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the-sober-story-so-far · 3 years

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A pre-snippet to the past 10 years

Hi there, i’ve got quite a few posts to catch up on since i’m on day 3 of sobriety but I feel like any story should start with where I was these past 10 years. I became a mother at 19, happily. My son was planned, I had met the love of my life a bassist in a metal band and fell in love with the lifestyle that came with it.

When I had first met Matthew I had never partied before, I was in a very abusive relationship before where I wasn’t allowed to experience what most teens did. Parties, drugs,drinking, hell even my proms. So when I met Matt (before i was pregnant keep in mind) I went wild. We would party almost every night, we fell in love fast too. One of those loves that just hit you right in your face like a bullet. We were inseparable and we were both wild as could be. Once we had decided to slow down and stop going out as much we decided we wanted to get married and start a family together no matter how young we knew that regardless it was meant to be. So we were engaged, we were actually trashed when we got engaged it was pretty punk rock if I say so myself. In the middle of an alley in baltimore, he didn’t have a ring and it didn’t matter. We were just jamming to some Coheed and Cambria in my car drinking a 30 pack parked in this alley when he suddenly told me to get out of the car and follow him. At that point he got down on one knee and asked me to marry him. I thought he was just drunk or joking at first and I remember I kept asking him the next day if he was serious well, obviously it turns out he was.

So fast forward a bit, we were engaged and started trying to get pregnant and it took a few months but with luck we ended up pregnant. We decided to get married at the courthouse since we were already on the way to getting married that year anyways. Then we had our beautiful son, I was sober my entire pregnancy. I remember the first week after I had him I got trashed though just to celebrate 9months of pain and hell but at this point i was still a social drinker. The toddler years were happy years, we would only drink on the weekends or here and there when friends would come over. It wasn’t to the point where I had a problem yet.

Then he turned 4, and life got really hard. Problems with my family arose, financial problems as well. My mental health declined and i was diagnosed with Bipolar Type 2, as well as OCD, Severe Depressive, Severe Anxiety and Borderline personality Mercurial type. As well as having PTSD from my childhood with my parents. My mom almost passed when I was younger from liver failure. She ended up having a transplant and living. I had an emotionally abusive father, my mother’s mental health was never stable I actually use to remember her waking me up at 4 am and screaming at me as a child for things I had done the day before. I witnessed so many fights and insane moments a child shouldn’t. I then ended up in an abusive relationship from 14-18 with a boy who would hit me, verbally abuse me, gaslight me, manipulate me and then one day eventually sexually assault me in my sleep. The thing about trauma is it always catches up to you.

And that’s where I think it all started going wrong, it began catching up. I moved out in my first apartment with my husband and my son and finally had freedom. We had lots of parties, I met lots of “friends” who only cared about where the next party was or who had the drugs. I began partying more and more, and made decisions I was not proud of. Including hurting my husband more than I ever could have even fathomed, I don’t like to speak of it. I have faced my guilt about it daily but in short I was unfaithful. Even if it was one time, it was inexcusable. My cousin had moved in with me, and though I love her back in that time she wasn’t the best influence either. She always wanted to party or smoke weed as well. We became partners in crime, we always wanted to get into some chaos and have fun. Then we were forced to move back to my parents all 4 of us this time due to a shooting in my apartment complex where we were no longer safe. It was unbearable living there during that time, before my mom began fixing herself and facing her own demons and dealing with my father and his emotionally abusive ways.

So we ended up moving to my grandparents, where we were later kicked out of for having people over partying almost every night. At that point I had also assumed I wanted to be polyamorous, which indeed I am not. I am bisexual yes, but the polyamory was just an excuse in my own mind not to work on my own marriage and fix the damage I had unleashed upon it. When we lived at my grandparents was when the peak in my drinking began. I began drinking daily with my cousin starting early in the morning drinking bottles of rum and vodka all day to the point of blacking out, mixing clonopin with it. Smoking spice, smoking weed, just drugs and booze constantly. One night I overdosed and slit my wrists so bad that the scars are still there to this day I am lucky to be alive and you’d have thought that would have been enough to stop me from my path of destruction but it did not.

I did end up quitting spice, once we were kicked out of my grandparents I saved money at my job and we rented a place with my cousin and a “friend”, the drinking only got worse there. More parties, more drugs. I started dabbling with Molly and Adderall while i was there and almost ecstasy. My mental health declined so bad due to being worried about a relationship with a girl I thought I loved and spending my money on substance that we lost our house after I lost my job.

I moved back home again with my parents, just my husband, my son and myself and the drinking continued then for a few months it was daily drinking until one day I did finally get sober and quit drinking, months later I started to become incredibly sick and was still sober but thought I had cancer from how violently ill I was but I was too afraid to go to a doctor for it, instead in my fucked up mind I decided to attempt suicide twice. I lost many friends along this journey from the choices I made, and from who I was. I felt that being sick was my penance for being such a piece of shit for so long.

Months passed after this, I was sick for at least 9 more months vomiting at least 9 times daily sometimes more. I couldn’t eat, I couldn’t shit and I knew something was wrong but I had doctors who didn’t care to find out, who brushed it off as IBS because I was “young and healthy”. 9 months they let it go, it turned out to be my appendix and a dead bowel. The day my appendix ruptured sepsis poured into my abdomen and i was dying, I was actually dying like I had wished for all those years and then it was in that moment that I knew I didn’t want to die. I wanted to live, I wanted to fight. I had my surgery and had 3 months of severe complications including seizures, fluid ruptures and a massive hole left in my abdomen from those fluid ruptures. September of that same year my intestine popped up below the surface of my skin and I had to have my first hernia surgery, it was successful until November of last year when it tore open and I had my final one. During the process I was foolish enough to keep the same doctors, to be dismissed over and over until the first hernia surgery when I had finally had enough and found doctors who actually cared. However, now I have severe PTSD with practitioners not to mention a nurse who physically and sexually assaulted me and a doctor who possibly did while I was under anesthesia. This is getting back to the trauma creeping up on you, it all has a purpose.

So, I went through severe anxiety, and experienced what real PTSD was. I was still sober until one night my husband and his friends and myself were all hanging out in the garage and they said have a beer you’ll be fine and that was when it all started again.

I used to look forward to every Friday and Saturday just wanting to get drunk to feel something, all the while i was still using marijuana daily as well. Well, maybe not to feel something i’d say more to feel nothing. And then it went from 6 drinks to 12 drinks, from Saturdays and Sundays to every day of the week. From 6 packs daily to 12 packs daily. From 12 packs daily to 15 drinks daily, from 15 to 18 and so on. This was a year ago i relapsed and this is my first 3 days sober since it all happened.

This is to document my journey, this is to look back and feel pride in how far i’ve come and this is so that I know I can do anything and how much I refuse to go backwards. If you’re reading this, i hope if you are in a place where I was it gives you strength, I hope you never feel alone.

Welcome to my sobriety diaries.

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emilyclementinehayes-md · 7 years

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@dr-caelebmcarthur ⇾ 65 Days || Emily & Caeleb

They had bought a house, granted it had taken them a month to do so, but they had bought a house. While it had been her own suggestion, Emily had been filled with a quiet apprehension upon their first inspection––too many bombarding memories that demanded a great portion of her concentration, of house shopping with Christopher. It had been before everything had turned terribly upside down, and the fact that they’d been happy then and her and Caeleb were currently happy now, well the parallels were undeniably uncomfortable. Still, it had been her suggestion and Emily was above all else, determined that the relationship her and Caeleb were currently tangled up in would be her last and thus her happiest. There was no room for the flashing memories and the quiet voice in the back of her mind reminding her how quickly said happiness can turn on a dime.

Just because it happened then, it doesn’t mean it has to happen now. That’s what she kept reminding herself.

The move-in process had happened in glitches, a few boxes here and there and one truck worth of her furniture. Partly because the house in question wasn’t entirely habitable to begin with––they’d found something with charm, a five storey home built in the late 1800′s situated in Bay Village. It wasn’t suburbia, and it wasn’t a white-picket-fence kind of home, but its bones were beautiful and there was enough of a space for a small yard without sacrificing the city. Emily had wisely hired a small team of men to polish the original floorboards and fit the kitchen and bathrooms they’d selected together, but upon Caeleb’s insistence, they were doing the rest.

For the most part though, the moving and the renovating had been ground to a halt when complications with her pregnancy arose. There had been issues with Grace too, perhaps a big flashing reminder that Emily Hayes was not supposed to be a mother and although on some level she’d been expecting it, waiting for the proverbial other shoe to drop, it still terrified her when it did. She’d been carrying a box of crib sheets and comforters that she’d ordered online into the newly painted nursery when the denim hugging her thighs dampened with a deep red. There’d been no pain, which was a ‘good sign’ she’d assured Caeleb as he drove her to the hospital, even though he also held that medical knowledge and the assurance was mostly for her.

Placenta Praevia had been her diagnosis, minor but worrying enough with her age taken into consideration that she was hospitalised and monitored for the following three days.

Caeleb had requested she begin her maternity leave there and then, but the honey blonde denied his request with the simple fact that she’d go mad being at home for the next ten weeks. Not to mention that she simply couldn’t, because she had an eighteen year old patient flying in from New York whose surgery had been scheduled months ago. Emily had first consulted on his case when he’d been eight and had presented with ongoing issues relating to tetralogy of Fallot and the initial surgery he’d had as an infant. He’d been delightful for what she could remember, and had been pleasantly surprised to receive his father’s email requesting her as lead surgeon to replace his pulmonary valve.

The honey blonde still held a quiet caution when she returned to work though, and while she never allowed herself to drop the proverbial ball, she discreetly cut back her hours and was careful never to be on her feet for hours on end. That morning she’d been woken early to the insistent pattering of feet against her bladder and it had been enough to remind the cardio surgeon just how much she had to lose. Their daughter was real to her now, as real as she could be without holding her in her arms and every one of her thoughts was consumed with the welfare and health of the little girl that was growing steadily in her womb. While Emily had managed to keep a strong facade when she’d wound up in hospital, the real possibility of burying this baby alongside Grace had shaken her to her very core.

Night terrors had been endless and persistent and night after night she’d awoken dampened with a cold sweat and a racing heart. Visions of tiny mahogany caskets, disturbed earth and pools of warm metallic blood. That morning had been no different and it was enough to have soft words floating past coral lips as she buttoned a blouse over her rounded stomach. “I think after my scheduled surgery today––on that tetralogy of Fallot boy from New York––that I might cut back my practice until she’s born.” Golden speckled eyes rose from the buttons to the mirror before her, in time to catch Caeleb’s gaze in the reflection.

In truth, Emily struggled to picture the young boy she’d treated all those years ago. Ironically she had been pregnant then too, however much smaller than she currently was and her situations vastly different. While her first daughter had been a blessing, the pregnancy had been an unexpected nightmare and her marriage had been less than desirable. It was almost frightening to look that far back and realise how different and yet also how little her life had changed in some ways. Heels clicked against the hospital linoleum as Emily rounded the corner and found the room that currently held her awaiting patient, the one who had unknowingly brought with him a hoard of memories. She’d been on the tale end of answering a question posed to her by one of her shadowing interns that hazel eyes hadn’t brushed over her patients face until she was at the foot of his bed.

What greeted her was not at all what she’d been expecting.

He was Caeleb. In the same rounded dark eyes hooded with thick lashes, mop of chocolate curls and nervous smile. The caramel apple of his cheeks rounded the same when his smile widened, and for a moment Emily thought she ought to add ‘hallucinating’ to her growing list of pregnancy symptoms. When she finally gathered the composure to adjust to her surroundings, she caught the voice of the intern to her left reciting his medical history.

“––Evan McArthur, eighteen years old. Presenting with a failing pulmonary valve as a result of the previous diagnosis made in infancy of tetralogy of Fallot. Admitted and scheduled for a pulmonary valve replacement today.”

Her entire twenty minutes in his room was spent making mental comparisons between the father of her unborn daughter and the eighteen year old she was about to open up in her OR. She’d told herself not to jump to any rash conclusions, but by the time they’d vacated his room she was already on a mission to find Caeleb––which she managed rather quickly. It had been one quick trip down to the Pediatric floor and she’d found him leaning against the nurses station with a file open before him. “Cae,” she managed to get out as she pulled to a stop in front of him. “I don’t know if it slipped your mind or if you just don’t know but I––I think you have an eighteen year old twin and I’m due to prep him for surgery in two hours.” It came out more fluent than she’d expected which in hindsight she was grateful for––it helped her not sound half as mad as she felt.

“...He has your last name and your eyes, and your face. Jesus Cae, he even does that odd little twitch thing with his lips when he smiles but isn’t really sure if he’s happy or uncomfortable.”

#✼{and i can barely breathe when you're here loving me–caeleb mcarthur}#dr-caelebmcarthur #✼{you'll find love in her laughter¸ and happiness in her smile–verse}

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fortheloveofscrubsandcoffee · 5 years

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A Brief History of Nearly Nothing

Preface

What is to come next is my unrefined precious metal. Pebbles pulled from rivers in Appalachia. This is me; stay tuned. This story is not about heroes. Nor is it about deeds, or lands, nor anything about glory, honor, might, majesty, dominion, or power. In many ways, we are the creators of ourselves. We choose how to respond to the world around us and choose what to do with what we are given but, we start as children. We come into the world as blank slates and the ones who begin the work of shaping who we are, are our parents. This is the story of how I was shaped into the person I am today.

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One early November night many years ago, I woke to a dance of light and shadows spilling in from my slightly ajar bedroom door. Pulling back the covers on my bed, I slipped out of the cool satin sheets. I sighed heavily in exasperation. My bedroom floor was laid with original flagstones which were covered in part by an attractive rug. Its familiar sumptuous texture instantly engulfed my toes as I arose. I tiptoed out of my room trying me best to keep quiet and not wake anyone. I teetered past the flickering television jabbering on about the week’s upcoming forecast, I eyed the bottom of the screen which read 5:23 a.m. Oh geez! I thought, what am I doing up so early? And above all... On a school night! Mom is going to kill me! I was on the verge of retreating to my room before anyone noticed I was up when I heard frantic, muddled, voices coming from my parents' room. Alarmed, I walked down the unlit corridor that led to their room; although the door was closed, a flood of light leaked out from under the threshold.

I opened the door to find my mom whimpering on her bed while my step-dad stuffed a worn-out nylon duffel bag with bottles, diapers, and various other baby items. Puzzled, I asked my step-dad what was happening and they both looked at me with a mystified expression. In all the disarray, I wandered into the room unnoticed. They explained that my mom’s water had broken and that we needed to head to the hospital immediately. My mom got off the bed, put on a robe, and in a flash, we were out of the door. As a ten-year-old I did not grasp the amplitude of the situation and unbeknownst to me that night would change my entire life.

My mom was six and a half months pregnant when she gave birth to the best gift life has given me: my beautiful baby sister. Andrea weighed four pounds, five ounces and was the tiniest baby I had ever seen. Her skin was bright red, awfully thin, and practically transparent. Her pudgy fingers were smaller than a raisin and her nails were paper thin. Her straight hair sprung out of her head like tufts of freshly picked cotton. Shortly after her birth, she was moved to the neonatal intensive care unit (NICU), where she recovered from a heart murmur and a few other breathing complications. During the first days of her birth, we only saw her in an incubator where she was connected to all kinds of wires and gadgets that interweaved throughout her frail body. She was constantly being poked and prodded; there were daily weigh-ins, tests, and needles. A breathing/feeding tube was brought into play when her condition did not improve. During our time in the (NICU), various doctors and nurses tended to Andrea’s every whim. Dr. Cervantes, a neonatologist, was in particular, a crucial factor in saving my sister’s life.

During the third week of my sister’s stay in the hospital, her breathing worsened and she developed a condition named pneumothorax, also known as a collapsed lung. “A pneumothorax is a collection of free air in the chest outside the lung that causes the lung to collapse...Treatment may include insertion of a chest tube or aspiration of free air in the chest cavity” (Schiffman). Dr. Cervantes performed the surgery, which lasted about two hours. For the first time in three weeks, we felt safe and relieved as we looked around the tiny room that would be Andrea’s once she arrived home. While Andrea was in recovery, I conversed with the nurses that were in the (NICU). They consoled my worries and raised my spirits when I lost hope that my sister would survive. Their compassion and empathy were an immense part in both my sister’s recovery, and entire family’s healing as well.

Andrea stayed in the hospital for another six weeks to recover from the surgery. She was two and a half months old when we finally brought her home. I sat the waiting room and buried my face in my hands, grateful and relieved to finally have her home. We returned to the hospital several months after her release to check on her recovering heart murmur. Andrea is now eight years old and a healthy, bubbly, miracle baby with energy like lightning. She loves to swim, play volleyball and mountain bike. She is now fully recovered from her heart murmur and hasn’t endured further complications since her birth. I feel indebted to Dr. Cervantes and his team of nurses for working tirelessly on Andrea’s recovery and I’ve set my heart on helping babies just like him.————————————————————————

My mother had my older brother when she was 17 and still in school. Two years later, she had me. As a result, my grandparents watched us whenever she wasn't able to do so, and as time passed, that happened more and more often. They actually ended up raising me but still encouraged a relationship with her. Looking back, I'm convinced that did a lot more harm than good. She just wasn't ready to be a mother so young; she was the sort who was very social and loved to party and needed to be part of the in-crowd. When she was finally ready for children, she went on to have a replacement kid -- a "do-over", as someone once described it -- who, today is my younger sister Andrea. After she was born, our family dynamic completely changed, and my brother and I were left out watching from the sideline. We felt alone and unloved. Neither of us talked about or showed emotions around each other, ever. Growing up, anytime I showed any sort of emotions besides happiness (when I was sad, crying, angry...) they would tell me that I was being dramatic or just wanted attention. This really affected me, and I feel like I can’t show any sort of emotions without the fear of being ignored or people saying I just want attention.

I didn’t meet my biological dad until I was about eight years old. My dad had another family, his “real” family, as my mom called them. When I saw the bond, he shared with his other kids I felt so desperate for his love and attention. It broke my heart way too young to get nothing more than a lukewarm response from my father. I come from a highly devout, Southern family. When I was young, I was very sheltered and hyper-religious. I had a lot of profound religious experiences, was homeschooled, and had a very sheltered social life. As I got older, I connected with my dad a bit more. He and I bonded over video games. He'd pull out his Windows 2000 laptop and joystick and we'd play Mechwarrior 4. Or I'd bring over my N64 and we'd play Mario Kart. It was great, and at that time, it was the closest to him I have ever felt. But eventually, both of my parents started rebuilding their lives. I was living with my mom, and she went through a series of bad marriages trying to find a man who would be good to her. Eventually, I got in an argument with my mom and asked to live with my dad. She let me. Teenage angst won, I guess. So, I moved in with my dad. I left my brother behind, to suffer on his own.

At the time, I thought it was for the best. He’d always gotten along better with my mom anyway. But in retrospect, it put a huge strain on our relationship. We became distant, disconnected, and we eventually stopped talking to each other altogether. At first, living with my dad was great. It was the two of us against the world. But then he met a woman, and he changed. He stopped putting effort into me, and it got worse when they married. I talked about it with her two daughters and they saw a change in their mom, too.

I was also starting public school for the first time after a whole life of homeschooling. It was hard, socially. And that was the perfect storm. This new version of my dad didn't have time to play games with me. He started paying a lot of attention to my stepsisters. The younger one was the bubbly cheerleader. The older one got pregnant from her crappy boyfriend at the time. So, I did what any nerdy kid does. I started finding something to do in my room. I turned to the internet. Reading everything I could about anything available to me. And I slowly began to realize that I couldn't believe in the religion I was raised with. I couldn't live a lie like that. But I also knew it would crush my dad, so I kept quiet. I was 15 at the time. I also started getting into online gaming, specifically World of Warcraft. I was so excited; this game was amazing. I tried to show my dad, and he acted like it was a waste of time. I didn't understand what had changed. I still don't to this day. Cut ahead a bunch of years: I'm still nonreligious and out about it to my family. My dad doesn't really know how to act around me anymore; I guess he thinks he can't trust a non-Christian, so he just keeps any conversations with me to small talk. Those old father-daughter chats where we were thick as thieves are just memories.

I was around 16 years old when I finally had the courage to call my dad out. He basically said that because he's my father, and he was the adult, I had to respect him and as he said, "even when I'm wrong, I'm right". Shortly after our argument, I moved out of my dad’s house and into my grandparents’ home. My brother quickly followed suit and moved in too; we were finally reunited. My grandparents filled the void in our hearts that was empty for so long. They saved our lives. Despite the heartache and misfortune, the big constant in our lives were my grandparents. We were the sunshine of their lives from the day we were born. They always put us first like they were our parents. We had our own room in their house and our own things there. We finally had a home. I appreciate the time and money my grandparents sacrificed each day to make us feel special. My grandmother is an intelligent, insightful woman. She believes that everything happens for a reason and that we didn’t live this challenging life in vain. She says, “Algunas amistades envejecen como el vino, y otras envejecen como la leche”. Which means, some friendships age like wine, and some others age like milk. If someone, (even if they’re family) makes you feel tired and unpleasant more than happy, it's time to let them go. This Mexican proverb has helped me learn to recognize healthy relationships and distance myself toxic ones. Since moving out of my parents’ homes, I’ve surrounded myself with good people and I’ve created my own family with close friends; and I’ve never looked back.

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I met my boyfriend when I was fifteen volunteering at a long-term care home. We used to flirt (badly), sneak leftover cheesecake and eat it in the linen closet and race each other to the door every week. Our mutual nerdiness was what brought us together. We become best friends and dated throughout high school. He became my comfort and safe place; someone I could count on to cheer me up whenever I had a bad day. Unfortunately, my life went through a number of interesting twists and turns my senior year of high school. My brother died on January 17, 2015, after a year of fighting cancer. We had his funeral and burial on January 19. After his service, we went out to eat and I got really dizzy and nauseous. I couldn't concentrate. People would talk to me and I was kind of out of it. I assumed I hadn't eaten enough, and my sugar was low, so I sipped my sweet tea hoping it would fix it, but it didn't help. I went back home, and I wound up crying, and staring at the floor, and had weird thoughts like eating the linoleum floor. I assumed I was having a nervous breakdown and needed help. So, I told the boyfriend and we decided I was either pregnant or having a nervous breakdown. I took a pregnancy test the following morning and found out that I was, indeed, pregnant. I don't know how to put this. This was one of the toughest few months of my life. I feel like I've felt every human emotion possible from the brightest to the darkest. Mostly dark still. When my brother got sick, I felt guilty that it wasn't me instead because he loved life and succeeded, and I felt like a loser pretty much all the time. My brother was so full of life. He was driven, loyal, fun, organized. He would have thrown me a baby shower filled with love, and cutesy baby-chick decorations and cupcakes that he'd have baked. When I got my first ultrasound I burst into tears because he would have been the first one, I'd share the news with. He wanted to be an uncle more than anything and would always tease my boyfriend and me to hurry up and make babies. That was only four years ago. How is that fair? How is it even real?

My baby was due March 31st, 2015. I was around fifteen weeks at my second ultrasound where my doctor told me that I was having a girl. A few weeks later, I went in for another ultrasound and found out that she was a he. I was desperately hoping for a girl, and both my boyfriend and my grandparents were convinced I was having a girl. We had a name picked out for a girl and had hardly discussed boys names. A few months before his passing, my brother also stumbled across a bunch of my old baby/toddler clothes whilst having a tidy the one day too, it felt almost like fate. I had to hold back tears the entire walk home and when we got home, I pretty much locked myself in the bedroom and cried my heart out for hours. I didn't come out for the rest of the evening; I just had no idea how to handle it. Everything had been going wrong recently, I just wanted one thing to be happy about and it broke me that I couldn't even have the one thing I wanted. Luckily over the course of the next few days, we found a new name we were both happy with (my Granddad's name for his first name, and my partner's middle name for his middle name) and I gradually found myself getting used to the idea.

I had a rough pregnancy with a lot of complications. I had pre-clampsia and had to be induced. It was only a few days before my due date, so it wasn't a big deal. I was put in the labor room, and hooked up to IV, monitors, etc. and they started magnesium in my IV. The contractions were the worst. Each contraction felt as if a bowling ball landed full force on my spine (near the lower rib area) and then, with the initial force continued throughout, the bowling ball would roll down my spine (like it was crushing it the whole way) and then land in my pelvic area with double the initial force. Every single contraction was excruciating. When it came to pushing out the kid? There was so much stretching and pressure. First off, everything is crushed. Your bladder and all that, you suddenly feel a lot of pressure. The tiny human down there is pressing their way through your innards and it aches, and you feel as if you're going to burst. Suddenly it's time to push. With each bowling ball contraction, you are not only instructed to push, but your body has this natural instinct to localize all your muscles into getting this tiny being out of you. You honestly can't help but push. The stretching? Jesus! Remember that bowling ball I mentioned? Yeah, it wants to come out. Imagine your OBGYN taking the speculum at your routine pap and just extending it as far as it can go, then he/she decides that's not far enough and sticks both hands in there and starts pulling you open as far as you'll go. The worst part was my pelvis. It had all this pressure behind it to start with but when the head starts to come out, it feels as if it's being torn in half while also being dipped in acid. Once I got to that final push and my baby came out, the relief was incredible. When I saw him, the Earth-shattering pain didn’t matter anymore. All I wanted to do was cuddle up with him and sleep.

I am so much happier since having my boy. I try my best every day to be the best mother I can possibly be. I want him to feel loved and appreciated; I want him to receive and experience everything I missed out on growing up. I can't believe that I really get to live my life with this awesome human! I find everything so fun. Just watching him experience the world is the best thing ever. I feel like I won the lottery. Being a parent is the most beautiful, awful, inspiring, depressing and joyful act I have ever done. The sleep goes, but it comes back. My social life changed a lot, but everything slowly went back to normal. He cries and doesn’t sleep and gets sick and gets messy, but he also laughs and smiles and grew before my eyes. My little one is now three years old and I would trade all my Saturdays sleeping until nine for the rest of my life just to hear him cry for his 4 A.M wake up call again.

The road to recovery from a childhood without a parent's love, and support is long and complicated. One aspect of healing that is rarely touched upon is mourning the parents you needed, and deserved. The word deserved is key to understanding why this remains elusive people:They simply don’t see themselves as deserving, because they’ve internalized what their parents said and did as self-criticism and have wrongly concluded that they’re lacking, worthless, or simply unlovable. A few years back, I decided to vut both my mother and my father our of my life. My decision was prompted by my discovery that I was carrying a son, my first and only child. I was finally able to do for my unborn child what I hadn’t been able to do for myself: Get free from my parents' poison. In anticipation of becoming a mother, I began the process of mourning the parents I deserved, which had nothing to do with the actual people who’d given birth to me. Just what it sounds like — to grieve the absence of a parent who listened to you, took pride in you, who needed you to understand her as well as she understood you, a person willing to own up to their mistakes and not excoriate you for yours, and — yes — someone to laugh and cry with. I look at my relationship with my own son and, sometimes, I can see how my younger self would have envied him. Even now, it’s difficult to look past how my mother squandered countless opportunities; chief among them, actually knowing me.

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Work Cited

Schiffman, George. “Pneumothorax: Definition, Pictures, and Surgery Facts.” MedicineNet. Ed. Melissa Conrad Stoppler. N.p., 30 June 2014. Web. 14 Sept. 2015.

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docboots · 5 years

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(PotDA 11) The Professional Patient

It has been a year since my upper teeth were ripped out. While some of the updates to my life are good, there are plenty more issues that rise up. Specifically in how much I feel I need to do before and while I continue to try and get my teeth removed. Though, at this point, it is bringing myself to actually make the appointment. The machismo from the adrenaline has worn off, and I find myself terrified of another go. While the pain was not spread over a weak like the torment I am used to, the agony of the removal of my teeth sticks with me. While I can take comfort in it as inspiration for horror plots and ponderings that hopefully will become the horror stories to define my legacy one day, but the terror of another go holds me back. Like it did in writing this.

I suppose, at this point, you could clearly call my focus on the health care system a bit of an obsession. Though, I personally do not know how I should otherwise approach a situation as I have experienced. The years go by, and still, I have more to write and ramble about. Still, I have more that makes my mind throb with conflicting emotions of manic outrage and debilitating depression. All the while the buzz of anxiety add to the haze, while the ADHD warps me completely. Fuels the fire of the rest by being the name for a peculiarity in my mind I had since I was born, I’d imagine, as I was diagnosed with it at the age of 5. However, I’ll get to the bumblefuck that was my ADHD treatment (or lack thereof for the past decade) in the next ramble. This one is to bridge the gap I mentioned in the last one.

As a brief recap, on March 23, 2018, I went in to have all of my teeth removed. This was required as a lifetime of one of my disease’s flare-ups mixed with a decade (around 16-20 to a week ago. More on that later.) of the issues of suddenly taken off medicine for your ADHD and forced to stay off it no matter how many damn doctors/shrinks/pill-shrinks you see explaining your symptoms causing the stress to increase and the flare-ups to become more frequent. The constant vomiting exacerbated an issue a sugary diet may have caused and utterly demolished my teeth little by little. However, thanks to complications from how infected these teeth had become (having been unable to do anything due to co-pay costs, then not having insurance, then Medicaid being a headache to find anyone to be able to get it fixed) which lead to a few hours of pulling, waiting, pulling, blah blah… I was referred to an oral surgeon.

Which is where the Health Insurance Shenanigans begins. I am quite familiar with these shenanigans, as they have been happening since I started. You see, the many different Nevada Medicaid healthcare providers who have insured me will have a list of the different doctors that will take your insurance. It sometimes might even claim to be able to tell you if they accept patients. This would be highly convenient if it did as it said. Instead, whenever I wanted to find a doctor, I would have to go down the list and call them one at a time. The moment Medicaid is mentioned, their tone sours ever so slightly. They tell you that, regardless of what the list on my provider’s own list says, they do not take Medicaid. The other constant was that if they DID, they were full on patients. If the did and they had openings, it is months down the line. When you need to find multiple specialists to deal with multiple issues caused by the same illness, this gets highly agitating. Frustrating as the ones I believed I could complain to like to assure me they understand it as. Why I do not believe them is they also seem surprised at how FUCKING PISSED OFF fucking up my health makes me.

Remember these shenanigans, I will be bringing them up often.

On March 6th, 2018 I received a letter from the allergist, who had been (poorly) helping me with my HAE care, that my care with them has suddenly been terminated. Now, I had only a few months prior FINALLY received from this doctor a pair of highly useful medications. In between the belittling, lecturing, and talking down to I got more than treatment, I finally was prescribed HAEGARDA and FIRAZYR. The first being a medication I WAS taking twice a week. It was rather painful for 15 minutes upon injection, but that cleared up quickly. The other was to be used in the event of swelling, injected like an Epipen (WHICH IT GOD DAMN ISN’T) might be at the moment of attack. With these two medicines, I had been comfortable enough to make my appointment with the dentist in the first place, which after a few appointments before I received the letter had been set for March 23rd.

Suddenly I received that letter, which was soon followed by the provider of the two medicines telling me my YEAR LONG PRESCRIPTIONS with them had suddenly been pulled. Something they were confused about, MUCH LIKE IS WAS. Upon calling my allergist’s office, I learned that the reason had been APPARENTLY I wasn’t taking it. Which is confusing, as I had been, and had only missed the one appointment before the letter thanks to the INFECTION IN MY GUMS I NEEDED REMOVED along with all the other damn issues I was having and trying to mix making me have troubles sleeping and making an early morning appointment. Something that I apparently need to suck up.

This reasoning SHOULD have been easily refuted by the constant deliveries of the medicine TO MY DOOR. The nurse that had come and taught me to use these medicines, THEIR APPROVAL THAT I KNEW WHAT I WAS DOING. As well me having sharps container with plenty of the injection needles I used. They did not wish for any of this, and after angry demands given I HAD A SURGERY APPOINTMENT for my teeth which has a DAMN HISTORY of causing swelling of the throat. So they extended it for 30 days, a bridge period, after constant calls that now just sit in my head like an angry flurry. Mixing them up, but the point is I had to FIGHT to make sure I had enough of the medicine for my blood disease so I could go through the dental procedure with the lost chance of a POSSIBLY FATAL flare-up. Fun.

So, once I was healed up after the dental appointment so I could start calling and get the bottoms removed… The Healthcare Shuffle appeared! This is when I tried to call the Oral Surgeon I was referred to, they said they never received it. I call the Dentist who sent it and they said they sent it to my insurance. I call my insurance and they first said they haven’t received it. Later say they do and sent it but the Oral Surgeon never got it. WHILE all this was happening, a far more problematic issue arose. Keep in mind, this is all happening as I am still getting over the fact I now have these annoying dentures that I am STILL angry over.

The medicine ran out. So, of course, I had to find someone new to prescribe me it. This had the issue of me needing to FIND someone who would do this. The Primary Care Physician that I had was uncertain himself and kept telling me he knew nothing about the disease. After explaining, he referred me to a Hematologist and Allergist… IN VEGAS. (This is 8 hours away from me on a good day or requires an hour and a half plane trip for something I likely need to do multiple times. I live in a city, not a small town. That has MANY ALLERGISTS AND HEMATOLOGISTS.)

Annoyed by this, and after Medicaid Shenanigans, I eventually got an Allergist and a Hematologist referral. Upon calling the Hematologist, they refused! I was highly confused, as they kept repeating that I should go to an allergist. They don’t treat allergies. Hereditary Angioedema is a blood disease. NOT an allergy. Apparently, nothing can be done and I have still yet to see a hematologist. Joy. The reason? Even though I explained extensively this was a genetic blood disease and the symptoms only could be COMPARED to an allergy to stress. IT DOES NOT REACT TO ALLERGY MEDS. An epipen makes the area I inject just swell up yet give me the energy for my skeleton to feel like it wants to run around the block without the rest of me.

So, not surprising, this caused a lot of issues with swelling. Inevitably, I had an episode involving my gastrointestinal system. This time, it was bad enough I couldn’t seem to use medical marijuana to cover the symptoms until I was well and had water in me. So one Ambulance ride later I am in a hospital bed… Oh, wait, no, I am at the front desk of the emergency room waiting for a bed for a bit. Until I puke enough to be a disturbance. However it still takes quite a while before I get the main thing I want and have been kept from thanks to my body violently puking it up. I wanted an IV with something to hydrate me. The drugs could wait untiul the doctor, but as time went by and it felt like an eternity, I kept being told by all the people checking on me that I had to wait for a doctor to get my damn liquid.

All the while my fiance and my father are both helping explain that this was, without any doubt, an attack from my blood disease. It was an hereditary angioedema attack, blah blah… My discharge papers (useful in tracking my disorder and proving problems.) instead say it is some ‘unspecified vomiting type’ instead of maybe ‘blood disease triggered vomiting’ or ‘HAE triggered vomiting’, ‘genetic disorder triggered vomiting’. Think you get the point, more something that proved the medical staff were actually listening to my concerns. Attempts to fix this so I had proof with disability was met with them saying once that is written down it is permanent.

Then, five months later, it happened again.

Luckily, the Allergist I eventually found turned out to actually have heard and seen a couple others who had this disorder. He knew of medicines and, instead of feeling like I needed to teach my doctors… I was given hope! I was given a vial of Firazyr. He said it was extending an olive branch, and I feel this will be what I remember when I try to think of the emotions needed to write a scene similar. I have never felt hope like I have then. Hope that likes to come and go, but at least I have one doctor at-bat for me.

Until a couple of months ago as of March 20th, 2019, I FINALLY was put on a new medication. Tahkzyro which I take twice a month. HOWEVER, I am still getting push back when it comes to getting the Firazyr, which would help me with my anxiety over the next surgery to remove my bottoms. Which, now that I have Tahkzyro, I once more have to take on HealthCare shenanigans to try and figure out who gets the god damned honor of removing my teeth. As the ones I was referred to HAVE the damn referral… But they don’t take Medicaid. SEEMS THE INFECTION IN MY BOTTOM TEETH GETS TO STAY! Just get to keep draining that thing myself. GUESS WE ARE FRIENDS FOREVER, ME AND THIS INFECTED TOOTH! Though it is crumbling away like the rest. It is down to the gums now. Though, I would like the Firazyr so I can inject myself IMMEDIATELY upon noticing my throat swelling. Never been asphyxiated but something tells me it ISN’T ALL THE FUN AN END! Especially at twenty fucking eight. So you can see my troubles. That doctor is still great, and makes a good point, I just think I need to make myself a bit clearer.

The years feel like they become less and less about me finding my place in this world, healing, and learning but instead more and more about me working as quality control for a broken system with no desire to fix itself. With every passing event involving them, I feel less like a patient and more like the data point I clearly am. With articles full of professionals professionally talking about diseases and medicines without much mention or care for the patients. The ones who that was made for.

For patients like me to heal. Not for people to make money. That is a side-effect of the job they signed up for. To fucking CARE for your goddamn patients. Not be coerced into giving meds left and right (or taking them away as a debate on whether or not ADHD FUCKING EXISTS goes on) or whether you believe the name given to the collection of symptoms I show. My disorders are not Cryptids. I have blood tests, medical papers, and diagnoses. Not blurry pictures of my blood viewed through a slide where fragments of the disease are seen peeking over their shoulder as they rush into a forest of red blood cells.

My particular disorders that I had since birth (ADHD and HAE) were caused by my body’s INABILITY to produce something. So if someone who CAN produce it takes it (least in the sense of ADHD as I doubt anyone else will benefit from a c1-inhibitor. No more than insulin if they aren’t in need of it like a diabetic) then of COURSE something different will happen. Of course, they might get high. That is not my fault as the patient it was made for.

As the point I am trying to make is that I do not feel I have been treated as a patient, I feel I am given more paperwork and calls than a cubicle worker. I feel I have to study more about the laws and practices to keep myself from being further burned. In between the Madness. The Pain. The Suffering that ALL OF THIS has inflicted on me. In between the new disorders this has caused me, particularly my obsession.

All I can think of is how to fix this. How I keep seeing articles, posts, and websites full of cries for help at a broken system. Of people fucked over, lacking their medicine, and the only ones getting the fucking attention are the dipshits who thought that taking someone else’s necessity would be a good way to get high. A good way to ‘focus’. To ‘relax’. While you use that as a fucking excuse to let people like me suffer, and further excuse it by brushing us into a group of people who just ‘slipped through the cracks’.

This obsession has grown now. Especially from the subject of the next article, ADHD meds from the perspective of someone who was one them from the age of 5, had them taken somewhere between the ages of 16 and 20 (my memory is incredibly hazy in this period thanks to the damn medicine being taken away) and getting only mild relief from marijuana replenishing my Dopamine… But that isn’t all Marijuana does nor all ADHD needs. I FINALLY am being treated, though it is just beginning. Still need to find MY medicine. It only took a decade for them to admit they were screwing with me. The lengths of my rage, again, is the subject of the next article.

This one was about how this madness turned me into someone who believes his job is to be a Professional Patient. Being talked into long commutes, long waits waiting for a doctor who will drop you for being late when they are constantly 45 to an hour late. Constantly filling out paperwork and debating about the fact my problems EXIST. Being treated as too young to be suffering. To the point, I don’t know what else to do. When you are too fucked up to work, explained in an earlier article, too fucked around for college, and the only thing you can apparently do is smash your rage against a keyboard and hope spreading your story around for no one to read will get something done.

If not? Then no matter what happens. If I die from malpractice or my disease, if I am killed, if I am silenced. My words on how this bullshit has made me feel will be, hopefully, somewhere.

The internet is notorious for being difficult to clean thoroughly, after all. If you do a little light digital legwork with the intention of being annoying as all hell. Especially since I got denied for disability again. Next time, I have to go to federal court apparently. JOLLY GEE GOODIE.

#nonfiction #Medicaid #Hereditary Angioedema #genetics and heredity #disability #us healthcare #us health insurance #reno #renown #suffering #blood disease #disease #rant #medical malpractice

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adriansmithcarslove · 6 years

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BREAKING: Mike Manley Named New FCA CEO Amid Marchionne Health Crisis

FCA has named Mike Manley as the company’s new CEO with the sudden and unexpected news of a health crisis for Chairman and CEO Sergio Marchionne.

Manley, 54, takes over the job immediately, initially as interim chief until an emergency board meeting can make the succession official. It is a move that was not supposed to be announced or take effect until next year when Marchionne planned to retire. Marchionne was also CEO of Ferrari which had been spun off of FCA. Ferrari said Louis Camilleri, former chairman of Philip Morris International, will take over as CEO.

Mike Manley, former Jeep chief and current FCA CEO

Marchionne developed complications following surgery in Italy and his health took a turn for the worse, making the corporate news necessary. Marchionne is 66 and was recovering from a shoulder injury.

“With reference to the health of Sergio Marchionne, FCA communicates with profound sorrow that during the course of this week unexpected complications arose while Mr. Marchionne was recovering from surgery and that these have worsened significantly in recent hours,” the company said in a statement today. “As a consequence, Mr. Marchionne will be unable to return to work.”

Manley was considered a top candidate to replace Marchionne next year. His credentials include running the profitable Jeep and Ram brands and he also built the company’s presence in Asia. Another top contender was Richard Palmer, the chief financial officer.

As thoughts go out to Marchionne and his family, John Elkann, Chairman of Exor, released a statement. “I am profoundly saddened to learn of Sergio’s state of health. It is a situation that was unthinkable until a few hours ago, and one that leaves us all with a real sense of injustice. My first thoughts go to Sergio and his family.”

The two men have worked together for 14 years; Marchionne became CEO of Fiat in 2004. While they did not always agree, Elkann watched Marchionne create the company now known as FCA from the partnership of an ailing Fiat and a bankrupt Chrysler in 2009 that needed a business partner as a condition of exiting bankruptcy protection.

Marchionne managed to take two ailing companies and return them to profitability. Evidence of that: last month at an event to release the company’s next five-year business plan, the sweater-wearing CEO wore a tie to signal he had paid down the debt, as promised. It was a feat many did not think possible and sets up the automaker well to implement the new plan that takes FCA through 2022.

Elkann said, “What struck me about Sergio from the very beginning, when we met to talk about the possibility of him coming to work for the Group, even more than his management skills and unusual intelligence, were his human qualities, his generosity and the way he understood people. Over the past 14 years together we have lived through successes and difficulties, internal and external crises, but also unique and unrepeatable moments, both personal and professional. For so many, Sergio has been an enlightened leader and a matchless point of reference. For me, he has been someone with whom to share thoughts and in whom to trust, a mentor and above all a true friend.”

Marchionne, an Italian as well as a Canadian, is steeped in economics as well as philosophy and held a law degree. He likes to quote poets and philosophers in corporate speeches and the audiophile often plays his own soundtracks ahead of press conferences and earnings calls. He was also known for living on cigarettes, espresso, and little sleep for most of his career.

“He taught us to think differently and to have the courage to change, often in unconventional ways, always acting with a sense of responsibility for the companies and their people,” Elkann said.

Marchionne also had a team of leaders who were being groomed to take over the top job to allow for a transition that was to take effect next year. Manley likely did not know he was the chosen one as Marchionne had told reporters repeatedly that the new CEO would be told at the last minute.

Elkann said because of the succession plans in place, there will be a smooth transition.

“It has been my privilege to have had Sergio at my side for all these years,” Elkann said in asking for respect for Marchionne’s privacy at this time.

The post BREAKING: Mike Manley Named New FCA CEO Amid Marchionne Health Crisis appeared first on Motor Trend.

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netunleashed-blog · 6 years

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Beyonce reveals 'dangerous' birth of twins left her in hospital for WEEKS as she embraces new curves in Vogue cover shoot

https://www.internetunleashed.co.uk/?p=33584 Beyonce reveals 'dangerous' birth of twins left her in hospital for WEEKS as she embraces new curves in Vogue cover shoot - https://www.internetunleashed.co.uk/?p=33584 In a rare interview, Beyoncé has opened up about the traumatic birth of twins Rumi and Sir, revealing she has since learned to embrace her curvier bod. The singer, 36, sat down with American Vogue to discuss the June 2017 birth of her precious twins, revealing that husband Jay-Z , 48, was a “soldier” in the delivery room when complications arose. She said: “I was 218 pounds the day I gave birth to Rumi and Sir. I was swollen from toxemia and had been on bed rest for over a month. “My health and my babies’ health were in danger, so I had an emergency C-section. We spent many weeks in the NICU.” Bey says that rapper Jay, who she calls her “best friend”, was with her every step of the way. Read More Beyoncé sat down for a rare interview with American Vogue (Image: Tyler Mitchell//Vogue) She continued: “My husband was a soldier and such a strong support system for me. “I am proud to have been a witness to his strength and evolution as a man, a best friend, and a father.” Beyoncé went on to explain that the C-section and the subsequent complications she faced had a profound effect on her. She explained: “I was in survival mode and did not grasp it all until months later. “After the C-section, my core felt different. It had been major surgery. “Some of your organs are shifted temporarily, and in rare cases, removed temporarily during delivery. I am not sure everyone understands that. “I needed time to heal, to recover.” Queen Bey spoke candidly about her body, admitting she is fond of her curves (Image: Tyler Mitchell//Vogue) In the weeks and months following the twins' birth, Beyoncé says she grew to appreciate her fuller figure, only altering her diet in advance of her epic headline slot at Californian music festival Coachella earlier this year. She said: “During my recovery, I gave myself self-love and self-care, and I embraced being curvier. I accepted what my body wanted to be. “After six months, I started preparing for Coachella. I became vegan temporarily, gave up coffee, alcohol, and all fruit drinks. “But I was patient with myself and enjoyed my fuller curves. My kids and husband did, too.” The iconic performer admits that she is finally happy with her bootylicious body because she believes it is 'real'. Beyoncé says she feels sexier than ever (Image: Tyler Mitchell//Vogue) She continued: “To this day my arms, shoulders, breasts, and thighs are fuller. “I have a little mommy pouch, and I’m in no rush to get rid of it. I think it’s real. “Whenever I’m ready to get a six-pack, I will go into beast zone and work my ass off until I have it. She added: “But right now, my little FUPA [slang for 'fatty upper pubic area'] and I feel like we are meant to be.” Bey confessed that she hasn't always had such a healthy relationship with her own body image, revealing she piled pressure on herself to lose weight following the birth of first daughter Blue Ivy back in 2012. She explained: “After the birth of my first child, I believed in the things society said about how my body should look. Beyoncé and husband Jay-Z in Paris (Image: Getty Images Europe) Beyoncé impressed fans with her killer moves at Coachella (Image: REX/Shutterstock) “I put pressure on myself to lose all the baby weight in three months, and scheduled a small tour to assure I would do it. Looking back, that was crazy. “After the twins, I approached things very differently.” Beyoncé went on to reveal that she feels more confident than ever, after giving up on her people-pleasing past. She concluded: “I look at the woman I was in my 20s and I see a young lady growing into confidence but intent on pleasing everyone around her. “I now feel so much more beautiful, so much sexier, so much more interesting. And so much more powerful.” Source link

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robertkstone · 6 years

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BREAKING: Mike Manley Named New FCA CEO Amid Marchionne Health Crisis

FCA has named Mike Manley as the company’s new CEO with the sudden and unexpected news of a health crisis for Chairman and CEO Sergio Marchionne.

Mike Manley, former Jeep chief and current FCA CEO

“He taught us to think differently and to have the courage to change, often in unconventional ways, always acting with a sense of responsibility for the companies and their people,” Elkann said.

Elkann said because of the succession plans in place, there will be a smooth transition.

“It has been my privilege to have had Sergio at my side for all these years,” Elkann said in asking for respect for Marchionne’s privacy at this time.

The post BREAKING: Mike Manley Named New FCA CEO Amid Marchionne Health Crisis appeared first on Motor Trend.

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comfsy · 6 years

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The Spinal Tap That Changed My Life

On April 1st, I went for a short walk to watch some Florida marsh hens rustle through the reeds and cackle at the wind.

The date marked one month since I started walking again.

I sat there, awkward and sore on a tiny bench facing the water, fighting back tears. Despite a newfound infatuation with the local wildlife, this was not where I planned to be.

I was grateful to be walking, but April 1st also marked my 10-year anniversary of leaving New York. It was the date I set off for Chile, leaving behind a comfy law job and half a decade in a city I called home. In the years since, I planned to commemorate my 10-year travel anniversary with a giant party in a city I loved.

Once I moved to Oaxaca, it proved to be the perfect spot. The occasional idea would pop into my head during my long wanders around town. I’d plan for my favourite stalls to participate, giving hungry visitors a taste of Oaxaca’s rich culinary curiosities. Israel’s head tacos, Mateo and Sarai’s grasshopper pizza, mole, tamales, chilaquiles, pozole, and so much more. Anyone who wanted to come could, and I’d put together an itinerary for the week where they could enjoy the city, stuff their faces, and revel in the joy of learning through food. We’d have a mezcal-soaked multi-day extravaganza, with bumpy collectivo rides into the valley and plenty of smiles.

In a field of marigolds during Day of the Dead preparations outside of Oaxaca. This picture was taken near Zaachila.

As I’ve said in prior annual reviews, I did not start this site aiming for a job as a full-time writer or public speaker. I did not leave the law with even an inkling of a new career. Plus, I wasn’t even particularly good at traveling. I got sick a lot. I hated packing, always and forever. And I didn’t even care how many countries I visited. I just wanted to keep learning and learning. In the course of soaking up everything I could, I found that travel and food were the perfect foils for my enduring need to write. Through writing and photography, I was able to keep my input levels high on a daily basis while arcing into a very unexpected life path.

In Mari Andrew’s wonderful, whimsical new book Am I There Yet, she writes of a shopkeeper in Berlin who changed Mari’s perception of art-as-craft. “She spoke about art as though she were talking about her best friend or a bubble bath,” Mari writes. “She wasn’t creating for accolades, but for the satisfaction of a new paintbrush dipped in fuchsia.”

That satisfaction, of stringing words together in new ways, of sharing a perspective that hopefully effected some change, was all I needed to feel creative. Writing was a tool that connected me to the world in ways I never contemplated. And in the seemingly endless stretch of these past seven months, when I’ve been unable to sit or walk or write, I felt like I lost the life I worked so hard to build.

It All Began With a Spinal Tap

For those of you just tuning in: sudden and very scary symptoms led me to the ER in New York, where they were concerned I had a brain bleed. To check, they performed a very unpleasant spinal tap with needles that were large for my frame. The local anesthetic did not do its job, and truthfully it was one of the most painful experiences of my life.

The night of my ER visit, I came back to the apartment I was cat-sitting at after midnight, only to find it burgled in my painful absence. Upon my sharing this detail with readers after the shock wore off, one thoughtlessly commented that I must have “angered the karma gods.” Actually, it’s quite the opposite. We have a screenshot of the person as he came in through the window. His head is fully covered in a mask, he is wearing gloves, and he is carrying a white cloth in his hand. His description matched home invasion rapes in that borough, the white cloth likely soaked in chloroform.

Do we know what he planned that evening? No. Upon seeing the screenshot, friends agreed with my vile theory that burglary may actually have been the consolation prize. The whole thing made me sick to my stomach and messed with my mind. Already in acute pain following the spinal tap, I couldn’t bear to be alone in the apartment, even during the day. Friends stepped up and rotated day and night until my mum and stepdad could arrive from Montreal to take me back. Some brought food, others brought hugs. Most simply sat with me, soaking in the insanity of what I referred to as my “black swan night.”

I didn’t mention this part of the story in my October post because at that point my brain was a frozen video, buffering nonstop. But it is important now because many of you have asked why I am not more angry, which is a valid question. I don’t think anger serves me here, and it certainly won’t help my healing. But also, there is a clear line in the sand from that very traumatic night.

The divergence of fates — the Jodi that stayed home, versus the one that went to the ER — is very stark.

Through all of the subsequent treatments and uncertainty and pain, my belief remains that it would have been worse had I remained in the apartment that night.

A Winter of Extremes

As you know by now, the spinal tap (or lumbar puncture, since many people use that term instead) led to a rare and debilitating condition called a cerebrospinal fluid leak (CSF leak). Initially, I only had a post-lumbar puncture headache. The headache often resolves with an epidural blood patch, where your own blood is injected into your epidural space to help your body heal the hole(s) in your dura created by the spinal tap. I did return to the hospital in New York to try and get one, but was told that it had its own risks and that I ought to heal fine on my own.

Several weeks later, now in Montreal, it appeared that my body wasn’t cooperating with their healing plan. Terrified, and bleakly looking at the calendar toward my supposed departure for Oaxaca in October, I spent my hours in a state of half-shock, half-Nancy Drew. I read studies, forum posts, panicked write-ups and more from around the web for any help I could find. Unsurprisingly, the biggest step forward came from my own community.

A few months prior, I made a point of visiting a mini cow named Moochi, who I enjoyed following on Instagram. I may or may not have attended a conference in Los Angeles in part to facilitate this bovine meeting. At the time, he was co-owned by a guy named Tim, who runs a travel blog. It turns out that Tim’s wonderful girlfriend also had a CSF leak — except she had hers for years prior to diagnosis. Her leak was spontaneous, making it much harder to locate, and she ended up needing surgery to fix it. She was a beacon of sanity during these early months, and she added me to a CSF group on Facebook with several thousand leakers from around the world.

I see no reason why this cow shouldn’t contribute to my rationale for attending a conference.

In the Facebook group, I learned about people’s tips and tricks for trying to “self-heal” so I could allow my own body to seal up the holes from the lumbar puncture with enough rest and limited movement. With time, I realized that sealing wasn’t happening and I started to research next steps. The problem was, the CSF leak trapped me in bed. Any upright time resulted in my brain lacking sufficient cushion due to the leaking CSF fluid; upon standing it felt as though my brain was being sucked down into my spine. I spent hours and hours of reading, feeling less hopeful by the day.

As if a simple CSF leak wasn’t sufficient, I had connected issues that arose from the leak. Excruciating nerve pain, a new, sudden reactivity to foods I had no issues with before, muscle twitching, and a whole host of unpleasant other things that I won’t bore you with right now. Suffice it to say that CSF outside the dura mater, the membrane that protects the brain and spinal cord and keeps the CSF from coursing around willy-nilly, felt very toxic to the rest of the body. Other leakers I spoke with reported similar issues. The nervous system is deeply affected, and my body barely felt like my own.

Concurrently, there was a lot of shock and grief. I was supposed to be hosting readers on food walks in Oaxaca, but instead I was in a lot of pain, more and more deconditioned by the day. From people I spoke with and case studies I read, several months of leaking meant sealing the hole(s) could be more complicated than a simple blood patch.

Leakers in Canada urged me to head to a specialty centre instead of attempting to pursue treatment domestically. American leakers even said they wished they had gone straight to one of the specialty centres instead of their local hospitals. And given that Canadian doctors had already claimed I had a migraine instead of a CSF leak, I didn’t need much convincing. The problem was, with ten years of nomadism, I had no residency or main doctor to refer me. I had to find the strength to get creative and find a way for the centre to take me on.

What followed was some of the most difficult months of my life.

I was lying down for 23 hours out of 24 in a day, waiting and hoping that Duke would agree to see me. The pain was excruciating moment to moment.

I felt waterlogged with sorrow.

I thought about how to share the sheer futility of what waking up felt like without sounding dramatic, but there truly is no way. Those beginning few months sapped any joy for life that I had out of me, and I would open my eyes in the morning wondering what the point of fighting was.

I couldn’t put on my socks for months, or bend, or twist, and my next steps were a swirling limbo of administrative papers and MRIs.

I saw life through a prism that only showed me extremes.

Sunset in Montreal during a cold autumn evening in November.

During those months, what kept me afloat was my parents, a wonderful neighbour and her fluffy white cat, support from all of you, and the constant stream of “just checking in!”texts from a handful of closest friends. These friends were a bridge to a state of sanity that felt far out of reach. They reminded me daily of all the (occasionally crazy) things I did fight for in my life. When I simply replied that I couldn’t formulate words anymore, they’d always hold space for my sadness.

North Carolina for the First Time

We all knew was that Duke seemed to be the best in the business for patching spinal leaks. So I tried to put what little energy I had toward fighting for the MRIs I needed from the Canadian side in order to be considered for treatment. Thankfully my stubbornness paid off, and they agreed to take me on in early December. My mum and stepdad, who had already fetched me in New York and then fed me and changed my socks for months, immediately volunteered to drive me down to North Carolina. Laying in the back seat and staring out the sunroof during several painful days gave me plenty of “what ifs” to think about. By the time I got to Duke, I was shaking with exhaustion.

I may write more about the patching process, as well as things I wished I knew ahead of time, as there are many.

The salient points are: the first and second round of patches did not work. The third did, and threw me into agonizing “rebound high pressure,” where the leak was sealed but I had excess CSF fluid since my body was so accustomed to leaking. Then, two weeks into being sealed, I sat a little too heavily and tore through my healing.

The rollercoaster of highs and lows from this experience was itself a foreign, polarizing spectrum of emotions. From not knowing if the patching worked, to navigating high pressure, then adjusting medication to try and stabilize pressure, followed by the crushing knowledge that I was back to leaking after I sat too heavily — it was all too much. I was so incredibly careful with every single movement I made, and a small slip was all it took to be thrown back to square one.

I ended up needing four rounds of blood and glue patching at Duke. This involved injecting the blood and glue into my epidural space, spread along twenty-two targeted patches total. The jaw dropping part of this entire CSF leak experience is that it’s very difficult to know exactly where to inject. For iatrogenic leakers like me, who got a lumbar puncture or epidural or injection, they have a general idea. Yet it still took several rounds to get me sealed. The initial spinal tap was not done with fluoroscopic guidance, and there were multiple attempts. In some cases, the needles go through to the anterior side and the patient requires a 360 degree patch — something Duke pioneered, and I received.

(I won’t go on because I realize this is already fairly technical, but there are also spontaneous leakers where they blow a leak in their dura simply living life. These patients often have an underlying connective tissue disorder that makes their tissue particularly weak. Because MRI and CT imaging is not yet sensitive enough to easily show smaller leaks, it remains very difficult to diagnose these leakers and/or know where to patch. It often takes them years and years of misdiagnoses before they are able to get treatment for a CSF leak. These spontaneous leaking patients are a big percentage of Duke’s CSF practice.)

Me, in my llama rainbow shirt — a gift from my friend Honza — right before my first patch at Duke

The entire CSF leak team at Duke Radiology was extraordinary, and often work together for challenging cases. I tipped into that category following patching round two, and was impressed with how they each consulted each other and were transparent about the process of how they’d do the next round of patches. I absolutely cannot speak highly enough of my doctor. He was compassionate and kind, but also willing to answer my many questions. He still checks in once a month to see how I am doing. He gave me more faith in the medical profession after feeling so disillusioned by my treatment in Montreal.

Slow and Steady Wins the Race

After the fourth round of patching, it wasn’t clear whether I was sealed. I was in a cycle of having leak symptoms and laying flat, then propped up with higher pressure symptoms, feeling like my head was going to pop off my neck. Rising above the snarled periphery of very difficult facts proved to be a challenge. I knew I could not do fibrin patching again, since it almost killed me. Blood patching alone, the doctors said, often took multiple attempts — and I had already tried four with fibrin. Without an exact leak location, surgery would prove a difficult sell to a surgeon; they’d have to figure out where to cut in. All I knew was that my body was very tired and very sore, so I tried my best to shelve future treatment thoughts and assure it that I was paying attention. My friend Shannon patiently talked me down from my ledge of fear several times during the post-patching weeks in early February.

It wasn’t until early March that my symptoms evened out. I decided that I would start walking on March 1 regardless of how I felt, but in late February I still wasn’t sure what was going on. After patching, I spent most of my days meditating, visualizing my body’s healing, and reading. Vipassana meditation proved very valuable, as did other meditations I’ve tried over the years. Throughout, the focus is on a ‘moment to moment’ scale. When all of your moments are strung together with a tightrope of pain, however, seconds feel like hours. It took constant vigilance to tirelessly reroute my thoughts and stay in a place of possibility. I fought myself on the facts that augured failure, and the hum of dread that sucked me back into a spiral of ‘what ifs’.

By early March, my dad and stepmum were taking care of me in Florida. On March 1, I walked from their house to the end of their street, a few houses away. I came back exhausted. Every day, I forced myself a house further. By the end of the week, I made it to the stop sign. And by mid-March, in what felt like a miracle, I was walking an hour a day. The walks came with a lot of pain, but without the “brain sag” feeling that I felt for five months when leaking.

In my determination to quiet my mind, I’ve been able to listen to my body. In the past, I’ve pushed my body past exhaustion. Now, when it says to stop, I stop. There is a difference between adding an extra house on my walk and tipping into a deep weariness. I struggled to differentiate between the two over the years, but the high stakes during this journey have proven an excellent motivator to get better at listening. This means taking things very slowly, much more slowly than a Jodi would have done during the magnetic, vivid intensity of these last ten years.

I can’t complain with views like these.

The Gift of Surrender

When I checked into Duke for my 4th round of patching, I was no longer nervous for the procedures. I thought I knew exactly what to expect. The blood patches were painful but straightforward. I even knew the nurses by name! But round four veered far off-script when I had an allergic reaction to the fibrin glue and went into anaphylaxis. Fuchsia from head to toe, my heart racing, eyes swollen shut and throat beginning to constrict, I received IV steroids and then an epinephrine jab in the leg.

I’ve never needed to carry an EpiPen or had allergies before. The experience of anaphylaxis was both surreal and scary, but I am sharing for one main reason: in the midst of all the commotion, I felt complete calm. Though my body was shaking wildly from the epinephrine, my mind was steady.

Later that day, my doctor asked me if I was calm due to shock. But it wasn’t that at all. I felt deeply at peace with the prospect of dying.

I felt no big regrets, only the small nagging ache of specific time wasted that I wished I could undo. I pursued a life that excited me, and I built a business I loved. I stuck to my standards and wrote pieces I was proud of. Somehow, these things brought in an incredible community of readers who supported my work and found value in it. Of course I preferred to live, but if this was the end, I was ok with that.

At the end of last year’s post, I wrote that the lesson for that year was one of acceptance. After almost a decade of being a digital nomad, I settled down in Oaxaca and put down some roots in a delicious city I loved.

As with almost everything else in this tale of unwitting transformation, acceptance teed me up for this year’s fundamental message: surrender. When everything that makes sense distorts into a haze of senseless confusion, all you can do is let go.

It took many months for me to get here.

First, the disbelief. Then, as I understood more of what had happened to my body and the limitations many have, even when healed from a CSF leak, more grief. “Ultimately there’s no escape from living with uncertainty, for anyone,” says The Atlantic. There’s no rocket science there. But what happens when the not-knowing involves every aspect of your movement and life?

Many of the CSF leakers who had a hard time getting sealed, or re-leaked months or years later doing something seemingly innocuous. They blew a leak in their dura doing downward-facing dog during yoga, or when the plane re-pressurized upon landing. Or leaning down to pick up some laundry. Some never get sealed at all.

For now, there is no bending, lifting, or twisting. “Maybe forever!” jokes a fellow leaker, and as with any morbid humour, there is some truth. Who knows. None of us knows much. After all, life is essentially chaos and our personalities dictate where on the “exhilarated to terrifying” line we fall to handle the disarray.

My current not-knowing is so disproportionate, so definitive. Regardless of what happens, I will never be able to move without consciously thinking of potential damage. I can’t risk it. And I will never be able to live the life I led before. That’s not to say I can’t build a different, good, life with what I have now. I’m working toward building a different version that can bring me joy in new ways.

But there remains a great deal to process and grieve within the very eventful last seven months, as things have irrevocably changed.

***

I reread Viktor Frankl’s book Man’s Search For Meaning during these difficult months. Frankl’s time in Auschwitz led to his development of logotherapy in his psychiatry practice, but the book delves into his theories of why certain people managed to survive the Nazi camps. Frankl saw life as a quest for meaning, found in work, in love, and in courage during difficult times. Among his beliefs was that suffering itself is meaningless, but we give suffering meaning by the way we respond to it. Or, as Harold S. Kushner writes in the introduction to the latest version, that “forces beyond your control can take away everything you possess except one thing, your freedom to choose how you respond to the situation.”

Instead of thrashing around in grief, I’ve chosen to focus on the gifts that have come out of this very complicated year. With these facts, things could have been a lot worse. Instead of being confined to isolation, I have you to walk this path with me. My community around the world raised their voices and opened their pocketbooks to keep me afloat when I couldn’t manage it. You respond to my progress walks on Instagram, you cheerlead every update, and your birding skills helped me identify the beloved marsh hens that I fell for during this recovery.

Several of you have said you will be pursuing a diagnosis for CSF leaks based on the symptoms I shared. Others wrote to say you were doctors or anesthesiologists, and while you were trained to know CSF leaks, my story helped remind you of the risks. When I say community, I mean everyone. Family. Friends. Readers. Travel bloggers. Parents of travel bloggers (the amount of notes from parents of travel bloggers has been astounding and beautiful.) Strangers.

I’m lucky because you’ve helped me feel like my work matters. You’ve helped me remember why my life had meaning. And even if I can’t go back and do everything I used to do, I still have my words.

Getting to surrender wouldn’t have been possible without my close friends. There are several who stepped up, but I wouldn’t be here without my sister-from-another-mister Shannon. You may know her from my 2011 winter in Chiang Mai and many subsequent misadventures. She happened to be in Virginia when I got to Duke, a mere four hours drive away. Thanks to her flexible schedule and ability to work anywhere, I was able to stay near Duke and get the treatment I needed over the course of many weeks. She not only drove me down from North Carolina to Florida, but stayed with me for over two and a half months, and shouldered the exhausting task of taking care of me while managing the many, many nights of tears.

Shannon from A Little Adrift, and me, in North Carolina. I could not have gotten through these months without her.

In my case, I did spend time mired in the unfairness of the situation, and scared of what could go wrong next. But what turned things around for me was the simple decision to change how I responded. I’m not perfect, and I fail at it many times a week. But that choice still exists, every second of every day, to choose hope instead of a fake certainty of fear.

It took a complete unraveling of my life to ante up on possibility.

Despite the stats that say many people leak and re-leak again when their first leaks are difficult to fix. Despite the moment to moment pain that is my present. It doesn’t matter, because truly we just don’t know what’s possible.

There was a quiet, twisted grace in that surrender to possibility, a gift I never expected.

What’s Next for Legal Nomads?

My friends, I do not know.

I still want to write, and I’m grateful that I have Legal Nomads, where I can do so. I still have many celiac guides to put up. I have a course about storytelling I was planning to launch. And so many stories about Oaxaca and Day of the Dead, about the history of different foods, and photos from around the world.

The beauty of a location independent business is that it exists wherever there is wifi. Whether or not I will be able to travel, however, is very much up in the air. This will be something I take one day at a time, just like my healing.

It is this business that gave me a full shot at healing. The ability to stay near Duke as needed. The friends who also led flexible lives and could come to help out. The celiac cards that sell even though I’m not online. The fact that I don’t need to file for disability or worry about losing my job. I have plenty to worry about in terms of stability and ability to work, but it’s a lot less stressful than had I still been a lawyer.

There is plenty of talk about digital nomads, and more and more mainstream news pieces covering the movement. Most interviews point out how freeing it is to move at will, and for me doing so while forging great, lasting friendships has made the last ten years an incredible ride. But the flipside is the flexibility when life goes awry, something I thought of but never had to exercise with such impunity.

One Day We Will Have a Party Together

The flowers in this post’s header photo are cockscomb celosia, my favourite flower in the world. I discovered them years ago, and loved that they looked like tiny brains. To me they symbolized resilience and wonder, and I often bought them in New York during my lawyering days. I fell for Saigon in a heartbeat, and clapped my hands with absolute glee when I found out that my beloved flowers were a mainstay of the lunar new year, Tet. In Oaxaca, the second third city I fell for, I learned that they were an important component to Day of the Dead.

(If you’re wondering, the second city I fell for was Lisbon, and though I planned to move there Oaxaca stole my heart in the interim.)

People tell me that these flowers symbolize courage and boldness. I was drawn to them for their quirky shape, but after the last seven months I feel courageous, too.

After traveling to places during military coups, getting sick along the way as travellers do, getting into accidents, and so much more, it was a simple medical procedure in New York that brought me down.

The stubbornness that kept me going during the shadow days of long term travel helped keep me afloat here. And the community I built along the way took over when I just didn’t have the energy.

April 1, 2018. I took this after a short walk, marvelling at what an intense ten years it has been.

I still plan to have that party one day. It doesn’t matter how long it takes. All of you who want to attend and celebrate with me, should. A commemoration of what others may see as unconventional, but now also a nod to resilience. To the support we can afford each other when shit gets real. To remembering that while we sometimes seem very different from one another, deep down we all share so much.

It feels surreal that this all happened during the past seven months. Life can change with one small misstep, or a series of big ones. I couldn’t have written this movie-like script if I tried, in my most creative flow state. It’s just so crazy, and even with this extensive post, I haven’t shared the full extent of what has gone wrong.

It’s been one deeply tangled web of a year, all sharp angles and fear. Even the small events seem almost excessive in their depth and effect. But I’m still here, and every day I decide to find a reason to smile. That alone is celebration enough for me.

-Jodi

The post The Spinal Tap That Changed My Life appeared first on Legal Nomads.

The Spinal Tap That Changed My Life published first on https://takebreaktravel.tumblr.com/

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tripile · 6 years

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The Spinal Tap That Changed My Life

On April 1st, I went for a short walk to watch some Florida marsh hens rustle through the reeds and cackle at the wind.

The date marked one month since I started walking again.

I sat there, awkward and sore on a tiny bench facing the water, fighting back tears. Despite a newfound infatuation with the local wildlife, this was not where I planned to be.

In a field of marigolds during Day of the Dead preparations outside of Oaxaca. This picture was taken near Zaachila.

It All Began With a Spinal Tap

The divergence of fates — the Jodi that stayed home, versus the one that went to the ER — is very stark.

Through all of the subsequent treatments and uncertainty and pain, my belief remains that it would have been worse had I remained in the apartment that night.

A Winter of Extremes

I see no reason why this cow shouldn’t contribute to my rationale for attending a conference.

What followed was some of the most difficult months of my life.

I was lying down for 23 hours out of 24 in a day, waiting and hoping that Duke would agree to see me. The pain was excruciating moment to moment.

I felt waterlogged with sorrow.

I couldn’t put on my socks for months, or bend, or twist, and my next steps were a swirling limbo of administrative papers and MRIs.

I saw life through a prism that only showed me extremes.

Sunset in Montreal during a cold autumn evening in November.

North Carolina for the First Time

I may write more about the patching process, as well as things I wished I knew ahead of time, as there are many.

Me, in my llama rainbow shirt — a gift from my friend Honza — right before my first patch at Duke

Slow and Steady Wins the Race

I can’t complain with views like these.

The Gift of Surrender

Later that day, my doctor asked me if I was calm due to shock. But it wasn’t that at all. I felt deeply at peace with the prospect of dying.

It took many months for me to get here.

But there remains a great deal to process and grieve within the very eventful last seven months, as things have irrevocably changed.

***

Shannon from A Little Adrift, and me, in North Carolina. I could not have gotten through these months without her.

It took a complete unraveling of my life to ante up on possibility.

There was a quiet, twisted grace in that surrender to possibility, a gift I never expected.

What’s Next for Legal Nomads?

My friends, I do not know.

One Day We Will Have a Party Together

(If you’re wondering, the second city I fell for was Lisbon, and though I planned to move there Oaxaca stole my heart in the interim.)

People tell me that these flowers symbolize courage and boldness. I was drawn to them for their quirky shape, but after the last seven months I feel courageous, too.

The stubbornness that kept me going during the shadow days of long term travel helped keep me afloat here. And the community I built along the way took over when I just didn’t have the energy.

April 1, 2018. I took this after a short walk, marvelling at what an intense ten years it has been.

-Jodi

The post The Spinal Tap That Changed My Life appeared first on Legal Nomads.

The Spinal Tap That Changed My Life published first on https://oceandreamblog.tumblr.com/

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isaacscrawford · 7 years

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Valuing Value-Based Payment

By ANISH KOKA, MD

The idea that payment should be linked to the value lies at the heart of most of the transactions we participate in on a daily basis. Yet, value based payment in healthcare has seemingly run into very rocky waters as of late. It is at this precarious time that stakeholders representing large employers and other purchasers of health care’ took to the Harvard Business Review to write in defense of value based payment reform. The authors pepper their article with cherry picked ‘successes’ of the value movement and urge the country to forge ahead on the current path. The picture that comes to my mind hearing this is of the Titanic, forging ahead in dark waters, never mind the warning signs that abound.

One of the authors of the paper – Leah Binder – is President and CEO of the Leapfrog Group – a nonprofit organization founded in 2000 dedicated to triggering ” giant leaps forward in the safety, quality and affordability of U.S. health care by using transparency to support informed health care decisions and promote high-value care”. This is a laudable goal, but it is very much predicated on the ability to measure value. A perusal of the Leapfrog group’s homepage notes a 1000 people will die today of a preventable hospital error.

The warning is explicit – choosing the hospital you go to could be the difference between life or death. I have spent some time in the past about the remarkably weak data that lead to an estimate of 400,000 patients dying per year in hospitals due to medical errors, but suffice it to say the leapfrog group subscribes to the theory that of the ~700,000 deaths that happen in hospitals per year, half are iatrogenic. With no exaggeration, I can say firmly that those who believe this are in the same company as those who believe the earth is flat. If the home page of the Leapfrog group, examination of their claims in their HBR article merits additional concern.

The first example proferred relates to a reduction in venous thromboembolism or blood clots acquired in hospitals after a government agency (AHRQ) began tracking this from 28,000 in 2010 to 16,000 in 2014. Binder et al., note that this means 12,000 fewer patients had ‘potentially fatal blood clots’. Ostensibly this reduction in clots was due to reporting of these events and a Bush era rule from 2008 that put hospitals on notice that Medicare would no longer be paying for Hospital acquired Conditions (HAC) like clots after joint surgery. But how exactly did hospitals achieve these impressive results? While the hope is that hospitals achieved these reduction by better attention to therapies that prevent blood clots, the reality is somewhat more complicated.

For starters, orthopedic surgeons grew wary of searching for blood clots postoperatively. The surgeons weren’t necessarily wrong to adopt a newly parsimonious approach. Easy access to ultrasounds and cat scans meant many patients ended up diagnosed with small clots in the calf or in the small arteries of the lung that were unlikely to cause the patient harm. It was not lost on surgeons that these clots were unlikely to be fatal to the patient, but were potentially fatal to the hospital and surgeon’s bottom line.

Yet another way of reducing hospital acquired conditions is to improve the diagnosis of blood clots that patients carry with them on admission. It is clearly unfair to penalize hospitals for patients who present with a blood clot, so improving the diagnosis of these patients is important. Unfortunately, too much of a good thing is usually too much of a good thing. Some institutions actually began performing screening whole leg ultrasounds on all inpatients being admitted. The whole leg is important because asymptomatic blood clots that do develop below the knee are generally not high risk , and indeed, many may resolve spontaneously with no treatment. Worst of all the diagnostic accuracy of ultrasound falls precipitously as veins get smaller in the lower leg. In 160 medical inpatients who had an ultrasound and a gold standard venogram, the positive predictive value of an ultrasound for a lower leg/calf/distal vein clot was 50%. To reiterate – a positive result on a leg ultrasound has a flip of a coin’s chance of being correct, but it does allow the hospital to document a clot in the leg vein (also known as a Deep Vein thrombus (DVT)) as present on admission, and make any actually clinically meaningful DVT that subsequently develops not count towards the all important hospital acquired numbers. The added benefit of documenting more DVTs in your medical inpatients (as opposed to the post-orthopedic surgical patients) is that it makes patients appear sicker. This matters because another metric- the all important US News World Report rankings – are based on the difference between hospital expected and observed mortality. The higher your expected mortality, the better.

It is not even clear that the numbers, if accurate, would tell the whole story regardless. Consider the feared complication of DVT is a clot that spreads from the leg veins to the heart and causes death – a pulmonary embolism. As far as I can tell, this information is not being publicly reported, but data for the incidence of pulmonary embolism is available from administrative claims data. One would think that the reduction of DVTs should have lead to fewer PEs being diagnosed. Unfortunately, very little in health care is predictable or intuited. The incidence of PE’s has actually dramatically increased since 1998. Our ability to find clots in the lung dramatically improved in 1998 with the introduction of MultiDetector Computed Tomography. This would be ok if finding more PEs results in improved patient outcomes, but it has decidedly not. Mortality from PE is stubbornly unchanged from prior to 1998 to now, ostensibly because we simply got better at diagnosing PEs that were never going to bother the patient.

The point of this long discussion on the blood clot example Binder et al raised is to demonstrate the absolute utter meaninglessness of the metrics highlighted as an example of success. I am relatively certain we can ‘fix’ the overdiagnosis of PE problem by publicly reporting PE data. I am sure the hospital/physician administrator class will respond with some non-granular edict that will strip the physicians ability to order an MDCT for PE. As history would suggest, fewer unneeded CTs will be done, but fewer needed CTs will be done as well. Medicine used to advance organically from the bottom up by education and discussion informed by data. 50% fewer coronary stents are placed in the elective setting over the last decade not because of public reporting or leapfrog, but because the data brought the frequent practice by cardiologists into question.

Binder et. al go on to highlight the benefits of transparency in improving outcomes in New York state patients undergoing cardiac surgery. Apparently, public reporting of outcomes in cardiac surgery patients in New York lead to advances in cardiac care that saved lives. Its a remarkable statement because there is ample data to suggest that lower mortality with public reporting in this setting related to lower surgical volume driven by a fear of operating on sicker patients.

One is left to contemplate the credentials of these arbiters of value in health care. How can we possibly evaluate those who have anointed themselves as gods of value? Data is no longer sufficient to rebut the movement because the data no longer fits the narrative. It should be somewhat discomforting that this chart depicting the United States as outlier when it comes to dollars spent for life expectancy achieved is essentially unchanged since the Leapfrog group came into being in 2000.

The value based movement as currently envisioned has failed. Apparently, a maze of third party payers and third party consultants don’t actually make healthcare better or less expensive.

The authors seem to understand the weakness of their arguments by ending their article with a warning about returning to the fee for service that brought us to the abyss. Fee for service is the culprit that has produced ‘waste, heavy cost, and quality of care issues’, after all. This is all true, but do the authors really believe that the fee-for-service system that existed brought no good with it? It is certainly true that the last half century produced a health care system emerged that was incentivized to treat patients. Great waste arose as a result. But this is the same health care system that finances cardiologists on call to open up your blocked artery within 90 minutes of where you currently sit. It is also the same system that refused to give up on rare, fatal diseases in children when other systems have. It should be lost on no-one that the value based movement has morphed into a tool to strong arm physicians into giving up on those it is cost inefficient to treat. Burned by the managed care experience, third party payers have found a way to make physicians the deniers of care – employ the vast majority of physicians, and tie financial reimbursement to value based outcomes that incentivize doing less regardless of patient need. A generation of physicians now emerges with an allegiance to populations and health systems, so it is no surprise that a good physician today is one who can provide a disney land experience to the consumer, all the while keeping length of stay in hospitals low, while documenting all possible diagnoses in EPIC to maximize patient expected mortality and maximize billing.

The best thing a customer with a sick heart who made the mistake of being admitted to the hospital with heart failure can do in 2017 is die. Mounting evidence recently lead to leading heart failure physicians to write emphatically that hospital readmission reduction program is associated with fewer readmissions and more deaths.

Waste may abound in our current health care system, but the strategy employed by the value based seers exacts a heavy penalty on our sickest and most vulnerable. Ideologues should consider that we indeed do have a health care system that resulted in too many heart transplants, but is it really better to live in a world where deserving patients don’t get a heart transplant?

This does not mean to say that massive waste does not exist in our health care system. As an example: Hospitals have become massively bloated entities that innovate by hiring patient experience officers, giving patients ipads, paying hundreds of million dollars for EHRs that make physicians less productive, and hiring an army of hospitalists to check boxes and reduce length of stay. I do mean to say that the current plan to give the nations dollars to insurance companies, health care consultants, and non-clinician administrators and expect an intelligent path forward is improbable.

A more honest path appears courtesy of true mavericks like the founders of the Surgical center of Oklahoma that accepts no third party payments but delivers care for elective surgeries at massive discounts relative to regular hospital systems. Any surgical complications are covered free of charge. Patients traveling from a distance have their airfare paid for and are put up in a hotel. Sounds like patient, centric value based care to me. How could this possibly happen without the Leapfrog group being involved?

I realize that the Surgical center of Oklahoma does not have to keep an ER open 24/7, and doesn’t have to pay for interventional cardiologists to be available constantly, but there is ample evidence to suggest the dollars being spent in hospitals are being spent on a variety of goods that have nothing to do with patient health.

Is it a pipe dream to believe that in the wealthiest country on earth we can have a robust private system that can deliver us CAT scans for $400 and still manage to provide a support system for those financially destitute? We currently find ourselves hostage to a health care system that has convinced us that health care is unaffordable, and that keeping the lights on in your local hospital requires being paid $50 for an ECG. The solution has been to create a whole bureaucracy of measurers that have just as much expertise at valuing Big Macs as they do healthcare. The evidence we didn’t need to generate now tells us we don’t measure value well, and it has not resulted in a net reduction in cost or any significant increase in real value delivered.

I would suggest we refocus on the problem at hand. We can start by labeling the current value based movement with the cliched yet appropriate moniker: #FakeNews

Article source:The Health Care Blog

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