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Follow Along this Monday!

The dreaded anxiety filled clinic day is coming Monday September 17th starting at 10:30am! A clinic day consists of running all over University of New Mexico hospital for an echocardiogram, six minute walk, labs, and follow up with a doctor. I will be posting on my Instagram account all day and answering your questions! You will get to peek into my healthcare providers, team, and what my “clinic days” look like despite the overwhelming anxiety. Got questions for me? Find me on instagram to ask and tune in Monday morning! 🙂 @haleyann92

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It Was Worth It.

“I thought no man would ever want to touch me again.”

Nakeyah and I giggled on the phone the other day over existential crisis thoughts, tubing issues, transplant and relationships. One of the most important things I finally chose to do was to start making connections with other young women with my same disease. It lightened the sense of alienation, and it truly gives you a feeling that you have finally found your own species. You can exchange insurance rants, your wishes to be a mom, and your paranoid thoughts with people who will not judge you for not being “positive enough” but instead collapse with you as they know exactly what roller coaster you have been unwillingly placed on.

Nakeyah writes “I have met quite a few women in the community that I connected with on a positive and spiritually growing level. We support one another whether it be helping each other understand information, or supporting one another through difficult times or experiences. It is great to be able to talk to people who actually get and understand where you are coming from.”

It is not uncommon for patients to avoid IV therapy – almost to the point of risking their lives. Why? Simply because what people will think of them. That was my story – living up almost 9,000 feet in altitude and avoiding IV therapy like the plague against my doctor’s advice. “Why?” she would ask. Simply put, for the one hundredth time, I didn’t want to be attached to a pump. In the days after it was placed, laying in the hospital, I told my mom I did not want to go back home. I didn’t want to be around people again, and I didn’t want to be around men. I had already been with men who judged me for not being able to birth their children – what about now? I was worthless to the human race.

Having a machine attached to me has been a process of regaining self-confidence whether it is through the exposure of my chest, or rocking a cute ass fanny pack because the fanny pack is truly freedom for anyone with a pump. A year and a half later, I will always be self-conscious in some situations. But I have grown into my necessary medical care despite it’s trials of trying to walk around home only to hear your gameboy device crash behind you, or the famous “what happened to your chest” questions. Nakeyah joins the army of young women with Pulmonary Hypertension who simply put – are bad ass,  beautiful and sexy.

“I struggled so much with having to be connected to a machine 24/7. My self-esteem dropped dramatically and I feel that it made me over think how others were looking at me. Its tough being young and still having to deal with the pressures of fitting in with your peers, and the world when others are so conditioned to judge others based on their looks.”

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“When I was about 14 years old, I began experiencing episodes of shortness of breath, dizziness, sweating and feeling as if I’d faint whenever walking up stairs to go to classes. I never understood the issue, but I knew something was not right. I told my mom about my concerns and she brought me to my pediatrician. I was told over the course of the next three years that I was overweight (I was about 160 lbs then.) I’ve suffered losing myself and trusting in myself. People are conditioned to view sickness or sick people a certain way.  When you have an invisible disease, it is difficult for some to believe in you or your day-to-day struggles. I have been through numerous situations with doctors, nurses, paramedics, and other healthcare professionals that do not understand the disease and try to discredit my word, or say I am not as sick as I say I am – simply because they don’t understand the disease. I had to go through years of rumors, lies being made up about me and judgment all because others don’t get what Pulmonary Hypertension is. This has taught me to have thick skin but also to trust myself and not try to prove myself or what I am going through to others.”

Ladies – and men – who currently have a tube in your chest; do you remember your final pre pump days? Do you remember how terrified you were when you realized that doing the simplest thing sent your heart rate sky-high, intense pain flooded your body and you literally suffocated? We will never forget that pain. The pain of literally starving our bodies of oxygen. Coming home from the hospital was paranoia city trying to trust that my body could simply walk to the car without trying to die. To feel the weight of our pump but the freedom in our chest made this life changing and appearance altering treatment worth it. Sean Wyman texted me in the hospital in my spiral of hatred towards the pump, “but you are alive. This will be worth it.”

“It used to be no man is ever going to touch me, and now it’s you’re lucky I even let you touch me.” Nakeyah laughs. Her photo above is proof that we are living in the new world where old ideals are dead. Disabilities have become abilities, and people attached to machines are people.

It. Was. Worth it.

-haley.

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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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Long Term Survivor.

It was an extremely snowy and frigid January night, and I found myself pouring a bath – as usual; I’m a water sign – soaking is pretty much a necessity. Immersing in my coconut lavender bombed water, I felt my body and mind release. I was extremely calm, focused, and yet this disturbing message took hold of my mind even further. “You are going to die soon.”

It’s ominous and insane but it is something I clearly remember, and a feeling that I still can’t shake. My anxiety elevates even reflecting on it. You see, all of late 2016 and that new year of 2017, I had been struggling to breathe. For a month now if my heart rate were to raise slightly at all I lost my breath, my oxygen, and eventually consciousness. Any PH’er who has had one of these episodes knows the extreme pain you experience until the minute you lose consciousness, and the gratefulness you know when you wake up. I knew my medications weren’t working, and my Pulmonary Hypertension was progressing. I walked the worst six minute walk test of my life – my blood pressure, oxygen, and meters walked were all extremely low. I sat through a forty five minute echo for my doctor to tell me that my heart function was dropping into scary numbers for “sudden death.” The results confirmed my bath time meditation.

I had just opened a store a month earlier, and the weight of my literal life and decisions was a substantial load. The ache and pressure in my chest reflected it – my daily activity was so nerve racking and alarming that I felt I was living moment to moment. Paranoia was leading, and the bathtub premonition rested in my mind. February first after coming home from Albuquerque not two days earlier, we returned for a ten in the morning self admission to the Intensive Care Unit. We stopped for gas around eight, and I walked slowly inside for a snack barely making it in the front door with a strong dizziness taking over. I complained the entire time to my mom that my chest just felt heavy and I wanted oxygen. I called my doctor when we neared the hospital that I didn’t think I could walk inside, or to my floor in which two of my three doctors waited for me in the lobby with a wheelchair and cracked jokes with me about the check in. We were all tense and just trying to lighten the smell of death in the air.

My first night in the hospital with my three IV’s  – I had a transplant doctor stop in to ask me what my thoughts were on my organs being replaced, and that I needed to start seriously thinking about it. Overwhelmed already with a huge impending change in treatment (and trying to run my store from a hospital bed) I stopped communicating and had an internal mental collapse. She decided to dose me with an anti-anxiety drug in which I unwound even further. I was so paranoid about dying that if I felt “weird” or “high” – that it would really be me dying. I watched my monitor constantly, to the point that my nurse turned them away from me so I wouldn’t focus on numbers – and my respiratory rate was rising by the minute. I talked myself out of the black hole that can surround you when you are traumatized. Paranoia has a funny way of morphing you into someone you don’t even recognize. Later in the evening, I thought I had really lost my mind when I heard a distant guitar and suddenly a man appeared in my room gently strumming. He stood in the doorway playing  a light but relaxing tune, and left me with a smile continuing down the ICU hallway. Through my worn grin I clung to hope that I would leave this place.

The next ten days I learned about my new medication, how to mix it, my pump, all the while being dosed with oxy for severe pain, adjusting my bed to every angle to try and rid the nausea, and wishing I knew what outside smelled like. I couldn’t look at pictures of Rocco or I would sob. It felt never ending, and most people feel this way as one in three ICU patients develop PTSD. Finally, when the day came for discharge – I went straight to the hotel in Albuquerque and had my first shower with my pump. I was ecstatic to be in the water but also paranoid watching my central line, and weaving through the tubing that now sat in the shower with me. It was a bittersweet moment, and the beginning of a completely new life for me. But – I did have LIFE – something I was not guaranteed even days ago. My long time PH friend Sean, who passed away April 13, 2018 texted me to remind me of that. He beat the “but you are alive” into me – teaching me how to be grateful.

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I truly will always believe that I called it close that January, and if I would have waited even days longer to start IV therapy – my premonition would have come true. My mental struggles were holding me back almost to the point of taking my life. I am so grateful for a doctor that helped me understand my aggressive disease even further, my friend Sean, and other doctors who helped diagnose my PTSD. My first Pulmonary Hypertension conference, I saw some patients walking around with gold stars on their name tags. I discovered that a gold star stood for being a long term survivor which means you lived eight years past your diagnosis. “Only eight years?” I remember thinking. And here I am today – July 20th 2018 – eight years past when I was told that this new condition would not go away. Eight years of thinking this would go away, feeling miserable, feeling great, being in denial, losing friends, struggling in more ways than you can imagine, but making it to the eight year mark…and I damn near didn’t.

It has been a very long eight years, full of fighting for my life no matter what it takes. I didn’t think I would be on IV therapy seven years into it but I just want to keep “making it” until I don’t have Pulmonary Hypertension. Whatever it truly takes. Stay G O L D.

-haley.

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Why M*A*S*H Quiets my PTSD.

Hello my loves – out here in what seems like a time capsule of my not so hottest moments. I have kept this blog out of sight, and out of mind for such a long time. Sometimes I am overwhelmed with curiosity to read through what moved me forever ago – and I tuck it away again – or I come back and jot down quick thoughts with what seems like years in between them. I have debated over and over deleting this website – and finally out of a sheer miracle I decided to give it a much needed facelift and re-boot. I am so so proud and thankful to all of you who have been readers even through my most difficult and “loud” phases. I remember how therapeutic it use to feel sitting down at my laptop nightly, scribbling out all my most inner thoughts to help me process my disease. I went to conference after receiving the Young Adult PH Citizen Award in 2014, came back home so inspired, and then quickly spiraled. I was increasingly unhappy in my environment, and could not focus while my mind was clouded with so much anger and paranoia. My disease was forcing me to look at things with a different shade, and the results were earth shattering and numbing. While writing kept me sane, in some aspects it backfired, but gave me a log to see how trauma and disease changes the brain.  I’ve very very very slowly begun writing over the past two-ish years mainly trying to get to know the new me – who understands my triggers, and who knows when to breathe and re-associate myself with my actual surroundings. I wasn’t fixed the day I was diagnosed with PTSD but rather it has taken two years since then of training my brain, and reactions with hiccups along the way. The person who started this blog is no longer existent which is a very heavy thing to say. My body has changed, along with my cells and skin. I have tubing that pokes out of my chest, new scars, new tattoos, and a less clouded mind – depending on the day. I have come to understand this is natural, and like I have typed before, it is okay to change amidst your survival. Thank you again, for your support and please email me or comment if you would like to get in touch or have questions. All pages on the blog have been updated so please take a peek if you feel like it!

Moving forward…

I was diagnosed with severe Post Traumatic Stress Disorder in the summer of 2016. From around August of 2014 I began to have ridiculous over the top anxiety attacks. I would zone out for hours sometimes, would breakdown over little things, lose my temper, had memory issues, and I didn’t feel like getting out of bed. I tried to take on more work to feel “responsible” to make up for my sudden weirdness, my drinking increased, and I had just quit education because it was really hard to be around kids you adored everyday knowing you could never have your own; unknown to me I was triggered, and my outlook on my disease and treatment was changing. I felt lost, and very much so an outsider – cue the alienation phase. I began dancing in our beautiful winter ceremonies that winter, and it did in fact give me relief until they ended around February. By late April, I was the worst I had ever been, completely sedated and addicted to Xanax, and I decided to move to New Mexico which ultimately opened up so many doors in healing – not only spiritually – but also with a new specialist team who knew how to deal with me. I am extremely thankful everyday that I listened to this internal pursuit to go to the Land of Enchantment.

But before I got to New Mexico it was hard to put down pills and find some kind of everyday relief while I was in my worst moments. Music seemed to bring on more emotion, and could very quickly aggravate and disassociate me. This is when I ran across MASH (the TV show) on Netflix, and attempted to give it a try. It’s basic knowledge to anyone that I love the oldies, and while I never got to really watch MASH I remember seeing it on TV from time to time (like everyone else:)  It’s an understatement to say that I was instantly hooked. Instead of sleeping all day – I would prop my phone somewhere playing MASH while I cleaned my room, or got the motivation to apply for jobs in New Mexico. MASH had a way of dulling the background noise, balancing out my thinking and surroundings to where I could function again.

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Hawkeye – for me – is someone who my soul tugs at. He remains his kooky comedic self among nothing but despair and disaster in the middle of a war. He is relatable how he fights against the trauma and injustice he feels he is experiencing; I can watch MASH and feel heard yet relieved.  Pulmonary Hypertension is my war. Hospitals, surgeries, losing funding for basic life needs, fighting just for your existence. It’s known to lead to some mental breakdowns – as we all know Hawkeye had plenty. He lost Henry Blake, and Trapper John but I lost Sean Wyman and Rebecca Lindenberg. “I’ve been fighting death since I came over here. I’m tired of death. I’m tired to death. They’ll keep coming whether I’m here or not. Trapper went home – they’re still coming. Henry got killed and they’re still coming.” -Hawkeye  Friends pass, others are recovering from the beautiful miracle of organ donation. And here the rest of us are – our oxygen tanks, pills, pumps at our side, continuing to fight for our lives.

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MASH is still an escape, and relief to my reality four years later after experiencing an internal war. I am so grateful for my PH family – my beautiful friends who I feel like they exist in those green tents with me while bombs explode outside. We all share this sense of mortality, and morbid hilarity; as Hawkeye has put, “joking about it is the only way of opening my mouth without screaming.” If you are needing something warm, funny, and relief to an active mind consider this show for comfort! Everyone is different including their triggers. What works for me may not for you.

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All of this and MASH babbling to say that if you are struggling – you are not alone. There will be a day when the clouds clear and anger subsides. Sean Wyman reminded me of that while I sat in ICU crying over the new tube in my chest. The anger has subsided, the paranoia comes in waves, and the grief will always be hanging in the background like some decorative tapestry. That is just the new normal. With that being said I am so grateful today for another summer, beautiful New Mexico landscapes, wildflowers, farmers markets, days with Rocco Ricardo, and groovy records. Peace is possible within this fight.

-haley.

 

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Terminal, Terrified, and Traumatized.

Reactive is the exact word to describe my current self; a volcanic emotional eruption after years of collision, change, pressure, politics, and overall what gradually morphs into traumatic stress. Many would define the results after a life changing — or life threatening event, but what had I experienced? Just a “bad” diagnosis and a few pills honestly. Until almost six years later when I felt comparably to unraveling like a cheap sweater, and finally diagnosed with severe Post Traumatic Stress Disorder.

Only eighteen at the time of my Pulmonary Hypertension diagnosis, I did not fully comprehend what would happen to not only my body, but my entire existence. In those beginning phases I showed up to a vastly overwhelming amount of appointments, collected pills, listened to results, and attempted to force myself into continuing a life that at the time felt right for me. I believed that I would do what everyone else was doing; find a career, get married, have kids, and just endure within the definition of normal. I took the “your disease is terminal, you can’t have kids, your life will forever change” and shoved it to a deep dark corner titled denial. In it’s place I painted a brave portrait of a “strong, happy, chronically ill human” to obliterate my reality’s truth. I received quite a bit of compliments on doing so too utterly convincing my conscious and others that I was truly happy, and most of all okay.

I don’t even know how it happened, or when it happened. It was a daily transition into this anger, grief, and outraged person that I harvested a special hatred for. Deeply I felt compelled and pulled to be another individual who others, including myself, did not understand. Unpredictability, obsessed, overwhelming sad compiled with anger — Why was this happening? Despair and outrage will bring you to your knees only to find a crevice of that darkened place that only you thought erasable. The truth is unpalatable, alienating, and disturbing. Underneath it’s crushing embrace I collapsed into this final form of who I had no choice in becoming — I just am.

In simplest of terms, I am being held hostage by my own brain to be kept inside a “reactive mode” because I am experiencing anxiety related to a past traumatic event. The diagnosis of a terminal disease is traumatic. The paranoia of keeping my central line in tact as well as my pump, and mixing my medication is traumatic. The constant hospital stays, checkups, surgeries, and mandatory IV’s are traumatic. Healthcare coverage being a constant threat in America is traumatic. “Will I die from my disease, or without treatment?”

Wrapping your mind around the fact that you will have your organs replaced is indescribable — and just when you think you have escaped these continuous phrases of “you will have a normal life” — the line that doctors rely on for relaxation, you see Facebook updates of people having babies right next to your twenty-year old friend who succumbed to her fight with this disease. Just when you thought you could continue on with your Saturday morning cup of coffee you receive the news that the grant organization, Caring Voices Coalition, is no longer covering any expenses for your medication for 2018. How will you cover your $60,000 a month co pays?

Your perception of reality is a fight for survival which is vastly too intense for others, especially when reaction is what you are currently wired to produce in result of these perceived, and very evident threats. While I am currently seeking help so that I can improve my well being, I have broken down and transformed. I will never be the same because the skin which holds my body together has new tubes, scares, and shed repeatedly. It is okay to change amidst your survival.

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I wish in this country we completely understood the toll of a disease on someone, and that the consequences bleed into all parts of our life: it is not contained to a hospital room. Someone who is chronically ill becomes limited not only by the failing body they are trapped in, but employment, relationships, insurance, housing and mentally — disease can envelope you. Chronically ill people are so anxious about current day America and their future that while taking care of these defeated organs we ignore the health and well being of one our most important; the brain. Why would a country of plenty make the checkups and healthcare of an important member such a challenge? Well, quite frankly, our lives are too expensive and non existent to begin with. What did you call us Senator Pat Toomey? Burned down houses I do believe?

While the intentions and thoughts behind caring about a chronically ill person are pure and vibrating from what we think could be a good place, we have to be willing and prepared to fully encompass the mental obscurity that will plague this human. It is an exhausting exchange of interactions in which patients are losing their sure footing among this journey. Their entire way of thinking, reactions, and beliefs are developing and brewing among damaged cells, treatments, therapies, and IV fluids.

I didn’t withstand a war around me, but instead within my own body. Developing trust issues against my own being and country takes up my free time, and flashbacks to moments in surgery or ICU that I would love to avoid forever. I live in terror because I know they are coming back with vengeance, generous strange organs, rib saws, and a high chance of death in the form of treatment…or lack thereof.

-haley.

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Life On Death Row

Almost every month for a while now in America, my life expectancy is debated. People who don’t think I should be allowed to live because it’s “too expensive” versus others who see that I am human who maybe just maybe is worthy of living a life. You could say I feel that in my own country, I spend my life on death row. Will my disease take me, or the Government?

When I was told I had a terminal disease at eighteen years old, my invincibility had still not been worn down and I ignored my dad and doctors. “Everything will be fine” was kind of my outlook. I would magically one day get pregnant, have kids, live till I had grey hair, and always take my little teardrop shaped pills. Everything will be just fine. Until it wasn’t. I watched the election thinking, “Is my life really being threatened?” But once again, no one will vote for him, he won’t win, I’ll figure out how to get my pills…much how people thought before the holocaust and current day. “They can’t do that, it won’t happen to me.”

Early January, I felt the dull pain of not being able to catch my breath. I felt a deep pain trying to walk around and get things taken care of. I was in full-blown heart failure at twenty-four, and my heart was literally trying to stop beating. I was admitted to University of New Mexico’s ICU for almost two weeks with a cardiac output lower than 1.8 (scary numbers), as they put a tube in my heart (a central line) that would pump my medication into me twenty-four seven. While laying in my very uncomfortable bed, I was reading updates from Senators saying that people like me are “burned down houses” that there is just too much wrong to even care. It was discouraging in the least. From that moment on I would literally always be connected to a machine that had to be filled always with very expensive medication. I was artificially alive, and forever dependent on medication, pharmacies, nurses, doctors, insurance, and yes the government affects all of that. It wasn’t until recently when the words “pre-existing conditions” and “Lifetime caps” started flashing across my Facebook feed that I realized I fell into that category. That it would be okay to say “we won’t pay for it because it’s too expensive” and that it would actually be allowed. That people could post that they agree with that, yet still comment on your medical posts saying “prayers.” There was no way to hide from this, my life depended on it, and the tube poking out of the front of my chest proved it.

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Most people think us “millienals” are spoiled, and that everything should be payed for, and covered. We are ungrateful, we are selfish all because things like healthcare are considered a right. “MY MONEY MY TAXES” they scream at us. My mind literally spins in circles trying to understand the religion they beat us down with (that encourages them to help the disabled and poor) yet we are “spoiled” and have to turn to Go Fund Me anyways. I can’t understand why you wouldn’t be understanding or even grateful that your tax dollars went to someone who is truly in need. Someone who is waiting on new organs. Someone who had no choice in what is happening to them. Someone who is about to go into bankruptcy not by their actions but what their flawed body has done to them.

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A couple of months ago, I went to grocery shopping (about an hour drive away) and realized that the cassette that holds my medication was extremely low and I would not make it back home before it would be empty. I am not supposed to go 3-6 minutes without Veletri because my blood vessels in my lungs will shrink back down to their insignificant size and threaten my blood flow and oxygen which ultimately stresses my heart. I remember pushing the grocery cart around trying to take a deep breath only to feel resistance. There was no such thing as a deep breath but instead what felt like a fifty pound weight implanted into my chest – a literal suffocating feeling. It reminded me that until it’s time for my double lung transplant, Veletri (my IV 24/7 medication) is saving my life and allowing me to breathe.

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If our government decides to continue to make medical care impossible for us “worthless burned down houses” it will be people like me having their medication stopped because they won’t pay the $50,000/month anymore. Our pre existing conditions will disqualify us, or we will meet lifetime caps within months. Our central lines will be removed where we will lay in bed with no oxygen left to suffocate to death. Cancer patients will be left to die, kids will die, human beings will die in America – a country of wealth and plenty…why? Simple; greed.

If you support Donald Trump, or these new “repeal and replace” ideas, then you support mass murdering your own. They can do it. They will do it. Playing with my life, never knowing my fate or future has never been just a Facebook update, argument, or game. It’s literally deciding to plan for my future, or plan my funeral. Welcome to America 2017.

-haley.

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I Am THAT Sick. 

“Do you feel like you have quality of life?” was something asked by my palliative care nurse yesterday. Honestly, who could call this tube and machine attached to me “quality?”

I have been writing for almost five years about living with a terminal disease that is masked by this perceived normal, if you will, and the absolute frustration of everyday ignorance when it comes to people respecting and believing your reality. We are made out to be drama queens, negative, “too much”, and just about any other word humans would like to use as a buffer for their level of comfort. It’s an isolating feeling to know you are surrounded by people who will slap a prayer on a Facebook status, but will indirectly do what they can to keep your “suckage” far away from their steady life. It’s a dull feeling to know that you live among people who are contributing to the lack of early diagnosis problem by once again thinking you are just being dramatic, or negative. Patients literally die because they are told consistently that nothing is wrong.

Late January, death was on my mind quite frequently. My “end of life” wishes, and how they might find me in my home. I was having tachycardic episodes just even trying to pet Rocco, and found myself laying in the floor more often than not trying to calm my breathing, and move past that suffocating feeling. I knew what was coming; my invisible illness was working its way out.

After an almost two-week hospital stay, countless mental breakdowns, bruised arms, bruised hands, new nurse friends, and “mixing classes”- I walked away with a tube in my chest attached to a little machine. I never realized how many v-necks I own, or tops that lace up until I noticed a little white patch peeking out in the mirror. I have attempted to walk across my living room countless times before feeling a little tug reminding me that I am permanently bonded to this anchor. I forgot to enjoy just seeing my necklace resting against my bare chest, or how amazing my weird habit of rubbing my collar bones felt in which now my right one has a tube stretched over it.


Quite shockingly, the amount of “I didn’t know you were THIS sick” messages I received is more sickening than my heart failure in itself. I guess people really do want this justifiable evidence that you are in fact suffering which I guess seems understandable, but; while they see tubing they still don’t see the bills pile up for the expensive maintenance that is required to keep you alive. While they see your pump now they still don’t see you spending enormous amounts of time mixing your medication just right so you don’t accidentally kill yourself. While they see grumpy Facebook updates they don’t feel the mind numbing reality of laying in bed, throwing up, running to the bathroom every five seconds, and doing what you can to manage your pain level. While they see your spotty red rash along with your chest they don’t see your mini hospital that is quickly swallowing your cute home.

Congrats. You have your physical evidence. I am sick. My body is now reflecting its insides – and you know what? Despite whether Pulmonary Hypertension was visible to you or not, it has been this way for seven years – since day one of my diagnosis. It has always been this level of life altering since the moment they told me I did not have a good chance at a quality of life for long. It has been this horrible since the first echocardiogram when I was eighteen, or finding out I could never carry my own child. Open your eyes, listen to people, and gain some perspective on what sick means. The thought, and fact that you are stuck inside of a body that cannot carry you across the finish line, and that will cost you millions of dollars is realistic. You are allowed to feel this way; do not minimize your pain for others comfort.

While I realize I am NOT my disease, I find myself enveloped within it quite frequently. Instead of fighting it, I am making friends with it whether you can conveniently see that or not.

-haley.

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Pre-existing Human 

This past weekend has been a new type of everyday terror within my body, and throughout the rest of the world. “You are at risk for sudden death” are the words uttered to me from my specialist after multiple tests have proven that my heart is in fact ready to give out. Yesterday I had three tachycardic episodes from everyday tasks – where my heart rate raised way too high too fast, and my failing heart could not move oxygen to my brain and the rest of my body fast enough. Have you ever suffocated before, and lived to tell the story? How good did it feel to be in indescribable pain while feeling your life slipping away into an unknown in between hoping that you will wake up?

You see, I didn’t ask to be diagnosed with Pulmonary Hypertension. I didn’t dream for a fatal diagnosis when I was a kid. Yet, here I was barely celebrating my eighteenth birthday being told that it was going to take a lot of effort on doctors, pharmacies, and insurances behalf to keep me alive the rest of my “life” which at the time was an estimated two years. Here I am, seven years later, and getting ready to switch to a different type of therapy to keep me alive before the final decision to accept a double lung and heart transplant.

“Now one way to force it [coverage] is to force insurance companies to provide health insurance coverage to someone as soon as they show up, regardless of what condition they have, which is kind of like asking the property/casualty company to rebuild the house after it’s burned down.” -Senator Pat Toomey

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“Everyone is so offended these days – buck up like we did back in the day” is something I see flash across my Facebook more times than I care to. I mean, I guess it’s an easy life when you have the ability to breathe without assistance, or money. I guess it’s an easy life when your biggest concern is affording groceries, and taking a “what color is your aura” quiz on facebook in your past time.

However, when the government thinks that you are a waste of time, a lost cause, a “burned down house” life gets a little shaky. When you depend on three speciality medications that total around fifteen thousand dollars monthly, an oxygen machine, oxygen saturation readers, one specialist, two physicians assistants, countless pharmacies, medications to control side effects, labs for blood work, and now you’re looking at an IV pump with a hickman line, possible transplant, and a Government who doesn’t believe in supporting “pre-existing conditions” which you have…life isn’t so easy is it?

It is very personal. It is my heart and lungs. It is my life, my hopes and dreams, my future, my unborn children that I have fantasized about, my career, my beautiful cabin in the woods, my art, my goals, and my drive that is being called a “burned down house.”

I am offended. I have every damn right to be.

I encourage you all to please tweet AT @sentoomey showing him what a burned down house looks like using the hashtags of what you suffer from, #burneddownhouse and #preexsistingconditions and #humanrights. WE ARE HUMAN. Show them that. 


-haley.

 

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How Convenient.

Six years later, and the thought of my upcoming echocardiogram (and other tests) to see if my new treatment is working is still unsettling. In a couple of days I will see my heart glowing on a black and white screen not knowing it’s fate, and I can always tell when the sonogram tech is fresh because they possess no poker face. After that I’ll walk repeated laps for six minutes in a hospital hallway to see how far my oxygen dips, and of course they will jam a needle into my arm to file away my blood in multicolored tubes.

You see, I have been doing this since I was eighteen because that’s when I was told I was dying. Eighteen is when I was being asked what my end of life decisions should be, how I needed to pay for new costly medication, I can never conceive a child, and everything I thought I knew had been completely wiped out. I will never forget all the “we love you”, “praying”, and other types of comments. The phone calls, and the overall “new” concern that fades. People return back to their lives, their normality, and their family…and yes, I’m still dying.

staygold3Dedicated to the lovely Jenny Janzer

I seem cold-hearted to many and even brutal in my attitude, however what you don’t sense is pure exhaustion. While you see my disease occasionally and you put a sad face on a status I made about my anger – I live with Pulmonary Hypertension daily. I don’t have a choice to hide anything, or forget about my lungs. I instead have to take medication, endure its side effects, wear oxygen, drive to the doctors which means appointments at the hospital, and of course the impending task of hearing how far my disease has progressed. Others who are usually the first to criticize get to kiss their children, go for a run, and probably haven’t been to the doctors in over a year. “Life is unfair” someone told me. I mean, really? You feel comfortable saying that to someone who is battling their own body, who blames them-self, and fights unimaginable grief?

Just because you do not experience, or relate to my pain does not mean it isn’t real.

Just because you do not feel my pain does not mean you get to label it for your convenience. The only label I choose to wear is “fighter.”

“She’s crazy, she’s intense, she’s just weird.” No, she’s just fighting death at twenty-four, and trying to cope with that while still alive.

-haley.

A new “song of the week” is up! Take a listen.