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.
Advertisements

The outsider

38638686_1843766582406138_8072796370370560000_nshe wasn’t like them, so they didn’t like her

to her face they smiled and said ‘nice things’

which she knew were lies

behind her back they laughed

and made dirty-lezzie jokes

because it made them uncomfortable

to think about what they thought she did

it made them feel a bit disgusted

like when you stand too close

she looked like them in superficial ways

wore at times, nicer dresses and had longer hair

the fact that she liked girls wasn’t in their

comfort zone

when it was summer time they had

BBQ’s and invited all the neighborhood kids

wondering if she would be safe around minors or

would do something inappropriate

when they started a mommy running club

she wasn’t invited because she was neither

a mommy or someone they wanted to

bare their secrets with

what would she understand of husbands?

maybe their husbands liked her

because she was unavailable

when it was Halloween they made candy and

knocked on all the doors but hers

because the other mothers said best to avoid

what they did not care to know

that’s why she lived a harder life than she had to

for there is almost nothing worse than pretend friendliness

leaving you more alone than if they said what they thought

and spat in your face

if you think that’s an exaggeration or she feels

sorry for herself

think on the tiny percent of the world

where being gay is safe or legal

and the huge part of the world where it is forbidden or punished

think on how many lament at

the shift in culture toward acceptance

calling it a ruination of our society with all

those damn fags

compare it to those who truly feel inclusive

how every day isn’t the same

when you have to contend with not fitting in

making everyone else feel uncomfortable

just by existing

nor can you talk about what matters to you

just in-case visual images abound and people

begin to change the subject

if it were a choice … a lifestyle … few would make it

yet she exists

wishing sometimes the phone would ring

another girl like her would say

I know how you feel

would you like to go for a walk?

she is a gay princess in a tower

and her princess

is somewhere in the world perhaps

thinking the same thoughts

two outsiders

unable to find each other

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?

Splinter

8.Boubat.-Portugal_-1956There is a thin slice of glass in my foot

I cannot see it

but I know it’s there

at night when

the fan whirls like a dervish overhead

and I play the xylophone between my legs

a storm blows in

like a warning and a representation

of everything felt and bottled up

old trees hold on, their roots tested

by the metal of young wind hurling

all order into chaos

we stand in our night-clothes

looking over fences

at destruction

she has a white line the length of her stomach

he has a scar hidden in his throat

mine is without and within like

a snake who cannot decide

which part to digest first

we three are the wounded lovers

with our perpetual thirst for

promises to ring true

devotion to stay where it was first placed

by the window in a jar of water

to bloom and scent the pulse of night

but such things rarely obey

wont of humans without power

the storm and her threading fingers

lays waste to our belief we control

even the tiniest morsel of this crochet world

…(l)…

when he married her

he thought she would obey

the tick tock of her laboring heart

stay steadfast by his side in the howling wind

but she was a maelstrom of her own

making

soon the wedge in their marital bed

was a dry river without resurrection

…(ll)…

she wanted

her husband to save her

when the doctor said C.A.N.C.E.R. and she turned

to the eyes of her children and they

looked away in painted terror

but he only knew how to put out fires

not the slow melt of all safe things she had

taken for granted 33 years

so they diverged

like a split oak touched by

lightning will remain

upright yet stranger to its mate

…(lll)…

and she was the string

between the wounded male and female

her own heart hollowed out

murmuring at night like a singleton

by the small hands of trust and promises

unkept

it was as her grandmother said

a poor thing to imagine humans

to remain steadfast

after all, the storm blew everything

even our very best intentions

whipping them into the air

until they were fragments of themselves

transformed what we knew

what we were familiar with

lending no safe harbor

for the weakened need to have surety

the only thing keeping them

upright

was their conjoined pain

a frayed ribbon between three houses

in the wildfire dead of night

where even

creatures who prefer darkness

stayed in their nests

for it was only then, in the tempest

they felt themselves capable

of surviving another moment

only then

shouting their grief into four pursing winds

writing pain along the narrow margins

of life and death

they lived another day

and on that day

wrecked and emptied

found succor in the equal fall of others

bending to pick up the debris of

their former selves

rent into splintered pieces

unrecognizable and sharp to the touch

Ring

Your friendship is

A ring on both our fingers

We can bury it for years

It won’t tarnish

You crossed over to my world

And climbing through my window

You left muddy footprints spoiling the plain carpet forever

When I go to look for you

I hear your rustling words like music

Taste feelings like rain on my tongue

You made a fetish of me and wear it around your neck

I keep your calipso dance beneath my iron bed

For when I am alone

You are there

Velvet pocketed and never faltering

My love is

A brand I welcome

As we cannot exchange skins

We can remove our fear

Let it hang neglected on a clothes peg

Whilst we kick off our shoes

Feel the vibration of knowing

In each other is the river

Reflecting on shining surface

Deeply felt things, resting below.

Balm

Just when you constructed your best notion of life yet

little occurences surprise, like rain on your neck

she is a woman of verdant verbena vitality

she lives in the tropics with the song of Finland

angels arrive, winging oceans

her voice wrapped in this time and others

lends a balm, sincere and lasting

like a fairy touching glass

turns dream to day

(For Raili. đź’“ ILU.)

Rune

They ran through markets

elms strung with sari’s

bedecked with jewels and

girls kenning their heads

babes at their breast

growing crowns of red and indigo

she pressed into my palm

the spell of her rune

smelling of Finnish water stone

rubbed over and over beneath time

leaves still containing their flung pigment

where slippered feet ran and picked them

casting their glass throng to glory

she has the shiny hair of a child and

cheeks full for her pressed size

she who is gone and now returned

talking in other languages with Irish accent

she who manifests and disappears and is reborn

doesn’t look large enough to give birth

or sing at the top of a road the song of her

we were

separated by water and fear and longing

broken in sea, put back together by current

I was always swimming in her direction and the

light tread of her spring

she is a carnival of paper-cut outs

wearing scarlet hose and rings on her toes

yet upward / yet down in earth where

roots inform her choices as well as ancestor

she is of me and I

am stranger and intimate

familiarity is a rubbed sleeve on silver

her thin knees beneath duvet

twitching dreams caught in muslin

tents in high wind holding their claim

sheared gravity, she is lifted from her sail

and through the tarot of her eyes

I see each snapshot and Rorschach blot

when they told us friendship will expire

they did not know

the language of ink and how

it leaves itself

swirling for paper

on which to draw

us