Got Oxygen?

From day one, I was the patient that pretty much did everything they were told not to do. I gave my doctors almost more anxiety than I have, because I was so rebellious. However, I love my primary doctors, they are always very truthful with me, and I know when to be serious and actually listen. A good doctor is very hard to find. The doctor that finally listened, did my first heart cath, and diagnosed me was not a good doctor. I will always be grateful, he is great in the operating room, but he will not listen to you. He will tell you the worst, and hand you a plastic bubble to live in, which is what most have done. “You have maybe two years to live” are some of the first things he had said to me. From there on out it was “you have to be on this medication” “No you cannot do that” “You probably have a blood clot” yada yada yada. After comparing with two other doctors, I got pretty good at being a BS sorter, and fired him. He wanted me to not live a life, but just live under my diagnosis, and in his office with his rules.ย  While it’s important to listen to your doctors who know your situation, you have to be really good at not putting yourself inside of a medical prison.

I was very unhappy in my hometown; like addicted to Xanax and didn’t want to live anymore unhappy. I knew where I wanted to be, and I already could hear everyone’s opinions. “You won’t be able to breathe!” “You won’t be able to even live!” “The altitude is too high!”ย  Even then, this is the place that called to me. When I broke the news to my primary PH doctor who I love, I built up my defensive side ready to beg him to see the good side to where I was wanting to move. He said, “When you vacation up there, do you have trouble breathing? Will you have an O2 sat reader with you at all times? How far away are you from a hospital?” After answering all his questions, he said, “If that’s what you want.”ย  My mouth dropped. My doctor grasps the concept of my mental happiness.

Processed with VSCOcam with f2 preset

Yes, I live in 10, 350 feet elevation. No, I am not “barely living”, and yes I do get short of breath here and there. I get altitude headaches, and some days, walking around the town is just enough. But I am absolutely loving it! No, I’m not saying you should go live on the top of a mountain to love your life. What I am saying is that you should be doing what you love, despite what your crappy lungs think. Hazel Grace still flew to Amsterdam with Augustus despite her doctors yelling about it. Do not let your crappy lungs be an anchor within your body.

Processed with VSCOcam with f2 preset

Moving here was no more rebellious than what I was doing everyday in my hometown. Five years ago they said I wouldn’t live another two…so I guess I’m just not quite inside the lines of what a PH patient should be in their eyes. I’m very grateful for my doctors, and their support in my new life! Sooo, my loves, if you follow me on Instagram you saw that I am giving away a water bottle (pictured above) from my store! I think it’s perfect for PH patients with the little phrase “Got Oxygen?” on it. Whoever wins this bottle, I don’t want you to think about the risky altitude, but the mountains in your life, the challenges, the new risks to overcome, and of course maybe starting a new life. Plus, it’s really freaking cute. If you want a chance to win this super cute bottle then follow the directions below:

Follow me on Instagram @haleyann92

Follow my store! ๐Ÿ™‚ @mainstreetmercantileredriver

Then shoot me a DM on Instagram (or email haley.ann.92@gmail.com) saying you followed both, so I know to look for you!!

I will pick from who follows both, and the winner will be announced Monday July 27!! Have fun lovelies. ๐Ÿ™‚ Song of the week is Colour My World by Chicago.

-haley.

Advertisements

Its the Kind of Tired Sleep Can’t Fix.

Well, Its November. I’m kind of in shock because yesterday it was July. Well that’s what it felt like. Anyways, November brings not only Native American Heritage month, but Pulmonary Hypertension Awareness month as well. I guess I will be speaking my mind quite a bit on these topics. ๐Ÿ˜‰

Judgmental; having or displaying an excessively critical point of view.

Each time I’ve been a tad heated this week, I’ve realized it all falls back to this main source. Judgement; my biggest pet peeve. I hate being judged for obvious reasons. Its crude, insensible, it leads to bigger problems, and it really does show the most truest quality in that person. Most of the time people get to the point of blowing it off, but I’m Haley, and I want to make a fuss.

Eleven years ago, I stumbled around a middle school gym in the worst pain of my very short life. The girls, being middle school girls, glared at me along with the gym teacher who loved her “basketball” girls. She would glare across at me as if I was refusing to keep up out of laziness, but I was literally gasping. I felt it; those uncomfortable vibes itching down my back, and into my nerves. She, along with everyone else in that hour of school were judging me. I felt fat, out-of-place, stupid, and that was the first year I’ve ever encountered suicidal thoughts. I told myself right there that I, and my body were not enough. I was eleven years old.

In high school I would stumble up stairs, and again clutch my chest to endure the worst pain my body could evoke. Girls I was attempting to keep up with would stand there, roll their eyes and say, “hurry up.” They would mock that they had to wait on Haley, “Haley’s dying” and again I was not enough. I could not comprehend why the stairs tired me, and that they freely ran up them. People didn’t understand why my hair was long, why I didn’t wear makeup, why I didn’t listen to music of this era, and really they just didn’t know me at all. They didn’t bother to understand me, they just wanted to make remarks. You see, we all think this ends in high school, but it doesn’t. I was a seventeen year old, more dead than I had ever been alive. My mind, along with my body wanted to be dead.

battle

At eighteen when they told me I was on death’s doorstep, I literally felt nothing. For seven years people told me, “She’s fat, lazy, its exercise-induced asthma, she’s weird, it’s just asthma, you have a chest infection…” blah blah blah. It was judgement; the literal definition. People’s doubts, critical thinking, lack of compassion, and stupidity had me almost dead at eighteen. My heart was killing itself.

I, by a miracle have made it to four years. Through surgeries, painful rehabilitation, excruciating treatments, body changes I thought I would never have to endure along with medical bills. When I make it to eight years I’ll be considered a long-term survivor. I still get glares; I try to power through dancing, something I actually love and people think I’m exaggerating when I mention that I could die. No, I actually can. My oxygen drops extremely low, and I’m in tachycardia at least once a day. I’m required to wear tubes up my nose which I try not to do because I feel as though I look stupid. I see your glares, I feel your vibes as I voice my opinons, and try to find my way through incredibly difficult emotions and self hate. I know I’m being judged as some dramatic college student, but if you laid on the surgery table awake, saw your own beating heart glowing on a screen, and endured the pain of this vital organ shutting the rest of your body down, you would think twice.

I hate judgement. Its caused death, discomfort, suicidal thoughts, actions, and it’s just not love. It’s the opposite of the religion you probably preach, and its unpleasant. I don’t care about mistakes people have made or continue to make. But is it too much to ask that we progress into the future with only love for people? Trying to understand, and comprehend them? Is that too much to ask for these days? I guess so. Thats all I have to say about that, because I’m tired; so tired of this subject.

Support Awareness, support learning about people, and support loving them as well. Thats all.

-haley.

Exit Here.

I’ve had some people contacting me over a subject that seems to scare them in this scary time of year; I am no longer PH centered. I know, its shocking to you, but it’s not to me. I think no longer just focusing on PH has given me a breath of fresh air into other subjects that have consumed my heart.

cornfield2

You see, I’ve been passionately writing since I was in the fourth grade. I remember the exact day that the lesson “clicked” and this writing thing became easy. I was scoring Fours (four being the highest in Texas) while everyone was struggling to make it halfway down their little notebook pages. My thoughts have flowed onto a paper naturally, and I’ve enjoyed it. I stopped writing around sixteen. I have no idea why, but really I had nothing interesting in my life, in fact I was sleeping most of the day. After I was diagnosed, Pulmonary Hypertension gave me an angry and emotional trigger, and just like a bullet, I fired. All of my thoughts from years of silence flowed out onto this blog. I can’t believe I gained an audience, and I am forever grateful for my PH family, the conference, the wonderful thank you letters, and my award sitting at the front of my room.

My PH writing itch has mostly been scratched. There will always be more to cover as new challenges approach, but I have other things on my mind. I am an activist at heart. I don’t want to be the ugly, screaming activist, but I do believe in justice and broadcasting the truth that people mostly miss. That simple statement has a lot of you upset. Some have contacted me asking why I’m not writing, some of y’all refuse to support and voice your opinions on such, and while I respect that I can’t understand that. I cannot live and breathe PH daily because PH is a disease that does not believe in giving “breaths.” I have nothing against my disease, or my PH lovelies, I just don’t feel a desire anymore. I am currently at peace with my disease, but not other subjects that come to mind. I want this page to be something you can come to reflect on for new articles, or search old PH issues that I might have covered in the past. But lets just get one thing across about Haley Ann; I am not a people pleaser. People pleasing is one of the weakest things others can succumb themselves to. You simply cannot please everyone, so what is the point of trying? Please yourself, and do what is right.

So I hope that with all this being said, you can support the blog after the PH years that hopefully it supported you in. There are stages in a disease process, and all are different just like the patients themselves. I am merely exiting one phase, and transforming into another. Thank you (hopefully) for your understanding.

-haley.

Song of the week is “You Sent me Flying/Cherry” by the lovely Amy Winehouse.

Internal Explosives.

Life is full of so many demons. Some we encounter, and others live inside of us which sounds like an episode of American Horror Story. Its been really hard to stay focused lately, to slow down, or to do anything productive other than my full time job. Why? Because I am the literal demon in this situation.

Anxiety was never a thing I took seriously, in fact, I didn’t even know it was a diagnosis. But as I sat across from a Doctor, and described my daily routine and thoughts attached, he diagnosed me with severe long-term anxiety. What? But as a flip back through family memories and pictures, certain moments come to mind. The thought of even rain sent me into a crying fit, throwing up before performances, feeling sick whenever I had to leave my dad, and having to have someone at the house with me all the time. As we get older, its not just storms but people, certain songs, walking around the house a certain amount of times before I know I can leave it, and all of this just adds up to be little emotional triggers; triggers that launch a explosive anxiety bomb in my brain.

anxiety2

Whats it like to have anxiety? Its like seeing something that bothers you, and replaying that situation over and over again in your mind, thinking about all the horrible outcomes and what could happen, and either acting on that stress and venting to someone only to annoy them, or choosing to live with that sickening feeling. Its like laying in bed awake at night because you know the rare disease you have causes blood clots, and your worst fear is to die in your sleep, and you just know that even right now one could pass through your heart or brain and kill you instantly. So, you decide to stay awake. Its like worrying about your family’s safety because they didn’t answer the phone, you think you left the coffee pot on, and you cant focus at work because you just know you will come home to a house that was burnt to the ground. Anxiety takes away my peace of mind, my will to do things, it wants to me stay at home where I’m comfortable and not have to deal with anything that could trigger anything else. Yes, thats how bad its escalated. Dealing with people that have anxiety, I could only imagine is not fun. But your actions unfortuntely play into theirs. We need you as support, and a calming ressurance, not someone who makes us feel crazy. You doing that could actually make us crazy. What exactly do we need from you?

Understanding. You may not get how our brain works, but its locked up in our body. We don’t appreciate how it works, and you definitely don’t, but we need you to be that relaxed force for just that moment.

Genuine Concern. When you tell me to calm down, you’ve just evoked the powers of an anxiety hurricane. You made me feel stupid, out of control, over-exaggerated, and you’ve just triggered every other emotion along with that too. I know you do want us to calm down, and we do too. Think that all you want, but talk to us. Why are you feeling this way? What can I do to help? Lets take a couple breaths, and talk about this. Now that makes all the difference.

Don’t make fun of it. Its a serious problem, and I wish my brain didn’t function this way, but it does. It has since day one, and making me feel stupid and crazy doesn’t help. In fact, it makes me distance myself from you, and it makes me hate me. I’d rather overdose on anxiety pills than deal with this feeling. You merely get to hear about how my brain works, you don’t actually feel the internal thoughts. Its exhausting.

So this loves, has been a huge hindering factor on my life right now. One that I’m trying to control, but as stated before, its exhausting. Its no surprise that anyone who might’ve been diagnosed with something would have anxiety. If you feel like you do, then please talk to your primary, and a therapist. We already live with a chronic fatigue, so why add to that? Free yourself.

-haley.

Hollywood is Still Hollywood, and I Am Still Sick.

Being a sick young adult in this world is not straightforward path. It’s a winding road full of surgeries, painful treatment, people who might not believe you, and even companies demanding money for saving your life and threatening to not save it anymore. With that being said, anyone who isn’t sick will not understand the sick. How could they?

The first thing I say when someone is experiencing a situation that I have never personally dealt with is, “I really don’t understand what you are going through, but I am here.” Why? Because it’s the truth. I think it’s a high form of ignorance to try to relate understanding when we really do not understand. How can we be understanding when we’ve never stepped into that world, we’ve only had a slight view of it? It’s completely different to see something, then experience it. You can watch someone chug vodka yet remain sober, but its different when you are the one chugging it too.

Lately I’ve spent some time reading very well written articles about how this is the year that social media is portraying “sick kids” and how it’s in style. Often I catch myself thinking, “no this isn’t a movie prop” when I walk around in public with my cannula up my nose. I definitely feel the anger as movies like The Fault in Our Stars rise to fame, and people become obsessed yet fail to realize that these sick kids are real, not just lovely on-screen actors. I’ve felt that ridiculous anger, believe me. These articles go so far as to say, and quote:

“But teenagers with illnesses do exist. I am one of them, and it hurts to see movies and television glamorize our suffering.”ย  –Lillie Lainoff at Yale University

But amongst this rage, I had a lovely realization that is much easier to deal with than that annoying anger which I have every right to feel.

When I noticed the white and black clouds of a bright blue book at Hastings, it succeeded in triggering me to read the back. I didn’t have seventeen dollars at the time (I know, ridiculous) but I ran back into the store on payday, and immediately made it mine. The minute I read about Hazel’s cannula I laughed and screamed. I was hooked, which is an understatement, just like all of America. I wasn’t enthralled because Augustus is “so cute”, or Amsterdam is romantic, but I was enthralled to read that someone could describe my feelings on paper. It was refreshing to read of an illness which you think I would be sick of; pun intended.

I can’t say for other TV shows, or movies, but I’d like to think that The Fault in Our Stars was anything but glamorous. So many people, including myself, described it as emotional death. Yes, it needed a little glamor because it was in fact a movie, and it was nice to experience butterflies for just a bit before impending death. I think what I love about John Green is not only his intelligence, but how realistic he is. His writing is real, and TFiOS is raw. John Green was a chaplain in a children’s hospital which inspired TFiOS. As John Green has stated a long these lines in an interview, “What struck me about these kids was the fact that they weren’t always smiling, they had no amazing wisdom just because they have cancer like everyone thinks, but they were just kids who happened to be sick.” Exactly. As I saw Augustus’s missing leg, Hazel’s hospital visit, her rapid breathing, a shitty author with a twisted view of sick children, and the raw yet horrifying scene of Augustus throwing up and screaming that he “hates himself” days before his untimely death was not glamorous. A lot of people actually hate TFiOS because it wasn’t perfect. But those scenes, as many tears as they provoked, and as much my heart hurt, I smiled. Those feelings were so real; those scenes were amazing. I hate myself when I have to sit down because my body is failing me, and everyone else gets to do what they want yet I am once again reminded of my own fault.

The fault in people saying “Hollywood has it wrong, and is glamorizing my illness” is that they are looking to people for understanding where understanding is not due. Stop getting mad because you are searching for understanding which is beyond unrealistic, just like this show titled, “Red Band Society.” That show may be unrealistic, which from my research it does in fact sound like a shitty portray of disease, but I think its lovely John Green wrote this real book, inspired by real kids, and it ended very real. Dont attack TFiOS. He wasn’t looking for people to understand, or glamor, he just created a lovely work of art. I personally experienced a version of that story, but I know that a lot of people who saw that did not, and they probably never will. They wanted Augustus to live, and hated Hazel’s walls that she built around herself, but I have a version of those walls, and I accepted Augustus’s death. It still sucked though.

So yes, I am aware of the anger of feeling like my oxygen is a movie prop, and the possessive thoughts of feeling like TFiOS is “all mine” and that these teen girls are clueless. But I catch myself in remembrance that I am expecting understanding where it is not due. Those kids will not understand my story, they weren’t meant to, and they can’t help it. They can only see my story, and respect it. So appreciate this art, The Fault in Our Stars, rather than bashing it. Because when they buried Augustus Waters, and Isaac couldn’t even see that because he just had his one eye he had left removed, I felt anything but glamorous. I smiled though, because I knew that I was a rare person who has cried those tears, and had those exact thoughts. I understood, I felt it was meant for me, and it was beautiful.

faultinourstars

-haley.

Instagram @haleyann92

Ch-Ch-Ch- Ch-Changes.

I’ve pretty much diagnosed myself with the worst case of writers block ever. I’m not feeling inspiration, a drive, or anything else currently but to instead focus on my book. I really don’t want my blog to suffer (it’s what propelled me into writing) so I am attempting to keep my head above water with all of this. With that being said, some serious changes are coming to the blog.

It’s not just about PH anymore. This topic is what started the blog on issues that everyone overlooks with a disease, from fashion to tattoo’s, doctor appointments, and what not, but now its evolved. As I continue through my daily life, I realize how much more I would like to write about other things. Education, my heritage, other issues that need the spotlight of activism, and even little things like my room and pill bottle organization. YES! It will be synergy between my serious writing, and thoughts, to little daily things that help us progress. I think that, overall, is what I need and what people will enjoy more. I hope these changes are more enjoyable to my readers, and also help me find my inspiration a little better. ๐Ÿ˜‰

yourstory

With that being said, now we can focus on the book. YES! A Haley Ann book is in the making. However, it’s a young adult fiction book. I will start releasing certain quotes on posts WITH a poll, and you can vote (anonymously) if you liked it! While talking with Colleen Brunetti a couple of weeks ago who is in the process of writing her own book, and it’s already successful, I told her whats stopping me is talking about the book itself. I really don’t want to hype up the book if it’s not worth hyping up, which is why I need your help. You get to be the editor, and audience. So please take time to read, and vote!

Now to wrap up everything, song of the week is The Rain Song by Led Zeppelin because I needed a little classic rock to remind me of song good times with family. What a beautiful piece. I hope you continue to have a lovely week! The next post? Haley’s Room. Prepare thyself.

-haley.

Two Years!

Happy Monday my loves!

I am trying to get inspired, but right now I’m enjoying some quiet time with Rocco Ricardo to reflect on art, read, and edit my book. Whenever I feel the need to write, I will definitely make a post, and try to this week. In the meantime, thank you to all of you who have made this blog possible. Without your support, curiosity, love, and eyeballs to read this text it would be pointless. So thank you again. Song of the Week will be I only Have Eyes for You by the Flamingo’s. Its very much the ending of summer, and all I can think about is that American Graffiti feeling. What a fantastic song to close with. In the meantime…

Processed with VSCOcam with f2 preset

-haley.

 

Too Much Pressure.

Hello August! I feel like I’ve made it over a crazy couple months of non-stop on-the-go Haley, and now things are slowing down. More writing, more calm, and more happiness. ๐Ÿ™‚

I finally had a two month PH checkup, in which everything is ok except for a high heart rate out of no where, and I’m being referred to a new specialist that is closer rather than going to Houston. Also, I met a new primary doctor to handle all other issues who blew me away with not only his looks (hehe), but him thanking me for choosing him, and taking almost an hour examining me from head to toe to establish me as a new patient. He was very precise, and already knew Pulmonary Hypertension inside-out, and was quite interested that I had it. A PH patient’s whole world is full of pressure. The word hypertension literally means high pressure, high pressure in the lungs, high pressure in the heart, and I also found out that the pressure in my eyes is even high. When my new primary said, “I think we need to check your kidney’s for high pressure” I through my hands in the air with the response, “if there is anything that could ever have a pressure in my body it is high.” He laughed, but I was not as amused.

photo(64)

You see, with all this “pressure” existing within my body, it makes it extremely hard to deal with outside pressure from other unnecessary things and people. Someone said to me to other day, or more yelled, “I know you’re done” and that struck an angry chord. I walk around everyday breathing twice as much as you, with twice the pain, and other everyday issues (like almost passing out from just bending over) and I’m just tired. Why? Because I have a disease that just so happens to have a side effect of chronic fatigue. When everything in my body is built up to functioning on a high level with outside demands, my body sure does reflect “done.” Emotionally, and really, I’m trying not to be done, but my lungs really want to fold themselves in half. Sometimes people really do not comprehend the realities of this disease…but your lungs and heart are a big part of why you are able to read this. When they don’t work right, despite how fine you may look, you really aren’t. People think I’m lazy, people think I exaggerate, but one of my PH friends who is my age (and shares my name) just received a double lung and heart transplant. While being prepped in the hospital she looked damn fine, because it’s an invisible disease. Appearances are deceiving.

Overall, you as a patient, or even just a caregiver, or person will have a lot of pressure throughout life. When its unnecessary, get rid of it, and embrace what truly matters. I’d rather my heart be overjoyed than overworked.

Song of this week! Houdini by Foster the People. Its fun, and perfect right now. Enjoy this week which is the start of a new month!

-haley.

Get Out of That Box!

I may not be able to pinpoint how I feel exactly lately, but I do know at least one emotion that has been consistently pumping through my veins all week; Anger. So much freaking anger just completely surrounds my world with situations, and with people…mainly how they decide to treat other people.

I follow this lovely vlogging couple on practically all social media (Anna-lee and Jesse) because they are adorable, smart, and creative. While scrolling through Jesse’s Instagram one of my other sleepless nights, I saw a picture of two dogs in which the caption was “retard club.” The dogs were being dogs, and Jesse was being funny. Jesse and Anna-lee both are constantly in the public’s eye, talking to people, giving advice, and successfully just showing who they are. Back to the picture. I noticed a ridiculous amount of people commenting that they were now unfollowing because of his word choice, how awful he was, he needed to be a better person, delete the picture…blah blah blah. Then you see Jesse’s reply to all of this. “It’s like you have to edit yourself until you are plain and boring to please everyone.” This stood out like a slap in the face because it’s what I’ve been wanting to scream all this week. I’m always on Pinterest (um, yea) and see all these lovely artsy quotes saying how much we need to be patient, not judge people, be ourselves, live life to the fullest, and live happily ever after. In a world so full of these thoughts that “be yourself, and screw everyone else!” we sure are criticizing every little bitty thing anyone ever does. We can’t show cleavage (you might get offended that your husband looked), we can’t take selfies (how awful that we love our makeup, or awesome beard that day!), we can’t support abortion (you have different religious views that you need to push onto us), we can’t use certain words, we can’t love the people we want to love, and we just can’t exist it seems like. I’m literally editing, touching up, walking on eggshells to make sure that I fit into society’s perfect little acceptable box. That box is an illusion.

letmelivecourtesy of Pinterest, of course.

After editing me, changing, feeling self-conscious, watching everything I say and do….I just give up. I give up, and choose to stop doing that because I am respecting me. It’s about respect, and it’s about kindness for all of you people in general. From what I hear for some of you Jesus followers (I know some pretty awesome ones) but I hear those are called Fruits of the Spirit in the Bible. Start working on them. There is a difference in an actual, horrible, and offensive person versus someone just trying to be a happy human. You don’t have to agree with what I do, what words I say, what I choose to put on my body, what selfies I take, or my spiritual views…but I would like you to respect me, and stop asking me to edit myself down for your personal viewing.

That is all.

T-Shirt orders are being shipped out all this week! ๐Ÿ™‚ If you want to order your Just Breathe Tee, email me to see if your size is available. Also, follow Anna-lee and Jesse on Youtube! They are so fantastic.

annaleeandjesse

-haley.

Shopping? YES!

Finally! After many many months of people asking, begging, and wondering…I can finally say that my Just Breathe Lung T-shirts are for sale! The catch? These are left over Tee’s from the Lantos grant. There is a very limited amount of sizes available. It will very much so be a first come-first serve system! Follow the directions below to finally purchase one! I will work through email only. ๐Ÿ™‚ haley.ann.92@gmail.comย ย ย  I hope everyone can finally have one! Thank y’all for being supportive, and patient!

lungtshirtdirections