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. 😉

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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.

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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. 🙂

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.

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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.

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.

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! 🙂 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.

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-haley.

Thank Y’all.

Finally, I am home. I have nothing left but exhaustion, and happiness. This was such a perfect trip! I wanted to thank my readers, and the PH Association for making it possible. This was an absolute highlight of my life. Most of you followed on Facebook, and Instagram, and thank you for that! I am so glad you got to see the events unfold online. To those who I finally met in person, that was such an uplifting experience. As most of you know, I was nominated for the Young PHA’s Outstanding Citizen Award which still baffles me. I watched so many other PH’ers get on stage to accept their awards, only to hear about all the amazing things they’ve done. They are some PHenomenal people doing PHenomenal things! It was hardcore proof of the importance of connecting with other people who are affected by the same disease as you. Get involved! It will change things. Congrats to all of those who accepted an award, got to attend conference, had an amazing time, branched out, and learned. Everyone has done amazing job in the PH community.

As I’m coming up on my fourth year anniversary of being diagnosed, I’m reflecting heavily on my original feelings towards this disease. How absent I was, blank, unresponsive, and I possessed not an ounce of fight. When you are diagnosed with anything it’s really starting a challenge of overcoming yourself. That sounds easy; you know you better than anyone else. Except, most people leave out one huge detail about a diagnosis. You are no longer you anymore. From day one, you are wearing a completely new skin, adapting to what feels like a completely new body, treatments, a new circle of people (or survivors) and everything you thought you once knew about yourself is dust. Well, some of it. Now you will be tested on your mental, and emotional strength, how far will you go to physically overcome, and to one day make it to an infinitive finish line called “survivor.” Overcoming yourself is not easy; it’s the hardest thing you will go through. In the meantime remember, that mental dominates physical. If you can understand, comprehend, and get a handle on this mentally…your body will catch up. Mind over matter. I had to dominate my own self, swallow pride, not listen to certain thoughts, cut certain people out, let doctors in, and really figure out what it is I exactly needed. It really is possible to pull yourself out of that dark place. The only thing keeping you down is you. Look at yourself and heavily evaluate what is going on, and what needs to be changed. It took almost four years exactly to get somewhat on the right track. You will fall off every now and then, or take a wrong turn. I struggle mentally, emotionally, and physically. This is a lifetime disease, and until we can get that cure, it will be a lifetime battle. Find the will to live, and hold onto it. There is beauty in this struggle. Who knew I would get to wear glitzy shoes, and accept a ridiculously heavy glass award, meet fans, take pictures, stay in a four star hotel, have people ask me questions, and have my face and story all over the world because of PH? Quite frankly, I’m thankful.

Train your mind to see the good. Mind over matter. Thank you to everyone for showing me the good side of PH! Its been a trip. Pictures are below! Thank y’all again.

-haley.

Instagram! @haleyann92

Facebook.com/phenomenalhaley

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O2 and Iphones. What?

So, the other day (by the other day I mean like two months ago) I found myself experiencing some chest pain, and I just knew my oxygen was low. I found my little O2 sat machine, and of course it stopped working. We’ve attempted to revive the damn thing several times, but it flat lined a while ago. So, I settled on taking my blood pressure, but as anyone would know that still isn’t the same as knowing where your oxygen is. What to do…

I turned to my phone of course. Why not? I ask the damn thing questions, it has to be able to know something! Sure enough when searching the app store I found the perfect something. Its called the “Oximeter” app by DigiDoc. With that being said, this is an app on your phone. NOT a thousand dollar machine that ensures accuracy for the safety of the patient. This is an app, on whoever’s iPhone that downloads it. If you one hundred percent depend on this thing, then it’s probably not a good idea. You really have to get a feel for it, as well as its faults and quirks to know your true health, and know if you are at risk.

How is it measuring my O2, and heart rate? You take your fingertip and cover not only your flash, but your camera. It takes a couple of seconds if you are super still, and after its finished, it records your results. So it’s always nice to have a record of how you’ve been to show your doctor. Now, Accuracy. I’ve noticed when my oxygen is low the app freaks out. If it is below a reading of ninety percent, it will just saw low rather than how low. That kind of bugs me. But, at least I know its below ninety. Usually if I’m feeling not-great, and it reads something like “96” or “94” I know it probably means 92ish. Overall, I take in to count how I’m feeling, breathing, heart rate, BP, THEN that number.

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I think this is a fabulous app to have just in case, but should not be your only source. For right now its mine because I’m not a huge risk. But when traveling, and bringing your machines isn’t always an option, this little app should be. For $2.99, I think it’s a great “back up” investment.

Happy Throwback Thursday everyone! This is absolutely my favorite “Picture day!” Anyone knows by now that Instagram is my favorite app because I love pictures. Here is my throwback pic! This was taken at Philmont Scout Ranch in Cimarron, New Mexico. My brother was getting back on the Kwahadi Bus (Native Pride!), and we were telling him bye. I’m sure Dad was helping load the bus. Pictured from Left to Right: My Grandpa, John, Mom holding Holley, then meeee. Enjoy today!

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-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Patience is Prettier.

Happy June everyone! I can’t believe I’ve finally made it to this month. Exactly two weeks until I leave for Indy! This is a very busy time, and I wanted to thank everyone for their patience. Not only is attitude a very tricky, and contagious concept, but I think patience is as well. How can I put this…

I am not just some college kid lounging around, going out with friends, and blowing things off. My average day consisted of getting up in the morning, working at the school until around three, then from there going straight to my other job till around eleven o’clock at night, coming home, trying to catch up on blog things, but most of the time I fell asleep. I am a very busy person. Now that school is out, I’ll have little opportunities and small windows of time to get things completed. In basic words; I push myself enough. If you push me, I will push back.

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I’ve encountered some pushiness, and non patience. I understand frustration, but I will not be understanding in these situations. Right now I’m lucky enough to remember to make a blog post! So, patience. This is something that is quickly trickling out of our economy. We have smart phones that process things faster than computers, we have supermarkets with two-hundred cashier lanes open so you can get through faster, we have fast food drive throughs, and we want everything done now. We’re living a life where we don’t really have to be patient. So when the time comes to wait a whole 30 seconds for the internet to load, driving around a wreck, or waiting in line for a spray tan, we FLIP. Patience is a fabulous thing to exhibit. To hear the excuses of “I’m a paying customer” shows me that you value money over respecting another person. To hear “its their job” is another example of the non-respect you have for another person. When you are understanding, show compassion, and take time to evaluate the situation rather than just your feelings on your side of the story it begins to get easier for everyone involved. The other day I waited almost forty-five minutes on just my food. I got a little questionable of what was going on, but was not upset with my waitress, or cooks at all. I was once a waitress that lost an order too. This is life, full of thrown together mishaps, and somehow (maybe) we make it out alive.

Please look around and acknowledge the humans around you. Exactly that, they are human. Patience was built into your body. Start exercising, and practicing it more; I’m having to work on it too.

Thank you again for everyone’s patience.

Congrats to Karla, our Hazel Grace contest winner! TFiOS comes out FRIDAY! Our song of the week is Icarus by White Hinterland. Perfect, breathable summer song.

-haley.

Attitude Adjustments.

Attitude; Thats such a negative word to me. In fact, I just had discussions with some of my fifth grade girls, and how they are over loaded with it. I make them think that because they are growing up they need to learn how to drop this so-called attitude, but who am I kidding? It only gets worse with age sometimes.

This simple little moody word has a lot of power behind it. It’s a force of destruction, a glimmer of hope, and a knife in someone’s heart. When you step back, really look at yourself, and evaluate how you communicate with people you start to see that without actions, you’re left with your words only. Your ONLY communication. Your attitude; It can take a life of its own, and overpower you if it wants. What vibe are you giving off? How are you communicating? Whats overpowering you?

I’ve seen so much attitude lately that it completely blocks off any actual communication. People just don’t want to listen, they just want to be mad. They want to jam their words into people’s feeble ears, and make their points boldly. In return, you were never heard. I’ve seen humans with such bad attitudes that the oxygen in their nose is no longer beneficial because spiritually, and emotionally they just cant believe in themselves, or others. I’ve always said you had to drop barriers to let the good overcome you. Nothing will happen with a door shut. Drop it, open a door, and open your ears. Listening to others more than  you speak, being patient more than being forceful, looking for improvement rather than making points is so much more helpful.

Attitude; it can be a lifesaver. Literally. I had such a bad one about my disease. I really wanted to just exist within it rather than fight it. Developing, listening, improving really did change things. It changed my outlook, it changed my attitude. I became a teacher instead of a cop. I felt like instructing, and listening more than I did pointing out error. Some of us even had to make attitude adjustments about wearing our oxygen, me included. My attitude saved my life. Step back, and really evaluate yours this week. Is it worth changing? Because you are worth it.

Congrats to Karla, our contest winner! Thank you to everyone who submitted a “Hazel Grace” picture! They are all so beautiful. Our song of the week is So Many Details by Toro y Moi. Enjoy!

oxygencollagewinners

-haley.

Trapped; Pulmonary Hypertension Awareness Day.

Ahhhh, we meet again. I am alive, I don’t know if I’m well, but finally I’m making a brief post. The past few weeks have not been easy. Working fifty plus hours a week, running marketing for a local youth group, and bouncing back from surgery leaves little to no free time or sanity. Thank you to those who were actually patient with me. On top of that I’ve been wrapping up my Lantos project that I did with the Pulmonary Hypertension Association, and now I’m getting ready for conference! I’m definitely excited to meet some of y’all there.

Moving on! Today is national Pulmonary Hypertension Awareness Day. As y’all know, I want you wearing your Haley Ann shirt (if you have one) if not, wear purple! Take a picture and email me, and you could be featured on here or my facebook page. I’ll also be instagraming it up! You can find those two social media sites below.

facebook.com/phenomenalhaley

@haleyann92

About a month ago at a doctor’s appointment, I expressed some mental concern to my doctor. My anxiety level is high, and is definitely reflecting in my physical body because my emotions are so high-strung. His reply was very dignified, and he said, “I think you are very stressed, and very in tune with your body, so lets relax and not assume the worst.” His words actually  helped, except one small detail. I’m not in tune with my body at all. In fact, I feel as though I’m always fighting it. I want to be free; free from pills, needles, surgeries, check ups, oxygen, and its weird not to be able to do that. It’s weird that your soul is stuck…inside a defective body. I mean, really. For me, its been nothing but a disaster from day one of my existence. I’ve battled bladder, lung, heart, spinal, nerves, skin, and just about anything else. I know a lot of people out there feel this way too, and I’m definitely not special. Two weeks ago I was checked for skin cancer, and all I could think was, “Really? Haven’t I paid my dues?” At some point you just have to throw your hands up, and surrender.lungsrosesI’m not saying surrender to death by any means, but surrender to acceptance. Accept that this body is so fragile, and so beyond flawed despite its miraculous existence. The best thing you can do is step away, slow life down, and make time to care for not only your defective body, but your amazing self. YOU. Not just the body you are trapped in.Pulmonary Hypertension is a big, incurable, full-time disease. I don’t just suffer from it May 5th. I’m a year round, lifetime guaranteed customer of it. Take this one day to support those people who are caught in a trap.

-haley.

Song of the week! A much needed relaxing tune; So May It Secretly Begin by Pat Metheny

Good Business, Good Health.

This week has been…interesting. I finally stopped taking my pain, and nausea pills because they were making me feel crazy. In the meantime, my short of breath has gotten worse, and I’ve been wearing my oxygen! Good grief I hope things improve soon.

Anyways, on top of this dreary week, I wanted to bring up a subject that might be a thorn in some people’s paw. However, view it as me taking the thorn out of your paw, and helping you. It applies to everyone, and its a fine line we as patients walk everyday. But this is a great way to keep yourself in check.

Your disease is not a pity party theme.

There, I said it. We do feel as though we should gain respect from others, and they should notice what we go through. If they do, then they do. Its our job as awareness raisers to grab their attention, and show them, in a unique way, what we deal with, how sucky it is, and why they need to know. Thats just good business. Thats turning your disease into magic, and doing what you’re supposed to do with it, or what you feel called to do with it. Some people have PH, don’t care that they have it, and don’t want to make a fuss. I respect that. They don’t feel called to awareness raise. Then they are some who are making people want to slam the door in their face. What could we do that is turning people off? How could they not want to help a poor person who can’t pay astronomical medical bills, and who can hardly move fast, and doesn’t sleep, and– see? I’m doing it right there. It’s the wrong way to handle all of it.

Pulmonary Hypertension is awful. Pulmonary Hypertension is scary. It’s scary that from day-to-day you have to wonder whats happening inside your own body, and if it’ll make up its fickle mind to live. It’s scary to look so normal, and to feel so normal that the public doesn’t recognize your disease, and before you know it, you don’t either. Pulmonary Hypertension is a big nasty invisible monster, and our natural reaction is to get un-happy. But the fact is, we all have enough negativity in our life. Sure we can bitch, and moan, and post awful things, but people are drawn to positivity. End of story. They like seeing things that make them happy. They like seeing realistic things as well.

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So, what could I be doing wrong? You aren’t doing anything wrong. How could I be portraying my disease? Now, there’s a question. I can’t speak for anyone else, but I am drawn to strength. Pulling your boot straps up, putting your cannula in your nose, and trucking forward. I hate pity parties, any kind for that matter. I don’t care if you have the worst of the worst disease, and the worst of the worst situation. No one will be in attendance at a pity party, because quite frankly, its stupid. People see that, and they scroll right on. Portraying strength, showing strength when you feel like you have nothing else to give? People will read that. Portraying the reality, and how you’re are dealing with it somewhat positively? People will support that, support you, read that, love that, and anything else.

Dont portray Pulmonary Hypertension as this big sad monster inhibiting your life, and your depressed, and its awful, and your life sucks, and you can’t pay the bills…no one likes that. No one wants to support PH. Soon they tag PH with whiny in their mind. Show them facts, and show them strength while remembering, and not forgetting what you deal with. By doing this, you will in turn find your own strength, and move forward.

-haley.