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
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
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
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
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.
Bottles of pills fall from the sky
they look like Texas sized hail
each one comes with a promise and a warning
in some cases several
it’s a pretty thought to cancel the warnings and embrace the promise
I promise to ease your pain
I promise to lift your anxiety
everyone loves a restorative
even when the sky isn’t blue it holds faith
like a confident lover
the birds don’t know our fitful human world
they only understand song and flight
you’d like to be without gravity
it’s a small price to pay
looking at your life from up high
we treasure absurdities
then something happens to shift delusion
for what do you need of things?
when what you really need
is found in the wielding air
They said, keep the blinds drawn, what we have to say, isn’t good
they lay her down on a white sheet and beneath, the hammered metal hummed
the bulb in the middle of the room, behind linoleum, sung a hissing song
their white-coated pluck and scratch, indifferent and sterile, she was just, flesh and blood
another in a long line of patients who, largely were forgotten, consumed by a machine, uncaring of individual
she could feel the dried corners of her eyes crack, as she looked left and right
someone once told her, adult survivors of abuse, find it hard to relax
they are always looking for what is crawling out of cupboards
she didn’t want her past to run her future, but now it seemed, her future was in doubt
never before had she felt so alone
the petty bravery of moving countries, seemed a facile thing, for children who didn’t yet know, true terror
surely it is easy to be brave when you have no war, and are just posting letters
she lived like that for so long, running from childhood’s sadness, enjoying the wide open space of adulthood
thinking she had all the time in the world, surely growing older was for another life
it wasn’t entirely selfish, she did her part, but there was always the tendency to want to make up for the past, by living without a care
and then it was no longer that way
impossible to ignore, unable to let go of, she was swiftly consumed and irrevocably changed
even if tomorrow the cloud lifted, she would never walk as lightly as she used to
the power of naivety, ignorance is surely, our dearest friend
now her heart beat fast all the time, unable to still, the surge of emotions inside
she was a rabbit in her burrow, smelling fox
she was no longer the quick silver of a girl, without terrible knowledge
days were unbearably long, and serious, like the frown on an old man’s face
they spoke of compromise, a series of steps, faltering and bursting apart and trying over
it was as if all of her was removed and pummelled into earth and made to rise again
never was it more silent, never did she wish for the phone to ring and something to let her out of the nasty trap with jagged mouth
words are just words, she could have said; I am strong, I am going to fight, but in the next breath she may
simply not be able
and that lack of, that inability, like a prison, or a sudden dismemberment, was, a kind of horror she’d never been creative enough to imagine
like being stolen from yourself, and hearing in the distance, the sound of children dancing
to your favorite song
if life is indeed a battle, she thought, this is where I need to buckle down
put aside my tendency to want to climb out of the window and skip the lesson
stifle the longing to run fast, in the opposite direction
everything so far, had brought her to this point, it wasn’t what she’d imagined
instead, she’d hoped by now, she’d have found her groove, begun as humans tend, to build her fortress
it wasn’t time yet, it wasn’t nearly time yet
and all the days she’d squandered, thinking there would be more
all the long drawn out machinations, to position herself and be ‘responsible’
denying the lustre of living
she’d put off joy so many times, in favor of ‘sensible choices’
where were those now? She berated herself for not having taken
more vacation, more experiences, that glass of wine, danced on that table top
she worked for a future, she may never get to experience, sure she felt bitter, angry at her lack of insight
though most believe, we’re never ready for bad news or, the fall of favor
we think we predict worst case scenario but that’s only an anxious mind
seeking to control the uncontrollable and unknown
nothing prepares you for a premature curtain fall
nothing shores you up to deal with catastrophe
we muddle through or we give up
those are the only two ways we journey
when the wet-ass hour comes tolling
she felt a grief for her bad choices and wished, like others she could have no regrets
it is hard not to regret when you’re cut off from everything
difficult to look forward when the present is biting at your ankles
she wasn’t one to pray for herself
but she did now
she prayed for the strength she felt she didn’t have
she prayed not to feel so isolated
cried thinking of how many before her, went through this darkness alone, their hearts aching to be cared for
she was a little girl again, looking for her mother beneath furniture
seeing her in album covers and from the top of buses
that woman had her mother’s eyes, large and dark
that lady’s figure is slim and reedy like her mother’s was
at night she wanted to feel the way she imagined a child does
put to bed and told, everything is well, you are safe
if she’d had children, she’d be saying it to them now
but life threw her a curve-ball and she ended up reproducing only
empty rooms collecting dust
perhaps it was for the best, now that she’d sunk so low
for how could she care for anyone, when she could not for herself?
if everything has a reason, she wasn’t sure of this
to teach her gratitude? To punish her for lassitude?
if there was a God she hoped, somehow to end her suffering, even by means of eternal sleep
but she felt bad for praying when so many, suffered far worse than her, and how they coped, she did not know
only that she had to try each day to keep going, in what direction was unclear
she wasn’t sure of the sign-posts or meaning, it was too easy to let fear, guide her way
so many things needed to change and yet, she was tired, so tired of fighting and being scared
they say those brought up unkindly, learn to be strong
she didn’t feel strong at all, she felt like only a thin wind, kept her from collapsing
and all her plans were thrown in water, watching the ink bleed out, with nothing left to find, but papier-mache
her grandmother once told her, out of nothing you can build, entire universes
she tried now to imagine a place, where she would be restored
where all the things she still had to do, remained possible
surely you can tell when, the end of the record is over and, it’s about to go quiet
she hadn’t been able to, she’d one day been carrying her dancing shoes, across the newly waxed floor, her eyes feverish with anticipation
and the next, swallowed by sickness, left without curative
only the static of a cold room and a script for patience
she’d been spat out of the system, left to flounder by road-side
how different, she thought, from childhood where, we do everything to protect them from fear
sewing toys that will keep them company at night
mobiles to send them to sleep, songs to ward away nightmares
and at some eventual point, we decide they’re ready for the real world
full of savagery and disregard and people who are supposed to help
but are only doing the bare minimum
is it any wonder we flounder, and miss a step?
looking around in wide-eyed fear
mouthing the unasked question
is this what it feels like, to be real?
is a color I cannot describe
a place I don’t fit into anymore.
Even if I am restored
things will be changed for good
for most of us there are times
that shape our marrow
could be in the form of torment
maybe sorrow, sometimes joy
often the hardest times leave deepest imprint
perhaps it shouldn’t be that way
we should rejoice our luck a little, usually too busy enjoying ourselves
to leave permanent mark or maybe, challenge speaks louder than mirth
it is easy to accept a good day like a hot bath
than deal with a bad and hollow foe
that’s when our quick is sharpened,the story of our lives written
on the tip-toe of endurance
and what if we do not want to endure?
too bad, shit happens, legs break, minds crack
we’re going to end up there at some point
better waterproof our leaking sides best we can
the ocean isn’t a forgiving mistress.
When I fell, my mouth filled with salt
even then I didn’t know how far torment, reached down
it was a well, beneath the sea
a second drowning
for those who long to be free above ground
shackles of the merciless kind
only then I wondered at the strength of others
enduring from such an early age whilst I
ran long in the garden, unawares, chasing butterflies without a care
thinking I knew real pain from a momentary hurt
I knew so little
just a moment ago and a life time apart.
I am a twin of my previous self
we stand on different sides of the same coin
I am submerged, she is still, basking in the glow of a harvest moon
sometimes I look over at her and feel such envy
anger for my lack of appreciation when I, was her
but you cannot lead a horse to water
you cannot teach a child what she must learn
getting stung on the principle, she discovers through pain
it wasn’t in my thoughts that I should be
the girl on the other side of the echo, pleading to return
I don’t know if I will be permitted
but should I ever, walk again without curse
it won’t be as the same person, but a mixture of two
once you’ve seen yourself and begged for mercy
everything alters and everything stays the same
it’s up to you to be mindful of what you learned in that maze of pain
I learned what we think of as hardship
is often just everyday life
what we believe is suffering
can be comfort compared to other lives
when we don’t think we can change
then we aren’t given a chance, we know we should have
it is in diminishment we find elucidation
it is in horror we see truth.
Let me back inside my life again
and I will not be the girl who, took the easy road
for she now knows, just how deep anguish can go
it is in the tangle of the briar
and the wormwood of old trees
whispering advice never heeded
by the youth who believe themselves free.
is a color I cannot describe
a place I don’t fit into anymore
Listening to the words
In my aching chest of wingless birds
I am afraid
Today I woke and prayed
For a better day
And it didn’t come, though I heard the horses
They were galloping fast, they did not stop
How momma? Do we stay grateful? For every given hour of precious breath?
When scythe of hurt cuts so well and wraps the days away in little vials of hell
How to live in the present, when presently is torture, crushing her toes on pointe?
I try momma, I break the fine bones in my hands in supplicate, my arms making sundials on wanting earth
I ask my toy penguin
He eyes me with the same glass eye he has been using since I was little and he saw me break
And turn to seed and grow back into a girl who recognized he was real
And I know if there were a flood
I’d save before myself, that glass eyed toy
He has seen my days in ways nobody else, could or would
Though he is stuffed and inert, also the witness to each tug of war, his little cloth heart
Beats like a stray moth against my window pane
He tells me to remember
Despair will pass
A bad day is not forever, and so in time we’ll learn to hold, tighter
The unbearable and it may turn, like shaken snow globe, upside-down, white obscuring foul
Some slow imperceptable change of season, a sign, the very beginning starts with one
If he could speak and he does
He’d tell me to be brave and wear my best dress for the clouds cannot and will not persist
Take comfort in those smallest things
It could be one minute in an hours slow turn of hand
It could be one moment out of three weeks broken by tired cries
I am on my knees
I long for peace
And the quiet of memory reminds me
You have been here again and again
You have risen to answer the entreaty of a heart still beating
Longing to be released from her sentence
And if you look closely
There is still
A desire to overcome with the wish of a river to capture rain
Stronger than anything you’ve ever experienced, my penguin knew before myself
He is who I’d save, if the world exploded into flames, curling value to cinder
I am reminded of what I can feel by his capacity to shake, my despair out of her plan
To hang by tree and catch late afternoons air, as dead as last night’s terror
And I stroke his face
Wishing with everything that stuffs and fills to become me
To be free to laugh again
I promise him
To be that girl again
The day will come
THE DAY WILL COME
when you fall and feel you cannot get up
and when that day comes and feels like it’s won
you will pull yourself
inch by inch, of broken spine
cry by cry, scream by scream
until you stand
and when that day comes
you will think on this and know
belief is half the battle
faith the other part
there is no room for query or supposition
let not the terrors a place at the table
the pure hearted know
healing comes from the soul
I tell myself this
at 4am over the toilet bowl
exhausted before I have woken
I tell myself this
when panic grips my chest like a thunder bolt
and whispers in my ear, it’s been six months
I tell myself this
when the person I was, is not the person I have become
but a whisper of what was
we have a choice in our fight
to take it, to face it, or to back down
and though I wanted to give up, though I tried to let go
I’m still carrying the smallest candle of hope
it is in the stains of your disaffection
the hideous recollection of your breakage
when you see through the ugliness that doesn’t quit
and pain needling you like it learned to knit
those fierce moments in between
they are yours
and the day will come
full and bright and brilliant
when you shall, reclaim yourself
Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.
I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.
I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.
You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.
If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.
I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?
It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.
That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.
You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.
Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.
What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.
The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.
I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.
I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.
Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.
It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.
If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.
First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.
I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.
Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.
I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.
Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.
So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.
Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.
I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.
That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.
My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.
If you’re reading this and you feel hopeless, know that you are not alone and there is hope.
A prayer was said
We bowed our heads
Even me, the last disbeliever
And as I bowed, I felt my crown
Glisten as if, someone was baptized
A transfused light whispered
Lay down your damage
Disease from health
Fear and habit
For we learn our lines
A little too well
In smoky glasses and from the bell
Tolling like a dry tongue overland
Where sound knocks on peace
Disturbing those who thought themselves free
A claim check, wet in your pocket
Salt stains on your cheeks
We cannot weep for who we were
Before the curtain came slowly to wooden floor
Only reach high to see
If in straining such weight releases
The trapped fur beneath us
Darting eyes the pretty prey
who can say
Yet we heave
Overboard those useless parts
Remade in full moon aching over Baskerville cloud
Not yet, not yet
But one day soon
Softly they capture
The soul set loose
She is the nimble girl who curled inside you, pounds for release
And panic is a thing with teeth
Set loose too soon
Let it pass in its frenzied rush
A drug addict to the hideous pulse of malformed balance
Turn away, instead, listen to the sway of pampas grass
And somewhere you are urging
Further than you dare trespass
For it takes in perpetual night
The eyes of a bird to spy
A way out without leaving
Blood in metal trap
Push fear back
She has overgrown her stay
Unhinge the cage
Be no more afraid
Of movement in darkness
Everything is possible when
You cease to hold the chain