Category: #bias
I AM A TOTEM OF MY OWN BRANDING
I’ve been told I’m a chronic pain in the ass
after all, it’s easy to destroy a child in an adult’s body
with past-tense words
and now in the time I’m meant to be at my strongest
chronic has visited me and stayed a long while
on a good day I think; This will not be forever
but temporary has always been a long way off
the doctors love to tell us; It’s incurable, get used to
living like this, hostage to something unknown and strange
as if that’s a normal thing to do
but if enough of us live with chronic illness, it will become normal
and that is not a good thing.
Before this …
I took chances, because you think
I’m invulnerable, sometimes I can fly
health, you take for granted
though I truly convinced myself, I had checked the boxes
right weight, exercise, organic, vegetables, no pre-made meals
(well, this is what I told my doctor, sometimes a couch counts as exercise, right?)
if I ate a slice of pizza, it was a treat with friends
though I like root beer, I never drank it
maybe making up for cigarettes, smoked in my twenties
but I thought if I keep jogging, if I keep living healthily
I won’t be felled, because you ARE WHAT YOU EAT.
A few months before I got sick, I recall
feeling strong, climbing through snow drifts and laughing
boundless energy, working long hours, feeling intensely alive
people saying; you look so healthy, your skin is radiant!
Those are not things people say now, unless
I apply a lot of make-up, to camouflage my fraying edges
instead it is me, who declines invitations
I am sorry I cannot go with you to eat, even though eating out
is the number one leisure activity where I live
because my stomach is ruined and I cannot digest much
I live plain and simple (and boring), like a nun and I am numbed
to the pleasures of wine and sauces and garlic, spices and oils
not recognizing my bloated mid section in the mirror
from the girl who once was told
she had an hour-glass figure, with a wasp waist
could run for buses and catch them in three-inch heals.
I know everyone has their burden
but when you get sick and it doesn’t go away
life becomes a series of scolds and let downs
you find out who really loves you and who harbored an anger
used the opportunity of your downfall, to insert a knife
it is the cowards way of course, but freedom of sorts
for none of us need, that kind of negativity in our lives
there is a blessing in disguise, when you find your tribe
the people who care and know the real you
not wanting to tear you apart, because it’s easy to kick you when you’re down.
But blessings do not salvage, the hours you spend sickening
remembering how you were rarely felled in past years
strong of body, sound of mind, juicing and walking ten miles
everything is turned upside down, inside out when you find
a burnt fuse, at the end of your outstretched arm.
There is no cure, there is no future
when you live, in a jar for the jarring
for a long while, I blamed myself
maybe in part, because someone I trusted told me;
“It is your fault, you must have somehow caused it”
easy to throw stones, at glass houses
I was a glass house, with many windows
break one and I cannot repair it
the wind will come in and make of my space
chaos
the sun will come in and make of my peace
madness.
Those things that brought me joy, were gone
instead, the regiment of illness strode in and stood firm
you cannot feel passion, when you are sick
ageing in hours, rather than decades, trying to stay above water
it is hard to feel hope
you rely upon the kindness of others
which is hard to do, if you are not used to it
and when they lift you to the light, you promise
if I can recover, I will try ever so hard to never be ungrateful
but with every mercy, is a dark day in hell
those days take it all out of you, like a scourge
the sickening can age you, more than a nightmare
one minute you recognize yourself, the next you are unknown
vulnerability, of not being able to take care of yourself
the expense and fear
your world crumbling around you.
These are things you get used to and when you have fallen
to the bottom and can no longer get up
that is where the truth lies
that is where you can find
your true self and the end of fear.
They tried to tell you that you were insane
making it up, all in your head, something’s wrong with that
crazy lady who pounds her fluttering chest in vain
tries to catch the eyes of doctors, with beseeching side-glance
SEE ME! HEAL ME! SAVE ME! WHAT IS WRONG?
WHAT HAS HAPPENED TO ME? WHY DID I WAKE UP ONE DAY
SICK AND IT NEVER WENT AWAY?
And yes ! Something was wrong with me and still is
not my doing, not my causing, not my dreaming
despite you saying; You bothered us, when you called and were upset
no mercy, no mercy, no mercy, that is not love.
Helped me let go. Don’t hold on to negativity.
Oh doctor, get it outt!
and if you can’t, then give me the key, the saw, the pick
so I may survive myself and somehow continue on.
Am I to label myself chronically ill, or in recovery?
Surviving or dying or all of the above?
how do you define what doesn’t go and doesn’t kill?
Spending all your money on alternative treatments that
don’t even know what they pretend to cure
how do you describe one good day, followed by one in hell?
others won’t understand, because they are well
what I would give to return, to that safe water place
but even if I did, I would not be the same
you live years with a loaded gun to your head, everything changes.
I am not me anymore
I cannot see out of my left eye
I cannot lift heavy things, with my weak foreign arms
I can walk ten miles and not break a sweat despite this and be told
by friends and foes; OH YOU DON’T LOOK SICK
I am an apparent scar of contradictions and pain
I hurt every day, my stomach feels like
something is eating me from the inside out
it convulses and retorts and shouts
“you will never win, you will bathe in pain the rest of your life”
but I will still try
because I don’t know how to give in to enemies, I cannot see
and even as I cannot eat normal food
one day I am good, the next I am dying green
even as nausea, has become my constant companion
and bottles of pills and vitamins rattle in my pit
even as I fight to be gracious in the eye of the storm
and those I thought would stand by me, try to drown me instead
I know there is still a moment
I am well enough to remember who I am
never to find that peace of mind again
but maybe recover to another state of being.
I wake in the night covered in sweat and the disinterested doctor says
“get used to not sleeping, get used to all of this, it is what you must suffer and many others do”
as if it is normal to be like this, as if it is something we should not mention
I will never think it is normal to be hijacked!
I jog into the forest, because it reminds me I am still living, my feet still work
I fight with wilted hands, when they tell me there is no hope
that I should just consign my former glories to a picture album and put
my feet up for a fifty year occupation of sofas and couches and day time oblivion
because THE POWER OF ME can overcome the power of negativity and this I believe
as I see in the mirror a girl who doubts but stares back unblinking.
I have lost my will at times
I do not write as much, I have less energy
the last time I had a romantic dinner was in a dream and I
sleep with a heating pad on my stomach every night instead of a lover
but I still pay my own way and my own bills
I have a pride in pushing back against status quo
DEFYING the prescription of HOPELESSNESS.
they tell me go on disability. Just give up
I am not going anywhere, but to the finish line
I learned
by losing everything and having nothing but
the sheer will and dim light of my existence
I can do this without those I thought I had in my corner
because I am stronger than I realized
and this grieves me, as well as reassures me
but I come from a long line of stoic, strong women
and it seems sicker than I am, that we should hate each other
because life, surely we have found out, is fragile
and love is all that makes sense
but even without love I will continue and not
let the flame go out.
Sometimes I ask myself why?
why not just give in? Take the knife, swallow the pill
to oblivion or some non-sign-posted destination
I don’t have children to protect
it would be easy to slip out of this world and its sword edge of pain
but somehow I feel I should protect myself
maybe because others did not
maybe because you defend yourself in the end
when everything else is fallen and you are still
somehow, standing.
I am weak and tired and prematurely aged into
a hunched over version of myself
hair greying with shock, skin is sloughing off and my
body is tied to the rhythm of a sickness that purges and gluts
I was told this kind of disorder was permanent
but nothing I have found, is ever guaranteed
so I have chosen to ignore this and believe
we can all fight and overcome
anything
even a death sentence
even betrayal
even silence
and when we know this
when we are strong for our weakness
realize our tears are just water and salt
burning the frustration of our visiting menace
then, we know nothing can hurt us, more than it already has
and we are free to dream
of a future without so much pain
where death stands to the side and lets us regain
some of our former dignity
for there is nothing dignified in sickness
and you don’t know me when you said I was glamorous
that is the last thing I am
I am beautiful for my courage
beautiful for my fear
beautiful for my survival
beautiful for my defeat
beautiful for my mercy of those who have no mercy for me.
And life is a wax and a wane
life is a torture and a friend
I am the totem of my own branding
I may live in a time where nobody else of my kith and kin remain
and once that would have filled me with pain
now I know you cannot rely upon
labels of safety
it is only by looking into the hearts of those
who stayed by your side when the storm hit
even if it is one, even if it is naught
you remain behind
the tempest cannot roar forever
eventually even agony ceases.
I wish now, to be everything you were not
to love others unconditionally
care for those who are in need
be the change I want to see
I want to find myself
at the end of all of this
I want to tell you, sickness
you do not win
you are just a miasma
I am a spirit with a soul
I will endure you
the me, of me, will remain
long after, to remember her worth.
Before this all began and through it, learned
only the fierce remain
only those willing to FEEL
and not those who run from feeling
with the ease of the damned.
The affiliate of memory
Die is cast
thrown and tumbled
woman is born a girl
girl is born a woman
when she is young, learning to tie bows in sensible brown shoes
spit and shine, tighten pigtail, don’t get your bobby socks dirty
what does she know of her future?
when then, what hour marks, her turning, her awareness?
the tempora fragility of her succulent heart
will she be like her grandmother, a blubbering mess?
able to condone slithered evil in the hands of her husband?
look the other way, for her choices are meager
will she be like her mother, a loyal lover?
seeking a man willing to hold her closer to the sun
melt Icarus, melt, till you can stand the radiance no longer
but what of your child? The one you think is poison and deadly nightshade
what will she be like? In that wicked knowing?
when after-birth is dried and shell chewed to starlight
and she stands tall and unversed like a question mark
when she wants to scream out;
whydontyoufeellikeido?
whydontyouwanttoscreamwheneveryoneelseislaughing?
she’s the burnt slice of toast grown cold on countertop
everyone else is easy in the sun like white wheat and blackcurrant
they shine in their shingled merge
children thread their way through oboe chair-backs like grass snakes
the meadow flowers droop in her sweaty palm
she’d gift her indigo heart if it were taken or sensical
learning many years ago
don’t lend, what you can’t live without
she has enough air to fake it for fifteen minutes, then she’s out
caught in the idling headlamps of smoky cars
no destination
just drive
far
to escape those pitch eyes, drained of regard
the ease with which you are
the ease with which you are
in the loosening of your need
an affiliate of memory
put in glass jars along with sugar
watching you lean now, so evenly
toward tomorrow’s sun
How many women does it take?
It was raining the day the movers truck pulled up
piling furniture into the back, exposed to wet streets
everything dirty and unfamiliar
when you take your safety out of its box
when you unlatch your secrets
and expose the insides of a locket
sticky mouths seek to further that exposure
until nothing of your peace remains
but the belly of your secrets on display
as if you were sitting in class without underwear
as if the abuse etched in your soul were a t-shirt
as if his fingers weren’t in the dark but had been
dipped in luminescent paint and everywhere they went
left their grimy imprint / yet you think
this horror may have been the very best thing
as wretched as exposure may taste
at least it wouldn’t be a case of disbelief
how many women does it take?
for one person to not hesitate
how many must say;
he did this / that happened / we are not okay
because of this / why do I have to prove / with gore
and soiled soul / the truth / why isn’t it sufficient that I say
why why why
did he lay a hand on me?
how many women does it take?
a juror in the Bill Cosby case disclosed the reason for his guilty verdict;
I believed he was guilty because he said he had drugged girls
hearing it from the horses mouth got my vote
are we bidding on a horse? Did you check the inside of his mouth?
what of the SIXTY women who spoke?
their voices do not warrant proof?
were people just speaking words?
to deaf sign posts stating;
move on / get over it / don’t make a fuss / why should we believe you?
one person has lied before / you must be lying / that’s our automatic default
what hope then
for one girl?
one single soul
violated in the dark
of a house when all is moved out
and she is left inside a shell, within a shell
the echoes of trucks taking memories
somewhere else
how many women does it take?
to be heard.
Eve’s curse
The disadvantage of girls
Turns good against itself
Savagery emerges
Staking futile claim, deadly taint
Holding emotions tightly
Then the careless boy disguards
A phallic knife wound
Oh God she hurts
Turns into bitterness.
When she has a daughter
She warns
Hate your sex
Poison relationships with same gender
Don’t trust other women
And in the bleeding wind
Truth is lost
And Adam laughs
At Eve’s curse
Who shall love?
If you are not a beautiful creature
Is there love for you?
When the world appears bewitched by youth and eternal moment’s boiled to infuse
Who shall love?
Who shall love?
The imperfect and technically “past it”
When beautiful felt like;
The sound of heals clicking on marble
Then slippers
Then bare feet
Then silence
No attention for a certain shape, age, gaze
Consolation crows, grow your mind
Crack jokes
Have a sense of humor
Laugh at yourself.
Long before, boys fell in love with me first;
Because of an hourglass
A firmness
A tightness
A willingness
The measure of hips
And then later, aserbic wit
I say ignore the rules
Climb trees at sixty, chomping on cigar
Wear polkadots, rolling dice on roof tops
Make love in bramble hedges and countertops
We talk of politics and deep sea diving, the need for conscience, passion and chocolate biscuits
You didn’t need a perfect pair of legs or a tiny waist
Eventually you wanted a woman of four seasons
Who couldn’t hold her alcohol anymore and streaked across the lawn
A girl of seventy and four, mayflies buzzing in our ears
Who still beat you at arm wrestling and sang like an angel with grey hair
Opening her robe to your eager devour
For once upon, you were a youthful coward, chasing empty smiles
And now you lay in a woman’s arms marveling at her lines
The black and blue, and those she fought hard for, birthing children
Crossing her face like stars
More beautiful for their dance
On skin long past its prime and so fine
For a constellation is music over time
Then and only then, love breathes eternal
S.O.S.
I 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.
The preserve of her emotions
Get up.
When you were ten, your body was a springboard
You bent in the wind, dashing forward.
Get up.
When did you start to believe otherwise?
With the coming of stiff mornings and anxiety in your belly?
As life crept nearer to unknown trials?
When did you give up believing?
You could again, hold the Fates cupped in your hand
And blow to scatter, seed to four corners.
Get up.
The white sheet, covers a multitude of unsaid
An imprint of the living, breathing, fear of mankind.
She appears to be a well behaved woman, with hair needing to be trimmed
But like a cake of many layers, the face fit for public consumption, is just wet paint.
If it was acceptable, she’d grab the quiet man, stooping to take her vitals
And craw in his ear, the gravy of her distress.
What would she say? That has not been said before? Who would care? In an ever-ready world powered by rhetoric?
When she was eighteen, she could command attention just by crossing her legs or flashing her eyes
But what a dismal game that felt, a fraud of poker and thighs.
They only paid her heed due to the bewitchment of youth and some promise it told their nether regions.
So often she’d mistaken lust and hunger for love and care
But they were no more than empty vessels, wishing to dock briefly in her harbor.
Her game, if it was one … of fishing for favor, a warm body, a pretend consolation
Left her desolate, like an addict without pipe
All her fancy, dried up and rotten in the artifice of it all.
And then she’d tripped over that invisible and superficial line
From youth, to something men did not wish to define and women morned.
She however, felt relief.
Not to be the party planner, proving her game was fitting in
It was gentler to command less and need no filling or straight flush
Though they say a woman’s worth, must be found in herself
For her sell-by-date leaves her invisible to the world.
And that was true. She did no longer
Turn heads or find men leant in, too close
Instead she was a ghost, haunting the specter of herself
Unsure why she claimed purchase on earth anymore.
It was as if the mic had been turned off
And everyone left the room
For the audition of younger models next door.
She was not a mother and could not connect
With married women who worried their husbands would stray, with downy cheeked baby sitter.
Nor was she eager to fill her face with plastic, just to feel a little of what she’d lost
(Why was it a loss?)
There seemed no path cut out for castaways of normal
No clear direction to take, on the other side of age.
Men … they remained mostly unchanged
Still harboring the illusions of youth, with rapidly balding heads and expanding guts
She felt so much … but who now wanted to hear her words?
Where was an audience for silver haired creatures of Artemis?
If she’d been an owl, she’d have screeched at night
And people would have woken and said; Goodness, that sounds like murder!
Such was her need to share
The preserve of her emotion.
So get up.
Though it has been long since you hopped on one foot
Or worn brightly colored hats, just because you could
And not, for the fondle of admirations dusty nod
But the sheer delight of being at last
A woman of substance.
TheFeatheredSleep 