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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Birth

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It is said

by mouths that do not move

it is gauche to write about oneself

(over-much)

and she didn’t always, for the world had so many things to describe

until the sink hole swallowed her breath, tar covered and added feathers

her crimson brand ran like a howl down a deserted one-eyed street

if she were a fish she’d have no scales, and nothing to measure what she lost

nor a compass to find through hooded treeline, her way back to who she’d been before

this is the way of transformation

forced from our stage we are bound and gagged

the way forward obscured like rubbing grease on glass

it hurt to be cut by ice, it stung to know no intuitive language

hands tore at her sides whilst she slept on a brick within a house, held down by gravity

they told her; you will not recover it is time, to put aside hope

along with your beautiful dresses, your long dreams and afternoon sun

she wasn’t ready to lie, like a pin against other cold metal

to be counted and cooked to the marrow, ready for sucking

for she was warm, she was alive, she hadn’t climbed all her life, just to see a cloudy day

it wasn’t her way to admit defeat

as migrating birds returned and sat like tired audience to her calls for help

she knew, a fight is never asked for, it beckons you when you stand on cliffs edge

trying to count the ways you might die

such a sorrow in planning your own end, long before you intended

she still had so much still to do

hair to plait, skirts to hitch, and ride, ride out into the wilderness

where raw bones are the purest listener

they will hear you when you throw yourself down on wet moss and

burying your fevered head in earth, call upon angels

for protection was something she hadn’t thought of

since she was a little kid walking to school alone

and then she had an imaginary horse, and all the years to come

now, the clocks turn back, time rushes forward like an impulsive guest

who has drunk her fill

ransacking light she streaks out into the forest and you cannot follow

because she is quickly absorbed into gesturing evening dusk

perhaps never there at all

that’s how she feels now, half alive, half hanging on

at the witching hour, it is all she can do not to throw herself into the glittering lights of oncoming traffic

for she is not as strong as those who endure like a costume, their own brand of hell

she has only herself and it isn’t enough

so the words come

and they stay loose and unsure upon the page

as if they know her fragility and their own insubstantial compose

if she can stay long enough, maybe she’ll see something new

maintaining equal hope with encroaching dawn

that is when everything from the day before, gathers

turns to dust and we begin over, perhaps better

with every urging push, splitting apart, garnering strength from invisible force

as fierce and distant as a Northern wind

we who know, how to birth life and produce hope

from the fragility of almost nothing

 

(Inspired by RandomwordsbyRuth who said; “Survival is the highest form of compliment we can give ourselves.’)

It is in horror, we see truth

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Before

is a color I cannot describe

a place I don’t fit into anymore.

 

Even if I am restored

things will be changed for good

for most of us there are times

that shape our marrow

could be in the form of torment

maybe sorrow, sometimes joy

often the hardest times leave deepest imprint

perhaps it shouldn’t be that way

we should rejoice our luck a little, usually too busy enjoying ourselves

to leave permanent mark or maybe, challenge speaks louder than mirth

it is easy to accept a good day like a hot bath

than deal with a bad and hollow foe

that’s when our quick is sharpened,the story of our lives written

on the tip-toe of endurance

and what if we do not want to endure?

too bad, shit happens, legs break, minds crack

we’re going to end up there at some point

better waterproof our leaking sides best we can

the ocean isn’t a forgiving mistress.

 

When I fell, my mouth filled with salt

even then I didn’t know how far torment, reached down

it was a well, beneath the sea

a second drowning

for those who long to be free above ground

shackles of the merciless kind

only then I wondered at the strength of others

enduring from such an early age whilst I

ran long in the garden, unawares, chasing butterflies without a care

thinking I knew real pain from a momentary hurt

I knew so little

just a moment ago and a life time apart.

 

I am a twin of my previous self

we stand on different sides of the same coin

I am submerged, she is still, basking in the glow of a harvest moon

sometimes I look over at her and feel such envy

anger for my lack of appreciation when I, was her

but you cannot lead a horse to water

you cannot teach a child what she must learn

getting stung on the principle, she discovers through pain

it wasn’t in my thoughts that I should be

the girl on the other side of the echo, pleading to return

I don’t know if I will be permitted

but should I ever, walk again without curse

it won’t be as the same person, but a mixture of two

once you’ve seen yourself and begged for mercy

everything alters and everything stays the same

it’s up to you to be mindful of what you learned in that maze of pain

I learned what we think of as hardship

is often just everyday life

what we believe is suffering

can be comfort compared to other lives

when we don’t think we can change

then we aren’t given a chance, we know we should have

it is in diminishment we find elucidation

it is in horror we see truth.

 

Let me back inside my life again

and I will not be the girl who, took the easy road

for she now knows, just how deep anguish can go

it is in the tangle of the briar

and the wormwood of old trees

whispering advice never heeded

by the youth who believe themselves free.

 

Before

is a color I cannot describe

a place I don’t fit into anymore

 

 

Those fierce moments in between

The day will come

THE DAY WILL COME

when you fall and feel you cannot get up

and when that day comes and feels like it’s won

you will pull yourself

inch by inch, of broken spine

cry by cry, scream by scream

until you stand

TALL AGAIN

and when that day comes

you will think on this and know

belief is half the battle

faith the other part

there is no room for query or supposition

let not the terrors a place at the table

the pure hearted know

healing comes from the soul

I tell myself this

at 4am over the toilet bowl

exhausted before I have woken

I tell myself this

when panic grips my chest like a thunder bolt

and whispers in my ear, it’s been six months

I tell myself this

when the person I was, is not the person I have become

but a whisper of what was

BECAUSE

we have a choice in our fight

to take it, to face it, or to back down

and though I wanted to give up, though I tried to let go

I’m still carrying the smallest candle of hope

it is in the stains of your disaffection

the hideous recollection of your breakage

when you see through the ugliness that doesn’t quit

and pain needling you like it learned to knit

those fierce moments in between

they are yours

and the day will come

full and bright and brilliant

when you shall, reclaim yourself

Sound

The kitchen, the harth, the space, is unlit

Weak light, nothing stirring

She is as still, as a breathing creature, can be

Sound… is for the world, chasing beyond itself

Where girls like her, hold tight to bus rails, wind messing their hair

Where children cling to parents, shy in perpetual game

Where men stoop to kiss women, full cheeks upturned

Music and the chink of movement, gypsy motion

Color and the russle of long skirts, like painted fans

A sky as blue as country girls eyes

The haggle of time

A red river, carved by motion

She wore those days, like a red dress, loose limbed and free

Unknowing yet, bestial crush of illness

Jeering like envious stranger, swallowing thin air

She is as still as a breathing creature can be

Sound, is for the world, chasing beyond itself

Water


Do you believe?

In

Things greater than 

Yourself?

Do you believe?

In 

Miracles?

Do you believe?

It will end and you will 

Rise up

Out of your bed of pain and fear?

That it will be gone

Dissolved like thin snow or frost

A beautiful nightmare?

Vanquished are the ghosts

You will in time not

Recall the laminate corridors

Antiseptic sting and gag reflex

A night nurse plunging needle

The faces behind morphine dream

Your room mate gasping as if 

Being ravished by herself

A chink of light through heavy curtain

Of hope

A scarescrow angel, you kept the hounds at bay

And mark, in my heart, pressing jewels to forlorn crown

Each gummy bear, red, violet, purple

Like bruises and flowers lain slow

You visit me there, in the crook of my arm

Where anihalation takes her naked bow

You wipe my cheeks of salt, bestow your own token

Posies of disease, viruses for the clean

Small bird bones picked lean, glossy in bleach

They watch her take the boat too far from land and wink out

Like a smudge on the line between life and horizon

They would 

Ask her to turn herself around

Return to the ward, the pill bottle, the undergarment of her lurk

But she has already begun 

To dissolve

Like fine powder

Moving on the swell of clouds

All around birds make noise

And drown out 

The feeling that

She has nothing left to burn

But the thin blue line holding

Our faces out of water

Seeking wholeness


My core may seem

Tired

The flame dimly lit

My eyes may be glazed with

A heaviness that will not lift

And yet

I am also

A firebird

And yet

I am also a child of this Earth

You can

Force me to surrender

But I remain

A little defiant

I used to fight back

I forgot the art of war

In adherence to well trodden rules

I bent into something lost

But I am not

Broken

It is my nature to dissolve

When four rivers convene

It is in the terror I see

What must be done

For when we wish most to end

So we have

Begun

And it is time to take that journey

To light 

The far tower

That it be bright enough

To bring back

All that was 

Whole