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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Colorblind

wp-1536878025448..jpg

pallor

perturbed an aesthetic

inherited

 

your skin

contains

sunlight

 

i might

see if i can still back-flip

though

last time

i broke

my harpsichord

 

you remember the song

surely?

a much used

cassette

your poetry

sandwiched between?

i  couldn’t close the lid

it was too fat

 

what if

we were

born without

skin

would everything

feel that much more?

 

perhaps what you see

isn’t thin

or pale

but what it looks like

when it has

peeled

 

exposing

too

much

and

not

enough

Needle

Learned early

How to let go

Always saying goodbye

Short twitches of time

I learned

Through closing french windows

Palid light playing in empty spaces

Where dust looks like a jewel and distance

Can be swept up with the debris clamoring to get there

Doing nothing honors nothing

So we packed our memories in minced words

The river poorly stretching like colourless yawn

You inhabited the past before a future existed

Leaving, the ambelical chord severed in a neat recoil

And I learned, as in your turn you learned and in your mother’s turn she knew

Not to expect the people who should love you, to stay

I am a string of colored glass about memories neck

And as the rocket becomes totem in rain swollen skies

I wish myself an astronaut

To propel from tierra and leave behind legacies

Of loss

On a hot night, my hand sweats the melting ice tonguing glass

And in our imagination
we are needed

Vouched for by a tight stitched safety net spread over jagged edges

I was told I said thank you and sorry too much

So I quit saying both

Though it was only a habit bourne from

Being from people who never apologized.

Letting go is the most familiar feeling I possess

I turn to it like a lined book and scribble my fears in its grimy recesses

And the hairbrush and night light you left behind

Burns out and stays as cold as walking around the house without socks

Clings and repels

Calling in sick

Staying absent there is more oxygen

Catch me if you can says the long distance runner

We who stop and start our watches, so many times

Much used joints ache prematurely

And the thrum of rain is a constant

Thread through memory books

Poised as young dancers

Will crane to catch

Every elongation of unfolding sound

It was what bonded us

Immediate, like transferred ink

Can’t be licked off

The intimate knowing of good-byes and loss

Its reverberation in unused spare rooms

Pacing emptiness and her poor assuage

Until it was our turn

To raise the knife and bring our uncertainty

Puncture through fine quill of transparency

Hurt has that synonym

A song playing on repeat

Forever tasked to jumping her needle

Two cars going in separate directions

What is contained in motion? In separation? In the fluid trajectory of two cars

driving in different directions

when once they drove together in one, singular and twice

with music playing like a warm stove in Winter

watchful eyes glinting at the movement of her soapy shoulders

inhaling a song they both liked

was it really so long ago? time can be a fickle fellow

you believe things have not changed before

the car wreck distorting metal into specters, and then mangled see

all the signs and wonders leading to your loss

glaring and obvious as they were not before

I would say four years, six, maybe more

since like powdered sugar you shook her

out of your system and changed the channel

you think she couldn’t pick up on the dull flat key of your promises

or the way you did not meet her pleading eye

and had someone else nearby

parked with engine still running

waiting her eventual hot buttered turn

you were bound to return to the past

as your memory dissolved through gauze

that is all that remained sharp

like a knife on my chest will cut

only so deep and then retreive

sticky piecemeal

baking it into cakes and giving alms

when we are neither penitent nor dead

but live on

in seperation

as time comes and goes like a trance

one moment I am holding a glass

of your words

believing myself loved

the next the house is being emptied

sold for next family to inhabit, my footsteps

there was a time I held onto

boxes of memories like a kite

I saw if you let go of the string

they rose higher and higher out of sight

more beautiful for freedom

now I can pack the entirity of me

in one small bag and still have room for heartache

this is the season of change

the radio host warns us of impending rain

another storm like last year and the one before

we threw sharp glances at each other until there was no more

blood left inside to keep warm

I feel no regret, only the beckon of movement

on to the future and maybe

I will not need a car where I am heading

watching the horizon bleed

its first bidding autumn evening

and I remember laying with you watching tv

in the dark, the feel of your fingers on my neck

remember reading Bridges of Madison County, thinking

surely people do not live like that

and the car

waiting at the stoplights

long after they could have driven on

blinking in humid downpour

blinking for her to get out and run toward

something already buried and underground

I hear the gear shift

watch in rear mirror

the outline of you

grow gradually thinner

against orange light

and the sound of someone

crying out

https://youtu.be/voZI8NXEO6M

Afterlife

when it’s time

kneeling, bowed head

nothing uttered

all felt

describing life and its

merry dance of thieves and joys

pockets picked, cheeks pinched

the rosy after-glow of loss and gain

shaken out blankets beneath trees

mystery of indentations past and present

who lay watching nests built

careful and with slow deliberation

before I lived how could I

describe the outline of love

moving in rapid sync as

tired swimmer in from cold

just as you give up on believing

raking autumn leaves, someone smiles

and breaking across their holy face

a connection of electric worth

for the lonely are not lost

they wander in search of hope

throwing sticks for panting dogs

breaking through water, flying in indigo bloom

a new season turns her heal toward sun

this afterlife will feel a familiar place

of lost faces, angels made of earthly composite

reflecting in the eyes of smiling ancestors

we will feel tears on our cheeks

burnished leaves falling in their spiral

where all things are forever and

the call of owls brings night fall


like a smooth glaze of assurance

tapping windows with sleet

closing up house, warm and merry

we step into the beckoning echo

Summertime

Depression era pink

glasses breaking

into cubes of falling ice

marbles hitting concrete where hard

should never be

we are soft crinoline and chiffon

we are baby powdered and tight wigs on

to march and strut the catwalk of the world

masks and smiles glued straight

for nothing is as it appears

my love

our bottles of time have used up

their sand

the touch of summer burns my hand

beaches and cocktails and empty bar stools

I saw myself there once

I was looking for you

driving in circles

speeding through rain with the top down

we cut our hair, we changed the locks, we left

the light on

listening for the sound of aching

as it crested the hill

driving too fast at night

slick wheels, slow eye movement

the lament of everything on mute

beauty doesn’t exist in the world

when your heart is carved hollow and

that pit returns to grow its peach tree

I roll another one

inhale

it is the smell of summer on your clothes

fading fading fading

cuts my resolve to ribbons

shredding words without sound

remembering as we were

running after each other all night

I found you then

you said

take me home

and I did

wrapping my thin wrists

through your emptiness

until we two were chinks of light

glimmering in wide empty sky

Inspired by ‘Summertime Sadness’ by Lana Del Ray

Tribe – Candice Louisa Daquin

Latest piece on Whisper & the Roar

Whisper and the Roar

Hold still

it won’t hurt

and if it does

then it’s your fault anyway

you’re lucky to be getting anything

if it were up to me, I would leave you where they found you

hunched in a mess of splayed arms and legs, barely moving

you must have asked for it somehow

they all do

Hold still

it will hurt

because for ages women have sought

to repair their broken parts, find a way to piece together

those patches of their souls

only to be berated and shamed

hobbled, judged, vilified

burnt a second time with stronger brand

what is it within humanity, wants to further damage?

the survivor

hold on

it shouldn’t hurt

we are creatures of the fall, we are not fallen, we are good

women ride alongside men in equal canter

when one of us is hurt, it hurts us all

love heals the torn…

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