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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Vapor

V005

Your head moves under hot lights

thrashing

a passion as you open your mouth wide

roar your words

small teeth, thin lips

skin colored by strobes

I want your impulse

your brave furious eyes

your mad flung acrobats anger

it’s the addiction to throwing aside

caution

striking out like match on ink

permanently marking your stride in heat

I watched you take a whole roomful

swallow them whole with your flame-thrower energy

spitting them into stars and tilting laughing

as they adored you and didn’t know why

your mercury vapor left them reeling

clasping my hand in the car with headlights off

driving blind down blurred country roads

inside me with urgency born of

thunder and trees struck silver

firing in strange shapes of want

it felt like flying, I grabbed a tuft of you

spun like a catherine wheel in your orbit

time was fast and everyone watched as

we climbed buildings in our wonderlust

they’re crazy, they’re so in love

they’ll burn out, they’ll extinquish each other

we never did

not until the key stuck, didn’t turn around anymore

rusted and tired of pushing wooden horses

tired in their paint and festoon

oh I would have made them well again

as I did you

just for one more shivering impulse

riding your coat tails as you took in

the capture of your swell

kissing me beneath table tops

our faces glittering from thrown aside masks

hands reaching, climbing up skin

dance of thundering hearts clamoring to be

still

as you lay now, white out, no sound

I dance contorting to cause a smile

there is none

only a wick, half used, half submerged

in waxen reproduction of what was once real

give her back!

give her back!

I yell at rooms without inhabitants

tables missing their chairs

windows containing no view

your fingers trembling in mine

if I could have

I would have

made us one

save this image; a kiss lasting past quitting time

you pull away and reach in again

no ending,  just softness

a song we live inside

calling us home

there we go

hand in hand

through the vapor

vanishing

 

The Analyst & Peter Pan

Holding tears beneath excessive eye-make-up

not smart when pealing secrets from heartache

I noticed the Analyst had cut her hair

in Jewish faith, hair is a woman’s greatest vanity

to cut it, often a sign of extreme despair

I cut mine when I was sick, it fell like a lambs tail

to the floor in red scissored ribbons

in the mirror I looked like a shorn stranger

trying to climb out of familiar eyes

reminding me of the time I sheered it off at 16

my lover left me soon after, he did not care for short-haired girls

I told the Analyst I liked her new look

wondering if there was a story behind it

the never-never velvet glove of Pan’s world

his need not to be a he or she or have a Wendy

instead to be free as we are at ten when

nothing of this world can truly touch us

gender becomes a learned yoke in the future

she recalled her sheer days of freedom

wishing to return as we all do, to a kinder time

I do not know if I am this or that

but I know what I am not

I felt it was honest, when you do something big

there is always more of a story behind an act

I sat looking out of the small office window

remembering sitting there before

sick and heaving

thin and fat

slump shouldered, bare-faced and dolled up in war paint

I remembered

driving to you and dancing in my limbs

as I saw you look up and wink

changing the light with your smile

knowing

I will never leave that office and find you again

because you were gone even then

I just hadn’t known it

too sick, too set on denial and fever dreams

perhaps when you know you will never experience

that feeling again

it is harder to let go, watch such a large part of you, fade into background

you are grieving she said

her short hair in her face

I thought of you and the pulse, laying like a long empty road, between us

my heart squeezed with a terrible pain

children flying from an open window into stars

tears splash on my skin, like your touch

which I will not feel again in this life time

so you pronounced with granite in your eyes

and I nodded

dumbly

unable to say anything more

but watch the light

skip in and out of the small windowpane

where once I held

as much pure love

as Peter Pan

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

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

You are not a girl anymore

Girl you are not a girl anymore

you are a woman

woman you are reviled and judged

for being a woman

when you were a girl it was suffice to

have a nice pair of legs and a pretty mouth

do you recall how often you were asked to ‘cheer up and smile love’

when all you were doing was trying to grow-up and be serious?

how men would do your bidding because of your WonderBra and not the sense of your words

now you are a woman

you will inherit

inequality

double-standards

and not be able to find clothes that feel right in stores not meant for your body

because nothing is going to come easy anymore and still

as you sit there in your curves and your burgeoning skin

feeling the surround of yourself lapping at the corners

you will inherit also

the voice of your round bellied ancestors

who have come ringing through time and again

been judged, poked, prodded or worse, flat out ignored

seen how silver haired men get all the fuss like carefully licked jewels

whilst a woman of substance is

lost lost lost

behind the mad din and snuff of youth

for youth it seems needs a distinguished father of any age

but does not require

a mother

a grandmother

a female sage

for women are judged upon their reproductive abilities and

the years they have lived beneath the moon listening to the shore

if too few, they are deemed unintelligent

too many and nobody wants to hear

for women are judged upon

scales created long before

an even playing field was won

if it has, if it has yet

for women it is easier to become lost after the lights have grown less hot

held to a higher standard than the eternal covet of men

who are picked up and dusted off by many worshipful female hands

too eager to say ‘there, there, I will help you, poor thing’

who shall help then, the woman?

Not her own kind, surely, nor men who adore only youngest vintage

Who shall see her? When she is grown and perhaps does not accept her allotted place

or wish to remain invisible or grow old with pressurized grace

who shall listen when she wants to be heard at any age?

or the desires of her are beyond the sanctioned pail

or her damp passion which does not flip and flop and require Viagra

a woman if she is loved

is ten-fold her maiden self

for the wefts and the welts are earned and learned and now they represent

a splendid coat of multicolor

she wears with pride and sometimes regret

but more often silver wisdom and the softening yet

of her edges into rounded corners and eventually

a supple circle come full

the world may dominate her discourse

the youth may clamor for their right to change the channel

she may slip quietly through the bridled noise

with strong thick womanly thighs

and as men chase their tail and young women cast a gaze that seems to say

who the HELL do you think you are, old lady?

woman, you do not bat your eyes or rise to those absurdities left behind

for she is the wake of day and dusted sleep of night

cradling the future in her all-mighty grip

she learns from being kicked

to stand she must let go of the girl within and be

a woman of our time

casting her pearly net wide as she

swallows the sea and sighs

letting the tide tumble out with her exhaled breath

aaahhh yes

aaahhh yes

Mercy

Answer me

Please

Climb out of impossible and

Dipping quill, write backwards in time

Angling mirrors to lipread

Da Vinci’s reflected scrawl

tell us the unravel to the mystery

Where in this hour should we go?

When they let you down slow

Removing fantasy, layer by layer

Are you there?

On the emptied pier, bare of hope

Dour endings posted like nails in my palm

Is that you? Cresting wave in falling darkness

Light, just a slip of a girl spilling over her dress

It is cream and carries each stain like a mast

Are you there?

Crunching underfoot, doubt that goodness is lost

For you, with your thin shadow, still manage to

Fill me with light

A radiant being, rarefied

How often to find, one whose mission isn’t self

But the betterment of others

You, who don’t even know your worth

If you did, you would hiccup and grow embarrassed

It is not your need to be praised, you are a child of mercy

Your pleasure is in lending kindness, to mend the scold

For this world can be so lonely, and you

Are a house to come in from, settling cold.