Virus

This chronic virus grasped me by the throat

Not lover, not rapture, the thunder of hooves seeking sinner

A Gorgon, Kraken, Swamp Thing of the blood rose

I cried; Is this retaliation for not caring enough? I do! I do!

But those who don’t act, are only words and armchairs, the hypocrisy of ourselves, fattening in our prayers

Epstein Barr knew this well, it is after all, an insidious invader enjoying its art

What did I do to deserve you as my bedfellow? I asked one night

Can’t you just leave me be? Return to the days before you feverishly claimed me your supplicate?

Swimming in my blood, high levels of scarlet poison, whispering; I could give you fibromyalgia, MS, cancer, chronic fatigue

But I chose to cause you to sicken every day, your stomach, your achilees heal, my throne

And as you write, think on me, for I infect you all, only some are immune

You, you are weak and afraid, with your desire to be a writer, which you’ll never truly be

Wanna know why?

You don’t have the personality or the guts

You don’t have the PEP

Imagination and pretty words aren’t enough

You need a marketing machine, a robust ego, stainless steel skin, no demons in your head

I don’t have any demons, I lied

Tucking the beasts behind my eyes

I may not get feverish over publicity tours or spend eight hours online, learning how to be adored

Because I’m trying, despite you, to live fully, without so much noise

I want to sit on my stoop and observe the flight of birds through water

That’s how I eventually write or embroider my tongue with song

By being quiet and inhaling the vibration of life

Like our favorites who didn’t always write daily

Sometimes, there’s more in less

In our world it’s too much 24/7

The population bomb broadcasting its static purr

I am a bad self publicist, I don’t submit enough or live for attentions

I’d rather drive listening to a favorite song and tune into my imagination

You can use too many words

You can say too much

I’m not trendy enough, too pale, too short, too sleepy

Or is that you Epstein Barr?

Infecting my remaining motivation?

Obliterating the words before they are written?

That thin wristed girl, who balanced in high heels, dancing in the dark

Her head full of sound

If you came and found me now

Stroking the night clear of wreathed clouds

I’d be sleeping beneath the magnolia

Learning the runes of its roots

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Random cruelty

Her mouth

Had a tremor

Just beneath the surface

It spoke

Of the repression of horror

If she let it out

That creature would

Climb to the highest point

And start screaming, needful not of words.

She wrapped her arms around her chest

Feeling the absence of one breast

Her mom used to say

You forgot to grow into a woman, flat chested sparrow chick

Her boyfriend liked her angularity

It’s not very Latino, her sister decried

Shaking her own ample swelling bossom

She favored simple necklines and no bra, catching soft balls with callused hand

Then why she wondered

Did my breast betray me?

I never demanded anything of her

My children did not

Tug with hungry mouths on her unduly

Nor a lover, bite unkindly deep

She felt the tight, smooth scar

Like a flat knife lain on her chest, like unwanted medal

It seemed to hotly whisper

The curling, metal irony of us all

Without sufficient power to stave

Fate’s random cruelty

(For all women)

Fortune cookie

A girl who used to look forward to dinner and a movie

The simple pleasure of walking hand in hand with stillness and a harvest moon

was handed a poisoned fortune cookie

caught a virus, and that virus crawled into her stomach, like a ray gun

it changed the waves until, her stomach like arrythmia of the heart

was fitful and lurched

she was instantly sickened, from a person of health she turned

green

her body shut down and said

no, I don’t want to eat

dimly she remembered the days

she would lust and long for food

her appetite completely gone, the acidic growl of her stomach

held all dominion

she was slave to nausea 24/7

like a merciless dictator it left her no peace

even in the lingering hours of night

she woke bathed in sweat

her stomach somersaulting in wicked mirth

such a terrible feeling of imbalance and sickness

her hands gripped the sides of the toilet

she prayed until her head ached

for nothing could have prepared her

nothing assuaged the constant torture

every day of every day

she began to imagine

her death

fondly like a fantasy

and then when she realized what she was doing

she would cry until the crying

made her sicker and she had to stop

bottle all the anquish up

but there was nowhere to throw it, or store it or let it free

it built higher like a fortress

locking her out of life

days, weeks, months went by

she was captured between glass

unable to eat or drink without throwing up

or wishing she never had to try to chew, force food in green bilious mouth

perhaps it was punishment for a former life

where she was greedy and ate too much

or tormented the Fates with the heal of her shoe

it seemed definitely karmic punishment

just as her will to live, ran thin and irregular

sometimes imperceptable

like arrythmia pulses below the surface

that would not quiet or return to normal

disturbing former calm we take for granted

a girl who used to look forward to dinner

sits at a quayside cafe, drinking empty glasses

eating plates without food

staring at turbulent water rise and fall

waves crashing without sequence, into wet wood

holding back or pushing forward, who knows?

one day either the sea will admit defeat, or erode everything

and that is how I will be free, she says

to carefree birds overhead, yet to be struck down

they know not their good fortune

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.

Anger

The therapist

she doesn’t look her age, though it wouldn’t matter

she is wise in years and that’s what counts

her skin reminds me of a Swiss lady I knew, she has the color of travel

and I trust her which is all that is needed

she asks me, why I don’t get angry

I think about where my anger has gone

after all I was an angry child

only the other day a friend’s parent reminded me

‘you were a naughty little girl, but I know it was because you were mad’

it feels like she’s talking about someone else

because I have lost my ire

that’s not a good feeling

if I had it back, I imagine

I’d rage through the streets, decrying the bad deeds of an indifferent world

but I sit quietly reading a book and the clock is ticking down the hours I am not

angry

for anger …

can be a severance, a sword, a spike

and we know that

so we tuck it, tightly to sleep

there it lays, sometimes for decades

burning a hole in our placid smile

I know someone who is angry, and they

are a short rocket full of sparks, able to go off at slightest provocation

whilst I, am measured and sensible, like a bad calculation

it gets me nowhere

because I am hurt

deeply by the injustice of little and great things

whoever told me not to be angry, that I didn’t have a right, that it was selfish or

low-brow or just plain bad manners and SHAMEFUL

isn’t here now

and I am, stuck on the wheel of sickness where they like to say

‘isn’t she calm and well adjusted to her own personal brand of hell?’

I thought strength was not letting anger get the upper hand

but i’ve been in a war without any weapons

sometimes anger is better than turning inward or, staying still

it fuels the urge to live

it leaves bruises you remember

I am angry

behind this painted mask and ironed clothes

I am a raging angry woman, with still unbrushed parts

who wants to throw the phone when it rings, out of the window, deliberately breaking glass

I am fury and it is a desire of mine

to scream until my throat is sore and beseech the skies

I am quivering with rage and if I could, I would, throttle the fates

for there is anger inside and though it is buried deep

it has a voice and that voice says

why me? why me?

(Not meant self pityingly, rather, a hard truth.)

Second chance

Not if, WHEN I am well, I will not squander, but should not have needed, a second chance

It will be / It already is / a spiked and harpooned, learning curve

There is humiliation, in not being insightful enough

That it took, being brought to kneel, flayed by horrors, to be grateful enough and find strength

As only when / it’s almost too late / we plead and beg / for one more chance

It is the truer person, who needs no such prompt, but lives rightly, first time around

I am declaring reincarnation and broken-handed, putting myself back together, limb by limb, until even I, do not recognize, the survivor within

She has sore knees from beseeching and a box of unwound screams for keeping

Maybe together, we can shift the albatross, tie on our ice skates, and, leaving bearly visible lines, skate the circumference, to where we last left ourselves, before water absorbed and we sunk, full of the weight of years, undone

Long ago and just now, these worthiest goals lay fallow, ink blots of punctuate

For the urge to live fully, is always most powerful, when denied.

Then, it is up to you, said the rise of each, urgent day

To scatter yourself in those lined troughs, awaiting divine chemistry

To grow once more, whole, when the door is opened and light let in, again

I pray for all, who yearn to begin

One way you can see, throw a penny in a pond, watch ripples cast divination

Fortune can be such a fickle playmate, the one who steals your efforts from your plate or, coin shall surface, catching sunlight, glint, at days ahead, not so dim

And while you wait inside your bird cage, the journey of even those imprisoned, can rise, from the depths of status quo

The lost and lingering who have forgotten how, to float on water