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

For all

Before, it would vex me when my nose ran and I didn’t have a tissue

when the tap dripped and no matter how I jiggled it, the drip drip drip would perpetuate, leaving a little rust stain, impossible to clean

when the cat would kick his litter out and eating fast, his food would spill, over the side, as he bent to consume just to again use and befowl

his cycle of eat/pee/poo seemed deliberately artful as if should he speak he’d say; that’s what I think of you

I would be annoyed at myself, when I forgot to latch the garden gate after mowing

and at night hear the sound of things moving, wondering at the fragility of life, should something creep up and strike

how easy to be hit by speeding car or thunder bolt, I spent far too long worrying the clouds of their impending storm

before, I would stand in front of tiny mirror, angled at my waist-line muttering things, without knowing how shallow I’d become

the baubles and the bells and whistles, trappings of someone as yet to acknowledge herself

just the illusion, the dress, the costume

I built castles and didn’t consider the ground

I forgot the child’s dear wish to fly and thought only of earthly options

my head was packed with good sense and no dreams

it mattered more that I possessed signs and wonders than to be real

in time as our tinsel fades and the corners of our smile grow brittle

when challenges mount formerly wrinkle free forehead

we stand so far from truth we could not hear if it shouted

come back from the festival, where drunk on yourself you see

only reflections of you in the carnival mirror of the sea

spend time stripped of your attachments and awards

they serve no purpose when they matter not at all

stand a while with nothing, sense the pleasure of a day

born only once

the joy of survival

a moment without pain

where like children we find wonder

In those days of simplicity beneath the sun

before we learned to live so thin, nutrition coming from emptiness

before it would vex me that the bulb needed replacing, garbage taken out, the dried remainder of eggs did not come off breakfast plate

and now

I smile when for a moment I am peaceful and the lap of night winks closed for another day to unfold, the first strain of pink ushering dawn

and hope

for it takes only one change, for all.

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.

All we ever are

Remember when

Prediction wasn’t predictive text

It was submersion

Lying still on the bottom of the swimming pool

Blinking upwards at frantic milee of kicking legs

Oh what a noise we humans make

Prediction was the rune you gave me at seventeen

The ink of your influence still in my blood

Riding the ferris wheel in Ireland, watching ourselves convulse

I could smell you on the old letters I kept until last year

I could guess what you’d be doing and what color you began to wear

As things changed for us both, still we stayed tethered

By our invisible dive and the angle of seeing the world

Without air.

There’s a little known secret

in the recess of a soul, put there before birth

find strength from suffering, then appreciate the good days two-fold

and when the time comes for a long hot walk

the road forks

one direction takes you back in a circle

where forever you’ll lament the reunion of your despair

the other road is perseverance, filled with danger

so high it goes, you cannot be sure of air

to breathe, you reinvent gills and return to the source

brine and water, that’s all we ever are.

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).