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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For what they did yet not know

140829195756-22-women-in-comedy-restricted-horizontal-large-galleryYou thought it was bad when

you got your first zit

and the unblemished skin of your youth

erupted like Everest

you thought it was bad when

you got your first stretch-mark

and the smooth thighs and breasts of your growth

betrayed the camouflage

you thought it was bad when

you got your first scar

a thin line of emptiness which they said

the bikini would hide

you thought it was bad when

you sagged and you spun with weight loss and gain

in the span of twelve fevered months

and then it seemed

unimportant

because those scars

the immature loss of vanity and adulation

crying over not fitting into yourself

the lament of sudden change

was less than the stubborn plant of your feet

in survival

and you went to your neighbor

who was missing a breast

both of you shared

the disjointed humor of pain

and you went to your preacher

who had lost his testicle

he joked about being single

and you went to your park

saw women with brain tumors cut out

walking their high energy dogs

and you saw

this silly game of magazines and perfection

of I will stay 20 and flawless forever

of men who would leave when you get cut up and bleed

how it is but part of a bigger picture

that of sweat and guts and fear

and surviving through gritted teeth

even if he left because you were no longer perky and up for it

because you threw up at midnight instead of

giving him head

even if the girl at work could wear heels and short skirts

and you hid your swollen stomach behind swaths of cotton

or couldn’t get out of your bed

because then … just as everything seemed

to be wrinkling and disintegrating and rebuilding

into something unfamiliar and changed and partially incomplete

another man with light in his eyes

who didn’t care about such things

smiled at you as you walked beneath the yawning trees

because your medication said

avoid direct sunlight

and he said

I have the same problem which makes it hard living here doesn’t it?

and you talked and he smiled

and said

I like the way your eyes twinkle

and you said

I get that from my grandmother

even when she was eighty-five she was

proposed to by farmers who thought

she looked like a kind of Katherine Hepburn

and he said

I can see that

red

would you like to meet here tomorrow again?

and you saw the way the world really worked

underneath the adverts for boob jobs and butt lifts

and reality tv that’s nothing of the sort

his hand brushed yours and you saw

sunspots on both

it made you laugh

a little like a hiccuping hyena

and he laughed too

the survivors

beneath the canopy of life

snorting like five-year olds

as skinny joggers with air-brush tans ran past

with sad empty looks

for what they did not

yet know

Safe ascent

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This unspoiled place

holds a silence and a sound both

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

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

your wool pulled and caught like thoughts on wire

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

tight against battering fists and claim

how did you learn the maze and possess

parts of me I had yet to give permission?

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

against a world of happen-chance and calamity

it is only perhaps, in those untethered moments

love, unexplained by all things

captures in unguarded step

drowning tightly held belief

we are our own master

and in this yield

in your arms and the void calling overhead

a vast sky holds swell of rain

just long enough

for our safe ascent

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

Conscience

We may depend upon nothing

except the strength of not laying down

our conscience, there in forked roadway

with the languid grace of a woman rising from steam

one direction will be covered over with water

you’ll have to learn to find your inner amphibian

and if you are successful at shucking off your humanity

retreating primordial beneath turbine waves

give a thought to those who toil above you in spirit houses

burning their feet on tar sprayed land

it reeks of our short lived desperation

like stalks of young corn, we blaze from green to gold

the sand of our time, trickling ever faster through thin glass

thinking in a fleeting lifetime we behold

true wisdom

while rivers and seas we pollute, in short-lived wake

remain behind as we turn to dust, then clay

it is not our nature to care what comes after we are gone

our footprints would not singe the serenity of nature so vividly

if gathering mercy outside our own existence, were our way

yet, imagine the unfolding beauty of caring for something outside ourselves

and softly we atoned our fits of rage, in wanting to have it all

before the sun sets for always and another day is born

Endure

Along with recovery

I had wished

For one neighbor’s heart to heal, as he tried to mend a leak

Another, to survive the scouge of sudden cancer

For the little bird to find her red box

Fill it with branches and lay her eggs

Nestled blue against the hope of frail humans

For rebirth and warmer days

When the winds were the only thing to die

And maybe the scold in a voice, twisting the knife

Yes, wish it away, along with traces of fear

You have survived the winter, you are still here

The same curled toes and cold fingers, clinging on

If you don’t die, you live, and that’s what you find

As false friends fall and new are born

As spring gathers her skirts and grass turns from brown to hopeful green

As your neighbor touches your hand and his eyes speak

Of the simple gratitude of caring

You didn’t receive it where you thought it would be

There are branches higher up than you can see

Maybe the little bird right now is looking for her nesting

And just like you, she seeks the comfort of knowing

If you make your home warm and secure

They can huff and puff

But you will

Endure

Against the unknown world

They move together like quicksilver

indisipherable in pursuit

there is such a love in his eyes

her smooth hands cup his mouth

drinking the words he would gush

if they were not pressed tightly, one to the other

locked in an embrace

that gives life

quickening as signature is fluid

when she finds out, she imagines telling her daughter twenty years hence

the story of her conception;

your father and I loved you very much

we lay down by the fireplace, he took me in his arms

from this passion you were forged into life

clay breathed upon, bearing breath and soul

you were wanted, even before you chose

to fill us with yourself

my stomach grew and grew until

it was a tight drum on which to paint

the symbols of your dream

**

He moved in her, his eyes tightly shut

he thought of other women, he thought of touching himself

in the office toilet at lunch with folded magazine

and why such things happened when he had all he could ever want

here in his arms, still he betrayed with desires, ill-tuned to eternal love

when she grew fat and round he did not

wish to hold her quite so tightly, or touch her hot flushed pressing flesh

he thought of others, he got up early, and jogged his frustration into sweat

**

Don’t worry the doctor smiled, with a savage wink

as she labored and her face grew red and her hands sought his

and he wanted to run from the room and shove well fed nurse

against the wall and pour his horror of birth and future into her lipsticked sighs

don’t worry the doctor smiled, with a savage wink

i’m going to sew her up even tighter, it will be like

Christmas day when you unwrap her again

the quintisential “husband’s stitch”

and over his starched cloak and gown, the doctors grey eyebrows

went up and down and he, who was lost

lurched and threw up at the violence and the shame

of men and of women and of life and death, inequality and lust

**

then his daughter was born

fat and round and squalling loudly

if he could have interpreted those words, he felt they spoke to him a repromand

for his cowardice and his fears, imagining being a father

of growing up and settling down, of love and impossible challenges and joys

he saw his wife’s face, wet with sweat and hair plastered down

he felt more than he had ever felt, the emptiness of the past replaced

no longing to empty himself in the coldness of pornography as she slept

a lifetime from the day he first took her to bed and

stripped her of choice with impregnated seed

and now he knew

the fear of men is the strength of women

his daughter fixed him with swollen red eyes

watching him with a stearness that seemed to say

you can do this, you got this, you are not your worst thought

you can be who you want to be, you can be my father, you can love these women

you can direct our future, reshaping mountains

or fall into the arms of least resistance, worship the emptiness of hollow gestures

she seemed to be saying with her tiny fists and pursed lips

turn away from your shallow sport, take this road with us

he who once was weak, grew with love

those things that once were, no more

his resilience, their armor

against the unknown world