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.

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Advocating

She used to tell other girls

Sista! Stand up for yourself!

And when others needed her voice

She lent her ROAR

Don’t be quiet and let them walk over you, she cautioned

But when it came to her own

She sat demure, a photo in old box

Doe eyed and blinking

Knees together, ironed hair

Palms touching in supplicate

Head keenly nodding on hot wire

Stomach lurching like unmoored ship, drunk on the dream of voyage

All the while

A scream building inside

NO! NO! NO!

I am not a number to be parceled and coded

Spat out and told, we have no answers, for we have no understanding of the soul

I FEEL and in the night, if you listen closely at my door you’ll hear me pray

To every spirit and four leaf clover, even, the lopsided rabbit in my arms

As time flickered away with each new day of sickness

She needed an advocate

To be her unguarded voice

Which had become lost

In all the twists and turns.

And the tall doctor

He was no mind-reader

He had his well rehearsed routine and could if needed, click his ankles in mid-jump

She wasn’t easy to label and dismiss

Nor did she want to be, a compliant good girl

She wanted to question until they dragged her out into the street

Writhing to the sound of her own outrage

That we are abandoned by medicine in our most desperate hour

Leaving unhealed like scabs, without voices, our ill tended shadows

She wanted to understand

And find ways that didn’t involve dependency upon pills

He was a blonde marionette, testing his overbite

Talking in her head, Yak yak yak

The sound of chomping wood and splinters for lunch

She heard no future

Unless she spoke up

But where was her tongue?

Where had it gone?

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).

For anyone told they have Gastroparesis read this

For anyone told they have Gastroparesis, I feel it’s my duty to give my own experience so that should you have a similar experience you can avoid some of the time-wasting that I experienced and get help faster.

You may not have Gastroparesis.

Equally, if you are seriously sick and your symptoms are throwing up, intractable nausea and stomach pain, this may help you get a diagnosis.

In the days before the ‘gold-standard’ Gastroparesis test which is the Gastric-Emptying-Test (GET) doctors tended to rely upon an EGG of your stomach to measure your stomach waves/contractions. What an EGG does is tell the doctor how your stomach is performing not in terms of motility so much as spasms and waves.

Nowadays they talk more about motility and the bias is toward slow motility. This means when you go and get a Gastric-Emptying-Test (GET) they are biased toward thinking you have slowed down motility. Although women’s stomachs are much slower than men genetically, and although people are different in their emptying/rates of emptying, there is a bias toward thinking stomachs all empty the same way.

Because one size doesn’t fit all, it’s important to find out what your stomach is doing. It isn’t sufficient to be told ‘your stomach is emptying slowly’ as this is usually based upon a short test that doesn’t capture the duration of your stomach’s experience with food. The reason it’s important is because when you go into the ER with symptoms they will often only run a GET for ONE hour. They will tell you that if your stomach hasn’t emptied 50 percent it is emptying slowly. That isn’t true, a stomach can take up to 4 hours to empty and you also need to know if they are referring to the top portion of your stomach or are also taking into account your small intestine as that is part of the stomach in terms of function.

The best GET test is to ask for a full four-hour test, and for them to photograph your small intestine as well as your stomach. Only then can they definitively say that your stomach is slow emptying. If that is not done, question the diagnosis of delayed emptying. In this day and age of Diabetes, it is a common bias that people are more likely to have delayed emptying than fast emptying. (The reason the EGG is a less popular test is also because doctors cannot make as much money from that test as a GET).

Furthermore, it’s not as simple as ’emptying’ because the Cajal cells in your stomach are connected to your brain, they have 70 percent of the serotonin in your body. In a way, that ‘gut instinct’ is accurate, and as such, you ‘feel’ things via your stomach. If you are throwing up, feeling violently nauseous and dizzy and have severe IBS symptoms this can be from the mis-firing of your Cajal cells in your stomach, that are overreacting and telling your body not to digest or to over-fast digest your food. This often happens after exposure to a VIRUS.

Here’s the real problem. Typically the medications you will receive will be medications for moving your stomach (prokenetics) that have bad side-effects and will make you sicker if your stomach is moving too fast. If the biased assumption is your stomach is moving too slowly, (not emptying fast enough) then these prokenetics will speed your stomach up but if your stomach is moving too fast this will exacerbate your symptoms.

I saw three Gastroenterologists as well as some on call in the ER. The first Gastroenterologist ordered very expensive tests (Colonoscopy & Endoscopy) then accused me of being anorexic (I had lost over 20 pounds due to throwing up all the time 24/7) and said I had Candida. He prescribed heavy-duty antibiotics for a month, when I told him I would throw up the antibiotics he insulted me and said if men in Vietnam with their stomachs blown off, can swallow antibiotics I needed to.

I went to see a second Gastroenterologist having no faith in the first. She was better, she said about the Cajal cells and the mis-firing and believed it was caused by a virus. She gave me a 40% chance of getting better but said I needed to force myself to eat more and prescribed me prokenetics x 3 a day and anti-anxiety meds x 3 a day as treatment (you get very, very, very anxious when you feel this way because you are throwing up non-stop). I had taken prokenetics before in the ER and they did nothing or made me worse, I told her that but that was her treatment. I decided after reading about prokenetics and how they have irreversible side-effects that I would not be taking them x 3 a day as that was madness, likewise with the anti-anxiety medications as I knew how addictive they can be. At this time I had had a GET for one hour so did not have any proof of Gastroparesis or even slow-motility but this was assumed to be the case.

The third Gastroenterologist explained things differently.

He looked at my symptoms and said that I could not have Gastroparesis because you would not have daily diarrhea with Gastroparesis as literally your system shuts down. I didn’t have early satiety, (feeling full quickly) although I found it hard/impossible to eat because of the 24/7 nausea. I threw up but not all the time, and I didn’t feel worse after eating (but I didn’t necessarily feel better either). Based upon symptoms he ordered an EGG rather than subjecting me to more radiation and because he felt it gave a more accurate picture. The EGG was quick, safe and painless. The results showed I had fast gastric arrhythmia.

What gastric arrhythmia means is when the rhythm of your stomach which usually is in three waves, gets disrupted, and causes extreme symptoms like 24/7 horrific nausea and throwing up. If you have diarrhea that’s a really clear sign your system is ‘dumping’ IE going too fast, and you develop a host of issues including bacteria over-growth etc. This doctor said prokenetics would worsen gastric arrhythmia of any kind but especially if you are too fast. He prescribed a Tricyclic Antidepressant at a hugely lowered dose (typical dose 300mg, he gave me 10mg) as they work on smoothing the muscles in your stomach, which slow the spasms and in time, re-set your system.

It is worth noting, gastric arrhythmia is unique in that it tends to feel a lot like arrhythmia of the heart, as the stomach is not far from your heart. You cannot tell that you are not having heart arrhythmia, which is why I said I felt I was the first time I went to the ER. Typically you will have very bad anxiety which is caused by the feeling of constant arrhythmia coupled with nausea and all the other symptoms. This is not your mind it’s actually your stomach! Heart patients with severe arrhythmia often experience crippling anxiety due to how they feel physically, the same is true with gastric arrhythmia but it is less well known so often doctors will assume you are suffering from some type of anxiety disorder until the results come back.

My doctor told me 90 percent of his patients got over gastric arrhythmia. But the key is proper diagnosis. I read online about many people who had gone through months of suffering before being properly diagnosed. It doesn’t help that when you do searches, Gastroparesis comes up a lot and many times, with cases that are not true Gastroparesis. It is worthwhile noting that Gastroparesis really means a stomach that doesn’t move. If you are going to the toilet, if you are able to eat something every day, your stomach is moving.

People with true Gastroparesis get big balls of undigested food trapped and sometimes they throw them up or have to have surgery to remove them. People with true Gastroparesis can’t eat but a few bites of food without being full. Gastroparesis is considered incurable, which isn’t true as if it is caused by a virus it often will go with time, but you wouldn’t know that from searching even reputable places online (the Mayo Clinic and many others say it is incurable and you have to ‘manage symptoms’ and the only way you find things about it being curable is when you add ‘viral Gastroparesis’ then there are many articles about remission and cure).

If you have Gastroparesis you can be cured with time. But if you have some of these symptoms and not all of them it is quite possible you do not have Gastroparesis and your doctor(s) are being lazy by using Gastroparesis as an umbrella term. When you don’t know anything and you are sick and scared it is very easy to just follow what you are being told and get really bad and inaccurate care.

If I had known about gastric arrhythmia and/or the nuances behind gastric motility problems, and why they are caused, I would have had a lot more hope and targeted treatment from the start, I may even be better now. But instead I spent a ton of money and fretted and worried and was so sick for months, before I was even correctly diagnosed. Now I am taking the right meds and I am hoping that they will cure me but I also know I have spent many months in agony which could have been dealt with better.

To help others, I want to make this clear. There is bad information out there, much of it negative, when you are sick you can really lose your mind reading the conflicting and negative information out there, so I’m trying to put out some that will help anyone who is experiencing these things.

IF you get sick like I did and you experience extreme chronic debilitating nausea, if you are throwing up, if you have diarrhea or get really bad IBS symptoms out of the blue, first things first get checked for common viruses like Epstein Barr, Shingles and NORO. If you come back as having a virus OR you experienced viral symptoms prior to experiencing these symptoms, chances are a virus caused this. It basically kicks your body into overreacting and like an autoimmune disorder, you develop some type of motility issue in your stomach almost overnight.

This is very different from developing it because of an autonomic issue or post-surgery or if you have Diabetes. Even in those cases, sometimes it can be cured but there is more of a physical reason for why it happened and it is not usually as rapid onset. Knowing why it started is important.

Second, once you know this, if your symptoms are very severe it may be worthwhile having a Colonoscopy and Endoscopy because it can rule out other things with similar presentation. However, they are expensive so if you are not able to do this, or do not wish to, then ask for a four-hour gastric emptying test or an EGG to be performed. The latter may be harder to find as it is only found in selective Gastroenterology clinics whereas gastric emptying tests are done everywhere. Ideally if you can find someone who will do an EGG that’s going to give you more complete answers. You can google your city and gastric EGG.

Third, find a good Gastroenterologist. Google ‘good gastroenterologists’ or ‘stomach motility gastroenterologists’ in your city. How I found my good one was by finding that there was a Gastroenterology Research Center in my city and I asked to see the head of it. Even if they are not in your insurance you can request they be or you can pay out of network costs which are more but are usually partially covered by insurance. Call them and try to get an appointment ASAP if you say that you are throwing up and unable to keep food down they usually will take it seriously and see you quickly.

Fourth. When you go to see them take all your information with you and say that you suspect you may have a motility issue but you are not sure if it is too fast or too slow. If they ‘assume’ it’s slow, question that, and ensure your symptoms fit slow before accepting that diagnosis (if you have diarrhea it stands to reason your system isn’t slow!). Take someone with you who is a thinker, so that they can be your advocate. I have felt so sick I couldn’t think straight and having someone else there, helps when your brain turns to mush. Write everything down.

I pieced some of the puzzle together myself. I was proactive in finding a doctor I felt was decent. I tried even though I have been so sick at times I couldn’t even get up from all fours on the floor. Sometimes a doctor will have a piece of the puzzle like my second Gastroenterolgist, but they will still do something ass-backwards like prescribe prokenetic drugs (that cause your stomach to speed up) without thinking through whether this is logical and right.

The hardest part is many of the anti-nausea medications don’t actually help with the nausea, (I’ve yet to figure out why) but especially those with prokenetic properties if your stomach is too fast. In which your doctor should prescribe something that will slow it down but typical antispasmodics don’t treat the problem they just force your stomach to slow, so you want to ensure your doctor is considering a less invasive approach such as very, very low dose tricyclics. At that dose they have none of the harmful effects of tricyclic antidepressants and do not work as antidepressants but just help smooth the spasm and speed of your stomach. My doctor said it may take a while for them to work to reset your system, if I had known about them from the get-go I may be over this by now so as soon as you can, get on them.

I’ve been told I will heal. At times I find that impossible to believe this because I have been so sick for so long it seems like a cruel dream to imagine being well. But I hold onto hope because it’s what I have. And I feel lucky to have it. If someone had told me what I am writing here, I would have avoided a lot of pain and suffering. So I’m passing this on in the hope that even if one person is saved some of the suffering of bad diagnosis and bad medicine, it’s worth it.

If you have anyone you know going through something like this, show them this and if I can help them I will. It’s been the worst thing I have ever experienced and you do think you are losing your mind after months and months of it, but with the RIGHT treatment there is hope and we must hold onto that.

Wellness

I am aware of the acrid taste in my mouth

of months

rolled under yellowed paper and stuffed with dust

I am aware of the dusk and the dawn

as it begins and falls outside of my existence

for the confined are the ones, who most seek the light

held back by the devil on my back, digging his rusty spurs

I dream

of who I was before, and who I may again, become

Restrained in abayence, watching the spin of twitching world

was there a time yet? I did not sicken at the mention

of nutrition and sustainence?

or energy enough to power through, whatever ailed me

now the vampire drains me of enough, I can only watch

in flickering shadows, a dance of memories across my jaundice

so much has come and gone in this short time, where a day

feels eternal

where an hour of pain is like

a life time without

as if cruelty stretched it out

until you could hardly see

where it began and where it stopped

or maybe it did not

end and instead

drags out, again and again, as if set on repeat

wake up, sicken, do the same until all you see

is the specter of yourself, treading lost time

and the taunt of health, is always a little too far to reach

yet you must try girl

yet you must seek

wellness

Sound

The kitchen, the harth, the space, is unlit

Weak light, nothing stirring

She is as still, as a breathing creature, can be

Sound… is for the world, chasing beyond itself

Where girls like her, hold tight to bus rails, wind messing their hair

Where children cling to parents, shy in perpetual game

Where men stoop to kiss women, full cheeks upturned

Music and the chink of movement, gypsy motion

Color and the russle of long skirts, like painted fans

A sky as blue as country girls eyes

The haggle of time

A red river, carved by motion

She wore those days, like a red dress, loose limbed and free

Unknowing yet, bestial crush of illness

Jeering like envious stranger, swallowing thin air

She is as still as a breathing creature can be

Sound, is for the world, chasing beyond itself

Anguish

cc477

anguish

is a selfish emotion

and a raw cry

made from the belly of the beast and all those terrors unseen

something honest and hardly admitted

kept behind fan and sleight of hand

it is something you hide for fear of being told;

do you only think of yourself? Are you aware others have it worse?

why can’t you just GET A GRIP!

You know all this just as you know

you can’t take one more minute

one second longer

staring at now familiar nightmare

feeling it turning you inside out and back again

(as if jaws were attached to your innards, pulling like a lover would)

anguish is an exhaustion

hunchbacked and ready to tear its own eyes

where if you could you would

run away from yourself never to return

where if you could you would

S.T.O.P.

where if you could you would

scream and never quit

until either your heart refused to beat or

something changed permanently

O the salve of darkness, shrouding such horror

how you have begged for change, change, change

please make it BE ANYTHING BUT THIS

and much as you did, nothing ever would

ease up and chill out, letting the prisoners out in the sunny yard

NOT THIS TIME or so if felt when again and again

you returned to

anguish

who is not definitely no

friend

but the enemy you know better than you ever wished

dangling by garter

over an old dunking pond

the shape of witches still burned

screaming in treeline