TLDR is bogus / we should read, we should care and take the time

TLDR is now in the dictionary (which I think is pathetic). Unfortunately this post is going to be too long and you don’t have time to read it fair enough but I’m writing it anyway because I have to.
Today I found out a very lovely girl I recently met (nothing is random) has Gastroparesis. It really affected me. See I had put all the awful horror of last year and the early part of this year into a box and avoided it. That’s what you do when you feel traumatized and are just trying to get your life back. How lucky am I to even have that opportunity?
Seeing those who continue to be sick, year in year out, through no fault of their own, makes you so grateful for any renewed health. After getting suddenly and violently ill last year in March with a suspected Noro virus, I got better quickly but remembered the awful feeling of unending nausea. I had two more brief bouts in May and June the last one sent me to the ER for the first time in my life because I had what felt like heart palpitations. Then in August of last year I got violently ill out of the blue, half way through the day, and didn’t get better for nearly a year. One of the hardest parts is how badly let down you can be, by people you thought cared about you, but on the upside, you also find out who really loves you and who doesn’t and that can be powerful and freeing.
I had to quit work for the first time in my adult life, I went into massive medical debt and I was suicidal for the first time in my life. I’m not saying this to make anyone feel sorry for me,I feel lucky. I’m saying this because I didn’t know ANY of the stuff surrounding this before, I was taking my health for granted, I thought being healthy living meant I would avoid bad things, it doesn’t always work like that.
It is thought Gastroparesis and other similar extreme illnesses are primarily caused by either Diabetes, complete breakdown of your autoimmune system, physical causes like gastric-bypass surgery or something you are born with, but most commonly is considered to have NO CAUSE. However if you do some research it becomes clear that VIRUSES cause the latter onset. Why women get it 9/1 over men and why pre-menopausal young, fit, healthy women get it, is also unknown, although studies show having a full Hysterectomy can reverse it so it clearly has a link with ESTROGEN.
I was told after being so violently ill for months without ANY cause found that I must have Gastroparesis. Gastroparesis is actually very rare but has become a catch-all umbrella term for anything the medical industry doesn’t understand. Supposedly the ‘gold standard’ test for this is the gastric emptying test but I found it is very unreliable and can vary from day-to-day. I was put on REMERON which is supposed to help a bit, if anything it made me worse. Fortunately for me, the city where I was at that time living in, San Antonio has one of the best Gastric Research Centers in the US I was able to see them and what I was told was life-changing.
My doctor told me I definitely did NOT have Gastroparesis and that in his experience 8/10 people diagnosed with non-diabetic Gastroparesis don’t have it. I had an EGG which showed my stomach was literally flipping and lurching and not emptying fully because it was ‘dumping’ too fast – this is called Gastric arrhythmia and is almost the opposite of Gastroparesis. I was horrified that they could have got it so wrong.
I was put on a very low dose of a medication that slows your stomach down. I’d lost so much weight it was dangerous, I couldn’t eat, I was throwing up all the time, I had constant diarrhea (which interestingly most Gastroparesis patients don’t have but they completely ignored how illogical it was to have constant diarreah despite this being almost the opposite of what you’d think of when you imagine a ‘frozen’ or non-working stomach which is the definition of Gastroparesis). The medication changed my life.
I had been suicidal for the first time ever because I decided if this didn’t get better I would not want to live. It was too awful. I didn’t have any family support, I felt so alone day in day out, that’s the worst part about something like this. That’s why my heart bleeds for those who are going through it. I had so much medical debt and couldn’t work and was nauseous (really, really severely not a little bit) 24/7 it ruined my life. The medication changed everything I’m still sick but I can finally work again, I can eat normally although my appetite never came back and I have to force myself which sucks. I have put on more weight than what I weighed before I got sick (as a precaution) and I am on the road to recovery. BUT I keep thinking of those who are still going through this.
I feel finding out today this lovely friend has what they thought I had, not only means I must do more to help others, because I KNOW how they feel, and what they suffer, but because we need to find out why this disease and others like it, are happening so often now when they used to be super-rare. It isn’t because people aren’t eating organic, most of the people I know with these things did eat well. Many of the doctors dismissed the link to Epstein Barr Virus and it was my PCP who finally decided to test me. My results showed I had EXTREMELY high titers of EBV in my blood. I worked out after contracting the Noro Virus last March I must also have either had a reactivation of EBV from childhood (90 percent of us get it as children or young adults) or I had never had it and got it for the first time.
Either way I realized EBV TRIGGERS Gastroparesis and Gastric arrhythmia. Somehow the autoimmune aspect of all Herpes Family viruses (like Shingles too) trigger various illnesses. The most common you think of with EBV are ME, Chronic Fatigue, MS, Fibromyalgia, Stomach Cancer. But more and more doctors are seeing stomach issues like Gastric Arrythmia and Gastroparesis. The medical industry says Gastroparesis is incurable. I don’t believe it is. I have read that if you can get your EBV down you can get over Gastroparesis. Many times if this is the cause then beating the virus beats the symptoms.
The only current treatment for EBV is high dose Vitamin C. I could never handle the acidity of Vitamin C. I found that Dr. Mercola made a Lypoic version that doesn’t hurt your stomach and I began to take 4000mg daily. Ideally if you can then IV Vit C works even faster and better. Once the EBV is reduced in your body the symptoms of the Gastroparesis may abate. The information online is awful and inaccurate, it basically says you will have it for life, but I have known people who overcame it, through diet modification, managing stress (which can exacerbate any serious illness) , adequate rest and treating the CAUSE which doctors never talk about because they want to treat the symptoms.
During this time many things changed in my life, at first I thought those changes were bad but I have come to see sometimes you have to force yourself to change, and what you think is a bad change, actually is a blessing in disguise. This illness forced me literally to reexamine my life, I realized I needed to make changes, which included moving and living elsewhere, as well as redirecting my energies into things I’d neglected such as teaching dance again and not giving up on my writing. I had let the awful experience dampen my hope and the truth is, when you survive something that awful it gives you a chance to find your joy again which I have in so many ways. I’m still on the road to recovery, I still have pretty bad days, but I am mindful of how far I have come and that along with support from loved ones makes all the difference.
If anyone you know is having severe stomach issues and they need help please give them my details because I want to help people. So often people are isolated and uncared about when they are sick. I have known many who have chronic illnesses and they are neglected by their families and invisible in our society. I felt totally alone when I was at my sickest it was the worst feeling in the world, which happens to most who experience long-term illness. The hardest part being since serotonin and other brain chemicals are actually made in the stomach, when you have severe stomach problems you get extremely down and anxious. On top of that Gastric arrhythmia produces a physical anxiety that had me crawling out of my skin, something I never had before.
I am truly blessed for having a chance to recover, but I believe in paying forward and I also believe if any of you know someone suffering, some of this information can help that person. The doctor I saw was in San Antonio, Texas and he was really, really good and I’d even say flying there to see him would be worthwhile, he is the clinical director of the National Gastroenterology Research Center in America.
If it wasn’t for him, those who love me and doing research I KNOW I would have either killed myself or spent the rest of my life suffering. I want to help anyone else get as well as they possibly can. I truly believe viruses are the cause of most things (cancer, etc) and we can fight them. You are NOT alone. Pass this on please to anyone you know who may be suffering. Thank you for reading if you did. We need to bring awareness to rare diseases like this that are growing in number and striking healthy young people in their prime. Never give up.
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In her cull

Before

Who knew how to die?

That it wouldn’t be instantaneous

As children imagine

A sudden pain, then unconsciousness

Who knew?

Death could go on years

Building and slowing like cold sea water

Burning firework left to fizzle alone in inky sky

That it would wind and unwind, a mad clock void of correct motion

Who knew?

It could take the very young, wrap them in wool, to cast down wet hill

The jarring and bumping eventual colission held at bay

Till forgotten

That it could take you

Suspend you from me and all familiar things

Where the recognition in your once clear and beautiful eyes

Became muddied and clouded with quiet violence

Your touch so soft, stolen and replaced with flinty brush off

Who knew

The courage of fighters

Seathing against their sentence and eventual

Chop chop of parts, scars and marred

Skin once free of blade

A scratch board of operation knives

She reached me

As I sat in my safe world

Pulled me through

I smelt anticeptic

Read her clever whirring mind

Far too smart for this dull world

How can such people die?

She laughs and says

At least I’ll go young and whilst I have my looks

So long as you don’t show the undertaker my scars

They remind me of barbed wire and grey hair and the lines you cut in snow

When skiing downhill

Her lips are red, she says

I used to ride horses and can speak five languages

I say

I wish you would stay

I could read you eternally

It’s the macabre and giggling nervousness you feel

Around dying

It brings out the worst or the best of us

I wanted to bolt

Race down the road

But I remain and listen

To the gurgle of her catheter

And saw the bruised clouds grow

As rain came like tears behind pitched fingers

Her humor never left

She knew more than all of us

What a terrible, terrible waste

She said; I can make an authentic French 75

I wanted to swap places, I am not so rarefied

But I am a coward

Before the machinations of surgeons

What devour they do, to our poor skin

Does it really prevent anything?

She asked, laughing at the cat

Who is also old and infirm before his time

Still batting the window when birds come to peck

At crumbs of comfort because it’s those little things

She says, keep you going

Like my favorite soup, a funny film, the sun coming over horizon

Reminding me I can still

Breathe

I learn to appreciate life

From her dying

The morsel of me

Though of language I only know two and

Cannot spell in either

It seems

Life is savage in her cull

The bright and wonderful snatched

Who among us had an idea of

How to die?

Then she laughs

Her teeth still white, her skin waxy and hot

And says, oh dear you!

Who among us

Knew truly

How

To live?

Ring

Your friendship is

A ring on both our fingers

We can bury it for years

It won’t tarnish

You crossed over to my world

And climbing through my window

You left muddy footprints spoiling the plain carpet forever

When I go to look for you

I hear your rustling words like music

Taste feelings like rain on my tongue

You made a fetish of me and wear it around your neck

I keep your calipso dance beneath my iron bed

For when I am alone

You are there

Velvet pocketed and never faltering

My love is

A brand I welcome

As we cannot exchange skins

We can remove our fear

Let it hang neglected on a clothes peg

Whilst we kick off our shoes

Feel the vibration of knowing

In each other is the river

Reflecting on shining surface

Deeply felt things, resting below.

Balm

Just when you constructed your best notion of life yet

little occurences surprise, like rain on your neck

she is a woman of verdant verbena vitality

she lives in the tropics with the song of Finland

angels arrive, winging oceans

her voice wrapped in this time and others

lends a balm, sincere and lasting

like a fairy touching glass

turns dream to day

(For Raili. đź’“ ILU.)

Rune

They ran through markets

elms strung with sari’s

bedecked with jewels and

girls kenning their heads

babes at their breast

growing crowns of red and indigo

she pressed into my palm

the spell of her rune

smelling of Finnish water stone

rubbed over and over beneath time

leaves still containing their flung pigment

where slippered feet ran and picked them

casting their glass throng to glory

she has the shiny hair of a child and

cheeks full for her pressed size

she who is gone and now returned

talking in other languages with Irish accent

she who manifests and disappears and is reborn

doesn’t look large enough to give birth

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

we were

separated by water and fear and longing

broken in sea, put back together by current

I was always swimming in her direction and the

light tread of her spring

she is a carnival of paper-cut outs

wearing scarlet hose and rings on her toes

yet upward / yet down in earth where

roots inform her choices as well as ancestor

she is of me and I

am stranger and intimate

familiarity is a rubbed sleeve on silver

her thin knees beneath duvet

twitching dreams caught in muslin

tents in high wind holding their claim

sheared gravity, she is lifted from her sail

and through the tarot of her eyes

I see each snapshot and Rorschach blot

when they told us friendship will expire

they did not know

the language of ink and how

it leaves itself

swirling for paper

on which to draw

us

Stranger

Stranger

Has eight letters, two vowels, six consonants

Can be chopped to negative connotation, or extended to romantic suggestion

Strange people can find each other and feel …

Less estranged

Strangeness can become, familiar

Like the day before a storm brings the brightest day

There are angels walking among us

They may have sagging skin and loose jowels

Dirty fingernails and missing teeth

But their smile is a beacon, guiding lost ships to harbor

Only today I met one as I held the post office door open

She said “this will be your year” and her warmth was a well tended fire in my heart

We marry strangers who have become loved ones

Strange is stronger than blood

You have never been a stranger to me, the day I met you I forsaw

Us walking beneath wet trees, the deer, sillouetted between bare branches

Our wet gloves smashed together

Holding tighter

Than the fierce grip of Winter

Six Months

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.