Possess no place

a day may show itself

long or near from now

where pain and fear possess no place

their greedy place at your table outstayed

uninvited guests

came into your life, wrecking balls

fathomless of the despair they could put

as wicked times will have us ensnared

forgetful of former peace

hostages to the ease with which

sickness makes strangers of us.

Who inhabits this body of pain?

when did normalcy include such horror?

what lurks behind the shell of our discontent?

masking the urge to cry out with futile restraint

who do we hide our agonies from? Or is it that obscene need to appear

while and strong? While behind public doors we collapse in mock

no succor for the actor of their own wellness

Give me hope we clamoring souls sing in our flung prayer and rage

let me believe

believe again

find the keys, the healer, the drug, the end of

this

or I think I wish

I never existed

a thought I’ve had many times before

though none are without regret

some of us excel at impoverished thought.

I do not remember the me before

mornings of hurt, nights of pain

was she a creature capable of delight and desire?

did I feel alive?

Sometimes it’s hard to know

the fall is long down rabbit hole

make me

myself again

whomever she was

a better dream

than this

slow living just above not existing

hardly realized

quiet in accepted

thirst

for another grasp at hope

for any

recourse

where fear and pain

possess no place

I AM A TOTEM OF MY OWN BRANDING

I’ve been told I’m a chronic pain in the ass

after all, it’s easy to destroy a child in an adult’s body

with past-tense words

and now in the time I’m meant to be at my strongest

chronic has visited me and stayed a long while

on a good day I think; This will not be forever

but temporary has always been a long way off

the doctors love to tell us; It’s incurable, get used to

living like this, hostage to something unknown and strange

as if that’s a normal thing to do

but if enough of us live with chronic illness, it will become normal

and that is not a good thing.

Before this …

I took chances, because you think

I’m invulnerable, sometimes I can fly

health, you take for granted

though I truly convinced myself, I had checked the boxes

right weight, exercise, organic, vegetables, no pre-made meals

(well, this is what I told my doctor, sometimes a couch counts as exercise, right?)

if I ate a slice of pizza, it was a treat with friends

though I like root beer, I never drank it

maybe making up for cigarettes, smoked in my twenties

but I thought if I keep jogging, if I keep living healthily

I won’t be felled, because you ARE WHAT YOU EAT.

A few months before I got sick, I recall

feeling strong, climbing through snow drifts and laughing

boundless energy, working long hours, feeling intensely alive

people saying; you look so healthy, your skin is radiant!

Those are not things people say now, unless

I apply a lot of make-up, to camouflage my fraying edges

instead it is me, who declines invitations

I am sorry I cannot go with you to eat, even though eating out

is the number one leisure activity where I live

because my stomach is ruined and I cannot digest much

I live plain and simple (and boring), like a nun and I am numbed

to the pleasures of wine and sauces and garlic, spices and oils

not recognizing my bloated mid section in the mirror

from the girl who once was told

she had an hour-glass figure, with a wasp waist

could run for buses and catch them in three-inch heals.

I know everyone has their burden

but when you get sick and it doesn’t go away

life becomes a series of scolds and let downs

you find out who really loves you and who harbored an anger

used the opportunity of your downfall, to insert a knife

it is the cowards way of course, but freedom of sorts

for none of us need, that kind of negativity in our lives

there is a blessing in disguise, when you find your tribe

the people who care and know the real you

not wanting to tear you apart, because it’s easy to kick you when you’re down.

But blessings do not salvage, the hours you spend sickening

remembering how you were rarely felled in past years

strong of body, sound of mind, juicing and walking ten miles

everything is turned upside down, inside out when you find

a burnt fuse, at the end of your outstretched arm.

There is no cure, there is no future

when you live, in a jar for the jarring

for a long while, I blamed myself

maybe in part, because someone I trusted told me;

“It is your fault, you must have somehow caused it”

easy to throw stones, at glass houses

I was a glass house, with many windows

break one and I cannot repair it

the wind will come in and make of my space

chaos

the sun will come in and make of my peace

madness.

Those things that brought me joy, were gone

instead, the regiment of illness strode in and stood firm

you cannot feel passion, when you are sick

ageing in hours, rather than decades, trying to stay above water

it is hard to feel hope

you rely upon the kindness of others

which is hard to do, if you are not used to it

and when they lift you to the light, you promise

if I can recover, I will try ever so hard to never be ungrateful

but with every mercy, is a dark day in hell

those days take it all out of you, like a scourge

the sickening can age you, more than a nightmare

one minute you recognize yourself, the next you are unknown

vulnerability, of not being able to take care of yourself

the expense and fear

your world crumbling around you.

These are things you get used to and when you have fallen

to the bottom and can no longer get up

that is where the truth lies

that is where you can find

your true self and the end of fear.

They tried to tell you that you were insane

making it up, all in your head, something’s wrong with that

crazy lady who pounds her fluttering chest in vain

tries to catch the eyes of doctors, with beseeching side-glance

SEE ME! HEAL ME! SAVE ME! WHAT IS WRONG?

WHAT HAS HAPPENED TO ME? WHY DID I WAKE UP ONE DAY

SICK AND IT NEVER WENT AWAY?

And yes ! Something was wrong with me and still is

not my doing, not my causing, not my dreaming

despite you saying; You bothered us, when you called and were upset

no mercy, no mercy, no mercy, that is not love.

Helped me let go. Don’t hold on to negativity.

Oh doctor, get it outt!

and if you can’t, then give me the key, the saw, the pick

so I may survive myself and somehow continue on.

Am I to label myself chronically ill, or in recovery?

Surviving or dying or all of the above?

how do you define what doesn’t go and doesn’t kill?

Spending all your money on alternative treatments that

don’t even know what they pretend to cure

how do you describe one good day, followed by one in hell?

others won’t understand, because they are well

what I would give to return, to that safe water place

but even if I did, I would not be the same

you live years with a loaded gun to your head, everything changes.

I am not me anymore

I cannot see out of my left eye

I cannot lift heavy things, with my weak foreign arms

I can walk ten miles and not break a sweat despite this and be told

by friends and foes; OH YOU DON’T LOOK SICK

I am an apparent scar of contradictions and pain

I hurt every day, my stomach feels like

something is eating me from the inside out

it convulses and retorts and shouts

“you will never win, you will bathe in pain the rest of your life”

but I will still try

because I don’t know how to give in to enemies, I cannot see

and even as I cannot eat normal food

one day I am good, the next I am dying green

even as nausea, has become my constant companion

and bottles of pills and vitamins rattle in my pit

even as I fight to be gracious in the eye of the storm

and those I thought would stand by me, try to drown me instead

I know there is still a moment

I am well enough to remember who I am

never to find that peace of mind again

but maybe recover to another state of being.

I wake in the night covered in sweat and the disinterested doctor says

“get used to not sleeping, get used to all of this, it is what you must suffer and many others do”

as if it is normal to be like this, as if it is something we should not mention

I will never think it is normal to be hijacked!

I jog into the forest, because it reminds me I am still living, my feet still work

I fight with wilted hands, when they tell me there is no hope

that I should just consign my former glories to a picture album and put

my feet up for a fifty year occupation of sofas and couches and day time oblivion

because THE POWER OF ME can overcome the power of negativity and this I believe

as I see in the mirror a girl who doubts but stares back unblinking.

I have lost my will at times

I do not write as much,  I have less energy

the last time I had a romantic dinner was in a dream and I

sleep with a heating pad on my stomach every night instead of a lover

but I still pay my own way and my own bills

I have a pride in pushing back against status quo

DEFYING the prescription of HOPELESSNESS.

they tell me go on disability. Just give up

I am not going anywhere, but to the finish line

I learned

by losing everything and having nothing but

the sheer will and dim light of my existence

I can do this without those I thought I had in my corner

because I am stronger than I realized

and this grieves me, as well as reassures me

but I come from a long line of stoic, strong women

and it seems sicker than I am, that we should hate each other

because life, surely we have found out, is fragile

and love is all that makes sense

but even without love I will continue and not

let the flame go out.

Sometimes I ask myself why?

why not just give in? Take the knife, swallow the pill

to oblivion or some non-sign-posted destination

I don’t have children to protect

it would be easy to slip out of this world and its sword edge of pain

but somehow I feel I should protect myself

maybe because others did not

maybe because you defend yourself in the end

when everything else is fallen and you are still

somehow, standing.

I am weak and tired and prematurely aged into

a hunched over version of myself

hair greying with shock, skin is sloughing off and my

body is tied to the rhythm of a sickness that purges and gluts

I was told this kind of disorder was permanent

but nothing I have found, is ever guaranteed

so I have chosen to ignore this and believe

we can all fight and overcome

anything

even a death sentence

even betrayal

even silence

and when we know this

when we are strong for our weakness

realize our tears are just water and salt

burning the frustration of our visiting menace

then, we know nothing can hurt us, more than it already has

and we are free to dream

of a future without so much pain

where death stands to the side and lets us regain

some of our former dignity

for there is nothing dignified in sickness

and you don’t know me when you said I was glamorous

that is the last thing I am

I am beautiful for my courage

beautiful for my fear

beautiful for my survival

beautiful for my defeat

beautiful for my mercy of those who have no mercy for me.

And life is a wax and a wane

life is a torture and a friend

I am the totem of my own branding

I may live in a time where nobody else of my kith and kin remain

and once that would have filled me with pain

now I know you cannot rely upon

labels of safety

it is only by looking into the hearts of those

who stayed by your side when the storm hit

even if it is one, even if it is naught

you remain behind

the tempest cannot roar forever

eventually even agony ceases.

I wish now, to be everything you were not

to love others unconditionally

care for those who are in need

be the change I want to see

I want to find myself

at the end of all of this

I want to tell you, sickness

you do not win

you are just a miasma

I am a spirit with a soul

I will endure you

the me, of me, will remain

long after, to remember her worth.

Before this all began and through it, learned

only the fierce remain

only those willing to FEEL

and not those who run from feeling

with the ease of the damned.

Fear – Candice Louisa Daquin — FREE VERSE REVOLUTION

Fear for a child is very different to the adult and exactly the same the child inhabits another decade, in the past, another life before they knew they were who they become the child wets the bed because she misses her mother who is beautiful, ethereal, slender and absent the smell of her still lingers […]

via Fear – Candice Louisa Daquin — FREE VERSE REVOLUTION

Last call to Submit Writing and/or Art for “We Will Not Be Silenced” Anthology

Midnight, Monday 15^th October is the deadline for submitting art/writing/poetry, this is an important, very timely project at a critical stage in history, your voices need to be heard!

Bruised But Not Broken, Whisper and the Roar, Indie Blu(e), and Blood Into Ink are joining forces to publish an anthology about the lived experience of sexual harassment and assault. We believe that it is more important than ever before that more voices speak out and reclaim their strength by owning their survival stories. All contributors, female and male, can submit up to three pieces of creative work- these can include; Poetry, Prose, Essay, Short Fiction, Prose, or original Artwork, but should be limited in length (under 1,000 words) considering that this is an anthology. You will be notified if your work is accepted. Please do not consider nonacceptance as any diminishment of your experience, but as with any publishing venture, we must try to fit the individual pieces together into a strong whole.

• Submission of previously published pieces is acceptable if you still own the rights to your work.
• Artwork can be submitted in black and white OR color but all artwork should be black and white compatible.
• Using a pen name or publishing anonymously is acceptable.
• All submissions should be sent to bloodintoink2017@gmail.com by midnight, Monday, October 15, 2018.

Writers and artists will retain the publishing rights to their individual submitted pieces. Indie Blu(e) will retain the rights to the collection We Will Not Be Silenced.

Pieces accepted for the Anthology may be used in whole or in part to promote the Anthology. All writers and artists will be appropriately credited in all promotional materials.

Should the royalties from sales of the Anthology exceed the costs of publishing and promoting the Collection, 70% of the royalties above these costs will be donated to organizations that support survivors of sexual harassment and sexual assault.

 

Mercy

Answer me

Please

Climb out of impossible and

Dipping quill, write backwards in time

Angling mirrors to lipread

Da Vinci’s reflected scrawl

tell us the unravel to the mystery

Where in this hour should we go?

When they let you down slow

Removing fantasy, layer by layer

Are you there?

On the emptied pier, bare of hope

Dour endings posted like nails in my palm

Is that you? Cresting wave in falling darkness

Light, just a slip of a girl spilling over her dress

It is cream and carries each stain like a mast

Are you there?

Crunching underfoot, doubt that goodness is lost

For you, with your thin shadow, still manage to

Fill me with light

A radiant being, rarefied

How often to find, one whose mission isn’t self

But the betterment of others

You, who don’t even know your worth

If you did, you would hiccup and grow embarrassed

It is not your need to be praised, you are a child of mercy

Your pleasure is in lending kindness, to mend the scold

For this world can be so lonely, and you

Are a house to come in from, settling cold.

 

Safe ascent

This unspoiled place

holds a silence and a sound both

in the careen of wild bird, dove-tailing against light

swish tailed-fox, caught in glimpsing treeline, scar of russet

your wool pulled and caught like thoughts on wire

I felt you inside, like mercury, descending to places I’d locked

tight against battering fists and claim

how did you learn the maze and possess

parts of me I had yet to give permission?

though all of us are like the wool, caught and fluttering

against a world of happen-chance and calamity

it is only perhaps, in those untethered moments

love, unexplained by all things

captures in unguarded step

drowning tightly held belief

we are our own master

and in this yield

in your arms and the void calling overhead

a vast sky holds swell of rain

just long enough

for our safe ascent

Who shall love?

If you are not a beautiful creature

Is there love for you?

When the world appears bewitched by youth and eternal moment’s boiled to infuse

Who shall love?

Who shall love?

The imperfect and technically “past it”

When beautiful felt like;

The sound of heals clicking on marble

Then slippers

Then bare feet

Then silence

No attention for a certain shape, age, gaze

Consolation crows, grow your mind

Crack jokes

Have a sense of humor

Laugh at yourself.

Long before, boys fell in love with me first;

Because of an hourglass

A firmness

A tightness

A willingness

The measure of hips

And then later, aserbic wit

I say ignore the rules

Climb trees at sixty, chomping on cigar

Wear polkadots, rolling dice on roof tops

Make love in bramble hedges and countertops

We talk of politics and deep sea diving, the need for conscience, passion and chocolate biscuits

You didn’t need a perfect pair of legs or a tiny waist

Eventually you wanted a woman of four seasons

Who couldn’t hold her alcohol anymore and streaked across the lawn

A girl of seventy and four, mayflies buzzing in our ears

Who still beat you at arm wrestling and sang like an angel with grey hair

Opening her robe to your eager devour

For once upon, you were a youthful coward, chasing empty smiles

And now you lay in a woman’s arms marveling at her lines

The black and blue, and those she fought hard for, birthing children

Crossing her face like stars

More beautiful for their dance

On skin long past its prime and so fine

For a constellation is music over time

Then and only then, love breathes eternal

I said no and you said yes

I said no and you said yes

The first time was before I can remember

adults do not have dominion over children’s souls

but that’s what happens when you touch a child and cause her to be unwhole

the second time was in nursery school so I suppose your foray of my body had begun

as I emulated what was done

in the back of a toy caravan with my pretend boyfriend and he liked it a lot

made me feel dirty though, I did not know what that meant at the time

seeded a doubt in the core of my person, like a rod of copper slowly turning green

the third time I lay face down on a dirty carpet and three boys played marbles across my back

they got the idea from a porno mag their father hadn’t hidden very well

and their kid sister watched from the doorway, and I told her with my eyes, go to your room or you will be next

I said no and you said yes

it became as normal as something bad can be, I wanted to see her, so I had to cross the gauntlet and you were the gatekeeper

nobody believes you when it is easier to disbelieve and go on thinking respectable people don’t lie

you taught me to hate games shows as they were our background noise

and grandma would come in laughing and I’d see the guilt in her eyes

sacrifice the daughter, sacrifice the child, sweep the dirt underneath the bruises of generations

at nine I fell in love for the first time with a boy who wiggled above me but he of all, respected my desire to be unmolested and we hung upside down from the monkey puzzle tree holding hands

I said no and you said yes

James Brown was your name like the singer, and you didn’t take no for an answer

you climbed my bunk bed and pulled down your pants and if the door bell hadn’t rung you would have got your way

I wonder who came after me and if they were saved by the bell?

I said no and you said yes

yes yes yes you know you want this

no no no I really don’t

but you asked for it, you tempted me, you flirted, you caused me to have a hard-on, this is YOUR FAULT

I kissed a boy in the garages outside school and it felt dirty and wrong because it reminded me of what others had done

before I made decisions of my own

I said no and you said yes

I felt guilty about touching myself because of the Jahovah witnesses and the Mormons and the teacher who stapled my confession together and said we won’t talk of it

when I tried to tell her, this is what happened to me

and you didn’t feel guilty about playing yatzee and karatee on your father’s bed with the nylon sheets and the little bobbles they made when you made a tent and put your fingers in

and you didn’t feel badly when you lied and said you would only touch and instead you went too far and before I knew you were pinning me against a table

I said no and you said yes

children who are violated don’t always know what’s best for them

they are broken and they are scattered and they are stomped on and they hate how they look when the light is on

but they want to fit in and they want to be normal and sometimes in trying they get it all wrong

the neighbor told my parents; your little girl is using bad words and teaching my boys how to curse

and I said fucking hell what does it matter?

but it did, it mattered a lot, to stay in the confine of childhood and not grow up

because growing up meant it was real and you had to deal with it and whilst you were a child

nobody believed it could happen anyway so you could pretend it did not

I said no and you said yes

yes yes yes I know you want to

no no no I really don’t

and my second boyfriend said he wouldn’t go too far

but he did and he did and he did

and I ran through the streets holding myself up and I shouted to the trees that had fallen because of the high wind

why do people pretend? because I didn’t understand and it was a language impenetrable

but I was not … impenetrable

I was just a place of conquer

I wanted to find a lock and keep myself closed

but they kept battering down the door one after the other

because patterns are sometimes all we have to show

for the cycle of abuse

I said no and you said yes

the last time was in a public street

dragged off and soon the roads diminished and the woods were thick

he moved like a silver fish cutting his way into my secrets

I lay staring at the knife

he told me, I won’t cut you if you are nice

I was very, very nice

no no no

yes yes yes

the policeman said; I have to ask, it’s my job, did you want to have sex with this homeless man?

and I pulled up my torn skirt and my ripped hose and my shredded blouse and my dismembered bra and my bloody underwear and I said

if you can even ask that question

you will not recognize justice if it comes

no no no

I said no and you said yes

the last time and the first time and all the rest

when children become girls, become women, become less

than the worth that is owed them

yes yes yes !

Ode to absentia

I have written enough about you to fill a slim volume

or maybe two ships

set sail for one of the countries you visit

sending me letters in the day, with marks and fingerprints from all around the world

they would smell

like you, even as that was impossible

and I prepared, as nobody ever can

for the day I would lose you

why not, you ask, appreciate the now, when you are here on earth?

I have, though, we have never spent our lives together or even entwined

I have been saying goodbye all these years

yet it will not be sufficient, it could never be enough

you are more of me, than myself

and I feel you inside even though you are not here now, and gone in the future

loving you has felt like continual loss and little gain

yet I do, more than anything else, for you are that kite, unmoored itself and got away

the thought that comes creeping up as you laugh, as if I had a twin, and yes, she was the one who grew in courage, living full in ways I knew only from books

you have the lifeline of twenty palms and though you could not be a mother, you have always inspired me, like the character from a favorite story

reaching near and never touching, someone marvelous and unable to approach

I live sometimes with my eyes seeing through yours

the waves of your life nearing but never reaching, shore

at some point there will be a day when you are not simply absent and not around the corner

but further then, impossible to mend, hands of time, spent longing

it may be my song to want and not receive, the beauty that is you, and your life as it cleaves

further away, until from a great distance I cannot distinquish, squinting until my eyes hurt and run

I would if I could, but I never have, and I won’t

it is the theatre of our lives to play out

my role is that of thirsty

yours to make ordinary seem

extrodinary

you are the giver of dreams

I shall always wish

for one more day where I see

your figure coming closer through the dusk

perhaps to stay a while, even if we do not touch

I long, in layers, not to lose, what I have, not.

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.