Non-Believers.

From day one Pulmonary Hypertension patients are never “believed”. We are doubted, misunderstood, misdiagnosed and called liars. Why you ask? Because our disease is growing and showing internally where no one can see it. Year after year high school friends, family, teachers and doctors wouldn’t think past something simple like asthma because I looked perfectly fine and I was a teenager. After my diagnosis people were just flabbergasted at what was happening to me but all I could do was smile and say, “told ya.” I was very happy when I was diagnosed because even after a while, the doubting got to me. I knew something was wrong but maybe I needed to be like everyone else. You’d think that actually being diagnosed, medication, doctors and surgeries would actually change these doubts people have? Oh lord y’all. It doesn’t even stop here.

Truth

I don’t like to flaunt my disease and I’m not the type that wants anybody and everybody to know. If it comes up in conversation then I’ll casually explain it, but people look at me like I’m stupid. I don’t blame them, and I don’t blame them for not being able to wrap their minds around it. I look like a perfectly normal 20-year-old to anyone I meet. What takes this disbelief to the next level are people who badmouth or refuse to acknowledge exactly what we have. And if you’re one of those people, I’m about to take you OUT, jack. Pulmonary Hypertension is very existent. It knows no age, race or gender and is doing it’s best to take lives. It’s continuing to affect children as well as adults and over half the problem are “non-believers” who refuse to believe anything is wrong. And the fact that someone would bad mouth or make fun of it is even worse. We can’t help what we have, we didn’t choose it but we are choosing to fight it and treat it. YOU have a choice…acknowledge this invisible disease for what it is and what it’s doing or continue to be a non believer. It is here, we are PHighting it and we’ve wrapped our minds around it. It’s time for you to wrap your mind around it and accept it too.

As for us, we just keep going. I would love to keep explaining on why you should take PH seriously, but my breath is precious. ๐Ÿ™‚ Non believers are a waste of time. We are lucky for our diagnosis because someone finally chose to listen and see us for what and who we are and that is who deserves our time and attention. No more energy should be wasted on people who have never “believed.” We believe and feel it and the most important people in our lives believe and feel it too. That is all that matters anymore. Just keep PHighting. ๐Ÿ™‚

-haley.

St. Patricks Day

Happy St Patrick’s Day my loves!

Rainbow

So this post is about to get really cheesy, real quick. But it’s definitely been something that’s bugging me so I’m going to make it short and sweet.

It is so easy to get really negative when your daily life is tracking pills, paying off medical bills and visiting doctors weekly to have your blood checked. And even for someone who doesn’t have a disease, just living in this economy can get you on a grumpy track really easily. I’m just straight up tired of turning on the TV, getting on Facebook or even going to work and hearing about all the negativity. Just stop, end of story. You are in charge of your own life so stop letting someone else affect your attitude towards everything. I think it’s really funny how we always talk about finding a pot of gold at the end of rainbows, and yes we all know that we can’t really drive to one and magically find it. But come to think of it I’ve never heard of finding pots of gold at the end of a thundercloud. Rainbows are a symbol of happiness, our children like them and when we see them…we smile. You will never find your happiness or pot of gold by always being a little black rain cloud. Get on the right track, get positive (find your rainbow) and I promise that will lead the way. Turn off the TV, get in control of YOUR life and just be happy. Happiness is a choice and some of us need to make our decision.ย Now if you’ll excuse me, I’m off to have a glass of wine.

-haley.

Caregivers.

Sooo, I took a break from writing for just a bit to collect myself. But It’s spring break, I’ve definitely made time to post and I’m excited!

Oh caregivers. You don’t think much about them until you think about fighting this all on your own. Since I’m twenty years old I still need someone to help me swim in this sea of pills, prescriptions, doctors, bills and many other ridiculous things. Thank goodness for my Dad who has helped me navigate things from day one. We may not always be the most cordial people to each other but at the end of the day he is who has raised me, he deals with sick people everyday and he knows exactly what I need mentally as well as physically.

My dad became a paramedic in the 80’s and has beyond excelled in it. He is a leader among others and he is definitely who you would want on the ambulance with you. It’s amazing to watch his technical smarts that I’ve grown up with but when I was diagnosed he put those things aside. He didn’t see me as a patient but as a daughter. He watched my symptoms unfold senior year and forced an appointment to finally figure out what was wrong. And ever since the diagnosis he has been right there through appointments, surgeries, medication changes and even there to kick some ex-boyfriend ass. (Go get ’em Dad.)

Dad

Dad back in the 80’s! Look at that hair. ๐Ÿ™‚

Dad and I

Dad and I at graduation right before I was diagnosed. (2010)

I guess It’s crazy how much it would take to raise a child that had any disease, and I can’t imagine what it would be like to deal with on a day-to-day basis. Giving Rocco his pills and taking him to his vet stresses me out just thinking about it. Dad and I definitely have not had it all together and we have been learning from day one and will from the rest of our lives. It is a learning process for not only the patient but the caregiver. Bottom line, always appreciate who is around and who is helping. Even if you’re an adult you have a caregiver whether they are there to help financially, emotionally or physically… they are there. Acknowledge them, their help and thank them. It’s not easy seeing a loved one through this. Thanks Dad for everything you’ve done whether its new tires, food, pills and long trips to Houston. I looooove you. ๐Ÿ™‚

-haley.