I wish I had never existed

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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.

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

Anger

The therapist

she doesn’t look her age, though it wouldn’t matter

she is wise in years and that’s what counts

her skin reminds me of a Swiss lady I knew, she has the color of travel

and I trust her which is all that is needed

she asks me, why I don’t get angry

I think about where my anger has gone

after all I was an angry child

only the other day a friend’s parent reminded me

‘you were a naughty little girl, but I know it was because you were mad’

it feels like she’s talking about someone else

because I have lost my ire

that’s not a good feeling

if I had it back, I imagine

I’d rage through the streets, decrying the bad deeds of an indifferent world

but I sit quietly reading a book and the clock is ticking down the hours I am not

angry

for anger …

can be a severance, a sword, a spike

and we know that

so we tuck it, tightly to sleep

there it lays, sometimes for decades

burning a hole in our placid smile

I know someone who is angry, and they

are a short rocket full of sparks, able to go off at slightest provocation

whilst I, am measured and sensible, like a bad calculation

it gets me nowhere

because I am hurt

deeply by the injustice of little and great things

whoever told me not to be angry, that I didn’t have a right, that it was selfish or

low-brow or just plain bad manners and SHAMEFUL

isn’t here now

and I am, stuck on the wheel of sickness where they like to say

‘isn’t she calm and well adjusted to her own personal brand of hell?’

I thought strength was not letting anger get the upper hand

but i’ve been in a war without any weapons

sometimes anger is better than turning inward or, staying still

it fuels the urge to live

it leaves bruises you remember

I am angry

behind this painted mask and ironed clothes

I am a raging angry woman, with still unbrushed parts

who wants to throw the phone when it rings, out of the window, deliberately breaking glass

I am fury and it is a desire of mine

to scream until my throat is sore and beseech the skies

I am quivering with rage and if I could, I would, throttle the fates

for there is anger inside and though it is buried deep

it has a voice and that voice says

why me? why me?

(Not meant self pityingly, rather, a hard truth.)

Skate

Sickness is my latest Paramore

She is more attentive

Less fickle

She sticks like late season honey to the insides of my fever dream

A purple moth with nectarine probiscis

She hears my chest rise and fall

Like carefully tilted chess pieces

Will release balance and find

Greater purchase in uneven defeat

Yet

I remain undefeated

As if by whim

A last horrah

Like a Rosy cheeked girl with retrouse buttocks

Tips her mirth at the crowd

Who in unisen rise 

Fat, thin, butter fingered and pianist

To cheer her abandon

As I turn my hot cheeks your way

Facing one another in the skeleton of dawn

I see your need of me

So insate and thundering

And though selfish mayhaps

I entreat

Pick another

I spent much time unraveling

Yet I remain

Stubborn and glassy eyed

A drunk patient of witchery

Somebody without many pockets

Containing Combs and honey

Yet my lips are sweetened by the shape

So simple and elongated

Of one more turn

On this thin ice

I bring

Few coins and less 

Courage than a child

But if you release me

I will have 

Remembered yet …

How to skate

Stigmata

 

The day they pricked paint into her back

permanent and violet

she grew a lotus mandala

lending a little stigmata wisdom

to the thin bones of her grow

for she didn’t know that year

whether to follow sharp train tracks and disappear

into the woods not to be discovered

or walk into winter blizzard

feeling her way through to

imposing red bricked hospital

sagging against its frame like

an auburn flame caught in globe

shaken from foothold

placing her wet gloves on chaffing radiator

tell the patient man behind his mahogany desk

littered with prescriptives for disease of the mind

I am not well I am not well I am not well

you must take me from my freedom and tie me up

in a satin bow atop a new gift of hope

somewhere I cannot think or pass

in my mouth the marble and coinage

of my jailer

 

if she had let herself fall then

with his regard whiskering her lament

and plummet like a fire consumed comet

for the first time without control just

the ember of her flaming skirt searing

a series of interrupted tap dances

spanning shortened  life

in the direction of diminishing

sticky mouthfuls of sweet jam taken in dark

tap tap tap tap

braille, wittled cane, white and wooden

hers was the fear of generations

her grandmother, her grandfather

laid to rest in sweet meadow of

Mont-Ventoux, beyond lavender fields

where their metallurgic table of elements

could rest from unquenched desire to end

take your medicine

euthanize the unrest

let the sleep of the dead

usher silence in prayer robe

when he died

holding his dry paintbrush

when she died

clutching her wet scripture

when their loss mixed in formula

writing her DNA prophecy

she learned to lace up her unease

absenting breath needing not to breathe

not today doctor

not ever

these houses for the poor of heart

medicated, inviscerated, shuffle in

do not come out

 

she left her gloves on the radiator

followed her tracks back through virgin snow

easier when you cannot really see where you go

somehow standing amidst the roar

sea on dry land, oceans in desert flowers

it might take defying your legacy to survive

it might take not wishing to be the next pin to escape

bowled over by shared cross-stitched disease

even the empty

even the weak

 

she got a tattoo of a lotus

on the small of her back

where men had whispered hot and slow

you are slender like a branch

I want to bend you in two as green willow

will not snap

supple in bow, play me never

this girl has forged her symphony war

out of rising in morning, ready to give up

she survived percolating tendency

and the ones who thought her lean

pressing her against shiny coffee tables

unbuckling their murmuring distaste

for respect

thinking her a orfice, a receptacle, alabaster secret

and not a girl capable of swallowing fire

 

they did not believe in signs and wonders

nor warriors who wear no armor

she stands in her diluted ink

she is the beginning, the circular, the ending

of ways we are forced to be

a stain lies on her skin

it feels like an angels imprint

lending courage for the quiet

of soul, who gathers the leftovers

surviving beyond her welt

she is merciful to the meek

as a storm gathering in force, swells against

shore, building momentum

turning the raw belly of sky

monochrome

Taking my time to die

I pretend you are there

when the world shows its cold belly

when loved ones become enemy

I reach for your solace in need

forgetful when happy, without equal reason

ill prepared for falling we climb as Icarus, nearer to sun

without parachutes too often startled into early grave

those who do not command their outcome

I believed you when you said I am safe within your arms

this world of ours inviolate

but they were just words

like this is just water mixed with blood and wine

spotting the clean sheets in which I lie

taking my time to die

now that I am alone

just one more soul who cannot

bear the taste of this world without

you