#That's why I have to see a pulmonologist every four months. | Explore Tumblr posts and blogs

donnerpartyofone · 6 years ago

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TL;DR - i finally got an MRI for my ear, which has been fucked up and constantly clogged since september and developed tinnitus in february, and apparently, supposedly, there is nothing wrong with it. so there’s nothing to do about it. so just like with my eye and my skin and my lung and my etc, i have a problem that i can’t do anything about, that i can’t even get the satisfaction of a diagnosis for, and i’m so pissed off about how much time and energy i’ve spent trying to improve things for myself when there was absolutely no point in doing so, that i just want to set my body on fire to really show it what i think of it.

i’m so, so mad. the last couple of months have been almost nothing but wall to wall doctor’s appointments, and with zero exception, they have all been a complete waste of time. it hurts because my body tortures me, of course, but it hurts worse than that because i convinced myself that i HAD to do this, that it was Mature to face my fear of doctors and generally the Right Thing to Do, when i absolutely didn’t want to do any of this at all.

i suffer a lot from an internalized impression of myself as being lazy, defeatist, and dramatic. it comes from a lot of places. i grew up in an environment where i was the only open depression sufferer, under one parent who definitely considered depression to be an antisocial behavioral problem, to be treated like any other shallow cry for attention. i also grew up in an environment full of obvious talents, all of whom would go on to be published, or even public figures, and not to be a complete asshole, but the idea that “you can do anything you put your mind to” is kept alive by people who have the baseline talent necessary to succeed at things they put their minds to. if you subscribe to the idea that success requires nothing other than commitment, then the implication is that all failure is a matter of laziness, petulance, and defeatism--never lack, never inferiority, never ordinariness. on top of all this, my personal interests--horror, sexually graphic media, comics, underground music movements, the usual roundup of morbid or antisocial cultural items--were considered pretty much...well, not very adult. so what i’m coming to is that if i can’t prove my adulthood in any way that has to do with who i am or what i’m capable of, then the very least i can do is Be Responsible. (and of course i get made fun of all the time for being an uptight rule follower but JESUS FUCKING CHRIST, LITERALLY WHAT ELSE AM I SUPPOSED TO DO)

one of the main ways you can Be Responsible, if you have the means that is, is to look after your health. the world is full of icky, boring, degrading, depersonalizing, and occasionally painful tasks that are necessary to keep the societal cogs turning. if you can’t make art or have ideas or be beautiful or become an athlete or whatever, you can still show that you’re alive and generally hygienic by going to the dmv, voting, showing up for jury selection, or going to the doctor. you can still grasp the final shred of integrity offered to you by doing things no one wants to do, but that we know are necessary for the vitality of self and society. so i’m extra good at doing stuff that people my age frequently shirk--the dentist appointments, the doing your taxes the second the forms come in, etc--because they’re sort of the only things i can do that prove that i’m not, you know, a complete piece of shit.

so this year, at the start of february, i decided i was going to get a real handle on my health. i’d been going to doctors for various things already, of course, even though it was pretty much never satisfying; the only thing i can think of that ever got fixed or explained was the pathological growth of scar tissue over my eyeballs, which required some pretty fucked up surgery. but at this time, i had a lot of problems building up. my left eye developed a small spot, and a constant glare that borders on having double vision. my right ear remained completely stuffed up since i had a cold last fall, and began to ring constantly at the end of the winter. my right lung has felt alarmingly tight and weak for...years actually. the right side of my face is constantly beet red, like i go fresh with somebody’s wife, and i can see how it’s thickening and bending my flesh all out of shape, which rosacea will do progressively and incurably throughout your entire life. i decided that instead of quaking in fear of doctors, and also in fear of wasted time, i was going to straighten my back and go nip this shit in the bud. after all, when you’re miserable but not doing anything about it, people kind of hate you, and then you have THAT problem on top of all your real problems. sometimes you gotta give the people what they want.

so how did it all go?

my skin: since no insurance company considers rosacea a medical problem, which is actually complete fucking bullshit, i decided to take matters into my own hands. i researched what rich people do for their uninsurable problem, and decided to use my recent (traumatic) inheritance to take care of myself. i tried three different preposterously expensive topical treatments that i was told are a “magic bullet” for rosacea, and all of them made my face blow up like a fucking macy’s day balloon. then, after four rounds of extremely expensive, painful and scary laser treatments, i had absolutely no results other than that my face was actually MORE reactive for about a month after the last one. i’m fucked.

my eye: according to my optometrist and ophthalmologist and corneal specialist it’s “just” regular scar tissue from my terrifying surgeries, not the pathological scar tissue that i had to have removed via terrifying surgery and localized chemotherapy. this kind of sucks because it means i can’t just get it removed again, but at least there is a slight chance that my body will reabsorb it like regular scar tissue. (oh yeah? and what’s my luck USUALLY like?) my only “treatment option” is to use eyedrops four times a day, which is actually extremely uncomfortable, and which pretty much means i’m just not allowed to wear makeup ever again.

my lung: after two rounds of clear x-rays and a breathing test that only detected slight asthma, through two GPs and a pulmonologist, nobody has anything to say about why i have this chronic breathing problem. there’s some indication that it might be a “muscular-skeletal problem” that’s putting pressure on the one lung, so i guess i need to add a physical therapist or something to my endless list of specialists.

my ear: two or three trips to urgent care (i forget how many now), two GPs, an ENT, a fucking weird hearing test, and an MRI have done absolutely nothing for me. after a cold with a sinus/ear infection last fall, my right ear remained permanently slammed shut; if i pop it, it closes back up in seconds. i do not have the same problem with the other ear, it is clearly a physical problem. in february, my ear began to ring agonizingly and has not stopped for a second. in all this time, i went through round after round of antibiotics, antihistamines, anti-inflammatories, steroids, etc. nothing works. no one can see any type of problem. apparently i have the option of electing to have a tube surgically inserted into my ear, although i can’t quite figure out what the risk factor is, both for my tinnitus, and for my hearing in general.

and OF COURSE, depression: part of the stigma against depression is that it’s a choice, somehow. like fresh air and exercise and looking on the bright side are so effective that if you’re depressed, it must be because you LIKE IT THAT WAY, because otherwise you would use these simple and free cures for your so-called illness and it would be all over, right? anyway i kind of hate being depressed, and i’ve been working my fucking ass off trying to deal with it. i see a nutritional therapist (a licensed psychiatrist) who prescribed me a number of nutritional supplements that i do think help, but they are unthinkably hard on my stomach. i tried lexapro, and it made me feel so abnormal, and cut into my general quality of life so badly, that i didn’t keep it up. i tried a generic version of wellbutrin, and it made me violently sick to my stomach, and caused my ringing ear to ring deafeningly for days after a single dose. the brand name version wasn’t much better. then i tried lamictal, and felt totally great AND NORMAL for like a week, and then i got the rare and potentially deadly lamictal rash. sometimes this just indicates a basic allergy, and sometimes it indicates Stevens-Johnson Syndrome which causes something called TOXIC EPIDERMAL NECROLYSIS WHICH REQUIRES LONG TERM HOSPITALIZATION TO GROW YOUR SKIN BACK. i had to deal with this on the day of mandatory final exam presentations in a class where i was already struggling, and this was one of the darkest days i can recently remember. after this, my psychiatrist tried to prescribe me abilify, but after i started to hear about the side effects and personal testimony of certain friends, i decided i couldn’t handle it. very possibly, i just cannot be medicated for depression, unless i’m willing to sacrifice everything else around the depression too.

...this is all pretty much a retread of an experience i had for a few years, a few years ago, where i was having these abnormal paps, so they constantly had to drill painful core samples out of my cervix to keep checking up on the NOTHING that was going on in there, until one day they were just like...uh your tests are coming back fine now, and we don’t know why they didn’t before, and it just doesn’t matter, you don’t have to do this anymore PLUS you could have just been sitting on your couch jerking off this entire time and it would have done exactly as much good as this cycle of being humiliated and tortured by doctors in a while that leaves you curled up in a ball sobbing every time. i’m still pretty pissed off about it, if you can’t tell.

so like i don’t know why the fuck i’m doing all this. i don’t know why i do anything. nothing fucking comes from even my most herculean effort except a relentless sense of mystery that is starting to border on satire. i don’t know why i have so many problems. i’m 38 years old and i’m in ok shape. i don’t have generalized immune issues or anything. my doctor said i have some of the best lab work she’s ever seen. why the fuck does all this shit happen to me. i’m trying so fucking hard to enjoy my life. it’s hard to be in mental and physical pain all the time, the latter for absolutely no coherent reason. i mean i’d rather have a bunch of random problems than like, lupus or MS or something, for sure, but everything that happens to me is so meaningless and arbitrary, i’m starting to get that feeling like god hates me. it’s also hard to have the constant feeling that so many people think that failure to enjoy life is exclusively a matter of “not trying hard enough”, being a pill, looking for attention. i don’t know what to do anymore. i’m real pissed. i think what i need is a change of philosophy, which will be a long hard road. at least i know it’s the one and only area where i, and only i, have some level of control. wish me luck.

#long post

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esreviun · 6 years ago

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extubation (2012)

for myself, five years ago.

An endotracheal tube doesn’t come out very easily. The masses of surgical tape that hold it to your face aren’t there to keep it from accidentally slipping out of you. It’s firmly in there. It climbs up from your lungs out through your mouth and clings to the inside of your throat like something with legs. No the tape is there to keep it from moving at all. Anything— the smallest shift in your position a cough moving your arm too far— can pull a little on that tube and set your throat on fire. It doesn’t hurt— it burns. Every four hours a nurse comes in and rolls you onto your other side “to prevent bedsores.” You want to shout at them to leave you alone. You don’t care about bedsores, you care about breathing. But they still come in every damn four hours like wardens in a jail, making the rounds. It’s worst when they change your diaper. (You can’t afford to feel humiliated that you have to wear a diaper.) They have to flip you over more than once: take off the left side, flip, take off the right side, flip, put on a new one, flip, turn you over to fasten it, flip. With each flip your throat blazes and chokes you. You squeeze your eyes shut your face pressed into that horrible dank standard-issue hospital bedsheet and try not to cry from the pain. Every day. Every night.

All this and yet when they actually remove the tube you’re terrified. You don’t want it to go. At least while it’s here, you know you can breathe— but they say that you’re probably strong enough to breathe on your own now without the ventilator. Probably?! They don’t feel like waiting until they’re sure? The nurses prop you up and get their equipment set out on the tray beside your bed. The attending makes a point of telling you: there’s a chance this might not work and you might have to be re-intubated. Just so you know. Thanks, you want to say. Thanks for paralyzing me with terror. Your bedside manner leaves absolutely nothing to be desired. She readies herself at the head of your bed and holds onto the end of the tube that’s sticking out between your chapped lips.

“When I count to three,” she says, “cough really hard.”

She counts to three.

You cough.

II.

i haven’t forgotten i’ll never forget

III.

Junior year is when bad things start to happen, things that scare you for the first time. Pulmonology appointments were just a thing you did, until now. Like any other regular checkup. You grew up surrounded by doctors and hospitals and people poking at you and asking questions. It was normal. Being disabled was normal. You would gripe at your parents after church— after some well-meaning adult told you how inspirational you were or treated you like some paragon of bravery— saying, you didn’t envy birds for being able to fly, why would you envy other people for being able to walk? Reach things on high shelves? Take the stairs instead of the elevator? It’s not a big deal. It’s never been a big deal. Until now.

It’s the summer of 2006. Your doctors want to see you. They start running more tests. They ask you to breathe into a machine. Into another machine inside a glass box. Into another machine attached to a computer. Every time your chest rises or falls it makes numbers on screens. Every time you visit, the numbers are smaller. Your specialists start throwing code words around. Decreased lung capacity. Respiratory decline. More invasive solutions. God, you pray one night in bed, tears pricking at your eyes, please don’t let me get a ventilator.

IV.

Years later in your college dorm room you will write a poem about how it feels to hook up to your ventilator after a long day, how that first perfect breath of air rushes in and transforms you. You’ll sit there for fifteen minutes just trying to figure out how to describe that moment. It will overwhelm you. Eventually you will settle for: all you have to do is sit there and let it fill you all the way up like you’re being changed from a scribble into a sound like suddenly your shape means something but it won’t be good enough. It won’t capture it. So much of your poetry over the next several years will be trying to get another person to feel ventilated. So many of your poems will be coughs.

Over the months, you shrink. September and October pass. In your high school advisory photo, which you still have today you look tiny, a massive brown striped turtleneck sweater billowing over you like you’re a sheep. When you shear the wool off of a sheep the animal underneath is thin and scraggly. When you take off your clothes, you’re skin and bones. You try to explain, to concerned friends, what your doctors told you: the less oxygen you get, the harder it is for your body to keep going. You sleep badly at night. This makes you tired. Your body works harder to keep you breathing. You burn through calories. You become bony. You can’t get comfortable in bed. So you don’t sleep well. And so you’re more tired. And so you lose more weight. It’s a vicious cycle, you say. But your doctors are going to help you break it. You have no idea how.

(You don’t say that.)

You know that to help you sleep your pediatrician suggests Tylenol PM. Every night your mom puts the little plastic cup of golden syrup by your toothbrush on the bathroom counter. You swallow it. It tastes like bitter vanilla. (You will still remember this taste in five years and it will still make your stomach churn.) You know that pulmonologists prescibe you inhalers and expensive medications to make your breathing easier. You know that they’re giving you a lot of things to make a lot of things easier. But you also know the worst part: that no one seems to be able to explain what’s happening. You hear a lot of explanations for the how but very few for the why. You wish you could sit your body down and look it in the eye and ask it to explain. It changes under your fingertips and it won’t tell you why.

Every day you come home from school a little more exhausted and put your hand on your chest and wonder why you can’t count on your lungs anymore.

VI.

i can trust in your sinew and mystery but— never quite enough

VII.

Sometimes when it’s too much you park your wheelchair in front of the wooden computer desk in the sunroom and you put in your headphones and listen to a mandolin instrumental. The same one, every time. Kneel Before Him. Chris Thile. You’ve played this song in your ears more times than you can count now. You close your eyes and focus on the notes. The mandolin takes you away.

VIII.

You’ll write another poem in a few months about how your body has fought its hardest for you your whole life. And then you’ll write another poem about how your body has been betraying you your whole life. And then you’ll write another poem about how you can’t decide which one it is. And then you’ll keep writing those poems forever.

IX.

A dietician gives you this command: Keep a journal of everything you eat. Every day. Try to eat as many calories as you can. Eat whatever you want, as much as you can hold, whenever you’re even a little bit hungry.

In theory this is the best doctor’s order ever. In practice it’s a nightmare. You have no appetite. It’s wasted away. Early in the mornings before school you eat breakfast in the near-dark of the dining room and while your dad clears away the dishes afterward you scratch ¼ waffle w/syrup, 1 sausage, 2 oz. whole milk onto the next page of the small black notebook you carry with you now in your purse. Your dad makes you eat another quarter of a waffle. It slides thickly down your throat. You can’t remember enjoying food. You try to force down the nutritional supplements— the packets of clear starchy calorie gloop that your mom stirs into your mashed potatoes or mac ‘n’ cheese, the chocolate Boost shakes that are okay, you guess just more…cardboardy than chocolate is supposed to taste. You really try. But it isn’t enough.

They weigh you in February. You can’t stand on a scale so your dad picks you up and stands on it and then the doctor weighs him alone and subtracts the numbers. You measure 4’8”. You weigh 62 pounds. Sixty-two pounds. You’re sixteen years old.

(When you’re older you’ll wonder what the look on your dad’s face was when the doctor read your weight out. But you won’t remember it. You’ll remember the backs of your knees sticking to the rubber edge of the examination table and the weight settling into your chest.)

The doctor says the words feeding tube. You shake your head. That’s not going to happen. Ever. You tell him how on the ride home from school last week you ate an entire jelly donut and it was the first time in your life that you’d ever been congratulated for finishing junk food. The doctor laughs. So does your dad. You wish their smiles would reach their eyes.

You have to go to your mandolin when you get home.

it rests on my lap, indenting the tops of my legs the smooth soft neck of it against my face my right hand gripping the far side of its body i can imagine the inside of that dark, empty body so much like mine hollow, the way the universe was before there were stars

XI.

It was important to you even before this all began, the mandolin. You’d wanted one for years. Your grandparents buy you one for your sixteenth birthday. It’s not expensive and it goes out of tune easily and you’re not very good at it. You’ll only ever learn four or five chords and a couple of clumsy strumming patterns. Your hands are a little too small and your fingers weak and soft. The callouses don’t form quickly. Your fingertips burn. But you revel in it. You’ve never pushed your body to do anything before. You dig those strings into the pads of your fingers so hard that they leave marks that last for hours.

XII.

“When I count to three, cough really hard.”

One.

XIII.

There’s an afternoon at school when you suddenly have to leave class and go and lie down in the counselor’s office because you feel dizzy and your head is throbbing and you’re so, so tired and you don’t know what’s going on. Your heart pounds. You’ve always been scared when your heart pounds. In eighth grade you remember feeling your heart racing and worrying that something was wrong with you like you might be having a heart attack or something. And when you were a sophomore you would freak out when you felt short of breath even though your parents would always assure you that it’s okay, honey there’s nothing wrong with you you’re fine. You’re just having an anxiety attack. It feels like you can’t get enough air but you can.

In five years you’ll know that some of these times there really was nothing wrong with you and you really were imagining it. But other times your parents were wrong. Other times were preludes to what was coming next. You were right not to trust your body. You never know.

XIV.

i am covered in memorials of the times you have turned against me

XV.

During the last week of March you’re home from school with a cold. You’ll remember that last day of school. You sat in the empty cafeteria with a book while it thunderstormed outside. The whole wall of the room was windows, and the rain and the dark and the silence of the trees heaving to and fro in the wind made you feel like you were sealed inside of a fish bowl Alex, one of your senior friends, sat down and made some jokes with you. Then you went home.

You’ve never written a poem about that day. Maybe you should.

XVI.

Two.

XVII.

Very early in the morning on Sunday, April 1st you wake up and call your mom into your bedroom to get you a glass of water. Your voice is faint. When she turns on the light your lips and fingernails are blue.

In the emergency room the nurses take one look at you and rush you back into an examination room where they stick a probe on your finger and read that your oxygen saturation is 60% and dropping. Someone gives you an oxygen mask. It seems to help. They think you’re falling back asleep.

You’re not. Your right lung is collapsing. You don’t have a cold, you have pneumonia. It’s spread into your bloodstream. Septic. Hypocarbic. Pneumothorax. Your body begins to shut down. Your parents are rushed out of the room.

(You will remember none of this. The only memory you’ll retain of that night will be protesting no, I’m FINE, just give me a glass of water and let me go back to sleep, Mom, it’s not a big deal, I feel perfectly fine. You’ll laugh when you remember this because you know now that oxygen deprivation can make a person confused or, in your case, a blithering idiot.)

EMTs and nurses crowd your bed. Someone presses a plastic mask over your nose and mouth. You’re long unconscious by now. They pump air into your starved lungs and outside of the room a nurse has to guide your mom to a chair so that she doesn’t pass out.

(It will occur to you long after this that if you hadn’t been thirsty that night you wouldn’t have called for a drink and woken your mom up and no one would have known that your body was suffocating you in your sleep. Your parents would have found you dead in your bed the next morning. Your whole face would have been blue.)

XVIII.

you have been warring me off of this territory since the moment i set foot on it and on the day when you win i will make sure that the last word is mine

i will be riddled with scars and i will not go quietly

XIX.

You don’t die. Remember this. You don’t die. You push your body against that hospital so hard that it leaves marks that last for years.

XX.

Three.

XXI.

actually the sword is much mightier than the pen

XXII.

No hospital room has white walls— not really— not the ones you stay in with the bad lighting and the dismal curtains and various baffling objects hung up around the bed that look like surely they must do something very important but hell if you have any idea what.

(In two months you’ll recognize them all.)

But for some reason white light is the first thing you’re going to remember. Maybe everything just seems bright to you because your eyes have been closed for so long.

XXIII.

Here is what you remember from week one:

You see your parents’ faces.

They’re crying.

That can’t be a good sign.

You drift.

And drift.

XXIV.

When you’re still sixteen still in the hospital you’ll write a poem called How To Spin Starlight. It will be the first poem you have written in months— months— and it will go like this:

the stars said “spin us” and i took a weary breath and turned the universe upside-down to draw some thread from black, black stars and spin it into glittering

It will be rubbish.

When you’re seventeen one of your best friends will tell you you don’t need the last two lines and you’ll realize she’s right. All the poem is about is being turned upside-down.

XXV.

While you lie there with a tube down your throat and a tube up your nose and a tube up your urethra and a tube sticking into your foot and a tube sticking into your hand and a tube stapled into the side of your chest and a whole handful of tubes buried under the skin of your collarbone, the Easter Bunny comes.

He visits every patient in the pediatric intensive care unit. Even the ones in medically-induced comas. He bends over your pale, prone form in the hospital bed a horrifying specter of pink plush and oversized costumed limbs.

Someday you will see a photo of this.

You will wonder who in their right mind thought this was a good idea.

XXVI.

After about a week they take you off the sedatives and you think it’s Wednesday. You burst into tears when they tell you you’re wrong. You have no idea why. Your parents try to calm you down and explain why you’re here because you don’t remember and you don’t understand. You can’t breathe. You can’t talk. You’re broken.

XXVII.

When you’re eighteen you will write a poem about your mandolin.

i am acutely aware that my horizontal wrist veins and tendons are stretched out against its vertical eight strings and imagine that with a little maneuvering they could be woven together gold and silver strings with scarlet ones

You won’t have played it for years but you’ll remember the smoothness of its body the arch of its neck the friction of its strings. In your poem you will compare it to your body: this instrument which you are not very good at controlling and which sometimes doesn’t behave.

if i lifted my fingertips a quiver might start in the deep places of that body run up along that delicate neck reach the string-tips stay there—shuddering— and release a note sweet into space

It will occur to you two years later that this is wrong. You are not an instrument because when instruments shatter they can’t be repaired. Your fingers still run over the skin of your chest and your side and your hands sometimes over bumps and indentations and rough patches and you think it would be awfully cheesy to compare myself to a poem, wouldn’t it? A poem constantly being revised?

XXVIII.

The nurse’s grip tightens on your endotracheal tube.

“Three.”

You cough.

XXIX.

You’ll try so many times over the next five years to explain what that tube feels like coming out— ripping out, more like it as though it wants to take your whole throat with it. What will be harder, though is describing what it feels like immediately afterwards: the gasping, the choking, the sensation of having lost the one thing that was weighing you down keeping you from floating away and yet at the same time feeling suddenly so unbelievably heavy. The nurses fit a mask over your nose: a C-PAP machine, to assist your breathing. It doesn’t help much. You haven’t taken a breath on your own in two weeks. You’ve entirely forgotten how. They keep saying you’re all right, you’re doing fine but you’re so scared you’re shaking and so finally in an effort to distract you and calm you down someone finds a DVD for you to watch. It’s “Grease.” It’s terrible. You watch it anyway, though because what else are you going to do? Your dad stays in the room with you. It’s dark— it’s the middle of April in Michigan and the blinds are drawn over the one window anyway— and you think, I could die here, sitting in a dark room and watching “Grease.” This could be how I actually die.

XXX.

It isn’t, though.

It isn’t.

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wheatthin1 · 6 years ago

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Rough day. Part of me says I don’t get to say things like that.

I’m feeling lonely - wanting to cuddle some guy, any guy - feeling distant from my friends I try to talk to - feeling distant from all the friends I could try and talk to but haven’t. I mean, I’ve done it before, gone down the list of contacts starting with best friends. But after the first four or so people say they’re busy or just don’t respond, I get to thinking about how everyone else has a life and then there’s me. I don’t have a life and I don’t fit into anybody else’s - not in any important or frequent way. Sure, I’ll make an appearance as some background character and it’ll be good fun until I’m alone with my own thoughts again.

I finished TMS five days ago (transcranial magnetic stimulation, for anyone who hasn’t heard of it - a depression and anxiety treatment). I won’t know for sure how much it worked for another month or two. Everyone’s confident it’ll work, so I can’t sabotage that. All my eggs are in this basket; it they break, I’ll just get new eggs.

It fees like I’m not doing enough - never doing enough. I know full well that’s just anxiety talking. I can list half a page or more of things I do every single day to contribute to my physical and mental well-being - to my recovery. Still, any off-handed comment from any rando with zero context or applicable medical knowledge can stick with me for months. I’m still plagued by shit a sleep doctor told me about my anxiety - she’s a fucking pulmonologist, she deals with respiration not mental health. That was literal years ago, now. So, all I can tell myself is I’m not doing enough. I’m just distracting myself, day in, day out. I don’t enjoy much of anything, bar a fleeting laugh or show that lets me escape from my anhedonia if only for a few seconds at a time, usually with some music that’s tied to an expected payoff, not even a real payoff sometimes.

I’m pathetic and rambling and I’m tunneled into my counselor’s words that I need to do something that isn’t an idea that’s surrounded by something that’s not my head. I need to occupy myself with something real... Instead, I yell at myself for not having done that already. It doesn’t achieve anything, but here I am, stuck in the same cycle of self-sabotage.

Fuck. It’s all I can say sometimes: fuck. FUCK. GOD FUCKING DAMN ME AND THIS SHITTY CLUSTERFUCK OF SYNAPSES I’VE CARVED OUT. My brain is just this spaghetti code of shock collars turned up to 100 and it’s all my fault that I’m like this. It’s my fault for staying in these cycles. It’s my fault because I’m not doing enough and I’m not doing the right things and I’m just not right. There’s nobody else to pin it on. Maybe anxiety has it right: “If it’s biology’s fault, then it’s really my fault.” Sure, there’s all this concrete data that my brain isn’t functioning correctly, and I de-rationalize it by saying I made it that way, then I can’t refute myself. And I cycle and I cycle over and over again. FUCK.

FUCK.

I’m frustrated. All the time. It’s always there, no matter what I’m doing or how I’m feeling, there’s this background of frustration to everything. Perhaps if my head were a clear glass, you’d see about 92% filled with clay frustration, leaving that tiny fraction to put anything else in. Then some days, I just put in some liquid frustration - you know, for good measure. Just in case I didn’t already want to rip my skull in half.

Perhaps I should read back on this and see the self-narrative I’ve lined up. I’d probably find I set myself up for failure. You know, like I am literally right now. Then I’d probably say, oh, I’m doing that, but I already knew that. So how in the ever-living fuck am I supposed to do something about it? Fukkin’ escape the matrix from the inside using only a mirror? Been there, been trying that. Still fucking trying. Self-narrative: that’s all I think I can do, is keep trying. I’m probably doing it wrong.

To someone healed, I suppose this might be frustrating, hearing this. Nobody will hear this, but still. To someone who’s come out the other side of this endless tunnel, it must look obvious. Perhaps not easy in the least, but obvious what I need to be doing to escape - to fix myself - to recover. Then again, they could tell me and it may not even work. That’s the thing about epiphanies: they’re unique to each person, so you can’t just go chasing someone else’s. I hate that, sometimes. I think, “if I’m not unique in the least and, who knows, millions upon millions of people have already gone though these exact things... why the fuck does it have to be a different way each fucking time?” They’re the same problems, yet the same solution doesn’t work, not unless it’s too general to be goddamn useful.

Fuck. I’m tired. I’m tired and I can’t even sleep if I tried. I’m frustrated. I’m bored. And I just don’t have it in me anymore to text back the friend who finally replied. Or maybe I’m just telling myself that. I’ll humor the conversation I started. I’d get too anxious if I didn’t. So, I guess that’s it for now, typing words nobody will ever hear. Here you go, Void.

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phawareglobal · 4 years ago

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Jessica Romero - phaware® interview 349

Baby Jessica Romero was born October 26, 1983 in Denver, Colorado. Jessica was born 3 months premature, weighing one pound, 7 ounces. The Rocky Mountain News crowned her the “Miracle Baby of Colorado."

Now, 37 years later Jessica discusses, her diagnosis, her outlook on a lung transplant and her commitment to pulmonary rehab.

Jessica Romero: My name is Jessica Romero. I'm from Modesto, California, and I have pulmonary hypertension. I was a preemie. I weighed one pound/seven ounces. I lived in the hospital for the first two years of my life. My parents had a life and death situation where we had to move from Denver to California in the Bay, because the air was too thin for me to live in Denver. So we moved to California. With that, I was diagnosed with PH in 2010, so 10 years ago. My parents, they did it for me, of course, just to move mountains. So, we moved to California to make ourselves better, and for my health, too. That was pretty much number one. It was heartbreaking to leave my family, but they did it for their daughter. They came with nothing, pretty much the stuff on their backs and just managed to live their life having a sick daughter. We just did what we could. First couple of years I know, I went to UCSF. This is not my first time around. Since I'm on the lung transplant list, I'm pretty familiar with UCSF, because I've been with them mostly half my life. I was three years old, I think, four years old when we moved. I could tell a difference, Denver's air to going to California. It was pretty much a good change. I could breathe better, considering I was on oxygen. I think we were there as a family since '86 to '95. In 1995, my parents and I moved to the Valley for a better change. Better neighborhoods. They ended up buying a house. They're all in a two story house, just a better change. I have this really funny nickname and the reason why they call me “Bones,” is because I was always underweight, since I was little. I have always been skinny, always a size two, weighing in the 80s to the 90s. So finally, I believe in 2007, 2008, I finally reached 100 pounds, and my family and I did the whole party thing, because I always been underweight for so long. So, finally when that did come, when I weighed 100 pounds, we were so happy. I grew a little bit. I ate more, eating meat and more vegetables and some meat and potatoes. Sandwiches, I love sandwiches. A year into when I was diagnosed with PH in 2010, about a year or two, after that, my primary doctor, which is a pulmonologist concerted that my PH was progressing pretty bad, and that I should consider to look into a lung transplant. I kind of was in denial, thinking okay, I can wait out my lungs just a little bit longer. We looked into it about, I would say 2011 to 2012. There was a lot of going back. I wasn't sure. Maybe I could keep these lungs as much as possible. I finally got on the list of 2016 of May. A lot of things go in the process, the blood work, what type of blood you have, the testing, seeing the doctors, just a whole lot of factors that go into it. When UCSF decided as a team, my whole team of doctors and surgeons and stuff, looked at my case and say, "Yeah, in the long run you will need a double lung transplant." So, when they decided, that year 2016, I was put on the transplant list. I was a little skeptical, kind of thrown back, like I don't know. In the long run, talking to people such as pre and post, now that I know, I think I'm a little bit more determined, because I am exercising and seeing them working as hard as they do, going what they're going through, makes me want to work a little bit harder. As soon as I got on the lung transplant list, I started exercising that year to build up my muscle. I've been wearing oxygen most of my life. There was a big gap for 10 years where I wasn't, because I was able to go to school, junior high and high school and some college. I wore oxygen till birth up until I would say 15-1/2. Then between 16 and I think my mid 20s is where I had that gap where I got to go to school and enjoy life and have friends and mostly enjoy life without oxygen. Then between, I would say the middle of my mid 20s is when I got diagnosed, at the age of what, 26 years old, is when I got put back on oxygen in 2010. COVID has kept me away from all the germs and the COVID stuff up there. I've mostly been indoors. I haven't gone anywhere since March, beginning of this year. So, I've mostly been indoors, painting and drawing and keeping myself busy, and exercising three times a week. That really keeps me going. So, I've been really indoors, keeping myself away from everything that's going on. If I do go out, which is only doctors' appointments, I wear gloves, I sanitize, I wear a mask. So that's what I've been doing. Back in 2000, I believe '13, when UCSF suggested to go to pulmonary rehab, I went there in between I think 2013 and 2014. I met this lady. Her name is Kelly Frederick. She's a home personal trainer. We met that year where I went to pulmonary rehab for two years. So, when I landed in the hospital three times in one year in 2016, I called her because I felt like I needed to do more to get myself better for the transplant. So, I called Kelly in January of 2016. She was just giving me tips of exercising, things you can do at home, the sit to stand, the bands work. But I was like, "I need your help. Can you come over and just teach me a couple things?" So, we took it from there and she was coming to my house at least once a week for only one hour. So, move forward to four years later, she's still with me. But of course, with the COVID, I haven't really seen her since March, but she gives me tips on a daily routine: what to do, what exercises and what workouts. I work out three times a week. She's been my trainer for the last four years. As a PH person, my goal is to spread awareness. If you could just do one little physical thing every day, it means a lot. In the beginning, the first year I can barely do 30 seconds and I was sitting down within 10 minutes. Now, four years later, I'm doing planks and pushups and more than I can ever do. But with ones that can't do it, you can never say I can't. There's always a will. You can. You just got to put your mind to it, physically and mentally. My name is Jessica Romero and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials

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michellelinkous · 4 years ago

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‘These COVID-19 wins’

When someone with COVID-19 graduates from the intensive care unit, a celebration erupts.

Nurses, doctors, respiratory therapists and nurse techs cheer, clap and play their victory song as the patient is wheeled down the hall.

The team that cares for the most critically ill patients in the ICU at Spectrum Health Butterworth Hospital draws strength from those successes as they continue the challenging work of caring for those ill with the new coronavirus.

“Even though we are cheering on the patients, that excitement and joy is also for us,” said Patti DeLine, the nurse manager of the ICU designated to care for COVID-19 patients. “We are celebrating what has come to fruition and all the hard work our team has put into getting that patient healthy again.”

It’s a tough job—caring for patients as they fight life-and-death battles against a new disease that has swept across the globe in just months after it was identified. Not everyone survives. The medical team mourns each death.

And that’s one more reason why each victory, each recovery and graduation from the ICU, feels so rewarding.

Since the first COVID-19 patient arrived in the Butterworth Hospital ICU, the medical team has seen 78 patients graduate from the unit.

They have removed 34 patients from ventilators—and watched as the patients once again breathed on their own.

“When we have these COVID-19 wins, you can see them beaming with pride,” DeLine said. “They were able to make that happen.”

Helping patients heal from this new coronavirus taps the team’s mental, physical and emotional resources. They research new developments while drawing on skills and knowledge gained treating other illnesses.

By the time the first patients with COVID-19 arrived at Butterworth Hospital, the medical team had followed developments in other areas—Italy, New York and Detroit—where surges in patients stretched the capacities of medical systems.

“Obviously, you learn from those who are ahead of us on the road in terms of what works and what doesn’t work,” said pulmonologist Stephen Fitch, MD.

“The longer you go into this, the more you learn, the more information you have—and that informs your care and what you are doing.”

Ventilator support

Although the novel coronavirus was just identified in late 2019, physicians can apply what they know from treating other patients with other illnesses, including influenza, the H1N1 flu, and the viruses that cause SARS and MERS.

Most of the patients have severe inflammation in the lungs, either from pneumonia or the inflammatory response caused by acute respiratory distress syndrome. The lungs, unable to do their job of exchanging oxygen with carbon dioxide, send less oxygen into the bloodstream—and to the organs that require it.

Doctors deliver supplemental oxygen through a nasal canula—or a high-flow nasal canula, if needed.

“If that’s insufficient, you have to use a ventilator,” Dr. Fitch said.

Patients typically are sedated as they are intubated, and the ventilator begins to deliver oxygen into the lungs.

This helps patients get needed oxygen, while also relieving them of the work involved in breathing. When oxygen is in short supply, breathing taxes the respiratory muscles—and that in turn increases the need for oxygen.

Not all ICU patients with COVID-19 require ventilator support. Those who do spend an average of 10½ days on the ventilator.

During that time, the medical team carefully monitors the patient’s oxygen level and the condition of the lungs, adjusting ventilator pressures to optimize lung function.

“As those mechanics get better and the blood parameters get better, we are continually working to wean that level of support and the level of sedation,” Dr. Fitch said.

Also as part of standard ICU care, the team provides nutritional support, occupational and physical therapy.

“These are supportive therapies, not cures,” Dr. Fitch said. “They don’t make the virus go away. But they are all treatments that we know from scientific study improve patient’s survival and help them recover and get back to baseline.”

The team also puts patients in a prone position—turning them on their stomachs—often for 12-16 hours a day. This relieves pressure on the lungs and opens airways.

Other treatments include plasma therapy using plasma donated by those who have antibodies to the COVID-19 virus. Patients may also receive anti-inflammatory medications and antiviral drugs, such as Remdesivir, which was developed to treat the Ebola virus.

Th medical team continues to study reports from the Centers for Disease Control and Prevention and other health systems, as well as evaluating its own practices, as it works to provide the best treatments for the patients.

“We are certainly encouraged by the positive outcomes we have seen in our health system,” Dr. Fitch said. “We have to figure out what things we are doing that we can attribute that to.”

Tilting beds

Dr. Fitch credited nurse Michelle Rowland with leading the way on one change in practice.

Rowland took care of a man whom she believed would benefit from proning—being turned on his stomach.

She requested an order from a physician and a team to help turn over the patient—it takes four or five nurses and nurses techs, plus a respiratory therapist to move a critically ill patient from his back to his stomach.

While waiting for everything to fall into place, she realized she could take an interim step. The ICU beds include a “lateral rotation” feature, which slowly rocks the bed from side to side.

Although designed to prevent bed sores, Rowland thought it might help patients with fluid in their lungs.

“When those lungs get that sick, they get like soggy sponges,” she said. “We know that moving them frequently helps.”

She turned on the lateral rotation. Like a slow-moving cradle, the bed rocked slowly back and forth, changing positions every 10 minutes. It tilted one side up 20 degrees, then returned to a flat position, then tilted the other side up 20 degrees.

She soon saw results—a steady improvement in the man’s oxygen levels.

DeLine wasn’t surprised by Rowland’s ingenuity when she learned what she had done.

“She is very creative. She is always thinking ahead,” DeLine said. “She is a fantastic nurse.”

She and Rowland discussed the approach with a clinical research nurse and Dr. Fitch.

“Now we turn it on with nearly every single COVID-19 patient,” DeLine said.

It’s hard to tell how much it affects a patient’s recovery—amid the many other therapies provided. But DeLine believes it may help by shifting fluid off areas of the lungs, allowing them to work better.

That kind of out-of-the-box thinking is common among those drawn to work in the medical ICU.

“Dr. Fitch is leading this team in a way that is curious and collaborative,” DeLine said. “We all work together. That makes a huge difference when you have people who are willing to step up and do what is right for each patient.”

Giving extra love

Keenly aware that patients are separated from their loved ones, the nurses do all they can to bring a sense of human connection.

“We are acutely aware that they don’t have the love of their family there, so we are giving them extra love to make up for it,” DeLine said. “Even though we are in gowns and gloves, that doesn’t change the fact that we love what we do.”

The nurses arrange video calls for patients and family members. And they call loved ones to let them know about big and small milestones.

“We will call sometimes just to say he opened his eyes. He squeezed my hand today,’” DeLine said. “If my family member were here, I would want to know there is someone in there holding their hand, wiping their tears and smiling at them when they wake up.”

Just as the medical team celebrates patient’s victories, they take it to heart when a patient dies.

In addition to the 78 COVID-19 patients who have recovered enough to leave the Butterworth Hospital ICU, 33 patients in the unit have died. The nurses and therapists who care for them grieve for the patients and their loved ones.

“It is heartbreaking,” DeLine said. “The nurses look at them like that’s their grandpa, that’s their dad. You can’t help but see the people you love in the people you are caring for.

“There are a lot of things that are difficult for the nursing staff. We talk a lot about coping skills, about recognizing burnout and stress.”

The team also has access to services Spectrum Health offers employees to help cope with stress, including counseling, spiritual support, yoga classes and a meditation app.

That dedication, combined with skills and experience in ICU care, are key elements in patients’ recovery, Dr. Fitch said.

“It’s just astonishing to me—the persistent, steady effective work that people do every day to take care of these patients,” he said. “That is one of the central pieces: good solid training on how to take care of sick patients and attention to details.

“Doing that over and over again, day after day, is what wins the day.”

‘These COVID-19 wins’ published first on https://smartdrinkingweb.tumblr.com/

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perspectief1 · 5 years ago

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I’m A CPAP Dropout: Why Many Lose Sleep Over Apnea Treatment

I’m A CPAP Dropout: Why Many Lose Sleep Over Apnea Treatment was initially published to www.perspectief.org

By Victoria Knight, Kaiser Health News

When doctors told Frances Faulkenburg she had sleep apnea, she was more than ready for relief from her tired-all-the-time existence. She used to fall asleep at red lights while behind the wheel. At night, she’d wake up gasping for air, heart pounding. Her husband told her she snored.

But Faulkenburg, 47, couldn’t tolerate the CPAP machine her doctor prescribed.

“I just could not get used to the face mask covering both my nose and mouth,” said Faulkenburg, who lives in Oviedo, Fla.

“It was claustrophobic.”

CPAP, or continuous positive airway pressure, is often one of the first solutions doctors suggest for sleep apnea. With this disorder, a person’s breathing stops and starts so frequently during the night that it can lead to or exacerbate health problems. The National Sleep Foundation estimates that more than 18 million American adults have sleep apnea.

A CPAP machine blows a stream of air into the back of the throat to let people breathe easier. It prevents muscles in the back of the throat from narrowing, which can constrict the airway, causing snoring or disturbed sleep.

Yet Faulkenburg quit using her CPAP and went back to feeling sleepy and tired all the time.

Many people have a negative reaction to the machines and are tempted to do the same. The big whoosh of air in your throat. The restrictive mask on your face. It can be a lot to adjust to. Studies suggest that from one-third to more than 50% of patients either stop using their CPAP machine or never bother to fill their prescription. They quit for a variety of reasons, but mostly because the device can be cumbersome and uncomfortable. Sometimes, they quit because of confusing or stringent health insurance restrictions.

But the health effects of untreated sleep apnea can be serious. People struggle with anxiety, tiredness and low productivity. There’s even an increased risk of high blood pressure, heart attack and stroke.

Mary Mertens, a respiratory therapist at the Cleveland Clinic, helps patients work through problems with their CPAP machine. Patients often complain that the volume of air the machine puts out feels too intense.

“Think about it as sticking your head out of a car window with your mouth open at 60 mph versus 25 mph,” said Mertens. “The high pressure can be very overwhelming.”

So Mertens’ team goes to people’s homes to help troubleshoot problems. That includes explaining sleep apnea and how a CPAP can help.

“Picture the air passage at the back of their throat like a garden hose with no water in it. The hose collapses down,” said Mertens. That’s what happens when a person with sleep apnea is sleeping.

“When we put a CPAP on somebody, it’s like turning the water on for the garden hose,” she said. “The hose then pops open and stays open.”

At the Cleveland Clinic, about 70% of patients in the Respiratory Home Care program keep using their CPAP, Mertens said.

Follow-up is key. Mertens’ team checks in with patients during the first three to five days, again between 30 and 45 days and again between 60 and 90 days.

Faulkenburg, the patient in Florida, first tried a CPAP 15 years ago but never checked back with her pulmonologist when she was struggling. And, she said, the physician never contacted her. Then several people in her social circle died in their sleep—all of them right around her age. Those stories shook Faulkenburg, and she decided to try her CPAP again.

“I got a mask that covered just my nose, which let my mouth stay closed. That ended up being the whole issue,” she said. “I sleep so good, I can’t sleep without my CPAP now.”

Dr. Indira Gurubhagavatula, a sleep medicine physician at the University of Pennsylvania Health System, said the look of the device alone can be alarming.

“One of the first things that I hear is that the thing itself is intimidating—they see the tubing and mask and it’s blowing air in their face—they have real concerns: ‘Am I actually going to sleep better with that thing?’

“It is a big ask to go to bed with this thing strapped to their faces,” she said.

Gurubhagavatula said people who feel claustrophobic should wear their CPAP mask during the day while reading or watching TV. That can help the nerve endings in the face get used to the mask.

“It’s just like breaking in new shoes or new jeans,” said Gurubhagavatula. “Once it’s broken in, it’s less of an issue.”

Pulmonologist James Rowley, a sleep medicine physician at Detroit Medical Center, said the air pressure from the CPAP can cause a runny nose, nasal congestion or dry mouth. He said he can help by adjusting humidity settings on the machine or prescribing an antihistamine.

Medicare and private insurance companies require patients to use their CPAP very consistently—often at least four hours every night and for 70% of nights each month. Sometimes the usage is monitored.

Patients who don’t comply may end up paying out-of-pocket. That’s the topic of this week’s episode of the podcast “An Arm and a Leg.” Kaiser Health News co-produces the podcast.

Prices vary, but a fully equipped machine typically costs from $500 to $3,000, with the national average around $850. After that initial investment, masks, hoses and filters need to be replaced two or three times a year. And users have the ongoing cost of maintenance supplies—wipes and brushes to keep the machine parts clean.

Gurubhagavatula said she has patients whose machines have been taken away because they couldn’t follow the insurance company rules.

“They may have child care or elder responsibilities that makes their sleep disrupted. Or they sleep in chunks of time because they work certain shifts,” she said. “The rule is arbitrary because using the machine, even if part time, is beneficial.”

Nate Wymer, 44, said his machine is lying around his home somewhere in Holly Springs, N.C., but he hasn’t seen it in years.

“When I had the mask on I had to think about breathing out of my nose,” said Wymer. “That’s not something I normally do. After a couple of nights, I just couldn’t do it.”

“My doctor never really followed up from what I can remember, so I back-burnered it,” said Wymer. “But, if you get in front of somebody, actually talk to them and make sure everything is going OK, that would have been nice.”

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

from Sleep Review http://www.sleepreviewmag.com/2019/10/cpap-dropout/

from https://www.perspectief.org/im-a-cpap-dropout-why-many-lose-sleep-over-apnea-treatment/

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ellymackay · 5 years ago

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I’m A CPAP Dropout: Why Many Lose Sleep Over Apnea Treatment

The following post I’m A CPAP Dropout: Why Many Lose Sleep Over Apnea Treatment Read more on: The Elly Mackay Blog