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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debris of the unsaid

row-boat-painting-surrealism-woman-dreaming-row-boat-in-hair-beautiful-painting-art-row-boat-in-storm-paintingOnce

the storm

predicted and prepared for

still

blew away the thatch of your house

sent water pouring like words with lament

and whilst

i was sickening

i thought I heard you row

across the expanse of us

holding your roof as umbrella

your feet bare and needy

opened my cabinet of questions

gave you a draft of why?

to which you descended beneath brackish waters

places submerged in lost question

claiming to surface

a moment where you spun in orange pekoe light

sitting stroking Gato before he

tested his claws on a tree the buyers tore down years hence

i climbed that tree in my high heels

you took a photo aping for the camera

and one fixing your sink in mini skirt

that’s my girl you said

we bathed because then you had a bath and I had heated arms to wrap you whole

the ocean of the past drawing in and receding

with it, debris of unsaid and unchained

time behind and unrecoverable

Once

i told you I was sick and couldn’t swim

you held me above waves with your will

till you decided I weighed too heavy

on the stitch of your skin to keep

we both

and neither of us

strangers and familiar

deciding and without decision

lost that year to the storm

as it set its pulse on our sundial and drank all hope in its spiraling eye

(there are many forms of love, you chose certainty over depth)

and once

i took a raft made of need and dragged the silty water

searching for what was lost

of us

who we were and were not

for you told fate you never knew me after all

an error of thinking … no more

then the storm left and all we knew was flat and broken

even trees we climbed were crushed like sad-faced dolls

as if an avalanche had glossed over the details

leaving behind a shiny surface and no more beneath

but dull reflection

Virus

This chronic virus grasped me by the throat

Not lover, not rapture, the thunder of hooves seeking sinner

A Gorgon, Kraken, Swamp Thing of the blood rose

I cried; Is this retaliation for not caring enough? I do! I do!

But those who don’t act, are only words and armchairs, the hypocrisy of ourselves, fattening in our prayers

Epstein Barr knew this well, it is after all, an insidious invader enjoying its art

What did I do to deserve you as my bedfellow? I asked one night

Can’t you just leave me be? Return to the days before you feverishly claimed me your supplicate?

Swimming in my blood, high levels of scarlet poison, whispering; I could give you fibromyalgia, MS, cancer, chronic fatigue

But I chose to cause you to sicken every day, your stomach, your achilees heal, my throne

And as you write, think on me, for I infect you all, only some are immune

You, you are weak and afraid, with your desire to be a writer, which you’ll never truly be

Wanna know why?

You don’t have the personality or the guts

You don’t have the PEP

Imagination and pretty words aren’t enough

You need a marketing machine, a robust ego, stainless steel skin, no demons in your head

I don’t have any demons, I lied

Tucking the beasts behind my eyes

I may not get feverish over publicity tours or spend eight hours online, learning how to be adored

Because I’m trying, despite you, to live fully, without so much noise

I want to sit on my stoop and observe the flight of birds through water

That’s how I eventually write or embroider my tongue with song

By being quiet and inhaling the vibration of life

Like our favorites who didn’t always write daily

Sometimes, there’s more in less

In our world it’s too much 24/7

The population bomb broadcasting its static purr

I am a bad self publicist, I don’t submit enough or live for attentions

I’d rather drive listening to a favorite song and tune into my imagination

You can use too many words

You can say too much

I’m not trendy enough, too pale, too short, too sleepy

Or is that you Epstein Barr?

Infecting my remaining motivation?

Obliterating the words before they are written?

That thin wristed girl, who balanced in high heels, dancing in the dark

Her head full of sound

If you came and found me now

Stroking the night clear of wreathed clouds

I’d be sleeping beneath the magnolia

Learning the runes of its roots

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

Fixed on open door

If you said today

Run away

I’d reply

I’m too old of heart for taking chances

And yet

If I could leave behind

These footprints of hell

I’d turn my bag inside out

Leave the clothes that made me and now don’t fit

They can hang on tree limbs for another girl

Who hankers after fushia and magnolia

If you can live without

A stomach

I’d set mine free

And empty as a cloud, run

In your direction toward the sea

Where salt spray would take the last

Residue of this awful time, turning back horror

Remind me of joy I once took as permanent

Clamboring through live oak, like fairy folk,

Rays of light like stars shine down from sky

Happy dogs, wet with run, tongues lolling, espie March rabbit

The thin stream between content and crestfallen

Just one turn of fate and all you cherished is gone

Reclaiming yourself somehow, among the fallen

How can you expect to thrive when pain halts every nuance?

A burden you do not know how to lift, for it

Wakes you every dawn with insisted sickening

And if you could, you’d disguard the parts that betray you

Run into the heartlands with nothing more than release

And the long legged stride of a creature unwilling

To be shared

For you are a child of this world and no harm is meant

To slow your step, as you cleave toward pilgrimage

One flat foot in front of the other

Setting prints in ochre mud for generations

Where they will ask, how did she keep trying?

Despite the steapness of the trail

And the lapse into despair, how did she

Keep her compass set?

If you said today

Run away

I’d reply

I’m too old of heart for taking chances

And yet …

One foot follows freedom even as the other

Chaffs against chain

It is in my nature, to seek the wild

Among nature, reclaim, loss of liberty

Trying to pin me to insect board

Dry up my dreams, pack away the urge

You haven’t claimed all of me

As long as a part stays

Fixed on open door

I will in time defeat this shackle

Turning into a bird

Threading my flight far

From your waning power.

If you said today

Run away

I’d reply

I’m too old of heart for taking chances

And yet

I want the girl who was just there a moment ago

Who stood on tip-toes and wore clothes twenty years too young

Who didn’t brush the back of her hair and ate with her mouth lolling

If it were a matter of wishing myself better, I’d sell it all and start over empty handed

Reclaim the lost self, in the strange soup of sickness that makes enemies of us

I want to wake up and be, a girl of air and sea and breath

I want to feel whole and no longer racked by hurt

Go forward in time and reclaim what is lost

make me well again, said the child, in the girl, in the woman.

Fortune cookie

A girl who used to look forward to dinner and a movie

The simple pleasure of walking hand in hand with stillness and a harvest moon

was handed a poisoned fortune cookie

caught a virus, and that virus crawled into her stomach, like a ray gun

it changed the waves until, her stomach like arrythmia of the heart

was fitful and lurched

she was instantly sickened, from a person of health she turned

green

her body shut down and said

no, I don’t want to eat

dimly she remembered the days

she would lust and long for food

her appetite completely gone, the acidic growl of her stomach

held all dominion

she was slave to nausea 24/7

like a merciless dictator it left her no peace

even in the lingering hours of night

she woke bathed in sweat

her stomach somersaulting in wicked mirth

such a terrible feeling of imbalance and sickness

her hands gripped the sides of the toilet

she prayed until her head ached

for nothing could have prepared her

nothing assuaged the constant torture

every day of every day

she began to imagine

her death

fondly like a fantasy

and then when she realized what she was doing

she would cry until the crying

made her sicker and she had to stop

bottle all the anquish up

but there was nowhere to throw it, or store it or let it free

it built higher like a fortress

locking her out of life

days, weeks, months went by

she was captured between glass

unable to eat or drink without throwing up

or wishing she never had to try to chew, force food in green bilious mouth

perhaps it was punishment for a former life

where she was greedy and ate too much

or tormented the Fates with the heal of her shoe

it seemed definitely karmic punishment

just as her will to live, ran thin and irregular

sometimes imperceptable

like arrythmia pulses below the surface

that would not quiet or return to normal

disturbing former calm we take for granted

a girl who used to look forward to dinner

sits at a quayside cafe, drinking empty glasses

eating plates without food

staring at turbulent water rise and fall

waves crashing without sequence, into wet wood

holding back or pushing forward, who knows?

one day either the sea will admit defeat, or erode everything

and that is how I will be free, she says

to carefree birds overhead, yet to be struck down

they know not their good fortune

S.O.S.

28514640_10155366958932338_2887770778102742777_o324300484.jpgI wanted to

open my mouth as wide as it will go

no .. even

further

disarticulated and gaping

for maximum sound

a fog horn

and implore you

describing

the itch in my throat

the lump that turns to anchor

pulling me down to ocean floor

no oxygen, just humiliation

It says

Help me

I’ve never asked before

hot-faced and ashamed

I’m all grown up and lost

wandering toward your call

Help me

unpick my mistakes

return to the scattered fold

but every time I begin

something in your tone

heeds a warning

and I go back to

holding in

sore like spring cold

my throat is not meant for singing

it is a lump hardened by knowing

you will not hear.

(After becoming so sick I decided my only option would be to move back to a country with socialized healthcare. I basically said as much to my father, the first time I have ever asked him for help as an adult. I felt so guilty for asking. Some of my pride comes from being independent, not relying upon others. I find it hard to ask. But what was harder was his lack of response. I could blame many things, maybe he was in shock, maybe he didn’t know what to say. But parents are parents for life, if their child at any age needs help, and you know they may not be able to help themselves, I would think most would help them. Now I feel stupid, ashamed and embarrassed for asking. I hadn’t expected too much, just some type of support in moving back, if indeed a way could be found. But he stayed pretty negative, he doesn’t want to make an effort or get involved. I realized then I had long thought family meant we were all in it together, helping each other through this life, but it’s more ‘them’ and ‘me’. If I could, I would help myself. I’ve done it every other time. But being sick means you can’t always help yourself. There is no worse feeling than asking for help after feeling so bad for having to ask for help and then feeling absolutely ridiculous for having asked. I’m not feeling sorry for myself, it’s just challenging because it would be better if I could live in a country with socialized healthcare at this point, being swamped by bills I cannot afford. I suppose like many who do not have that option I will have to find another way. I don’t feel hard done by, I just feel like I don’t have that familial support that I half believed I could have, if I asked for it, that feels very lonely but also I feel stupid, for expecting, or asking anything of anyone, I wish I had the strength by myself but I just don’t).