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.

Kissing phantoms

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I saved an eyelash of yours

grew it from seed in a

blue-bottle

at first the greenhouse huffed and curdled

not used to cultivating such delicate wings

till I put you beneath my mattress

soggy with tears morning dew

you see, I had become

a cocoon again

needing no more than

one drop of rain on my

sewn together eyelids

scalded from rubbing

you see, I had thrifted

the parts of me that had

touched you the most

so I did not have to be reminded

why my hands stayed trembling

on countertops or reached

at night into marjoram dark

why my lips were chaffed and sore

from kissing phantoms

better then, to return to wax

bury the hatchet

and ones history

in somnolent earth

smelling of tea bags and bird feathers

ear wigs and lady bird nail polish

your smile

caught winking through amber sun

your convex toes

wriggling at the end of bed sheets

like crocus pushing up

the paving stones of my new city

it will speak a different language

contain no source for tears

no receptacle for self-harm

the last newspaper says

she left to parts unknown

wide indigo wings catching

cusp of moon as

clouds colored by grief’s insistence

curdle against wan light

mist abounding like a girl

carrying her skirts through water

involuntary sound of loss despite

washing your hands repeatedly

smoothing down the shards of

wakefulness

something grows silently

in you and cannot

be reborn

In her cull

Before

Who knew how to die?

That it wouldn’t be instantaneous

As children imagine

A sudden pain, then unconsciousness

Who knew?

Death could go on years

Building and slowing like cold sea water

Burning firework left to fizzle alone in inky sky

That it would wind and unwind, a mad clock void of correct motion

Who knew?

It could take the very young, wrap them in wool, to cast down wet hill

The jarring and bumping eventual colission held at bay

Till forgotten

That it could take you

Suspend you from me and all familiar things

Where the recognition in your once clear and beautiful eyes

Became muddied and clouded with quiet violence

Your touch so soft, stolen and replaced with flinty brush off

Who knew

The courage of fighters

Seathing against their sentence and eventual

Chop chop of parts, scars and marred

Skin once free of blade

A scratch board of operation knives

She reached me

As I sat in my safe world

Pulled me through

I smelt anticeptic

Read her clever whirring mind

Far too smart for this dull world

How can such people die?

She laughs and says

At least I’ll go young and whilst I have my looks

So long as you don’t show the undertaker my scars

They remind me of barbed wire and grey hair and the lines you cut in snow

When skiing downhill

Her lips are red, she says

I used to ride horses and can speak five languages

I say

I wish you would stay

I could read you eternally

It’s the macabre and giggling nervousness you feel

Around dying

It brings out the worst or the best of us

I wanted to bolt

Race down the road

But I remain and listen

To the gurgle of her catheter

And saw the bruised clouds grow

As rain came like tears behind pitched fingers

Her humor never left

She knew more than all of us

What a terrible, terrible waste

She said; I can make an authentic French 75

I wanted to swap places, I am not so rarefied

But I am a coward

Before the machinations of surgeons

What devour they do, to our poor skin

Does it really prevent anything?

She asked, laughing at the cat

Who is also old and infirm before his time

Still batting the window when birds come to peck

At crumbs of comfort because it’s those little things

She says, keep you going

Like my favorite soup, a funny film, the sun coming over horizon

Reminding me I can still

Breathe

I learn to appreciate life

From her dying

The morsel of me

Though of language I only know two and

Cannot spell in either

It seems

Life is savage in her cull

The bright and wonderful snatched

Who among us had an idea of

How to die?

Then she laughs

Her teeth still white, her skin waxy and hot

And says, oh dear you!

Who among us

Knew truly

How

To live?

Survival

The man wasn’t yet forty

Had cancer four times

Told her; This time I can’t survive it

She asked; Why are you still at work?

Don’t you want to leave it behind?

Take a trip? See the redwoods?

But before he answered, she knew

The photos on his phlebotomists table

Of three little faces, told her why

And it made her angry that they both lived in a country where

Dying people had to work for their children

To receive healthcare

And she was more angry

With her own lack of appreciation

For a healthy life that she possessed

Without children

Or any reason to try so hard

And he was brave because he had no choice

And she was weak

Because she did

Expansion

Gaining weight used to feel

dangerous

body parts blowing up, smothering familiarity

she wanted to be in control of everything and nothing could be controlled

so she took what she could instead …

her own flimsy pounds of flesh

the shrinking and expanding of time

denial and suppression, weezing like old men

enraptured by ballet dancer who starves herself to death

if she ignored her bodies longing to transform, she stayed small

and boys could circle her waist and say; you haven’t changed a bit! She could believe the lie and retrace time

could still be a slip of a girl, wearing her old clothes from when she was free of the demands of adulthood and blood, blood that did not rinse clear even when scrubbed

and this she did, for far too long, for fear of else

for what more was she? Not a mother, not since hurtling down the stairs, pushed by love, she saw her baby break into knots of placenta and gore

now not sure of whom she had become, in absenting herself it was easier, to dwell in the old shell and not

expand

comfort in knowing one’s exact circumfrance

and how it would feel to place a hand upon her flesh

a control without anything behind it, empty strawman, left without match to kindle, burn and diminish

she stayed the same whilst the rest of the world changed

grew wider, grew taller, grew inside and out

she was a fascimile of her damp past

it wasn’t until a sickening reduced her to almost empty

where she rattled and she clacked and she was hollow cheeked and pigeon chested

then her heart flickered on and off and she knew

the danger of staying still, was too great

she ate, though the taste was gone and appetite nil

outgrowing her own well known shape, she became something new

it was a frightening feeling to find what she would be

now that she had turned the corner and let the adult in

would she be like her mother with tiny little legs and arms?

or more of her father’s broad shoulders and freckled stomach

she was nobodies lover and nobodies mother

it hurt to cut herself out of the place she’d been so long, though long stale

and try to break out on her own, one unfamiliar piece at a time

in the bath she would gaze at her new body

bearing the marks of where she had visited

the underworld and the center of the sun

burning and drowning simultaneously

Her chest resembled the teets of a tiger, her thighs wide and strong

Readied to climb mountains, burst dams, forge expectancy

nothing else seemed important least of all

if she fitted into or fitted out of

the places she used to belong

this was a new version

she was going to gain more

than mere pounds and stone

she was going to quit starving to remain familiar

and learn the value of expansion

Anguish

cc477

anguish

is a selfish emotion

and a raw cry

made from the belly of the beast and all those terrors unseen

something honest and hardly admitted

kept behind fan and sleight of hand

it is something you hide for fear of being told;

do you only think of yourself? Are you aware others have it worse?

why can’t you just GET A GRIP!

You know all this just as you know

you can’t take one more minute

one second longer

staring at now familiar nightmare

feeling it turning you inside out and back again

(as if jaws were attached to your innards, pulling like a lover would)

anguish is an exhaustion

hunchbacked and ready to tear its own eyes

where if you could you would

run away from yourself never to return

where if you could you would

S.T.O.P.

where if you could you would

scream and never quit

until either your heart refused to beat or

something changed permanently

O the salve of darkness, shrouding such horror

how you have begged for change, change, change

please make it BE ANYTHING BUT THIS

and much as you did, nothing ever would

ease up and chill out, letting the prisoners out in the sunny yard

NOT THIS TIME or so if felt when again and again

you returned to

anguish

who is not definitely no

friend

but the enemy you know better than you ever wished

dangling by garter

over an old dunking pond

the shape of witches still burned

screaming in treeline

Another day more

Had you asked me

To embrace the idea of dying, before allotted time

I’d have said, no savage emotion, ever led me that far

It was as if

I skated every so often, on thin ice of sadness

Without being absorbed, to its fathomless hollow

In that singular experience, I was far luckier

Than those who see only darkness

I had claimed my own piece of light

From a family legacy hell bent on repeating, the same shrouded walk.

From the start I altered trajectory, a mix of stubbornness and fear

For some will be proud of where they came, their strong willed ancestral history

And others … wish it wasn’t so … spend their lives trying to be anything else

I tried so hard, skin chaffed from my fingers, plucking my own way.

So you can imagine the depth of grief, felt reaching that same temporal state

Of wishing to ease the stir of life, by death’s permanent wick.

Often it is not the same course

Brings you to a well travelled place

But the last thing you’d expect

A sudden illness, like a thimble that lets in needle

As sharply she infiltrates your well being

Until hollow cheeked you are wretched, begging for end

On that day it so happened

The sky was the kind of blue dreams are made of

Emptied leaves reached up to embrace the rays

Newly returned birds called full throated to the world

And sitting with a desire to die, and place pain forever gone

I felt the sun on my face, heard the russle of last year’s leaves

My fatigue whispered, do it now!

And I did not listen

Because I truly wanted

To stay sitting in the sun

Another day more

Nightshade

Oh mama

There are days

I am bent double

The stuffing of me kicked quite free

One side is fear that feels like unyielding felt, thick in my dry, slack mouth

Making me the puppet I never was, when good and whole

So is sickness for the soul

A sour well with brackish water and no yield

I long to be your child and retrace in time to your arms

Fantasies that never were, become, our lullaby

A palpable longing for comfort

Nourishment

To be saved against invisible foe

No

I did not invite you, fever dream

No

I did not beckon you visit me and stay, pinning my anxiety as colinder

Cast as we are, sluggish on fortunes wheel

Like chance, we ebb and flow

Moths without hardy wings

I desired wellness 

and while the summer river ran 

I believed it would never turn

Against me in undertow

Disease is a glutted wretch

A terrible betrayal

A war

You stand in rags fighting until your last

We all do 

But when the bees come and honey is glitter in the trees 

We forget our fear of unseen things

Believe ourselves immortal or at least

The sleek otter who can hold his breath

Longer than sense and her confine

For such a time I rested

Against this calm

Taking for granted what I did not own

And as winter will

Reveal herself bare and merciless

Soon those hours of peace lay behind me

Damp with regret and burned yet

To leave plumes of green smoke

Evoking Gods 

Who may be senseless to our call

For the comfort of our childhood

Curled inside a place

As yet unborn

Do not

Let me stay in this cold fear

Or stand alone 

With its frozen clasp about my heart

Squeezing hope til nothing pumps

But the ice of terror 

I am 

Just born

To this strange chill

The waking before dawn of prescient worry

Will I be well? Will I ever be without pain?

Oh mercy and her ink, clouding fortelling

The whine of our need to know, what Fates only jest

My gut is silent and 

Nothing but the fast snare of my pulse

Can be heard over lamment

I am

A statue of fear

Thinking back

To the Happy Prince

He felt pain

Of others

Taking the jewels that were his eyes

Sacrifice I do not have

A lesson

To think and care as we suffer

Of others and their

Equal walk 

In nightshade

Breathing

It’s just a story we tell ourselves

We will be well

And even Gods forged of longing, cannot always save our plea for preservation

And please, some peace

For the weary, are not the old

They are the ones who know the sear of unwanted pain

An ache rising like wave again, merciless in return

The loss of dreams comes softly as snow

We dream ourselves complete

Waking unable to breathe

This sheltering land sometimes permits tornadoes

When all around shakes, we are battered and bruised

And because we still stand, others never witness, the deep sink of our soul

Or indeed, that dark place we go

When night only burdens with unseen fear

A temperature, a loss of balance, this unknowing doctors touch, with gloved hand

As we find ourselves, subject to midnight

We, who have never been this person

Arising, as if we could separate and escape, inevitable places

Was it really me? Who gasped for breath and cried out to spirits never tested?

As has always been for each life line

Thinking invulnerable, tugged back to truth

All of us wear a harness, all of us hold an allotment

It is the wicked mirth of terror when first we gaze into our future and see the end

No amount of protest will stave

But maybe, maybe with light and courage

With nothing more than salved persistence

We can hold back that day and spend one more

Breathing

Inherit their voice

2012610_1809dSat facing away from the sun

an old man wipes years from his eyes

drawn over with cataract like milky bath water

he strains to see the outline of motion

 

where are all the old men? He thinks

once so barrel chested and neatly trimmed

with mustaches and shiny hair like Cover Girl teens

where are all the eighties queers who painted beaches

with tight abs and tiny shorts in tropical shades?

 

now half empty, the beach longs for color

only rotund women with bristly chins

unkempt hair chopped without thought

some with children or children’s children

placing sensible shades and thick UV factor 50

on slow-moving parts of themselves

 

in previous years you could

reach out and paint a rainbow

in their courage of being twenty

though lesbians and gay men do not

always a palate make

such contrasts in their expression

these women without restraint

mopping the brows of dying beautiful boys

unwilling nurses drawn to duty

by suffering ignored

 

some judged, as is human’s wont

even those judged themselves

learning in pious pews the curses afflicted upon

the sinner

their ingrained prejudices wondered;

Why so many striken did not stop frequenting steam rooms

smelling of bleach and pleasure and illness

looking for strangers with no way to tell

if death stood beside them?

 

perhaps; time old division of the sexes

rather than, one bad, one good

men will find a hole, stick it in without regard

this is not a homosexual thing but

the nature of a penis

gay men acted upon that unrestrained impulse

all men share, save those who learn greater depth

than the hand, the orifice, the gag reflex

then disease clasped them in a death grip

chewing away at fragile worn tendencies

soon no beautiful boys remained

hot in steam rooms to blink their doe eyes

fringed with fear

 

some divisions are economic

lesbians with babies, lesbians without brawn

unable to act upon their natural instinct

remained married, starched at home, dying in place

whilst young men, fed on corn and barley, took good

California jobs and soon the boom grew teats

 

educated baby dykes today do not know loss of freedom

or the true price of salt

they can rack up bed notches in reckless abandon

imitation not always the greatest flattery

but back then …

all so new and unsanctioned

people didn’t have road maps or internet

to gauge behavior by

and in the dirty rim of a third glass of whiskey

courage and terror would sometimes blind

best intention

 

girls today repeat the worst inventions

of boys without purpose

those early days of the movement

can a life be a movement?

they died weekly and by the hour

in shabby rooms without succor or sense

strangled by disease, shamed by the ‘told you so’s’

just coming out

only to climb into a coffin and be carried

jeers and spit and hate to their graves

where few wept, for they too shared death

mottled with kaposi’s sarcoma

some haters slinging mud shouted;

you depraved souls! You reap what you sow!

is this the word of Mohamed & Jesus?

or cruelty with nothing more than hate to grow?

 

now gays think they are safe

over the hump, socially acceptable

on TV, in your face, sitting next to you, earning more

painting their rooms mauve, their wallets thick

HIV can be lived past, no more automatic death sentence

adoption is legal, and marriage, a thriving business

do they even remember how many fell?

before they could inherit this tenuous hour?

 

the old man was one of fifty

the last survivor of his generation

depleted by silent war

struck down by AIDS and her harpies

over time even medication failing hope

or bodies, tired from their walk

collapsing on scalding streets without

the kindness of stranger

 

the old man, he cannot say to today’s youth

this is how it was, learn from the past

because they do not care, it is their time now

and if they knew it would not matter

only the hour of their immediacy

compelling them forward to their own history

one day past them and in reverse

they may share his loneliness then

too late

 

the old man

who used to be a beautiful boy

with golden skin and hazel eyes

a thick swath of black hair hanging like a wave

he looks at his gnarled hands and sagging arms

with their scars and their ragged hurt

and he wants to be as loud as the young

and shout out;

 

where have they gone?

the beautiful boys of my time?

why must I outlive them all and see in my decline

the loss of their right, to be recalled!

for whom among us, shall pick up the mantle

and say their names, once we are all

beneath earth?

an entire generation cut down

and smoothed over like asphalt

 

do we ever think of that?

in our perpetual urge to be present, in the moment?

those who have gone before

stand now like ghosts around him

an entire era

strangled before they ever could

inherit their voice

 

(This is my contribution to Pride Month. I want to remember those who are not here with us, because they died when they could have lived, if they had not been forgotten and repulsed. During and afterward, Africa was equally rejected, neglected, ignored, and millions died. Worldwide HIV/AIDS is still a death-sentence, make no mistake. Those with power decide who lives and dies, whose life has worth, whose does not, decisions are not made out of mercy they are made coldly with calculation and lack of compassion. All the rest is froth on a daydream. Our memories are sometimes the only thing keeping us from repeating history). #neverforget