Submit your work to these two anthologies

BUT YOU DON’T LOOK SICK: THE REAL LIFE ADVENTURES OF FIBRO BITCHES, LUPUS WARRIORS, AND OTHER SUPER HEROES BATTLING INVISIBLE ILLNESS

AND

THROUGH THE LOOKING GLASS: REFLECTING ON MADNESS AND CHAOS WITHIN

Indie Blu(e) Publishing is thrilled to announce that we will be starting off 2021 with sister anthologies, But You Don’t Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and other Super Heroes Battling Invisible Illness AND Through The Looking Glass: Reflecting on Madness and Chaos Within.

The focus of But You Don’t Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and other Super Heroes Battling Invisible Illness will be on writing and art from those living with a chronic but invisible physical illness or disability, such as fibromyalgia, lupus, multiple sclerosis, cancer, digestive disorders, chronic fatigue syndrome, diabetes, migraine headache, dysautonomia, etc.

The focus of Through The Looking Glass: Reflecting on Madness and Chaos Within will be on writing and art from those who are living, or have struggled with, mental illness such as mood disorders, anxiety disorders, eating disorders, personality disorders, post-traumatic stress disorder, or psychotic Disorders.

Writers and artists are welcome to submit to either, or both, of these anthologies as applicable to your lived experience.

Given the high volume of submissions that we are expecting, we ask you to follow the submission guidelines as closely.  If you are submitting to both anthologies, please send your submission in two separate emails.  We will begin to review all submissions after January 1, 2021.

Please note that we are not able to offer monetary compensation or free print copies to contributors to these anthologies; however, all contributors will receive a PDF copy of the anthology they are published in. Indie Blu(e) Publishing has prioritized the accessibility of our titles and providing an outlet for artists and writers who might not otherwise get published over profits since we first launched in the fall of 2018.  Keeping 400 and 500 page anthologies affordable globally in a pandemic is challenging.

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But You Don’t Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and other Super Heroes Battling Invisible Illness

Anthology Submission Guidelines

SUBMISSIONS ACCEPTED: December 1, 2020 through December 31, 2020

SUBMIT TO: IndieBluSubmissions@gmail.com

SUBJECT LINE:  But You Don’t Look Sick Submission

SUBMISSION FORMATTING GUIDELINES 

• The maximum number of pieces for submission per writer/artist is six (6).
• Writing may include poetry, prose, short fiction, essay, and/or creative nonfiction
• Individual pieces of writing should not exceed 1,000 words

• Writing should be submitted as a single Word attachment to your submission email.  PDFs are the acceptable alternative if you do not have access to Word.  
  • Please use either 12 point Arial or Times Roman font with 1.15 line spacing.
  • Individual pieces of writing in your Word document should be titled, and separated by Page Breaks (not hard returns). A page break is achieved by using Control+Enter.
  • Special formatting is strongly discouraged.  Bold, italic, and multiple font sizes in a single piece are acceptable.
  • Please title all attachments starting with your first name,last name.  
• The exception to this is if you design your submission as a ‘camera ready’ JPG or PNG image that we can import into our publication as we would a photo. In that case, you may use any formatting you wish, but the image must be crisp, 300 DPI, and able to be reproduced clearly in black and white. If in doubt, please contact us at IndieBluSubmissions@gmail.com before submitting.  Your ‘camera ready’ writing must be accompanied by the text in a Word (or PDF) version.
• Artwork submitted for the Anthology must be crisp, 300 DPI, and able to be reproduced clearly in black and white
• You will be notified if your work is accepted. Please do not consider non- acceptance 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.
• All contributors to the anthology will receive a PDF copy of the finished book

BIOGRAPHY: All submissions must include a professional biography and cannot be adjusted once submitted. Bios should be 75 words or less long and may include your social media links.

You will be contacted directly through your email when your work is safely received for submission.  If your work is accepted for the anthology, you will receive an agreement letter that you need to complete fully, sign and return to us within 10 days. 

PREVIOUSLY PUBLISHED WORK We will accept previously published work but must have written permission by the previous publisher attached with your submission if they retain rights to your work.

If you own the copyright, your permission and the date and title of the previous publisher must be included at the bottom of your submission. 

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Through The Looking Glass: Reflecting on Madness and Chaos Within

Anthology Submission Guidelines

SUBMISSIONS ACCEPTED: December 15, 2020 through January 15, 2021

SUBMIT TO: IndieBluSubmissions@gmail.com

SUBJECT LINE:  Through The Looking Glass Submission

SUBMISSION FORMATTING GUIDELINES 

• The maximum number of pieces for submission per writer/artist is four (4).
• Writing may include poetry, prose, short fiction, essay, and/or creative nonfiction
• Individual pieces of writing should not exceed 1,000 words

• Writing should be submitted as a single Word attachment to your submission email.  PDFs are the acceptable alternative if you do not have access to Word.  
  • Please use either 12 point Arial or Times Roman font with 1.15 line spacing.
  • Individual pieces of writing in your Word document should be titled, and separated by Page Breaks (not hard returns). A page break is achieved by using Control+Enter.
  • Special formatting is strongly discouraged.  Bold, italic, and multiple font sizes in a single piece are acceptable.
  • Please title all attachments starting with your first name, last name.  
• The exception to this is if you design your submission as a ‘camera ready’ JPG or PNG image that we can import into our publication as we would a photo. In that case, you may use any formatting you wish, but the image must be crisp, 300 DPI, and able to be reproduced clearly in black and white. If in doubt, please contact us at IndieBluSubmissions@gmail.com before submitting.  Your ‘camera ready’ writing must be accompanied by the text in a Word (or PDF) version.
• Artwork submitted for the Anthology must be crisp, 300 DPI, and able to be reproduced clearly in black and white
• You will be notified if your work is accepted. Please do not consider non- acceptance 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.
• All contributors to the anthology will receive a PDF copy of the finished book

BIOGRAPHY: All submissions must include a professional biography and cannot be adjusted once submitted. Bios should be 75 words or less long and may include your social media links.

You will be contacted directly through your email when your work is safely received for submission.  If your work is accepted for the anthology, you will receive an agreement letter that you need to complete fully, sign and return to us within 10 days. 

PREVIOUSLY PUBLISHED WORK We will accept previously published work but must have written permission by the previous publisher attached with your submission if they retain rights to your work.

If you own the copyright, your permission and the date and title of the previous publisher must be included at the bottom of your submission. 

Advertisement

TLDR is bogus / we should read, we should care and take the time

TLDR is now in the dictionary (which I think is pathetic). Unfortunately this post is going to be too long and you don’t have time to read it fair enough but I’m writing it anyway because I have to.

…

Today I found out a very lovely girl I recently met (nothing is random) has Gastroparesis. It really affected me. See I had put all the awful horror of last year and the early part of this year into a box and avoided it. That’s what you do when you feel traumatized and are just trying to get your life back. How lucky am I to even have that opportunity?

…

Seeing those who continue to be sick, year in year out, through no fault of their own, makes you so grateful for any renewed health. After getting suddenly and violently ill last year in March with a suspected Noro virus, I got better quickly but remembered the awful feeling of unending nausea. I had two more brief bouts in May and June the last one sent me to the ER for the first time in my life because I had what felt like heart palpitations. Then in August of last year I got violently ill out of the blue, half way through the day, and didn’t get better for nearly a year. One of the hardest parts is how badly let down you can be, by people you thought cared about you, but on the upside, you also find out who really loves you and who doesn’t and that can be powerful and freeing.

…

I had to quit work for the first time in my adult life, I went into massive medical debt and I was suicidal for the first time in my life. I’m not saying this to make anyone feel sorry for me,I feel lucky. I’m saying this because I didn’t know ANY of the stuff surrounding this before, I was taking my health for granted, I thought being healthy living meant I would avoid bad things, it doesn’t always work like that.

…

It is thought Gastroparesis and other similar extreme illnesses are primarily caused by either Diabetes, complete breakdown of your autoimmune system, physical causes like gastric-bypass surgery or something you are born with, but most commonly is considered to have NO CAUSE. However if you do some research it becomes clear that VIRUSES cause the latter onset. Why women get it 9/1 over men and why pre-menopausal young, fit, healthy women get it, is also unknown, although studies show having a full Hysterectomy can reverse it so it clearly has a link with ESTROGEN.

…

I was told after being so violently ill for months without ANY cause found that I must have Gastroparesis. Gastroparesis is actually very rare but has become a catch-all umbrella term for anything the medical industry doesn’t understand. Supposedly the ‘gold standard’ test for this is the gastric emptying test but I found it is very unreliable and can vary from day-to-day. I was put on REMERON which is supposed to help a bit, if anything it made me worse. Fortunately for me, the city where I was at that time living in, San Antonio has one of the best Gastric Research Centers in the US I was able to see them and what I was told was life-changing.

…

My doctor told me I definitely did NOT have Gastroparesis and that in his experience 8/10 people diagnosed with non-diabetic Gastroparesis don’t have it. I had an EGG which showed my stomach was literally flipping and lurching and not emptying fully because it was ‘dumping’ too fast – this is called Gastric arrhythmia and is almost the opposite of Gastroparesis. I was horrified that they could have got it so wrong.

…

I was put on a very low dose of a medication that slows your stomach down. I’d lost so much weight it was dangerous, I couldn’t eat, I was throwing up all the time, I had constant diarrhea (which interestingly most Gastroparesis patients don’t have but they completely ignored how illogical it was to have constant diarreah despite this being almost the opposite of what you’d think of when you imagine a ‘frozen’ or non-working stomach which is the definition of Gastroparesis). The medication changed my life.

…

I had been suicidal for the first time ever because I decided if this didn’t get better I would not want to live. It was too awful. I didn’t have any family support, I felt so alone day in day out, that’s the worst part about something like this. That’s why my heart bleeds for those who are going through it. I had so much medical debt and couldn’t work and was nauseous (really, really severely not a little bit) 24/7 it ruined my life. The medication changed everything I’m still sick but I can finally work again, I can eat normally although my appetite never came back and I have to force myself which sucks. I have put on more weight than what I weighed before I got sick (as a precaution) and I am on the road to recovery. BUT I keep thinking of those who are still going through this.

…

I feel finding out today this lovely friend has what they thought I had, not only means I must do more to help others, because I KNOW how they feel, and what they suffer, but because we need to find out why this disease and others like it, are happening so often now when they used to be super-rare. It isn’t because people aren’t eating organic, most of the people I know with these things did eat well. Many of the doctors dismissed the link to Epstein Barr Virus and it was my PCP who finally decided to test me. My results showed I had EXTREMELY high titers of EBV in my blood. I worked out after contracting the Noro Virus last March I must also have either had a reactivation of EBV from childhood (90 percent of us get it as children or young adults) or I had never had it and got it for the first time.

…

Either way I realized EBV TRIGGERS Gastroparesis and Gastric arrhythmia. Somehow the autoimmune aspect of all Herpes Family viruses (like Shingles too) trigger various illnesses. The most common you think of with EBV are ME, Chronic Fatigue, MS, Fibromyalgia, Stomach Cancer. But more and more doctors are seeing stomach issues like Gastric Arrythmia and Gastroparesis. The medical industry says Gastroparesis is incurable. I don’t believe it is. I have read that if you can get your EBV down you can get over Gastroparesis. Many times if this is the cause then beating the virus beats the symptoms.

…

The only current treatment for EBV is high dose Vitamin C. I could never handle the acidity of Vitamin C. I found that Dr. Mercola made a Lypoic version that doesn’t hurt your stomach and I began to take 4000mg daily. Ideally if you can then IV Vit C works even faster and better. Once the EBV is reduced in your body the symptoms of the Gastroparesis may abate. The information online is awful and inaccurate, it basically says you will have it for life, but I have known people who overcame it, through diet modification, managing stress (which can exacerbate any serious illness) , adequate rest and treating the CAUSE which doctors never talk about because they want to treat the symptoms.

…

During this time many things changed in my life, at first I thought those changes were bad but I have come to see sometimes you have to force yourself to change, and what you think is a bad change, actually is a blessing in disguise. This illness forced me literally to reexamine my life, I realized I needed to make changes, which included moving and living elsewhere, as well as redirecting my energies into things I’d neglected such as teaching dance again and not giving up on my writing. I had let the awful experience dampen my hope and the truth is, when you survive something that awful it gives you a chance to find your joy again which I have in so many ways. I’m still on the road to recovery, I still have pretty bad days, but I am mindful of how far I have come and that along with support from loved ones makes all the difference.

…

If anyone you know is having severe stomach issues and they need help please give them my details because I want to help people. So often people are isolated and uncared about when they are sick. I have known many who have chronic illnesses and they are neglected by their families and invisible in our society. I felt totally alone when I was at my sickest it was the worst feeling in the world, which happens to most who experience long-term illness. The hardest part being since serotonin and other brain chemicals are actually made in the stomach, when you have severe stomach problems you get extremely down and anxious. On top of that Gastric arrhythmia produces a physical anxiety that had me crawling out of my skin, something I never had before.

…

I am truly blessed for having a chance to recover, but I believe in paying forward and I also believe if any of you know someone suffering, some of this information can help that person. The doctor I saw was in San Antonio, Texas and he was really, really good and I’d even say flying there to see him would be worthwhile, he is the clinical director of the National Gastroenterology Research Center in America.

…

If it wasn’t for him, those who love me and doing research I KNOW I would have either killed myself or spent the rest of my life suffering. I want to help anyone else get as well as they possibly can. I truly believe viruses are the cause of most things (cancer, etc) and we can fight them. You are NOT alone. Pass this on please to anyone you know who may be suffering. Thank you for reading if you did. We need to bring awareness to rare diseases like this that are growing in number and striking healthy young people in their prime. Never give up.

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

Papier-mache

They said, keep the blinds drawn, what we have to say, isn’t good

they lay her down on a white sheet and beneath, the hammered metal hummed

the bulb in the middle of the room, behind linoleum, sung a hissing song

their white-coated pluck and scratch, indifferent and sterile, she was just, flesh and blood

another in a long line of patients who, largely were forgotten, consumed by a machine, uncaring of individual

she could feel the dried corners of her eyes crack, as she looked left and right

someone once told her, adult survivors of abuse, find it hard to relax

they are always looking for what is crawling out of cupboards

she didn’t want her past to run her future, but now it seemed, her future was in doubt

never before had she felt so alone

the petty bravery of moving countries, seemed a facile thing, for children who didn’t yet know, true terror

surely it is easy to be brave when you have no war, and are just posting letters

she lived like that for so long, running from childhood’s sadness, enjoying the wide open space of adulthood

thinking she had all the time in the world, surely growing older was for another life

it wasn’t entirely selfish, she did her part, but there was always the tendency to want to make up for the past, by living without a care

and then it was no longer that way

impossible to ignore, unable to let go of, she was swiftly consumed and irrevocably changed

even if tomorrow the cloud lifted, she would never walk as lightly as she used to

the power of naivety, ignorance is surely, our dearest friend

now her heart beat fast all the time, unable to still, the surge of emotions inside

she was a rabbit in her burrow, smelling fox

she was no longer the quick silver of a girl, without terrible knowledge

days were unbearably long, and serious, like the frown on an old man’s face

they spoke of compromise, a series of steps, faltering and bursting apart and trying over

it was as if all of her was removed and pummelled into earth and made to rise again

never was it more silent, never did she wish for the phone to ring and something to let her out of the nasty trap with jagged mouth

words are just words, she could have said; I am strong, I am going to fight, but in the next breath she may

simply not be able

and that lack of, that inability, like a prison, or a sudden dismemberment, was, a kind of horror she’d never been creative enough to imagine

like being stolen from yourself, and hearing in the distance, the sound of children dancing

to your favorite song

if life is indeed a battle, she thought, this is where I need to buckle down

put aside my tendency to want to climb out of the window and skip the lesson

stifle the longing to run fast, in the opposite direction

everything so far, had brought her to this point, it wasn’t what she’d imagined

instead, she’d hoped by now, she’d have found her groove, begun as humans tend, to build her fortress

it wasn’t time yet, it wasn’t nearly time yet

and all the days she’d squandered, thinking there would be more

all the long drawn out machinations, to position herself and be ‘responsible’

denying the lustre of living

she’d put off joy so many times, in favor of ‘sensible choices’

where were those now? She berated herself for not having taken

more vacation, more experiences, that glass of wine, danced on that table top

she worked for a future, she may never get to experience, sure she felt bitter, angry at her lack of insight

though most believe, we’re never ready for bad news or, the fall of favor

we think we predict worst case scenario but that’s only an anxious mind

seeking to control the uncontrollable and unknown

nothing prepares you for a premature curtain fall

nothing shores you up to deal with catastrophe

we muddle through or we give up

those are the only two ways we journey

when the wet-ass hour comes tolling

she felt a grief for her bad choices and wished, like others she could have no regrets

it is hard not to regret when you’re cut off from everything

difficult to look forward when the present is biting at your ankles

she wasn’t one to pray for herself

but she did now

she prayed for the strength she felt she didn’t have

she prayed not to feel so isolated

cried thinking of how many before her, went through this darkness alone, their hearts aching to be cared for

she was a little girl again, looking for her mother beneath furniture

seeing her in album covers and from the top of buses

that woman had her mother’s eyes, large and dark

that lady’s figure is slim and reedy like her mother’s was

at night she wanted to feel the way she imagined a child does

put to bed and told, everything is well, you are safe

if she’d had children, she’d be saying it to them now

but life threw her a curve-ball and she ended up reproducing only

empty rooms collecting dust

perhaps it was for the best, now that she’d sunk so low

for how could she care for anyone, when she could not for herself?

if everything has a reason, she wasn’t sure of this

to teach her gratitude? To punish her for lassitude?

if there was a God she hoped, somehow to end her suffering, even by means of eternal sleep

but she felt bad for praying when so many, suffered far worse than her, and how they coped, she did not know

only that she had to try each day to keep going, in what direction was unclear

she wasn’t sure of the sign-posts or meaning, it was too easy to let fear, guide her way

so many things needed to change and yet, she was tired, so tired of fighting and being scared

they say those brought up unkindly, learn to be strong

she didn’t feel strong at all, she felt like only a thin wind, kept her from collapsing

and all her plans were thrown in water, watching the ink bleed out, with nothing left to find, but papier-mache

her grandmother once told her, out of nothing you can build, entire universes

she tried now to imagine a place, where she would be restored

where all the things she still had to do, remained possible

surely you can tell when, the end of the record is over and, it’s about to go quiet

she hadn’t been able to, she’d one day been carrying her dancing shoes, across the newly waxed floor, her eyes feverish with anticipation

and the next, swallowed by sickness, left without curative

only the static of a cold room and a script for patience

she’d been spat out of the system, left to flounder by road-side

how different, she thought, from childhood where, we do everything to protect them from fear

sewing toys that will keep them company at night

mobiles to send them to sleep, songs to ward away nightmares

and at some eventual point, we decide they’re ready for the real world

full of savagery and disregard and people who are supposed to help

but are only doing the bare minimum

is it any wonder we flounder, and miss a step?

looking around in wide-eyed fear

mouthing the unasked question

is this what it feels like, to be real?

To be that girl again

I breathe

Listening to the words

In my aching chest of wingless birds

They say

I am afraid

Today I woke and prayed

For a better day

And it didn’t come, though I heard the horses

They were galloping fast, they did not stop

How momma? Do we stay grateful? For every given hour of precious breath?

When scythe of hurt cuts so well and wraps the days away in little vials of hell

How to live in the present, when presently is torture, crushing her toes on pointe?

I try momma, I break the fine bones in my hands in supplicate, my arms making sundials on wanting earth

I ask my toy penguin

He eyes me with the same glass eye he has been using since I was little and he saw me break

And turn to seed and grow back into a girl who recognized he was real

And I know if there were a flood

I’d save before myself, that glass eyed toy

He has seen my days in ways nobody else, could or would

Though he is stuffed and inert, also the witness to each tug of war, his little cloth heart

Beats like a stray moth against my window pane

He tells me to remember

Despair will pass

A bad day is not forever, and so in time we’ll learn to hold, tighter

The unbearable and it may turn, like shaken snow globe, upside-down, white obscuring foul

Some slow imperceptable change of season, a sign, the very beginning starts with one

If he could speak and he does

He’d tell me to be brave and wear my best dress for the clouds cannot and will not persist

Take comfort in those smallest things

It could be one minute in an hours slow turn of hand

It could be one moment out of three weeks broken by tired cries

I am on my knees

I long for peace

And the quiet of memory reminds me

You have been here again and again

You have risen to answer the entreaty of a heart still beating

Longing to be released from her sentence

And if you look closely

There is still

A desire to overcome with the wish of a river to capture rain

Stronger than anything you’ve ever experienced, my penguin knew before myself

He is who I’d save, if the world exploded into flames, curling value to cinder

I am reminded of what I can feel by his capacity to shake, my despair out of her plan

To hang by tree and catch late afternoons air, as dead as last night’s terror

And I stroke his face

Wishing with everything that stuffs and fills to become me

To be free to laugh again

I promise him

To be that girl again

Wellness

I am aware of the acrid taste in my mouth

of months

rolled under yellowed paper and stuffed with dust

I am aware of the dusk and the dawn

as it begins and falls outside of my existence

for the confined are the ones, who most seek the light

held back by the devil on my back, digging his rusty spurs

I dream

of who I was before, and who I may again, become

Restrained in abayence, watching the spin of twitching world

was there a time yet? I did not sicken at the mention

of nutrition and sustainence?

or energy enough to power through, whatever ailed me

now the vampire drains me of enough, I can only watch

in flickering shadows, a dance of memories across my jaundice

so much has come and gone in this short time, where a day

feels eternal

where an hour of pain is like

a life time without

as if cruelty stretched it out

until you could hardly see

where it began and where it stopped

or maybe it did not

end and instead

drags out, again and again, as if set on repeat

wake up, sicken, do the same until all you see

is the specter of yourself, treading lost time

and the taunt of health, is always a little too far to reach

yet you must try girl

yet you must seek

wellness

Six Months

Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.

I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.

I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.

You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.

If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.

I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?

It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.

That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.

You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.

Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.

What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.

The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.

I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.

I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.

Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.

It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.

If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.

First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.

I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.

Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.

I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.

Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.

So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.

Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.

I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.

That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.

My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.

If you’re reading this and you feel hopeless, know that you are not alone and there is hope.

Out of time (2)

I’ll save you a place

On those days

Where waking it takes all

To muster gratitude

Yet we do

You and l

Find the fox path through thicket and dence bramble

Where light footed children before us ran

Soft in tow, elongated against shadow

Spilling their amusement like hay seeds

And stubborn burr, clinging to wool coat

Just in case it should grow cold

Then from our tree house

We’d forage for kindling

And brighten the alcoves of elm and foxglove

Just like when you were gone

Sealed in a room like you’d boarded a ship and steamed

Through hectered expanse, combed wild with distance

So far I could no longer hear your metronome

When windows flung like outstretched hands, you played Eric Satie

Able to conjur emotion without perfumed love letter

When all I had was a supple back and trained muscles

Dry with chalk, head bowed, waiting to mount and vault

Gymnast or star catcher, seems likely both

Such peacefulness in throwing out fears

With a twist of wrist, a spring and leap

When you do not hold back, that’s when you see

This world’s underpinning like a great silk train

All the seasons following in ivy headdress

Who knows the mood, a temperature of pick pockets

Punished or saved, sometimes hard to tell

We are like an indigo building storm

When weather is calm you can never tell

Invisibly, out of sight, burgeoning swell

Blowing cracked cheeks, gathering momento

If you keen into white noise, leapfrogging over din

Whispers on wind, gentle turns to fierce

We are so like our Creator, twisting at whim

Or by design

Either has the thickness of a stranger’s hide

Not our timid hearts, cowering at first lighting strike

Out of time, urging forward despite ourselves

Only then

Thinking about strength

What will it take

To change out the crumpled suit

You’ve worn almost to death

Though not yet

It isn’t death you should fear

But not living

Being incapsulated

In redundant urge

Truth is waiting 

Like a small round shouldered girl

Watching herself reflect in cold river

If she jumps she may drown

But staying still is often worse

Easy to ignore when new to the dance

Easy to neglect when all is going well

We learn in adversity

We become more of our stalagmite

Or something transformed

It’s the decisions keeping us from knowledge

A rare moment, often painful, offers the shove

Over a cliff, out of comfort

On our knees begging for Mercy

But she is no God

We carve identity and battle from our own leather

Skinned of illusions

We stand dripping and terrified without defense

Only when it’s all stripped down, pared to the thinnest slice

Believing we cannot survive

That moment

We learn again

To truly fly

For Rick.

Cinder

I hope when we leave this lapsing category of malaise
It is to move toward; “All better now” and “well”

And never look back ….

At those rags that became us

Chained to a monstrous reality

Foisted like gravity

An unnatural disaster, scattering months

As what you took for granted can mock

Even the most stalwert

**

Before we were thrown together 

You were sane and I was whole

Not the vomiting wretch you met

In the dim hallway of limbo

We held onto each other

As broken pieces seek comfort

In the sharp edges of others

Not misery loving company, as pleated savagry

Misunderstood by that exterior world named;

“Those who are well, as we are no longer”

**

It was always night and always day

No difference

No discernment

To starve on the circumfrance 

You understood

The sudden loss of everything

We wrote, as violet penned lovers

On pieces of ourselves

Every tear, every unfurnished gap

Showing where parts of our whole had

Turned to ashen facsimile

**

In our former world

We may never have

Shared a long drawn breath

And here, in a room without clocks

We assemble words like kindling

Speaking of forbidden things

The rest of the world seeks succor from

Sickness you see, is a social pariah

People flee, even family

And the world could have burnt down outside this hospital

With you and I clad in backless gowns

The ribboned IV, a sharp needle with scratched song

Our wet faces seeing only the glue of disease

Dancing like embers at the edge of pinkening day

Rolling into months, as illness will smother whatever you were before

You lost the bet ….

**

Longing to leave this new role with the urgent lust of addicts

Nosing bags of sugar, to reclaim health

Though it were a fabled prize

And maybe it is 

For those shod on soft shoes

Feeling every stone beneath

Something of trauma, acts as language

Only you, only I, understand

We’ll never be the same now

Whether we survived or died

Shifting mystery within, to a new state without

Everything changes, even the taste of day and close of night

A voice

A warning

Unwelcome insight

And you tell me

We are closer for sharing a preview of death

Than friends who laughed together for decades

For fear can make strange bed fellows

**

It is true

My friend found in darkness

Reflection of what we never say outloud

It is my wish we gather everything we have left

Set fire to the pyre

Douse argument

Walk right through

Finding out there is a bridge

Even when you almost gave up

There are hands reaching 

For whatever is left after the fall

Hope

Pitches a tent in the parking lot and waits however long

And it is that 

Or maybe nothing more than will

A will to reclaim

That sets us trying again and again

With the forge of desire

Silver in a cloudless sky