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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.