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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Of Being


In the lowing keep

When shelter becomes more than solidity

Something bright in darkness

Warmth when cold

In the clasp of your arms

Timbered voice, felling fear

All around us animals stir, unseen 

The switch of their fur, and meadow smell

As if time had laced herself backwards

We drift beneath spells

Your mercy is a red fruit at my throat

Throbbing against the thin trickle of hope

My eyes are dim in this evening

Where shadows appear to turn light footed 

Swaying in our attachment to the finite

When all around, creatures cease without word

And new are born to cover the empiness before she knew herself lost

We have no prescribed place, or capture

It is as if nothing has roots and like the tumbleweed

Rolling beneath the smoky clouds with hushed song

Lets go of all that can harm, the vast solemnity 

Of being

Something we used to be

When snowflakes melt

They melt from the outside, in

When people dissolve

They dissolve from the inside, out

You may not even know

That person standing next to you on the bus

Has nothing inside but icing

We are, after all, consummate sleepwalkers

And act, as if we wrap up everything, it will thaw

Even as the emptying of layers reveals it was 

Only shadow muffled

Something we used to be 

Before it became too hard

And the deception

Feels like a fickle lover, you can’t quit

A lung full of poisoning

A bed without dreamers

Only then the clock reveals

All its missing time

You spent putting bows on hollow boxes, with empty routines and unpolished shoes

When you could have been

Watching snow fall

Like a blanketed mirror of another world

Where you didn’t cut your finger on fears edge

And slip unconscious into hedging your bets

Where you found your long lost mittens and hat

Red against virgin snow, sledding almost vertical

We choose our closed doors with care

Would that we gave such attention to those standing slightly open

Offering a way to cut through resisting ice

Restoring wonderment 

Crescendo

Is it an astigmatism or

The blur of a questioning heart

When things are disordered, the very edge 

Clutching bitten sides as hollow city dwellers

Imagine faces looking downward into fast moving water, seeing drowned doves

A predilection for extremes

Where daughters cut their ropy hair

And open like heart chakras beneath festive lighting in department stores

Accents donating starry landscape above

Informing choices as snowbound relatives learning to talk over cold soup

Girls in A-line skirts, boys hiding erections behind glossy schoolbooks

And the heat of asfalt, curling like collars made of beaver

High gloves, no verbs, learning how to dye mouths like hair

Standing on unstable chairs, wobbling with frail grace

Where is moral nerve? Where negotiation? 

Responsibility for one’s life, defines self respect into a set of bronze rings hung from pinched hips

Whatsoever the plan, pinned to walls to hide the cracks

Tension strung like artificial silk, Protection sitting among lotus words

Flattering our need only leaves a sick emptiness

As when your mother left and the heavy latch 

Never fell back

Locking you in

Toys and books and closed looks

Guests who leave their fingers uncurled, will be claimed

As shadows whisk the corners of sobriety, in sating stain

When all is said and done, back to earth we come

Folding our weary necks against soft shove

If you take anything, take the memory of

That first summer before the shimmer rubbed off 

And everyone was golden beneath August, like hot dancers 

Turning their pliant necks to the orchestra’s

Swelling crescendo

You got out

(Part of a new series of poems about people whom I have met, who profoundly moved me).

They said

no it’s not a person, it’s a trash bag, or wad of clothing

as I turned the car around

knowing it was a girl, curled into herself

it was for her, the end of a long night

for me, an early morning drive

into rising sun

indigo girl

her limbs thin enough, to resemble twigs

hair colored black, face still-water of a child

she waved us off

no, no, no, I’m fine here

in the fetal position, on the cement

lying by the side of road exhaust

as predator number 10, idles his car and asks

do you want me to take you home

baby?

I press myself to the window glass

no, don’t get in the car!

he looks angry when she says

I’m just taking a nap, goodnight

his lust drives off, leaving fuel staining like road kill

I wonder

what he would have done if

all 90 pounds of her, in tiny shorts and torn top

had accepted his bearly, concealed hunger

how many predators comb

early morning side walks, hoping

to pick up lost girls?

she’s got sense and she also, doesn’t know

but I do

I was her once

crawling out of an abandoned warehouse

knife wounds, waltzing on my throat

cold semen in my belly

clawmarks designating, my survival

bearly

the car that stopped then

a light in darkness

they took me away, from near death

when so easily

I could have been picked up, a second time

a third,

by hands with bad intention

when you are fallen

people often crowd in, to help you

fall again

like wolves who smell

the coming of blood and

vulnerabilities, we think we hide

I told her

don’t get into a car with a lone man, or group of men

they may not show their fangs but

you are a little piece of goodness

sometimes people who prowl, want to hurt

that shining within you

we drove

she was looking out the window

with her unslept eyes and the residue of last night

still high on her pain

and for the first time in my life

I no longer felt a victim

but one of the imaginary horses, I used to ride

speeding away from slick, sales-man, cough

of curb-side prowler

I wanted to make her better

but sometimes you can only

patch and release

to maybe nothing safer than hope

with a few words

wishing, that when she’s sober

waking without assault

she remembers

you were her once

and you got out

 

Being twenty

15541394_10202354632784646_1452891421884110148_nThinking back

being twenty wasn’t as shiny

as bronze coin swallowed by carp

when

I went to eat Chinese and made a wish

to be young again

 

at twenty

I thought my breasts already hung forlorn

much like the oak grandfather clock

my father lifted from a former nunnery

when the nuns were gone and buried with the rhododendrons

the building disarticulated stood empty

beseeching intruders

awaiting renovation into flats for rich city dwellers

whose coins were gold

my father said

it seems a shame to let these apple and plum trees

be torn up and shredded they are mature and have

earned a right

so by night we dug up their rosewood roots

hefting in my grandfather’s wheel barrow down cobbled street

planted them in the little weedy garden out back

where they endured without their crowns

 

much as I endured being twenty

thinking myself imperfect

because of the pressure

burning like a hot wire in my

fizzing young head

like tight roller skates leave indents

my father said the trees never

bore fruit after moving

because once you’re planted

you grow roots only once

 

maybe that’s like being young

you are a tumbleweed and whilst some

take to being a spirit composed of air

there is something reassuring

like a warm fire or

a steaming bath

when you know it doesn’t really matter

all the fanciful dreams you had intended to wear

the way you sucked your stomach in

when he touched you underneath your dress

that tugged uncomfortably at tight seams

because you wanted to be

as gamine as

Audrey Hepburn

Being

women-looking-out-window-pic-courtesy-of-google.jpgwhen pain

is your only weapon and you put it down and say

turn the sharp on me

does it mean you are filled with hatred?

or the ecstasy of being?