Uncategorized

Start Giving Patients the Freedom to Heal.

Barely one month after being released from my hospital stay in February of 2017 someone messaged me that I was “doing it wrong.” Those words exactly, and that I needed to reflect more positivity. Resentful is an understatement that I felt within that moment, and every once in a while I still allow this intrusive message to continue to plague my thoughts. Yes, I have given it more power than I should, but the truth is that the message she sent actually does have a lot of power. In my weakest moments sometimes remembering that message is a deep cut.

You see, this hospital stay was an emergency admit, in the middle of peak tourism season in which I had just opened a store only a month prior, oh, and I sold flowers and Valentines Day was fourteen days away. Did you get all that? Exactly. I was trying to run a store almost four hours away, in severe heart failure, and I was in the ICU having a specialty team put a tube in my chest that would remain there forever. As far as I could see (which was through a filter of complete panic) my life was over. The doctors told me I was dying around the time I was finally doing something I had dreamed of, and it was interrupted in the most intense way. I was hospitalized eleven days; eleven days of constant beeping, cardiac alarms, palliative care, counseling, transplant doctors, and entire team staring at you and taking notes at least two times a day. That doesn’t include the insane pain, crying, nausea, and trauma. Eleven days I laid there barely making it out in time to immediately turn around and have everyone’s Valentine flowers done. I was extremely sick; I had lost around thirty pounds, was still throwing up around three in the morning every night, and being a new IV patient which includes learning about the machine as well as the medications attached to me. I was still extremely angry that I would get up to do something and would feel my pump slam down behind me, tugging my tubing. Or that showers now meant maneuvering tubing, and feeling the warm water hit a bunch of plastic taped to your chest. The reality was setting in that I was finally attached to a machine – my worst fear. My invisible disease was finally visible, and I was on the last leg of therapy – one step closer to organ transplantation. Okay, I’m done with the existential thoughts but you get the point.

I am just now comfortable with IV therapy…a full year and a half later. I finally mix seven cassettes to put in the fridge so I am changing my medication on time. I am finally taking care of my central line after losing my first. The road is just now gentle because that’s how long it took to accept my pump, work out all the technical kinks – and I am not alone. A lot of us PH’ers struggle with IV therapy, and years later it is common to still have a flood of emotion come over you causing you to be self-conscious about your disease, your body, and to be angry or sad. It is completely normal to suddenly “see” your pump for the first time in forever or to watch people swim and scream “WHY” inside your head. This will continue – not most days but it will happen at least one of those three hundred and sixty-five.

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The point is, when I received this message I was only one. month. out. Need I repeat myself but barely a month – that’s not even the amount of time you need to even recover from the new medication. Your entire body has been invaded and is changing among a very powerful life altering drug running through it twenty-four seven. Your entire world has been shaken by trauma, paranoia about your own death and future, and you open your messages to see “you’re doing it wrong.” This is nothing against this person – because she is a good person, but to this day those words are penetrating and wrong themselves. However, they awoke me to the reality that she speaks for the common voice and attitude in America – and that’s a damn problem.

We often are so bothered by things that we can’t comprehend so we blanket them. Patients ourselves do it some time before we truly develop an understanding of our disease. If you have something serious, invasive, life threatening, or mortality awareness in general about you – you are blanketed, unfollowed, or reminded that you need to be happier. Instead of people volunteering to visit you in the pits of hell, they decide to pretend it doesn’t exist. The pain, and trauma you lived through is really a happy story – and you should be thankful. YES, IT IS but it is NOT RIGHT NOW. The right thing at the wrong time is still the wrong thing. Things need to be felt, acknowledged, and sort through. In a year it is a happy story, and a transcendent story of personal growth and pain, but right now it is barely escaping with my life. It is not okay to rush any kind of healing. It is not okay to pretend someone’s pain doesn’t exist because it makes you uncomfortable. We should be uncomfortable quite often in life – that is if we want to keep moving forward. Things that count, helping other people, feeling all the feelings often comes from a driving force of being uncomfortable, and wanting to change that.

Being diagnosed incredibly young has been a process of learning about mental health, trauma, and where I fit into in this society. A society that is obsessed with perfection – we can’t deny it. We would gladly drop a thousand dollars at Hobby Lobby making our home amazing to take Pinterest pictures for our Instagrams to prove to everyone how perfect we are. We all do it – all of us deep down wants to be a Pinterest perfect woman. Being a physical reminder that things are quite imperfect, medical bills are piling, and coverage is being threatened can have you cast out of a lot of situations when it comes to fitting into society. It is extremely hard to find a place for yourself when your reality clashes with their ideals. More and more I hear about PH’ers horrifying experiences of being corrected, made fun of, not welcome, and overall just not supported.

I get that we are unrelatable in a lot of aspects. Our pets are our only children, we post pictures of mixing our medicine, and maybe our stories on Instagram consist of hospital stays with the caption being a slight mental breakdown. We are literally looking death in the mirror everyday and trying to fight and cope with it. In a country where we have been deemed “too expensive” for medical coverage, and a “burned down house” AKA hopeless cause – difficult is an understatement. We would just like a little time to vent and be heard just like you get to after spilling coffee down your front on your way to a meeting with screaming kids in the backseat – only for us maybe it’s congress messing with our healthcare rights or our copayment is $4,000 this month. We just want to vent to our friends then move on to shopping at target too.

You can think we are doing it wrong, you can be that outside perspective and see that we are suffering, and you can do two things; you can send us a message saying “you’re doing it wrong.” OR you can send a lunch invite, and over a great meal ask, “How are you doing? How are you coping? What hobbies do you do for yourself? What was it like? Wow, tell me more about that?” like a human would. It’s really that simple.

Please save your criticism for real problems in this world, like healthcare, racism and misogyny. Please save your lousy Facebook messages, and trade them in for connection. We just need time to heal, real connection, laughter, company and we want to be heard – we are tired of being silenced by America’s expectation of normal.

-haley.

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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

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.

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. šŸ˜‰

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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.

Life With PH, PH Health

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. šŸ™‚

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.

Life With PH, Personal Life, PH Health

Four Years.

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

seventeen2Two weeks pre-diagnosis.

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

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

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

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Four years strong.

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

-haley.

Life With PH, Personal Life

Adrift.

Coming back from Indianapolis has been rough to say the least. Not because I’m tired (I definitely am), not because my symptoms have become gradually worse, and not because we don’t have some of the same amazing places…but it kind of put me in perspective. In Indy, I felt like I had reached exactly a place I belonged. People knew who I was, knew my work, credited my work, and I felt like I was doing something right. Now I’m back here where I explain myself, and yet I’m still forced to find a college degree to find some sort of “work” that will pay the bills.

What am I doing? I mean really. I work almost thirty hours a week with maybe a couple of days off from the place that I’m just existing at. Its money, and that’s it. Is that going to be my life? Get up, drag myself to some regular job, where I work late hours doing “whatever” type stuff, then I come home exhausted to try to power through my real work? My real life’s passions? Does that not sound exhausting to you?

Everyone always asks me what I’m doing, what school I’m going to, and I really have no idea how to answer. I love to teach, I hate education. I want teaching to be organic, and in this world its the furthest thing from that. Screw working at a school, because its like picking at a scab. I cant do it. I would love to write, but where? How? Who would read it? How would I get paid? Dont forget, I need health insurance! I would love to own my own business, but its an infinitive circle of the same questions….

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I really have no idea which way I am going. I am just standing in a spot that has so many different, weird, and confusing paths that I just feel like sitting down for a while. The moment I do, I’ll realize that I should’ve done something a long time ago, and I’ll watch all these people I knew with their careers, kids, houses, marriages, and here I am…just hoping for direction and medical insurance. I’m really not throwing a pity party. I’m just really lost.

IĀ  need help y’all. If you have any words of wisdom, feel free to comment. The end of my rope isn’t even existent anymore.

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Song of the Week is the beautiful Without Words from the TFiOS soundtrack. Its beautiful, and lost is exactly how Augustus and Hazel felt when this song played. You can purchase Just Breathe shirts still!!!! Personally email me to check your size. There may be more items added to the shop section soon!

Life With PH, Personal Life, PH Fashion, PH Health

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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