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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Thrift Store Special

teddy1

If I hung in a storefront

I’d have no label

It was torn off in the wash

The store owner lied

Trying to cover a great crime

I’m not gentle cycle, nor wash below 30c

I don’t fluff up well in dryer

Or need ironing on low heat

I’m a thrift store special

Good for a gander, then better cast off

Stuffed in the back of your closet

Forgotten until you move house

When you hold me to the light

Exclaiming; where did I buy this?

A little wistful, a little disgust

Just like a spare thread can run

Through any knit and mar its form

I was shrunk on hot and stretched in cold

Long before you grabbed me out of the lucky dip bin

It was the elongation of my experience

Like wool is malformed turning huge in water

Expanding and reducing, I am the sheared sheep who took off

When the shepherd came to my turn

I never backed down, nor avoided spitting in their eye

My fur smells of energy and emptiness and freedom and neglect

You wear me when you want attention

Or to be someone you’re not

And I’m sequins gathered in a pearls bosom

The knotted mohair and impossibly soft angora

But most of all, I’m the time you left your possessions behind

And rode in the dark without lights

Imagining your bicycle a horse and you …

with your dress catching in the spokes covered in oil

You just wanted him to catch fire on your edges

Sounding the cavorting need you had to bloom beneath

Then you were a water-lily and even years later

You are reminded each time a candle is lit, the smell of wax

How he burned your fingers with his inelegant desire

And you opened like origami to his bewitchment

Then you were a dragonfly, passing through fountain

If I hung in a storefront

I’d have no label

But you’d purchase me all the same

Over again

Smiling

At the memory of

Something you couldn’t quite grasp

Blur (collaborative poem w/Tre Loadholt)

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Echoes of pierced hearts
Taunting evil deeds
Motherless child from a
Damaged womb

Breathless before God
And his followers
Atonement expires
Heat drenches a soaked soul

A sparrow breaks his wing
Black ash falls from the sky
Voodooed and seanced
A blur, a speck no one sees
Or knows

If you moved from colored bruise beneath silken pour of sleeplessness

Supple backed, dewy salt, two thrust on tiptoe, catching breath

Shards blending, fizzured pulse, ever and ever, tongued capture

Flush against humid glass, hold–pressing fierce crimson, disturbing numinous hour of sewing

Children with boiled seaside sweets, deep in their catkin singing mouths, dream of a dark cast–shrouding

Morning’s nectered promise, fed gobfuls of glib adult reassurance
insubstantial as fluttered dancers heart

Yet as I quit–the hingeless drug

Your smudged anger envelops, the stray chill of my shoulder

As a bandage will hold us, burned into place.

Until moths pick their way from water-painted cocoon

Feeling their way in inked shiver, milked squid, gesturing tresses

Your long goose neck–bent to catch, last wetting of ground

For rain begins her throbbed drumming, swelling in granite intensity

And I, shake my lethargy off
Pack pain in her paisley ring box

Tasting cyanide and fruit

In the orange peel of day

Chasing last whisper

Of her quiet running horror.

 

Collaborative poem by Tre Loadholt & Candice Daquin

Inspiration: Sylvia Plath’s “Ariel” https://www.poetryfoundation.org/poems/49001/ariel

Artwork: https://www.pinterest.com/pin/328410997808168523/

Tre Loadholt: https://acorneredgurl.com and https://medium.com/a-cornered-gurl

Candice Daquin: https://thefeatheredsleepcom.wordpress.com/

The road

At first the road seemed seemed impassable

Such a long distance with no sighted end

90 pounds was

A hollow eyed effigy, struggling not to drown

100 pounds was

A sickened mouth, forcing itself to swallow and chew

110 pounds was

A hunger to gain lost appetite, swill of food laying heavy with each urged step

120 pounds growing muscle

Punching the fuck out of weakness and despair

125 the goal, she fought, her joints bloody and plastered together

When she arrived, her body, her mind, her vibrating soul, she stood and cried

At the distance she’d travelled, cracked knuckles captured in dried clay

Stretching like bad memories, bleached by unrelenting sun

In spite of this, still, a flower is able to bloom

Beneath your coat

Losing your mind feels like

Slipping your chaffed hands into a pair of rubber gloves

Plunging them into hot washing up water

Hearing the chink of porcelain, knocking against glass

Impossibly fragile.

Soon the water grows murky

You cannot see, nor reach the bottom

From the top of your head to the ache in your feet

Standing wooden, bones imploring, knitted sweater itching corner of your cheek

Passion in contrast, hot freedom, dusty legs slightly parted, cold between

An urge as you stand beside the sink

To dive in

Silent impulse on a cold day to keep your hands deep

As long as the water stays hot

That feeling when most of you is dry and clothed, but part

Is submerged in warmth, feeling like fingers working their way up

Stockings, underwear, the electric wire beneath wool

Into the mirage of your longing to let go, absolve yourself of .. it all

If you could release, lie back in kneeding waves

You might let your weary cracked elbows

Then shoulders, sopping, sink beneath

Climbing into the sink, patent shoes slipping

Brassiere faded by multiple wear, a grey strap, a bulge of apricot breast

Hair loose and dripping, reflecting against dull tin

A buttoned up woman trying to gain admittance

All thoughts stewing in your head like vegetables boiled in water lose

Their flavor …

As politely you wash and rinse, checking against light for water spots

No one shall ever know, the devouring urge beneath your coat

Imperfect paradise

Today baby, everyone is pert and beautiful

Photoshopped at perfect angle

Swollen lips, weak jaw, 2000 friends with guitars

Can’t keep up, even if I were two and twenty

Better my generation-X lost our film

Before developing

Didn’t keep a record, of that mistake, or this bad day

We pretend and forget, imprecision a comfort blanket

Not wanting to keep in touch, why force natural closure with technology?

We lost your digits and never knew your surname

A blurry mystery of poor memories

Was it that candlelit poet’s bar now closed?

No proof, no evidence, if a tree falls, does anyone know, if it’s not on Instagram?

I liked your home dyed hair, we shared night under looming sky in damp sleeping bag

You fucked my ideals of love when you slept with her

Sent me on my way with a trash bag of belongings

A dead squirrel slothing skin, lay ackwardly beneath your window

Its stink remaining when I was gone

Rumor had it you used her hose as contraceptive

I never french kissed again, or wore tights

Her name was Bo, there’s only my recollection to endear spite

If I saw her today, she’d be married, still tan and leggy

I’d be tempted to gaze up, crack a joke about what denier she preferred

Glad I don’t have a Facebook post about him

Or the other errors, or the other sins

We ran without skin, coats, phones, without GPS location

A bum camera slung on collarbone, for special occasion

Your grimy hands entwined in mine

We knocked our shins on tree stumps

You don’t need Technicolor to be lovers

You took a photo of me nude against the bed

When we argued I tore it up and now it’s zero

Thankful, as I hadn’t used a razor in too long

Along with you and your cigarette butts making daisy wheels of carpet fiber

We smoked when we knew it would kill us

We didn’t floss

Those were the days of ugliness, sloth and 3am torn condoms

I loved your 90s dirty hair and sunburnt cheeks

Keanu in The Rivers Edge, chasing Dennis Hopper and his blow up doll Mary through pine forest

Lying in dead grass in the park, watching topless girls dance with loops of fire

You pressed into my hips, we made out and I can’t remember much besides, the way your fingers felt inside

Perhaps I left early and rode the bus back through dark city, head leaning against grimy glass

Maybe we slept all night and I gave birth

To the ecclipse of time

Shifting and changing

No evidence of

Similarity to now

An imperfect

Paradise

The next generation

This isn’t a pity poem

who the hell wants to read one of those?

but if I’m honest

which I’m not very often

preferring to put on a mask and sit mutely smiling on the outside

it’s sometimes harder to pretend and say nothing

than let it out

if I did let it out

what would IT look like?

am I really so bad for having an urge to share?

the empty feeling inside

surely that’s how we hope to fill ourselves

with something other than hot air or quiet despair?

one thing worse than peripheral is rejection, so usually

we stay quiet about how we really feel incase it’s true

nobody really gives a damn once you’re grown

how I got to this juncture is the easy part

a girl is born, her gender is already

a strike against her in a world easier on men

we don’t treat girls very well

maybe there should also be a rule against small families having smaller families

call it what you like, I call it diminishment

I was diminishing before I was born

when there’s nowhere to go, you usually strive to go up

but I was bad at direction, turned into a box turtle and hid in my shell

hoping someone would pry me out

that was my second mistake

generally it’s worth noting, people do little for free

if I could tell myself that I’d have said; Don’t rely on anything but you

you end up staying inside too long by yourself

before you know it, even the language you speak

taints your chances to pretend to be normal

I look

at photographs of other people

they are surrounded by people, fitting in like

well crafted pieces of puzzles I do not fit

I was the kid sent off to eat with other families, never my own

it felt like a kick in the shins then, and everytime since

feeling ackward in a crowd

because I didn’t learn how

to belong

so this isn’t a pity poem

i’m not chafing with self imposed isolation

not the girl who smiles when she’s crying, or maybe I am

or the one who feels more alone when amongst a crowd

everything is so quiet when that’s how you’re born

it takes a fortitude I don’t possess to break the cycle

erase the twenty years forming a tongue without social skill

I hear the sounds of a party rising over the walls

a party I could be at though, I know

i’d be pressed against the wall without a way out

though all I’ve ever wanted is to learn a way in

i whisper

i am irrelevant in this scenario

self worth is tied to others even as we know it comes from ourselves

i didn’t generate any faith

so I don’t believe in God or me

but I do believe in you

if this was a pity poem I’d ask

why you didn’t help me learn how to live?

though I know the answer already

you couldn’t do it yourself, what chance for me?

we’re cut from the same cloth, you and I

that’s why we both hide

like the man in the high tower

did he ever feel as lonely as I do?

why didn’t he need

the things I cannot seem to reach

it’s like I am stretching out for them

but the betrayal of beginnings and everything after and before, is too deep

we betray ourselves most of all

in trying to be what we just aren’t able to

a teacher once told me you can be anything at all

that’s a lie I know it

we each have chances and some of us have fewer props

so we stand ackwardly by the side

trying to be someone we’re not

until the inauthenticty feels like a curse

we revert to type even as we dislike who we are

this was set in motion before we knew

we’re just the next generation of lost

not self pity, no, more like a pain

a mere poem cannot do justice