Stay Gold.

Don’t meet others expectations for you. Don’t expect anyone’s understanding towards your suffering, and do not apologize for your pain. Do set your own goals, and meet your own expectations for yourself despite what society wants for “you.” Do feel your pain, acknowledge it, and do not hide your suffering. Stay Gold to what you are, what you feel, and what you do. Stay Gold to what you need, and what you want. Stay Gold to all those little things that appear shattered and broken in your mind, but so delicately and warmly reflect you.

Stay Gold to you.

-haley.

staygoldlungs2

Advertisements

Awareness IS Power.

I guess you could call me a realistic type of person; for those of us who say that we often border the “negative” side to life. We are hushed, scolded, and covered up while others keep talking about their blessed life, and glare at humans who have an outcry. That’s fine, and all well for you, but my voice and my passion does not exist without a drive…and what drives me are the faults I have been born into. It’s okay to say that. I have a very faulty life. What makes it okay to say that? Well, it’s very hard to keep endless anger and pain locked inside of yourself. My organs are heavy from a daily battle against themselves, and quite frankly, I refuse to let them swim in a secret pain so that others may continuously live a life of comfort.

fullsizerender6

The world is in a very weird, and groundbreaking place – can we all agree on that? I think because of the power of social media, life experiences, and just plain intelligence that people (and definitely our kids) are coming in tune with an “awareness.” They get political issues, social issues, climate issues, personal issues, drug issues, racial issues…all of the ugliness delivered to their LED screens, or experience this in their daily life. I feel that America’s new generations are creating a voice for themselves on racial issues, political issues, women’s rights, and yes even healthcare issues because they want to see change. All of the not-so-comforting news that the world has tried to lock away in some secret closet is finally exploding because of the want for change, and awareness. While having your head in the sand might sound lovely, appreciating and trying to help others pain is more rewarding. With awareness I feel it creates intelligent, cultured people who will connect to others easily and form a genuine respect for another persons’ life. A fabulous example of this? Humans of New York. Hearing the struggles behind ordinary faces in turn creates a sea of emotion in us, and a connection to our fellow beings.

Processed with VSCO with x1 preset

I will not hide my anger, or pain for your comfort. Yes, I will try to be positive while being realistic. I want America to see what such young/ordinary looking people with an invisible illness do daily just to breathe. I want everyone to open their eyes, and mind to what a person really feels with a terminal illness – not just what books and movies let you think. I want the world to see how much companies from movie industries to insurance companies are profiting off of sick beings – including children. I want people to be aware.

Awareness is knowledge. Awareness is power. Awareness is respect. Awareness can change anything.

-haley.

 

Hear what I’m currently jamming to under “song of the week” 🙂

Close the Fucking Curtain.

Yes, I tend to be a closed off person. And yes, most of the time I can’t be found because I’m tucked away with Rocco. I can only handle so much person to person time, and long for the moments I come home to only a little black cat. With that being said, I feel like it’s somewhat a great time to be alive (eeehhh?!) for introverts because thanks to companies like Buzzfeed, we can now scroll through posts that point out the hilarity in our non social-ness making us feel just a tad bit better about our habits.

Processed with VSCO with p5 preset

While I’ve always enjoyed my introverted side, I at one point had no problem being an extrovert. I was on stage in pageants (yikes) competed all over the place in dance, and performed many many recitals. The stage was actually quite comfortable. However, this whole disease process has yet again altered my mind and spirit in ways that I didn’t know it could reach.

I have a problem expressing myself because I feel like I have been passed around (quite literally) for many medical professionals, counselors, advocates, and doctors to see. My life has been summed up into “patient info”, test results, numbers, and expected outcomes. Anyone who ever wanted to know me could sit in on meetings that they have after doctors speak with me, and try to discuss with their team what my next life decision could/should be.

On top of my medical life story, I have doctors in my uterus watching carefully to make sure I don’t pro-create. God forbid I act humanly, one slip up, and it’s over. It gets better this time – not only are my doctors going to have to hear about this, but America too! We have all these lovelies protesting at abortion clinics calling people a whore, slut, or sinner. One slip up, and could I even have access to a safe abortion in America anymore?

Besides my medical background, and uterus issues, I also have people shaving my crotch before surgeries just in case they need access to my femoral artery. I have people moving my breasts out-of-the-way to stick EKG cords all over my body so they know exactly what’s happening inside of me too. I have pharmacies demanding pregnancy tests (which is a federal law) before I can get a refill on my new medication. When you add-on all the questions from innocent bystanders all I am left with at this point is the thought of escape. The thought of just not knowing anyone, or anyone knowing me for just one minute.

I feel exposed. I feel naked. I feel like an experiment. I feel like I have no human rights sometimes, and that I am just a body that everyone keeps poking at. So, please excuse me when I don’t update. Please don’t mind when I’m quiet, when I don’t answer, or yes, when I close my measly fucking curtain door.

-haley.

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.

surgery

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.

My Adcirca “Review.”

After giving much in-depth explaining on what PH is, and how we find it, I thought I would now talk about my treatment. Pulmonary Hypertension is usually first treated by a very generic version of Viagra called Revatio if Doctors think it’s even a possibility. A lot of patients actually stop reacting to it very quickly, so most doctors just skip over the whole “Revatio” option to begin with. That brings us to more high-tech, crazy strong vasodilators and other medications to keep the blood vessels dilated so we can breathe. If that doesn’t work, they might try an inhalable solution, or finally be put on a IV Remodulin Pump that is comparable to a diabetic’s pump. If the Remodulin doesn’t change things then heart and lung transplant options are discussed.

So, because my body miraculously reacted to medication, I don’t know much about experiences with the other treatments. Therefore, I would love to give a little medication “review” on what my treatment does for me.

pillreview

I was put on Adcirca and Norvasc almost six months after my diagnosis. We tried Revatio at first, which failed, and then they discovered I reacted to the others beautifully. These are very high-powered vasodilators allowing me to breathe, but causing all sorts of other issues throughout the body. My first year on Adcirca and Norvasc was absolute hell. The swelling was the first to hit. I began to notice that my feet would ache, and feel “tight.” When I looked down I didn’t even recognize my feet at the start of this swelling “adventure.” Over the next couple of months it just “grew” to be worse. My feet would swell around my shoes only permitting me to wear these open type of moccasins. The pitting edema was so bad that you could push into my feet like memory foam, and the fingerprint would remain. Not only was this extremely ugly (for an eighteen year old I thought it was the end of the world), but this was very painful. Finally, like magic, I woke up with skinny ankles, and the swelling initiation disappeared.

…Until the warm red patches started. It started in my knee’s with an extremely hot sensation. When I took my pants off, I noticed that I had a straight red line right above my knee’s, and continued right below them. It literally look like someone took a red marker to my legs, and on top of that I, myself, wasn’t warm, but my knee’s were probably a thousand degrees. I would seriously make my co-workers feel them just to make sure I wasn’t going insane. From my knees, the red sensation moved to the back of my arms, and my face which is now where it currently sits from time to time. What’s so strange is that I am physically cold, and want to cover up, but my skin is on fire. If I’m in the sun, or if my body temperature elevates, then the red patches strike! On top of the red insanity – I already have rosacea in my face. When you put this Adcirca rash over it, I look INSANE. This is why my makeup is so sacred, and is like an art to me. I have a lot of uncomfortable, and not so cute things to cover up due to medication, my natural face, and skin damage.

adcircaface2adcircaface

For those of you suffering from “Adcirca face” I recommend a green concealer that eliminates redness! LA Girl Pro Conceal has been my absolute favorite to use so far, and yes, it’s very affordable at only $5. Use a sponge, or a brush to even the green out over the red area and you will notice how it “tones” it down. No, this isn’t a magic wand so you will still have some red. On a bad day, I recommend using it underneath foundation, and again over the foundation if need be.

adcircaface3

On top of the redness, Adcirca, for me, causes a lot of pain. If I ever skip a dose, then start again it’s almost like having the flu. Adcirca dilates all the blood vessels in the body – not just the lungs (kind of like how chemo kills everything – not just the cancer) therefore the skin turns red, and the vessels in even your eyes, and head are dilated too. When that happens an extreme headache follows, and for me body aches and chills. Also, my eye doctor told me that Adcirca has pretty much destroyed my vision. Every year I go we have to check on my eye pressures, and anyone around me knows I can’t see shit.

Overall, Adcirca does the job, and as long as I’m consistent the troubles will be few depending on how it wants to act up. I however wish we could find something that could cooperate with our bodies just a little more, and maybe just maybe an actual cure. 😉 Have a lovely Sunday! Check out the “Song of the Week” to flashback to a very uplifting tune, and also check out the Facebook for the NEW T-SHIRTS!!

-haley.

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.

Processed with VSCOcam with b1 preset

Processed with VSCOcam with b1 preset

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.

Its the Kind of Tired Sleep Can’t Fix.

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

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

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

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

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

battle

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

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

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

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

-haley.

Restore the Old; Heal the Broken.

his·to·ry

the study of past events, particularly in human affairs.

Growing up, I was the child that spent hours at my grandparents asking to look at more photos, to try on dresses, and my questions were endless. Looking back, that’s probably one of the earliest signs of a personality trait that has never faded away, and it intensified into a passion of mine. I am not a huge history buff, and I can get sidetracked easily, but I do believe in the importance of studying our past. There is so much to learn, and something special about places, pictures, and objects that have captured yet withstood time. I cannot explain the magic of visiting something older than most people around you, and I do believe there is a certain spirit attached to places like so.

_MG_8218

My lovely little town is famous for tearing vintage places down. Seriously though, all I have are beautiful yet aged photos of what once was, what they turned into a parking lot, or what buildings have rotted away and become empty decaying shells of interesting stories that once filled the paint chipped rooms. My heart sinks into my stomach to see such photos, and while yes I’m happy to envision the history that once existed in my town, I possess such an overwhelming sense of sadness that we did not appreciate such beautiful, and what looked like entertaining places. We have lost a majority of personality and activities to superstores, fast food chains, and parking lots. Call me crazy, but one day if we were to continue on that path, every town would look the same. No thanks. There is of an utmost importance in showing youth how to appreciate such things, or to show them a history that started this town, not to mention envelope the word unique.

summit

Ever since my dad showed me Summit Elementary, a school that shut its doors in 1972 because of integration, I was beyond intrigued. I thought it was beautiful, and such a waste of an incredible architectural building to just be sitting there. Seriously? Another building that this town claims to just sit and rot? The answer was yes; for forty-two years. The paint peeled, windows were broken, cracks shuttered down the stucco, and empty desks were thrown into classrooms that were once prepared for the next coming years. Spray paint covers one end of a hall making it look like the set of American Horror Story, and here I stood in random rooms trying to figure out what outdated equipment was used for. My body was encompassed by a place that had so many stories, held so much human life, and was such a pivotal piece to local history. After years of taking pictures on the outside (one that this blog was used to seeing) I finally stood among the inside overwhelmed by the still, yet sadness that my town could do such a thing. When will we start pouring money into restoring the old rather than continuously bringing in new that we can hardly keep up with? Why not restore such amazing pieces of history rather than running right over them?

summitcollage

Well this downward article actually has a happy ending. As stated before, Summit decayed for forty-two years, and endured a lot of local abuse. Finally, someone saw a spark of hope, acted on it and turned it into Summit Baptist Church. While I can say I’m not a church-type person, I jumped for joy that we were putting life back into history. Someone finally saw this building as special, not just a “ghost hunt.” I pulled up to open doors, and didn’t hold back for a second before rushing inside to an old school that has itched my mind for years. Greeted by a friend, we began our walk around the building. An old stage, chipped floors, tin covered windows, and smiling pastors that overlooked all the damage. Acknowledging the ridiculous amount of work, and money for the work that has to be done, I did not feel a bit disappointment anymore. I can’t put into words what its like to stand in the middle of what feels like a war-zone, yet to be completely uplifted. The personalities, and determination as well as the focus of what they are doing to give life to this building left me feeling at peace. My itch had finally been scratched.

No, I’m not a church person, but I have never felt a greater sense of my creator in this place. From the people I met that didn’t care about the ring hanging out of my nose that I forgot to take out (oops), inviting me to the lunch that they prepared there, and the amazing yet earth shattering conversations that took place within those walls, I was drawn there for a reason; the type of reasons that leave you with hairs standing on the back of your neck. I believe there is nothing more truly artistic than to love people, and I felt it radiating within the building. I just want to congratulate, and send loving yet home-warming wishes to the Pastors that have made this their project, congregation, and believe in restoring this history. It truly is a form of art. May the creator himself bless y’all in your future endeavors, and challenges.

-haley.

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.

witch

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.

Exit Here.

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

cornfield2

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

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

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

-haley.

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