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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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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.

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Yes, It’s Traumatic.

Once Pulmonary Hypertension was brought to my attention, it’s been nothing but a life altering path I did not choose, but was forced to take. The public has a notion that a disease is sitting in a doctor’s office a little more than once a year, and maybe (maybe) sometimes it gets in the way. When a disease arrives, it brings all of it’s baggage: insurance hassles (or life terrifying moments when insurance threatens not to pay for anything anymore), financial struggles, side effects of medication, unplanned trips to bigger and better hospitals…the list really could go on and on. We learn of something new all the time, and with each changing phase in life brings a new set of baggage from this disease. The load is burdensome. But, the most important, ignored, and heaviest one? The mental, and brain health struggles.

I have been living with Pulmonary Hypertension well, since I can remember, eleven, but diagnosed six years. The past two years have been exceptionally difficult with a prescription drug addiction (doctors pushed Xanax rather than looking into a deeper problem) and I felt like I just couldn’t focus. I was so distracted by pure anger, anxiety, and it felt like every emotion I had tricked myself into believing was not there finally rose to the surface. I tried to fix it myself by throwing away my Xanax, and I picked my life up and moved. Change felt amazing, it took the edge off my problem, but deep deep deep in the background I still could not get control over anxiety, depression, and rage. Lots of it. Finally, I stepped into a therapists office surrendering to my “I will pick myself up” attitude. After a lot of sessions, his biggest concern with me was my PTSD, and severe anxiety. My what? I knew I had anxiety, but PTSD was in my mind someone who survived an attack. “Well, technically you have.” That was his response.

“Chronic illness is traumatic on both levels–the physical obviously, but also the mental and emotional. People who are ill very often display classic symptoms of post-traumatic stress, even if they don’t have the full-blown disorder.” -Psychology Today

“Individuals experiencing chronic diseases have been studied with regard to depression, anxiety, and a variety of coping maladaptions, but negligible attention has been given to the PTSD potential of chronic disease over the life course.” – ncbi.nlm.nih.gov

As stated in my ignorance, I had not even given consideration to the fact that PTSD lingered outside the soldiers category; And the problem with this is that most of the world sees it this way too. We have not yet put together that a majority of chronically ill patients are also suffering from Post-Traumatic-Stress-Disorder because being told “you have an incurable and terminal disease” is trauma in itself. Not including the daily alterations we must make to maintain a new normal that we did not choose, on top of surgeries, and bad news. The dangerous thing about this trauma? We are living inside of it everyday. Having undiagnosed PTSD was not even knowing of its existence, not knowing I had triggers, as well as not being able to identify my triggers, and having no idea I was suffering intensely mentally. Instead I was telling myself that “I was always going to be this out of control”, “Never going to find an escape”, or maybe “I needed to kill myself.” Yes, those are real thoughts in the middle of an attack. They aren’t comforting are they?

“But for some, it might be better not to shrug off problems, but rather to acknowledge the dark side. By recognizing the traumatic aspects of illness the ill person can potentially break through denial, modulate obsession, and lessen rage.” -Psychology Today

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Original art by Haley Ann

 

Since I’ve opened my mind to the presence of my PTSD diagnosis I’m not going to say it has become easier. However, maintaining and openly dealing with the trauma, and triggers has lifted some weight. Now I will be able to communicate to health professionals about how I feel in the moment rather than becoming enraged, and shutting down. It has opened a door in communication that I did not know I had, and developing an understanding towards myself. The best part? I am picking myself up. I just needed someone to show me how.

-haley.

Please understand that mental health is an invisible disease just like PH. Your brain is an organ, and it deserves it’s own upkeep. If you feel like you are suffering then please find a professional to help your pain.