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I’m That Difficult Patient.

Something very commonly overlooked when living with Pulmonary Hypertension is the meaning of “progression.” Or at least when it came to me, my brain has a tendency to forget this huge “one up” this rare disease has on us: progressive…it could always get worse.

When I finally became somewhat comfortable with my shitty lungs, and started writing about them I also adapted a very invincible type of mindset. I had my disease, but I felt like I also had control, something that we don’t have very often with Pulmonary Hypertension festering in our lungs. I ultimately had control over how long I wanted to live, IF I wanted to take my meds, and where exactly this disease could take me. It was great to be feeling “healthy”, to be positive, and to ride out the illusion that I somehow was in control of two of the most important organs in my body that already had a reputation for throwing us all curve-balls.

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My newest specialist is someone who in my eyes is all about preventative care. Her biggest emphasis is something that I, and all my past doctors have repeatedly not watched; the fact that Pulmonary Hypertension is a progressive disease, and it could get worse. I, on the other hand am all about the “now”, and gettin’ it while you can as Janis would say. I’ve moved into a rougher environment (which I don’t, and will never regret!), blown off weeks worth of medications, done things that have negatively affected my body for a temporary high, and basically thought I could keep tucking my disease away for a later time. That’s what happens when you are technically still not accepting your disease – hint hint. After taking the guidwires out, shutting down the fluoroscopy machines, my new specialist informed me that it was a great thing we did a new cath after almost four years. My pressures have not changed after all this time, and my cardiac failure has gotten intensely worse. I may feel “alright” right now, but a year from now could be questionable. Which has now led us to three new medications that are going to feel very “intense” for a while until my body starts responding. Here I sit with my morning cup deciphering through my “now” type thinking versus a future that I’m not sure I want to even keep pushing for. Is it worth it? Or is it just doctors leading us on like a cat chasing a string; am I going to be paying a ridiculous amount of money, and living in pain to only be here another ten years?

Overall, it’s a shock once again to the system. It feels like we’ve re-winded back to when I was being told for the very first time that my heart, and lungs both were a problem. After years of writing about PH, I started running from it. I felt suffocated by what I was creating, and felt the need to tuck it away quietly. It has finally come back to find me, and it’s earth shattering, hopeless, and just unfair all over again.

Despite writing, contests, shirts, and everything else I have come to discover that never have I ever been fully okay with my disease, but will we ever really be?

New song of the week finallyyyyy.

-haley.

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Textbook Breakdown Part 2: Diagnosis.

So, yesterday we covered what Pulmonary Hypertension is in itself. Now today we’re moving onto how we find PH, and who has it. If you missed yesterdays post, then click here to share or read it.

So, since Pulmonary Hypertension is happening in the lungs itself affecting the heart and internal organs, it’s not affecting much of what happens on the outside of this person. In fact, most Pulmonary Hypertension patients are young; kids, babies, teenagers, young adults, you name it. Anyone could be born with Pulmonary Hypertension. Basically, Pulmonary Hypertension hides behind a mask of youth, or “normal.”

Someone may be born with Pulmonary Hypertension, and take years to finally show it. They could be like me, attending public school, participating in physical activities, then one day feel a very unusual and horrid pain all over, and lose consciousness. Most people would either ignore it, or think they had an asthma attack. Even if this young patient was attended to by medical care in a hospital, or doctors office they would never do an EKG (checking heart rhythms) an oxygen test, or chest x-ray…why? Because why in the world would we check a very young person’s heart when they just got tired, and collapsed? When people ask why we collapsed, we tend to only be able to answer that we couldn’t breathe. People generalize those symptoms down into something like asthma. PH doesn’t have a disease appearance because it’s all internal therefore just about every person does not take the person’s symptoms seriously. A PH patient begins to think they might be crazy, are out of shape, and need to learn to keep up. Maybe they’re told that they have an anxiety disorder, or something. Basically, it is very very very rare for anyone to listen to someone suffering from PH because they can’t “see it.”

So what happens after being ignored for so long? The pressure in the heart, and lungs begins to mount and the patient begins to get worse. Not being able to walk, fainting with any physical exertion, and the downfall of their quality of life. Yes, this will even happen to kids. Pulmonary Hypertension patients can die at any time for a variety of things; blood clots, an arteries bursting, their heart rhythm becoming too chaotic, and finally their heart just stopping. If a PH patient is not taken seriously by medical professionals in time, their chances of dying increase every day.

Echo

So what happens when a patient is actually taken seriously, and what does it take for a doctor to find PH? An EKG, and a simple oxygen saturation test should at least show some concern with a weird rhythm presenting a conduction delay, or showing the right side of the heart is working too hard. The oxygen levels should also be low. A chest x-ray, or echo should show that the heart is over sized which a normal physician would immediately want a heart catheterization done. A heart catheterization is where they insert a catheter in the femoral artery (or a vein in the neck) and move it all the way into the heart. From there using fluoroscopy (a moving xray) they can view the actual heart itself to make sure it was formed right. Then they can measure the pressures, and actually see how the heart is pumping so they get an idea of what is wrong. If the heart is formed normally, but is still working so hard to the point of failure then that tells the doctor that the pressure is coming from the lungs…Pulmonary Hypertension.

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At this point the doctor would finish the surgery, and would contact the closest Pulmonary Hypertension Specialist, or Pulmonologist to start treating the patient immediately. Depending on how high pressures are, and what shape the patient’s organs are in, the doctor would now notify the family of the terminal diagnosis, and then the patient with a very grim life expectancy.

What now? Tomorrow we will dive into treatment.

-haley.

Uncategorized

War, and Ebola, and Evil, Oh My!

Oh, this is a season known for such beauty, and in contrast, the fright. It’s not uncommon to be terrorized this time of year, and most people seek out those experiences. However, when the terror leaks into the light and confuses itself with reality, we reach a whole new level of terror that is almost unnerving.

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All I see on my Facebook, and hear around the office is somewhere along the lines of, “the teacher got arrested, this hurricane hit, blood moons, and ebola.” What about that is pleasing? What about that makes my heart happy? “It’s important to be involved in current events.” Except no, it’s really not, not anymore. I think its more important to track history, and be consistent with your learning and perception. But why sit in front of a screen that delivers the most awful things right into your mind? And people ask me why I don’t watch TV…

A few weeks ago, I got super worked up about the end of the world, the blood moons, ebola and just about everything else the news thought they needed to grace my news feed with. Thanks, Facebook peeps. You officially got into my head, and for a whole week I thought endlessly about how fucked up the world is. I barely slept (I was afraid the world might end in my sleep) and I couldn’t think straight. Some people call me a person affected with severe anxiety (which is true), but today when a parent called afraid her child might have ebola, who hasn’t been in contact with anyone, or any country of the sort, it seems I’m not the only one. We share articles on Facebook repeatedly over awful, negative things that are supposedly news and it’s really just self destructive. There is a difference in awareness raising (for example: Blackfish) versus ridiculous negativity. After hours, or days of reading, you evolve to a state of living in fear.

End it, and accept there is nothing you can do. Literally, there is nothing. That blood moon is going to happen whether you got a picture or not, and that group of terrorists is going to kill someone next. That disease will infect who comes in contact with it, and there is literally nothing you can do. Its horrible sounding I know, but its the most freeing thing you will hear despite what you keep reading on news channels, and Facebook. What is the point of bottling up every thought, and action you want to have simply because the world might bite you on the ass? Its scary, but there is no point in living in fear. I guess if I get ebola (which I refuse to capitalize because it’s so horrible) but until or if that ever happens, I’m doing what I can to protect myself and I’m living life without fear. I can’t walk around all day with a rock in my stomach. You should take precautions but fear is never, and should never be one of them, despite what the media wants you to think.

Seriously, stop sprinkling that shit everywhere, and instead spread happiness, kindness, positivity because the world needs a whole lot of it at this point. So, I hope you lovelies enjoy your Halloween week getting scared from awesome things like The Shining, or freaky costumes versus things you have no control over. Enjoy, and live your life.

-haley.

Life With PH, Personal Life

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.

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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.

Life With PH, Personal Life

Human Hurricanes.

My life is so full of physical limitations, but I still become that person where if you tell me I cant do it, I will. But sometimes when I find myself breathing harder, or losing consciousness (oops), I realize that maybe working my physical body is not my calling. While looking at someone who is physically appealing (those fabulous abs, and arms) it shows this discipline and strength that radiates off of them. But what about when you choose to constantly work on or workout your soul, and heart? Yea…what? A renovation, or working on your soul is probably one of the hardest things a person can do. To change themselves internally, to change everything they think they’ve ever known, or to work on something that is not tangible. It sounds insane, and most of the time you feel insane when you realize that maybe something things in this area will be, um, hard to reconsider. Understatement.

You see, for a long time I really didn’t care about people. I floated through high school on a very unhappy cloud (I have no regrets) and didn’t give two damns. I’ve always cared to an extent, but not once did I exercise a bit of patience with anyone or myself. Working with young children was a turning point in my life. I was working with tiny, and happy souls, some more than others, and they felt everything so deeply. They were brand new, empty of judgement, and they hadn’t reached this adult stage yet; they were not broken. I saw the humanity in their eyes as I felt their tiny arms wrap around my knees. Everyone was here at one point. We are still human, and despite how much we choose to cover it, we are so worth loving. Extending past my Pre-K and first grade experiences, and onto fifth grade, these tiny humans were hormonal devils. They were going to show you how insane, mouthy, experimental and defiant they pretended to be before they were ever funny, or told you how much they cared about you. Despite the fact they were leaving me for middle school, I still saw them as a version of my pre-k kiddo’s with a few bumps, and scrapes society left upon them. But the days they buried their faces into my shoulders crying, screamed my name down the hall because they were excited to see me, or felt the need to deliver me Valentine presents were worth the awful human hurricanes from time to time. But, I believe there is a hidden beauty in each person, and I so deeply want to find it, and teach them how to radiate it. Seriously though, it’s there in everyone.

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Overall, that job worked me internally. I might not have abs, but my heart has been strengthened more than I thought possible. I felt things beyond deeply, my stomach fell into itself sometimes, and you never knew when you had to step into an empty classroom to cry for a second after handling a situation that blindsided you. That job made me see the humanity in this society (sometimes the inhumanity as well) and showed me that every person is so worth loving. It taught me a lot about my disease, my life, and how much I choose to love others. People will often say, “I just don’t like that person” , “They are so difficult to deal with” and I find myself loving that person the most. Why? As I’ve heard many times “the people who need the most love will ask for it in the most unloving ways.” My response? Everyone is So Worth Loving.

Check out the beautiful company that I am beyond a fan of, So Worth Loving, and their blog post about my story. I hope they show you the worth that exists in you, and other people.

Dedicated to all my wonderful students. Even though I was the teacher, believe it or not, you taught me too.

-haley.

Instagram @haleyann92

Personal Life

Happy October!

Well hello loves, and Happy October if I haven’t already told you so! This is probably one of my favorite months not only because it’s an exciting change in the year, but sooooo many fantastic things happen in October. Not only can I pick up a whole bag of snickers (and use trick or treat as an excuse –psh, that’s my candy), Halloween is everywhere, Indigenous Peoples Day is celebrated (previously known as Columbus Day), but most people have no idea that it is also Black Cat Awareness Month.

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I live my life as an advocate for things that need my love, support and attention. One of my best friends the other night told me that I am always in search for something deeper; a deeper meaning. Thats my life. Searching deeper, digging deeper, and getting more invested. Sometimes I get so invested that I have to stop because it becomes my life, and I truly don’t mind but my lungs do. Most people would laugh at the fact that I am supporting Black Cat Awareness Month, and writing about it, but why not? Even though this is two thousand and fourteen, I feel we are regressing in our actions. We force our beliefs onto others, women still aren’t paid the same wages, we criticize those who feel the need to abort a pregnancy they don’t want because of our beliefs being pushed onto them, and people still look at black cats as if this is Salem, Massachusetts, 1692. Really people?

I grew up with two black cats, Einstein Albert and Fantasia Monaloha, and after my diagnosis found my Rocco Ricardo. I still have all three, and never looked at just their fur. In fact, I thought they were so beautiful because every color of collar looked fantastic on them! But seriously though, since I was a small child I never understood the persecution of the black cat; they were just so beautiful in my eyes. Maybe you’ve joked about it before, but do you realize that black cats are the targets of hate crimes? Some shelters wont even allow them to be adopted in October for this reason. They are the most unlikely to be adopted because of these “bad luck” bullshit beliefs.

blackcatawareness

Martin Luther King was once quoted saying, “Never be afraid to do whats right, especially if the well-being of a person or animal is a stake. Society’s punishments are small compared to the wounds we inflict on our soul when we look the other way.”

Stop living in the past. We are continuously moving into the future, and we should constantly be re-evaluating our outlook on life, on certain situations. A black cat is just another part of the creator’s beautiful gift to people. Love these animals, love other people, love you.

BLACK CAT AWARENESS MONTH.

Spread the word.

-haley.

Song of the week is, “Kick, Push” by Lupe Fiasco. Its what I need to get through this week! Enjoy!

Life With PH, Personal Life, PH Health

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.

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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.

Uncategorized

A Sad Little Fantasy.

A couple of years ago I saw a picture on Pinterest (are we shocked) that said, “What messes us most up in life is the picture in our head of how we think it is supposed to be.” That quote in itself about summed up about the age of fourteen through twenty for me. Despite the happiness, and hardworking front I can put on, there will always be an impending sadness that I am continuously attempting to work through.

I think a couple of years ago when I realized I could let go of some very damaging things, mentally I was free; for a little while, that is. You see, despite how they act, or what they say I know people think I’m crazy because of how ridiculous I can be. I choose to be the person that laughs the loudest, has the outrageous stories, the most ridiculous twist and turns, and I also choose to be stupidly positive sometimes. For a very long time those “stories” and “twist and turns” were nightmares, and very long nights of convincing myself not to just end things. I choose to laugh because at this point, it’s all I have left, and why not be the butt of everyone’s jokes? Why not just love people instead of yell, or get enraged? I don’t see the point anymore. I chose to toss that expected picture of life out a long time ago, and create my own.

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For time to time I focus on just reality, and it spills out onto my blog in angry protests and I have to pop a Xanax. I can read through your Facebook posts about ISIS, how downhill kids are these days, and all these wonderful people dying of the disease that I just happen to have, and I find myself in a corner of fury. I don’t find that fascinating at all. So I’ve built my own world full of writing, Nat King Cole, That 70s Show, Augustus Waters, I Dream of Jeannie, Rocco Ricardo, wonderful art, and I am happy. I know it’s an illusion. My writing is not famous, Nat King Cole is dead, no one knows what I Dream of Jeannie is anymore, and there is no Augustus Waters, only men who are weak-minded, and cats are better anyways. There will always be an impending sadness that my little haven isn’t reality; but within this fantasy I feel safe. It’s the only way I can achieve happiness these days.

I’m tired of trying to control reality because it’s just not going to happen. Are you doing that? Are you spending more time focusing on what you can’t control versus what you could be doing right? Love other people, that is something that can be done. Being that one light in a person’s life; that can be done. Focusing on what makes you happy rather than posting on what is going wrong; try it.

Life is not supposed to go any particular way, sometimes it ends before you get to finish it. Stop letting the picture mess up your creation.

-haley.

P.S. Song of the Week is still Rain Song by Led Zeppelin. I just cant get over it yet.

Life With PH

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.”  –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

Personal Life

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.