us PH patients can not have kids. Yes, we can get pregnant, but eighty-five percent of woman die before the baby is born because it accelerated the heart failure. You would deny a woman who might be able to take birth control (depending on her situation, I can’t) so that she might possibly get pregnant and die? You would shame the woman who can’t be on birth control, got pregnant maybe even with her husband, but had to have an abortion because she knew the pregnancy would be fatal? Shame on you, you judgmental Christian. Aww, forgive those serial killers though…

I think its disgusting that in 2014, as a woman, I am still fighting for full control over my body. I was born with my ovaries, my uterus, my hair, and my fingernails. I will do with them what I damn well please. Is this sex slavery? Are you just deciding for me what I shall do with my ovaries and vagina? No. They are mine. They are the woman that they belong to. If we want birth control, diaphragms, babies, no babies, or fifty sex partners then that is that woman’s decision. To deny them basic access to basic needs is a human rights violation. I think it’s a violation of freedom. With the Fourth of July coming up, it really makes me think of America and all these soldiers who have fought to maintain freedom in this country. But as I see all these stars, stripes, and fireworks being prepared, I’m not proud to live in America. Freedom is being taken from us one step at a time. Basic rights for the pursuit of happiness. Not everyone’s happiness involves pregnancy. In fact, most of you bitch when you’re friends get knocked up, and are not married. Are we really free anymore? Compared to other countries yes, but this is a scary path we’ve turned down.

Now, back to the Viagra. If Hobby Lobby can go into court and say because its “beliefs” that it will now basically force it upon its employee’s, and no longer cover birth control, what about other companies? I read in an article earlier, can a Jewish company now say that they wont provide any medication that is derived from a pig because they don’t believe in that? What about another christian based company that isn’t as sexist as Hobby Lobby, and wont cover things like Viagra? Guess whose treatment is Viagra? Yea, um, my life saving medication, as well as many many many other patients, even children. This is a very complicated, ugly, political tree that branches off in so many directions that should’ve been left alone. Someday, your treatment will not be covered by your employer, American. Why? Because they don’t agree with it. Ahhh, such great doctors, right?

Ahhh, now the religious part, my favorite. I am so tired of Christianity. Sounds horrible, doesn’t it? But really. I’ve grown used to the idea that Christianity is about forcing your beliefs onto another person. In this case, its proved so. “Well Haley, they are a christian based family, so these employee’s can work somewhere else.” Are they a church? No, they are a profitable business. What about the females that have worked there a steady amount of years? They now have to look for another job because God knows what their birth control costs out-of-pocket? The birth control that they’re taking for possibly cysts, or hormone therapy, or maybe because they just had a kid and don’t want another? Too bad now unemployed female in an already jobless economy!! Hobby Lobby thinks you should no longer cure those painful cysts, receive hormone therapy, and they think you should be the next 19 Kids and Counting star! Just wow.

Overall, it’s just a horrible thing to support. Especially if you are a female. How can you support a company that strips away your freedom as a woman? If men had to be on birth control, I bet they would have bacon flavored candy of birth control available to men at those check outs by those colorful sharpies. Ha, Religion. If we’re talking about the same God they claim to believe in, its funny how he gave us Humans a choice. He said,”You can choose to believe in me, and believe in everlasting life, or not.” He gave us freewill. GOD DID. Yet, these humans…do not.

-haley.

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