Imperfect paradise

Today baby, everyone is pert and beautiful

Photoshopped at perfect angle

Swollen lips, weak jaw, 2000 friends with guitars

Can’t keep up, even if I were two and twenty

Better my generation-X lost our film

Before developing

Didn’t keep a record, of that mistake, or this bad day

We pretend and forget, imprecision a comfort blanket

Not wanting to keep in touch, why force natural closure with technology?

We lost your digits and never knew your surname

A blurry mystery of poor memories

Was it that candlelit poet’s bar now closed?

No proof, no evidence, if a tree falls, does anyone know, if it’s not on Instagram?

I liked your home dyed hair, we shared night under looming sky in damp sleeping bag

You fucked my ideals of love when you slept with her

Sent me on my way with a trash bag of belongings

A dead squirrel slothing skin, lay ackwardly beneath your window

Its stink remaining when I was gone

Rumor had it you used her hose as contraceptive

I never french kissed again, or wore tights

Her name was Bo, there’s only my recollection to endear spite

If I saw her today, she’d be married, still tan and leggy

I’d be tempted to gaze up, crack a joke about what denier she preferred

Glad I don’t have a Facebook post about him

Or the other errors, or the other sins

We ran without skin, coats, phones, without GPS location

A bum camera slung on collarbone, for special occasion

Your grimy hands entwined in mine

We knocked our shins on tree stumps

You don’t need Technicolor to be lovers

You took a photo of me nude against the bed

When we argued I tore it up and now it’s zero

Thankful, as I hadn’t used a razor in too long

Along with you and your cigarette butts making daisy wheels of carpet fiber

We smoked when we knew it would kill us

We didn’t floss

Those were the days of ugliness, sloth and 3am torn condoms

I loved your 90s dirty hair and sunburnt cheeks

Keanu in The Rivers Edge, chasing Dennis Hopper and his blow up doll Mary through pine forest

Lying in dead grass in the park, watching topless girls dance with loops of fire

You pressed into my hips, we made out and I can’t remember much besides, the way your fingers felt inside

Perhaps I left early and rode the bus back through dark city, head leaning against grimy glass

Maybe we slept all night and I gave birth

To the ecclipse of time

Shifting and changing

No evidence of

Similarity to now

An imperfect

Paradise

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Expansion

Gaining weight used to feel

dangerous

body parts blowing up, smothering familiarity

she wanted to be in control of everything and nothing could be controlled

so she took what she could instead …

her own flimsy pounds of flesh

the shrinking and expanding of time

denial and suppression, weezing like old men

enraptured by ballet dancer who starves herself to death

if she ignored her bodies longing to transform, she stayed small

and boys could circle her waist and say; you haven’t changed a bit! She could believe the lie and retrace time

could still be a slip of a girl, wearing her old clothes from when she was free of the demands of adulthood and blood, blood that did not rinse clear even when scrubbed

and this she did, for far too long, for fear of else

for what more was she? Not a mother, not since hurtling down the stairs, pushed by love, she saw her baby break into knots of placenta and gore

now not sure of whom she had become, in absenting herself it was easier, to dwell in the old shell and not

expand

comfort in knowing one’s exact circumfrance

and how it would feel to place a hand upon her flesh

a control without anything behind it, empty strawman, left without match to kindle, burn and diminish

she stayed the same whilst the rest of the world changed

grew wider, grew taller, grew inside and out

she was a fascimile of her damp past

it wasn’t until a sickening reduced her to almost empty

where she rattled and she clacked and she was hollow cheeked and pigeon chested

then her heart flickered on and off and she knew

the danger of staying still, was too great

she ate, though the taste was gone and appetite nil

outgrowing her own well known shape, she became something new

it was a frightening feeling to find what she would be

now that she had turned the corner and let the adult in

would she be like her mother with tiny little legs and arms?

or more of her father’s broad shoulders and freckled stomach

she was nobodies lover and nobodies mother

it hurt to cut herself out of the place she’d been so long, though long stale

and try to break out on her own, one unfamiliar piece at a time

in the bath she would gaze at her new body

bearing the marks of where she had visited

the underworld and the center of the sun

burning and drowning simultaneously

Her chest resembled the teets of a tiger, her thighs wide and strong

Readied to climb mountains, burst dams, forge expectancy

nothing else seemed important least of all

if she fitted into or fitted out of

the places she used to belong

this was a new version

she was going to gain more

than mere pounds and stone

she was going to quit starving to remain familiar

and learn the value of expansion

For anyone told they have Gastroparesis read this

For anyone told they have Gastroparesis, I feel it’s my duty to give my own experience so that should you have a similar experience you can avoid some of the time-wasting that I experienced and get help faster.

You may not have Gastroparesis.

Equally, if you are seriously sick and your symptoms are throwing up, intractable nausea and stomach pain, this may help you get a diagnosis.

In the days before the ‘gold-standard’ Gastroparesis test which is the Gastric-Emptying-Test (GET) doctors tended to rely upon an EGG of your stomach to measure your stomach waves/contractions. What an EGG does is tell the doctor how your stomach is performing not in terms of motility so much as spasms and waves.

Nowadays they talk more about motility and the bias is toward slow motility. This means when you go and get a Gastric-Emptying-Test (GET) they are biased toward thinking you have slowed down motility. Although women’s stomachs are much slower than men genetically, and although people are different in their emptying/rates of emptying, there is a bias toward thinking stomachs all empty the same way.

Because one size doesn’t fit all, it’s important to find out what your stomach is doing. It isn’t sufficient to be told ‘your stomach is emptying slowly’ as this is usually based upon a short test that doesn’t capture the duration of your stomach’s experience with food. The reason it’s important is because when you go into the ER with symptoms they will often only run a GET for ONE hour. They will tell you that if your stomach hasn’t emptied 50 percent it is emptying slowly. That isn’t true, a stomach can take up to 4 hours to empty and you also need to know if they are referring to the top portion of your stomach or are also taking into account your small intestine as that is part of the stomach in terms of function.

The best GET test is to ask for a full four-hour test, and for them to photograph your small intestine as well as your stomach. Only then can they definitively say that your stomach is slow emptying. If that is not done, question the diagnosis of delayed emptying. In this day and age of Diabetes, it is a common bias that people are more likely to have delayed emptying than fast emptying. (The reason the EGG is a less popular test is also because doctors cannot make as much money from that test as a GET).

Furthermore, it’s not as simple as ’emptying’ because the Cajal cells in your stomach are connected to your brain, they have 70 percent of the serotonin in your body. In a way, that ‘gut instinct’ is accurate, and as such, you ‘feel’ things via your stomach. If you are throwing up, feeling violently nauseous and dizzy and have severe IBS symptoms this can be from the mis-firing of your Cajal cells in your stomach, that are overreacting and telling your body not to digest or to over-fast digest your food. This often happens after exposure to a VIRUS.

Here’s the real problem. Typically the medications you will receive will be medications for moving your stomach (prokenetics) that have bad side-effects and will make you sicker if your stomach is moving too fast. If the biased assumption is your stomach is moving too slowly, (not emptying fast enough) then these prokenetics will speed your stomach up but if your stomach is moving too fast this will exacerbate your symptoms.

I saw three Gastroenterologists as well as some on call in the ER. The first Gastroenterologist ordered very expensive tests (Colonoscopy & Endoscopy) then accused me of being anorexic (I had lost over 20 pounds due to throwing up all the time 24/7) and said I had Candida. He prescribed heavy-duty antibiotics for a month, when I told him I would throw up the antibiotics he insulted me and said if men in Vietnam with their stomachs blown off, can swallow antibiotics I needed to.

I went to see a second Gastroenterologist having no faith in the first. She was better, she said about the Cajal cells and the mis-firing and believed it was caused by a virus. She gave me a 40% chance of getting better but said I needed to force myself to eat more and prescribed me prokenetics x 3 a day and anti-anxiety meds x 3 a day as treatment (you get very, very, very anxious when you feel this way because you are throwing up non-stop). I had taken prokenetics before in the ER and they did nothing or made me worse, I told her that but that was her treatment. I decided after reading about prokenetics and how they have irreversible side-effects that I would not be taking them x 3 a day as that was madness, likewise with the anti-anxiety medications as I knew how addictive they can be. At this time I had had a GET for one hour so did not have any proof of Gastroparesis or even slow-motility but this was assumed to be the case.

The third Gastroenterologist explained things differently.

He looked at my symptoms and said that I could not have Gastroparesis because you would not have daily diarrhea with Gastroparesis as literally your system shuts down. I didn’t have early satiety, (feeling full quickly) although I found it hard/impossible to eat because of the 24/7 nausea. I threw up but not all the time, and I didn’t feel worse after eating (but I didn’t necessarily feel better either). Based upon symptoms he ordered an EGG rather than subjecting me to more radiation and because he felt it gave a more accurate picture. The EGG was quick, safe and painless. The results showed I had fast gastric arrhythmia.

What gastric arrhythmia means is when the rhythm of your stomach which usually is in three waves, gets disrupted, and causes extreme symptoms like 24/7 horrific nausea and throwing up. If you have diarrhea that’s a really clear sign your system is ‘dumping’ IE going too fast, and you develop a host of issues including bacteria over-growth etc. This doctor said prokenetics would worsen gastric arrhythmia of any kind but especially if you are too fast. He prescribed a Tricyclic Antidepressant at a hugely lowered dose (typical dose 300mg, he gave me 10mg) as they work on smoothing the muscles in your stomach, which slow the spasms and in time, re-set your system.

It is worth noting, gastric arrhythmia is unique in that it tends to feel a lot like arrhythmia of the heart, as the stomach is not far from your heart. You cannot tell that you are not having heart arrhythmia, which is why I said I felt I was the first time I went to the ER. Typically you will have very bad anxiety which is caused by the feeling of constant arrhythmia coupled with nausea and all the other symptoms. This is not your mind it’s actually your stomach! Heart patients with severe arrhythmia often experience crippling anxiety due to how they feel physically, the same is true with gastric arrhythmia but it is less well known so often doctors will assume you are suffering from some type of anxiety disorder until the results come back.

My doctor told me 90 percent of his patients got over gastric arrhythmia. But the key is proper diagnosis. I read online about many people who had gone through months of suffering before being properly diagnosed. It doesn’t help that when you do searches, Gastroparesis comes up a lot and many times, with cases that are not true Gastroparesis. It is worthwhile noting that Gastroparesis really means a stomach that doesn’t move. If you are going to the toilet, if you are able to eat something every day, your stomach is moving.

People with true Gastroparesis get big balls of undigested food trapped and sometimes they throw them up or have to have surgery to remove them. People with true Gastroparesis can’t eat but a few bites of food without being full. Gastroparesis is considered incurable, which isn’t true as if it is caused by a virus it often will go with time, but you wouldn’t know that from searching even reputable places online (the Mayo Clinic and many others say it is incurable and you have to ‘manage symptoms’ and the only way you find things about it being curable is when you add ‘viral Gastroparesis’ then there are many articles about remission and cure).

If you have Gastroparesis you can be cured with time. But if you have some of these symptoms and not all of them it is quite possible you do not have Gastroparesis and your doctor(s) are being lazy by using Gastroparesis as an umbrella term. When you don’t know anything and you are sick and scared it is very easy to just follow what you are being told and get really bad and inaccurate care.

If I had known about gastric arrhythmia and/or the nuances behind gastric motility problems, and why they are caused, I would have had a lot more hope and targeted treatment from the start, I may even be better now. But instead I spent a ton of money and fretted and worried and was so sick for months, before I was even correctly diagnosed. Now I am taking the right meds and I am hoping that they will cure me but I also know I have spent many months in agony which could have been dealt with better.

To help others, I want to make this clear. There is bad information out there, much of it negative, when you are sick you can really lose your mind reading the conflicting and negative information out there, so I’m trying to put out some that will help anyone who is experiencing these things.

IF you get sick like I did and you experience extreme chronic debilitating nausea, if you are throwing up, if you have diarrhea or get really bad IBS symptoms out of the blue, first things first get checked for common viruses like Epstein Barr, Shingles and NORO. If you come back as having a virus OR you experienced viral symptoms prior to experiencing these symptoms, chances are a virus caused this. It basically kicks your body into overreacting and like an autoimmune disorder, you develop some type of motility issue in your stomach almost overnight.

This is very different from developing it because of an autonomic issue or post-surgery or if you have Diabetes. Even in those cases, sometimes it can be cured but there is more of a physical reason for why it happened and it is not usually as rapid onset. Knowing why it started is important.

Second, once you know this, if your symptoms are very severe it may be worthwhile having a Colonoscopy and Endoscopy because it can rule out other things with similar presentation. However, they are expensive so if you are not able to do this, or do not wish to, then ask for a four-hour gastric emptying test or an EGG to be performed. The latter may be harder to find as it is only found in selective Gastroenterology clinics whereas gastric emptying tests are done everywhere. Ideally if you can find someone who will do an EGG that’s going to give you more complete answers. You can google your city and gastric EGG.

Third, find a good Gastroenterologist. Google ‘good gastroenterologists’ or ‘stomach motility gastroenterologists’ in your city. How I found my good one was by finding that there was a Gastroenterology Research Center in my city and I asked to see the head of it. Even if they are not in your insurance you can request they be or you can pay out of network costs which are more but are usually partially covered by insurance. Call them and try to get an appointment ASAP if you say that you are throwing up and unable to keep food down they usually will take it seriously and see you quickly.

Fourth. When you go to see them take all your information with you and say that you suspect you may have a motility issue but you are not sure if it is too fast or too slow. If they ‘assume’ it’s slow, question that, and ensure your symptoms fit slow before accepting that diagnosis (if you have diarrhea it stands to reason your system isn’t slow!). Take someone with you who is a thinker, so that they can be your advocate. I have felt so sick I couldn’t think straight and having someone else there, helps when your brain turns to mush. Write everything down.

I pieced some of the puzzle together myself. I was proactive in finding a doctor I felt was decent. I tried even though I have been so sick at times I couldn’t even get up from all fours on the floor. Sometimes a doctor will have a piece of the puzzle like my second Gastroenterolgist, but they will still do something ass-backwards like prescribe prokenetic drugs (that cause your stomach to speed up) without thinking through whether this is logical and right.

The hardest part is many of the anti-nausea medications don’t actually help with the nausea, (I’ve yet to figure out why) but especially those with prokenetic properties if your stomach is too fast. In which your doctor should prescribe something that will slow it down but typical antispasmodics don’t treat the problem they just force your stomach to slow, so you want to ensure your doctor is considering a less invasive approach such as very, very low dose tricyclics. At that dose they have none of the harmful effects of tricyclic antidepressants and do not work as antidepressants but just help smooth the spasm and speed of your stomach. My doctor said it may take a while for them to work to reset your system, if I had known about them from the get-go I may be over this by now so as soon as you can, get on them.

I’ve been told I will heal. At times I find that impossible to believe this because I have been so sick for so long it seems like a cruel dream to imagine being well. But I hold onto hope because it’s what I have. And I feel lucky to have it. If someone had told me what I am writing here, I would have avoided a lot of pain and suffering. So I’m passing this on in the hope that even if one person is saved some of the suffering of bad diagnosis and bad medicine, it’s worth it.

If you have anyone you know going through something like this, show them this and if I can help them I will. It’s been the worst thing I have ever experienced and you do think you are losing your mind after months and months of it, but with the RIGHT treatment there is hope and we must hold onto that.

The preserve of her emotions

Get up.

When you were ten, your body was a springboard

You bent in the wind, dashing forward.

Get up.

When did you start to believe otherwise?

With the coming of stiff mornings and anxiety in your belly?

As life crept nearer to unknown trials?

When did you give up believing?

You could again, hold the Fates cupped in your hand

And blow to scatter, seed to four corners.

Get up.

The white sheet, covers a multitude of unsaid

An imprint of the living, breathing, fear of mankind.

She appears to be a well behaved woman, with hair needing to be trimmed

But like a cake of many layers, the face fit for public consumption, is just wet paint.

If it was acceptable, she’d grab the quiet man, stooping to take her vitals

And craw in his ear, the gravy of her distress.

What would she say? That has not been said before? Who would care? In an ever-ready world powered by rhetoric?

When she was eighteen, she could command attention just by crossing her legs or flashing her eyes

But what a dismal game that felt, a fraud of poker and thighs.

They only paid her heed due to the bewitchment of youth and some promise it told their nether regions.

So often she’d mistaken lust and hunger for love and care

But they were no more than empty vessels, wishing to dock briefly in her harbor.

Her game, if it was one … of fishing for favor, a warm body, a pretend consolation

Left her desolate, like an addict without pipe

All her fancy, dried up and rotten in the artifice of it all.

And then she’d tripped over that invisible and superficial line

From youth, to something men did not wish to define and women morned.

She however, felt relief.

Not to be the party planner, proving her game was fitting in

It was gentler to command less and need no filling or straight flush

Though they say a woman’s worth, must be found in herself

For her sell-by-date leaves her invisible to the world.

And that was true. She did no longer

Turn heads or find men leant in, too close

Instead she was a ghost, haunting the specter of herself

Unsure why she claimed purchase on earth anymore.

It was as if the mic had been turned off

And everyone left the room

For the audition of younger models next door.

She was not a mother and could not connect

With married women who worried their husbands would stray, with downy cheeked baby sitter.

Nor was she eager to fill her face with plastic, just to feel a little of what she’d lost

(Why was it a loss?)

There seemed no path cut out for castaways of normal

No clear direction to take, on the other side of age.

Men … they remained mostly unchanged

Still harboring the illusions of youth, with rapidly balding heads and expanding guts

She felt so much … but who now wanted to hear her words?

Where was an audience for silver haired creatures of Artemis?

If she’d been an owl, she’d have screeched at night

And people would have woken and said; Goodness, that sounds like murder!

Such was her need to share

The preserve of her emotion.

So get up.

Though it has been long since you hopped on one foot

Or worn brightly colored hats, just because you could

And not, for the fondle of admirations dusty nod

But the sheer delight of being at last

A woman of substance.

Nearing fire

Ophelia_by_EarthDefectShe was not a hunter

She did not compete

There were no hands on the tinder clocks, rebinding feats.

When it rained, she stayed dry

Her hearth and rug, small morsels of comfort clutched

For not venturing out, salved potential for harm.

She grew up on the black hard bread of fear

Of the river breaking its banks and drowning

Those she loved

It was an inherited sense of loss

Passed down through heavy curtains, generations of individuals, feeling cast off

All the instability of fine china, balancing, teetering, turning to shattered lotuses.

She saw what happened when they lied and said she was safe

She could feel the pink welts, smell the violation, as it poured down the road, a torrent of what humanity can do

To a child.

She grew scars as self armor

Moved further to the fireplace to touch the source of its continual scald

When it stormed outside she didn’t join the rushing tide

The pinches, taunts, jostling, glut on perpetual war

Plasma and soldiers, drunk on devouring dear goodness

She stayed listening to the sound of the rasping wind

Beating on the old oak door

As if everything possible came together and fought

To get inside.

She stayed set apart from her given trajectory, a kite who cut her wings

Turning to liquid and back into wax, only to melt, nearing fire

They say fear is an echo, set the trap, watch it snap back

Until, submerged there’s no end, but the point you began, to let it rule.

She watched fear remove, her skin, her sight, and blind with fright, she consumed her own shadow

Till it was the only place to return, and burning into reduction she saw the reflection of someone with nothing to lose.

Expunging soot from her stained lungs, she let herself pass through the cloak of heat, demolishing every trace

Rising from emptiness, becoming ash in air and last dancer of ember, she saw

Hands spin trees into forests, reclaiming what was lost, in hungering inferno.

A girl who closed the door and checked beneath the bed, was gone

In her place the outline of a cowering form, afraid, yet, stepping from

The thin ledge we believe protects us from imagined harm

When all along we torment ourselves with far greater, considered terrors

Better that we face head on, destroy facade, turn to rubble and rebuild

Our resolution for survival, as we will always near, fire.

It is in horror, we see truth

horse-2565584_960_7201262177708.jpg

Before

is a color I cannot describe

a place I don’t fit into anymore.

 

Even if I am restored

things will be changed for good

for most of us there are times

that shape our marrow

could be in the form of torment

maybe sorrow, sometimes joy

often the hardest times leave deepest imprint

perhaps it shouldn’t be that way

we should rejoice our luck a little, usually too busy enjoying ourselves

to leave permanent mark or maybe, challenge speaks louder than mirth

it is easy to accept a good day like a hot bath

than deal with a bad and hollow foe

that’s when our quick is sharpened,the story of our lives written

on the tip-toe of endurance

and what if we do not want to endure?

too bad, shit happens, legs break, minds crack

we’re going to end up there at some point

better waterproof our leaking sides best we can

the ocean isn’t a forgiving mistress.

 

When I fell, my mouth filled with salt

even then I didn’t know how far torment, reached down

it was a well, beneath the sea

a second drowning

for those who long to be free above ground

shackles of the merciless kind

only then I wondered at the strength of others

enduring from such an early age whilst I

ran long in the garden, unawares, chasing butterflies without a care

thinking I knew real pain from a momentary hurt

I knew so little

just a moment ago and a life time apart.

 

I am a twin of my previous self

we stand on different sides of the same coin

I am submerged, she is still, basking in the glow of a harvest moon

sometimes I look over at her and feel such envy

anger for my lack of appreciation when I, was her

but you cannot lead a horse to water

you cannot teach a child what she must learn

getting stung on the principle, she discovers through pain

it wasn’t in my thoughts that I should be

the girl on the other side of the echo, pleading to return

I don’t know if I will be permitted

but should I ever, walk again without curse

it won’t be as the same person, but a mixture of two

once you’ve seen yourself and begged for mercy

everything alters and everything stays the same

it’s up to you to be mindful of what you learned in that maze of pain

I learned what we think of as hardship

is often just everyday life

what we believe is suffering

can be comfort compared to other lives

when we don’t think we can change

then we aren’t given a chance, we know we should have

it is in diminishment we find elucidation

it is in horror we see truth.

 

Let me back inside my life again

and I will not be the girl who, took the easy road

for she now knows, just how deep anguish can go

it is in the tangle of the briar

and the wormwood of old trees

whispering advice never heeded

by the youth who believe themselves free.

 

Before

is a color I cannot describe

a place I don’t fit into anymore

 

 

Sound

The kitchen, the harth, the space, is unlit

Weak light, nothing stirring

She is as still, as a breathing creature, can be

Sound… is for the world, chasing beyond itself

Where girls like her, hold tight to bus rails, wind messing their hair

Where children cling to parents, shy in perpetual game

Where men stoop to kiss women, full cheeks upturned

Music and the chink of movement, gypsy motion

Color and the russle of long skirts, like painted fans

A sky as blue as country girls eyes

The haggle of time

A red river, carved by motion

She wore those days, like a red dress, loose limbed and free

Unknowing yet, bestial crush of illness

Jeering like envious stranger, swallowing thin air

She is as still as a breathing creature can be

Sound, is for the world, chasing beyond itself