Look Beyond the Medication.

The other day I couldn’t help but see a negative comment from a struggling person that is dealing with PH in their life, or someone else’s. It read along the lines of, “PH already has you, and it will kill you” and yada yada yada. Does anyone think that this person kinda sounds like Peter Van Houten from Fault? Yea…

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Besides just being caught up in our bodies that fail us, we are caught up in medicine. A medical way of thinking, being by the book, and paying attention to statistics. We get sooo caught up in our outward images, and what we are being told all the time that we never strengthen ourselves inside out. We’re so used to adopting this “weak” lifestyle and image. People ask me why I’m at peace, or why I have a good attitude about seventy-five percent of the time, and it’s because I preach preach preach on mind over matter, and on spirituality. I’m not perfect, and there are definitely sucky days. Overall the spirit will always dominate the body. Our body will sometimes get its way, but that doesn’t mean we have to be miserable.

The more I immerse myself in my native studies, the more I discover exactly how amazing it is. Native American culture is good about stepping back, and appreciating things a lot of people dont…like the earth for example. 😉 But seriously, it’s awesome. When digging the other day I happened across this man comparing Western medicine with Native Spirituality in which he said The idea of wholeness is paramount in understanding Native-American perception of disability. Unlike many cultures that shun people with disabilities, Native Americans honor and respect them. They believe that a person weak in body is often blessed by the Creator as being especially strong in mind and spirit. By reducing our emphasis on the physical, which promotes our view of separation from our fellow man and all that is, a greater sense of connection with the whole is created, the ultimate source of strength.” -Laurance Johnston

Honor Song good sir!!!! Yes yes yes. The differences in how people view themselves, and other people greatly affects their life. How people choose to live, how to seek and find their true selves, their gifts, and cleansing their spirit greatly will affect their life. Another great example of how we are taught to think versus what we should be doing is proven by Kenneth Bear Hawk Cohen; Western Medicine – “How can I destroy my disease?” Native American Medicine – “What can the disease teach the patient? Is there a message or story in the disease?”

jingleFun Fact: The Jingle Dress (as pictured above) is a healing dress. It originates from the Ojibwe nation in which a girl was sick. Her father prayed to the Creator, offering tobacco, and seeking a vision. That night he dreamed of a dress with rolled up tobacco snuff lids, and a certain dance. He constructed the dress for his daughter, made her dance, and she recovered. To this day the Jingle is a competitive dance in Pow-Wows, and a lot of women will dance for those who need to be healed who still follow their traditions associated with the dress. Love love love it, as it is a powerful dance.

I’m not saying you need to start wearing feathers, and attending Pow-Wows (actually you should) but maybe this will give you a different perception, and outlook on your health. Summing someone up into a disease that we define as “it has you, and will kill you” is such an insult to our Creator. He made such beautiful things, including you; like you. Not just your body, but you.

-haley.

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Medicated Lungs and a Healing Heart.

There are two versions of Haley Ann; Calm, forgiving and accepting Haley, or as I like to call the other side of myself, Hurricane Haley. When my insurance company notified me that my copay for the medication that lets me keep breathing is two thousand and three hundred dollars for a ninety day supply, I really thought we were going to have to rebuild the house; Hurricane Haley was an understatement. At this point, I really shouldn’t be shocked. Healthcare is an over rated, over priced and screwed system that is basically unrealistic, but they know they can nail us anyways because healthcare is necessary. If you have insurance, don’t have insurance, Medicaid, whatever…we’re fucked. Lets just admit it.

Asking a twenty-two year old to pay two grand for a medication makes me laugh. Seriously, lets just start designing my headstone now because I refuse to pay that much. Yea, these companies are brilliant for saving my life, they deserve their part, but I also intend to live my life. Not just to devote my life to my medication that also gives me red patches, swelling, and migraines. I have dreams, like living in New Mexico, buying a new car, moving out, and maybe just maybe attaining a college education. But nah, I’ll just devote my life to my medication…no. Yea, I’m mad that the medication I actually have to have is that expensive, and most people were surprised to find out that if I didn’t find some way to pay for it then I didn’t care. “But Haley, this will heal you!” Yea…it makes my lungs feel better; but Adcirca will never heal me, or make me happy.

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As I have sported on my shirt many many many times before, and repeated myself, it’s an act of Mind Over Matter. Despite how many times you want to deny that, its true. Your medication can only go so far, because scientifically it’s programmed to do such. It doesn’t care about your mood that day, your goals, your loves, or dreams. Its pumped into your body, and does its job until another dosage is necessary. My medication improved my life, and yea kinda saved my life, but I had to save my own life with a different kind of healing. My medication was doing the best job it possibly could, and I still wanted to die for a long time, so I refused to take it. See? Your mind is in control. Patients; it really is all in your head. You are not crazy, your disease is not some “illusion” but if you cannot keep yourself emotionally and mentally happy, and at peace your body will not follow. It has to work together.

I got mad about my two thousand dollar copay, and for a moment actually worried. But I know that I heal myself in a completely different way. I know that dancing for my creator, thanking him for the food he provided, the new life, the four winds (ridiculous Texas winds) that he gave us to maintain all four seasons, and the beautiful animals and nature is healing to me. I know he listens to not only the drumming, and the rattling on the dance floor, but my prayers as well thanking him for allowing me to physically do these dances with people I love despite the aching in my body I feel towards the end. Yes, my body hurts, my heart works harder than it should, and my lungs want to cave in; but I am thrilled. I know you all have different ways of feeling spiritually satisfied, and alive; well then act on it, and actually live within it. I am healed spiritually, and will depend on my medication to do its part; but my soul will lead the way.

-haley.

@haleyann92

Song of the Week is Thirteen by Big Star. My heart just needs to process it. Check it out under the tab!

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.

Too Much Pressure.

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

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

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

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

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

-haley.

Four Years.

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

seventeen2Two weeks pre-diagnosis.

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

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

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

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Four years strong.

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

-haley.

You Should Be Scared.

Oh, yes. Haley had to blog on it, because I think it heavily affects us PH’ers. If you’ve seen my posts on Facebook, I’m sure you are just all sorts of annoyed right now. Please, be annoyed, but seeing as how I’m someone who is alive because of medication that is used for erectile dysfunction, and I just so happen to have a uterus and ovaries (which apparently I have no say over) I feel strongly on this subject. My blog, my views. If you can’t handle, then don’t read it. You’ve been warned.

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Now you’re thinking, what in the world does Viagra medication have to do with birth control? Lets start from the beginning. All the way back religious freedom. For those of you who don’t know, Hobby Lobby just won its case in Supreme Court saying that because they are a “Christian” based company, that they will no longer cover for any of their female worker’s birth control. This is shocking to me, and disgusting on so many levels. Lets start with the basics and build from there. I grew up in an era where “Worth the Wait” came to your classrooms and preached to you on not getting pregnant, and if you chose to be sexually active then to be protected. They even told us little eighth graders and freshman where to get free birth control. I was raised in an era that wanted us all to have birth control to prevent making a stupid mistake that would not only affect us, but this child, our families, and so forth. Now, America has spiraled completely backwards as if to make women feel horrible about preventing an unwanted pregnancy. Really? You aren’t going to stop them from having sex. I don’t care what God you shove in their face. With that being said, now we want to take away their protection so we can force them to pop these unwanted pregnancies out? I hope you follow-up with those kids, and make sure they are taken care of. If you’re pro-life, then you better make sure that kid has a life. Otherwise you are just pro-birth. Don’t even get me started on why us PH patients can not have kids. Yes, we can get pregnant, but eighty-five percent of woman die before the baby is born because it accelerated the heart failure. You would deny a woman who might be able to take birth control (depending on her situation, I can’t) so that she might possibly get pregnant and die? You would shame the woman who can’t be on birth control, got pregnant maybe even with her husband, but had to have an abortion because she knew the pregnancy would be fatal? Shame on you, you judgmental Christian. Aww, forgive those serial killers though…

I think its disgusting that in 2014, as a woman, I am still fighting for full control over my body. I was born with my ovaries, my uterus, my hair, and my fingernails. I will do with them what I damn well please. Is this sex slavery? Are you just deciding for me what I shall do with my ovaries and vagina? No. They are mine. They are the woman that they belong to. If we want birth control, diaphragms, babies, no babies, or fifty sex partners then that is that woman’s decision. To deny them basic access to basic needs is a human rights violation. I think it’s a violation of freedom. With the Fourth of July coming up, it really makes me think of America and all these soldiers who have fought to maintain freedom in this country. But as I see all these stars, stripes, and fireworks being prepared, I’m not proud to live in America. Freedom is being taken from us one step at a time. Basic rights for the pursuit of happiness. Not everyone’s happiness involves pregnancy. In fact, most of you bitch when you’re friends get knocked up, and are not married. Are we really free anymore? Compared to other countries yes, but this is a scary path we’ve turned down.

Now, back to the Viagra. If Hobby Lobby can go into court and say because its “beliefs” that it will now basically force it upon its employee’s, and no longer cover birth control, what about other companies? I read in an article earlier, can a Jewish company now say that they wont provide any medication that is derived from a pig because they don’t believe in that? What about another christian based company that isn’t as sexist as Hobby Lobby, and wont cover things like Viagra? Guess whose treatment is Viagra? Yea, um, my life saving medication, as well as many many many other patients, even children. This is a very complicated, ugly, political tree that branches off in so many directions that should’ve been left alone. Someday, your treatment will not be covered by your employer, American. Why? Because they don’t agree with it. Ahhh, such great doctors, right?

Ahhh, now the religious part, my favorite. I am so tired of Christianity. Sounds horrible, doesn’t it? But really. I’ve grown used to the idea that Christianity is about forcing your beliefs onto another person. In this case, its proved so. “Well Haley, they are a christian based family, so these employee’s can work somewhere else.” Are they a church? No, they are a profitable business. What about the females that have worked there a steady amount of years? They now have to look for another job because God knows what their birth control costs out-of-pocket? The birth control that they’re taking for possibly cysts, or hormone therapy, or maybe because they just had a kid and don’t want another? Too bad now unemployed female in an already jobless economy!! Hobby Lobby thinks you should no longer cure those painful cysts, receive hormone therapy, and they think you should be the next 19 Kids and Counting star! Just wow.

Overall, it’s just a horrible thing to support. Especially if you are a female. How can you support a company that strips away your freedom as a woman? If men had to be on birth control, I bet they would have bacon flavored candy of birth control available to men at those check outs by those colorful sharpies. Ha, Religion. If we’re talking about the same God they claim to believe in, its funny how he gave us Humans a choice. He said,”You can choose to believe in me, and believe in everlasting life, or not.” He gave us freewill. GOD DID. Yet, these humans…do not.

-haley.

#BOYCOTTHOBBYLOBBY

Instagram @haleyann92

Facebook.com/phenomenalhaley

Thank Y’all.

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

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

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

-haley.

Instagram! @haleyann92

Facebook.com/phenomenalhaley

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O2 and Iphones. What?

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

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

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

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

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

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-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Freedom; Oxygen of the Soul.

Lately I’ve been catching myself saying, “I can’t do that because…” , “Lord knows what would happen if…” , and blah blah blah. It hit me how much I’m limiting myself because of my dysfunctional lungs. I don’t even try, I just instantly throw on the brakes. Therefore, I’m always on the sidelines, I’m always watching, I’m always wishing that I could do such fun stuff…screw it. I’m doing it. Its JUNE! Its summer! It’s a beautiful time of year to crawl outside of your cave, and look into things you’ve never considered. Am I suggesting a running with the bulls? Of course not. But why, why do we make our priority in life to just survive it?

We really tend to find ourselves existing within the limited walls of our disease. We make excuses, we follow doctors strict orders, we take those pills and endure these side effects, and we are therefore living in a disabled rutt. Sounds messy doesn’t it? Thats because it is. This is part where doctors usually want to strangle me. The whitecoats (doctors) are used to seeing the worst of the worst, and prescribing the up most strictest care. They have to, and I respect it. But they really do forget about the soul on the inside of the defective body. I’m not letting my shell rule my life; end of story. I will take care of my shell so that I may continue to have a life, and I will be careful with my shell, but I will not enter the twilight zone of getting so lost in the care for this disabled shell to keep living only to realize I have no life. Make sense yet?

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I’m getting better at taking my pills. Stay on top of your meds, endure the stupid side effects, and communicate with your doctor.

My oxygen goes where I go, just in case. Yours should be a travel companion too, despite whether you wear it all the time or not.

I plan for the worst, and hope for the best. You should be doing that as well. Think through what you’re doing, and the possible outcomes.

Educate yourself. The more you know about lungs, blood pressures, hearts, medication do’s and dont’s, the absolute better.

Know your body. Truly know what you can and cannot do. I go into over 10,000 elevation every summer because I know I’ll have no issues. What happens if I do? I have all my meds, oxygen, BP&O2 monitors, and I know where the nearest hospital is.

Do what you love. Try everything in small quantities, and don’t push your limits.

There is so much more to life than just surviving it.

-haley.

Find Haley on instagram! @haleyann92

Find Haley’s Facebook page! facebook.com/phenomenalhaley

Trapped; Pulmonary Hypertension Awareness Day.

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

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

facebook.com/phenomenalhaley

@haleyann92

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

-haley.

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