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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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

Breaking rules

Yeah.

Maybe I am that cliche

you warned your friends about

wasn’t it you? Huddled together at the bar

watching me

I could easily say you wanted a piece

but I’m classier than that

instead, leave it up to you to assume

a girl who likes girls would like

YOU

I worked hard at being

the opposite of your cliche

you think I didn’t know how it was?

babysitting watching parents watching me

wondering without saying, what they were thinking

written in bubbles above their heads

do lesbians abuse children as well?

I have spent a life time

hands off

not looking too long

(incase they assume, and it is an assumption)

not touching

(incase they think, oh she’s giving me a sign)

not being myself

because I had to be careful of your

wrong thoughts

it wasn’t me who gave you cause

like any rumor you didn’t need much, to believe

all girls who liked girls, would like you and might

stalk you or leap on you unprovoked

and how many times did I want to write

YOU WISH

in large letters above your bed

because you couldn’t earn my desire

if you spent the rest of your life running

I’m not any different to you and I’m totally different to you

because I don’t rent my emotions by the hour

don’t fall for every girl just because I like girls

the opposite is true

there have been so very few

my heart is a squeezed lemon

shy and closed

that is until you broke the mould

and became the very thing I’d always been afraid of

a woman I wanted, on the other side

so yeah….

now finally you can tilt your glass and say

I am that cliche

all you who mocked and made me blush

at being myself

it’s finally true, I fell for a girl who couldn’t

return my gaze

that’s the downside of being a lesbian for sure

once in a long while you fall for a straight girl

who just ruins your rule book

I knew my invisibility- Candice Louisa Daquin — Whisper and the Roar

I knew my invisibility when the lady next to my mother in the nursing ward took me in her arms out of pity for there was nobody there who cared to rock a crying child , who was not wanted by hedonists who erred in pregnancy I knew my invisibility when my mother tucked bus […]

via I knew my invisibility- Candice Louisa Daquin — Whisper and the Roar

Drought

e0139746f2c22ac00574933c26b4f91c--sufi-photo-galleries

Out loud you hear yourself say

I don’t need to be cared about

And the cave dweller behind your eyes says

Liar

The rain is mentioned on the news nightly

But it never arrives

And we are driven to distraction by

Our dry state

If you

Knew what I was thinking

You may blanch, squirm and feel embarrassed for me

For the feelings I have, not reciprocated

Or you may

Take me on the lawn before the rain came and green was turning brown

Turn me into water and let me loose

 

Or you may

Be holding three versions of repulsion

If we’re meant to read minds, my sense is blunted

I only see the gathering clouds swell ominously overhead

Stubbornly hold onto their rain despite our need

Standing below imploring

Though it is us, with our concrete lives

That usher the rain gone

Until when you least expect it

When you have given up

Taped and sealed yourself back up

Return to maker

Perhaps then

Rain

Will fall

And you will open

Your arms and let me

In

Rune

They ran through markets

elms strung with sari’s

bedecked with jewels and

girls kenning their heads

babes at their breast

growing crowns of red and indigo

she pressed into my palm

the spell of her rune

smelling of Finnish water stone

rubbed over and over beneath time

leaves still containing their flung pigment

where slippered feet ran and picked them

casting their glass throng to glory

she has the shiny hair of a child and

cheeks full for her pressed size

she who is gone and now returned

talking in other languages with Irish accent

she who manifests and disappears and is reborn

doesn’t look large enough to give birth

or sing at the top of a road the song of her

we were

separated by water and fear and longing

broken in sea, put back together by current

I was always swimming in her direction and the

light tread of her spring

she is a carnival of paper-cut outs

wearing scarlet hose and rings on her toes

yet upward / yet down in earth where

roots inform her choices as well as ancestor

she is of me and I

am stranger and intimate

familiarity is a rubbed sleeve on silver

her thin knees beneath duvet

twitching dreams caught in muslin

tents in high wind holding their claim

sheared gravity, she is lifted from her sail

and through the tarot of her eyes

I see each snapshot and Rorschach blot

when they told us friendship will expire

they did not know

the language of ink and how

it leaves itself

swirling for paper

on which to draw

us

Into water

There was grief in the last time I was myself

long-faced, retroussé nose, thick hair

broad shouldered from swimming away

cutting through water, weightless

not carrying your stare, your aprobation, your disregard

if ignored, let us ignore better, make an art of failure

suck the pipe, squeeze the last drop, inject, pop

those blue pills, as blue as you made me feel

psychiatry says nobody can make you feel anything

you choose

did you choose to feel nothing and by nothing

cause my center to crush softly inward

like the river flowers we press in our books

before you were born

carried over generation from generation

I laid in the grass wondering why

no lover had sought to please me

and the boughs of the trees revealed themselves

as my hand wandered back and forth

drenched in sweat

for who can satisfy a tin box with its lid hammered shut

who can know the heart of a girl who is told before she can walk

she isn’t enough, she’ll never be near sufficient

then you walked out of the river

green and shining like forested afterbirth

you did not care about forms and structure

spelling and photographic reproduction

you had a tongue and eyes and hands

like a thought with action

you claimed me beneath alders and pine

stretching so high, embracing unseen faith

I became a woman that day

crying out beneath your stones and mud and lillies

as white as an urge

with pink in the center

craving to crest in sun

and fall wilted back into water