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.
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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

The road

At first the road seemed seemed impassable

Such a long distance with no sighted end

90 pounds was

A hollow eyed effigy, struggling not to drown

100 pounds was

A sickened mouth, forcing itself to swallow and chew

110 pounds was

A hunger to gain lost appetite, swill of food laying heavy with each urged step

120 pounds growing muscle

Punching the fuck out of weakness and despair

125 the goal, she fought, her joints bloody and plastered together

When she arrived, her body, her mind, her vibrating soul, she stood and cried

At the distance she’d travelled, cracked knuckles captured in dried clay

Stretching like bad memories, bleached by unrelenting sun

In spite of this, still, a flower is able to bloom

Birth

thumbnail

It is said

by mouths that do not move

it is gauche to write about oneself

(over-much)

and she didn’t always, for the world had so many things to describe

until the sink hole swallowed her breath, tar covered and added feathers

her crimson brand ran like a howl down a deserted one-eyed street

if she were a fish she’d have no scales, and nothing to measure what she lost

nor a compass to find through hooded treeline, her way back to who she’d been before

this is the way of transformation

forced from our stage we are bound and gagged

the way forward obscured like rubbing grease on glass

it hurt to be cut by ice, it stung to know no intuitive language

hands tore at her sides whilst she slept on a brick within a house, held down by gravity

they told her; you will not recover it is time, to put aside hope

along with your beautiful dresses, your long dreams and afternoon sun

she wasn’t ready to lie, like a pin against other cold metal

to be counted and cooked to the marrow, ready for sucking

for she was warm, she was alive, she hadn’t climbed all her life, just to see a cloudy day

it wasn’t her way to admit defeat

as migrating birds returned and sat like tired audience to her calls for help

she knew, a fight is never asked for, it beckons you when you stand on cliffs edge

trying to count the ways you might die

such a sorrow in planning your own end, long before you intended

she still had so much still to do

hair to plait, skirts to hitch, and ride, ride out into the wilderness

where raw bones are the purest listener

they will hear you when you throw yourself down on wet moss and

burying your fevered head in earth, call upon angels

for protection was something she hadn’t thought of

since she was a little kid walking to school alone

and then she had an imaginary horse, and all the years to come

now, the clocks turn back, time rushes forward like an impulsive guest

who has drunk her fill

ransacking light she streaks out into the forest and you cannot follow

because she is quickly absorbed into gesturing evening dusk

perhaps never there at all

that’s how she feels now, half alive, half hanging on

at the witching hour, it is all she can do not to throw herself into the glittering lights of oncoming traffic

for she is not as strong as those who endure like a costume, their own brand of hell

she has only herself and it isn’t enough

so the words come

and they stay loose and unsure upon the page

as if they know her fragility and their own insubstantial compose

if she can stay long enough, maybe she’ll see something new

maintaining equal hope with encroaching dawn

that is when everything from the day before, gathers

turns to dust and we begin over, perhaps better

with every urging push, splitting apart, garnering strength from invisible force

as fierce and distant as a Northern wind

we who know, how to birth life and produce hope

from the fragility of almost nothing

 

(Inspired by RandomwordsbyRuth who said; “Survival is the highest form of compliment we can give ourselves.’)

Papier-mache

e23b1d77a3144773d37a060c30b340b9--the-velveteen-rabbit-being-ugly

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?

Nearing fire

Ophelia_by_EarthDefectShe was not a hunter

She did not compete

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

When it rained, she stayed dry

Her hearth and rug, small morsels of comfort clutched

For not venturing out, salved potential for harm.

She grew up on the black hard bread of fear

Of the river breaking its banks and drowning

Those she loved

It was an inherited sense of loss

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

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

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

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

To a child.

She grew scars as self armor

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

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

The pinches, taunts, jostling, glut on perpetual war

Plasma and soldiers, drunk on devouring dear goodness

She stayed listening to the sound of the rasping wind

Beating on the old oak door

As if everything possible came together and fought

To get inside.

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

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

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

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

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

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

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

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

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

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

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

The thin ledge we believe protects us from imagined harm

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

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

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

Unbreakable

The riot

Began on a quiet night

She slipped out of her skin

Swam in silver

Becoming a thing without need of heat or pulse

And blooming beneath the waves

Briefly recalled

The lost heartbeat and its mercurial wont

To fall in love, to feel and dance

Sweating and electric

Swaying like sea creature become used to land

The breathless longing and great pain

For if, you cast off your humanity

You may lose more than the disturbance of life

The very knocking against your chest

A thunder, a pain, a joy

That supplicate and clenched urge

Sometimes silently played out on the watchful flicker

Of hands casting over and over

Some semblance of longing, unbreakable