my body is my bondage

inflammation and dementia

what a lovely party

rolling hills of myofascial tissue

blue streams exquisite and romantic

gondolas carrying red corpuscles

a relaxing contradiction

under it all

beneath the surface

a war is raging

me versus me

where disease runs amuck

mamertine prison

short-term limitation of supply and effort

where traitors are stored

coded messages sent in heart beats

it is international mayhem

fires and nuclear waste

napalm factories in nooks and nodes

leaders with plastic surgery smiles

a small reassurance

conference calls

the ‘yes crowd’ gathered and huddled

drafting demands in guise of compromise

george w bushy 2 is runnin the show

commander and chief of immunology

“WE WILL NOT NEGOTIATE WITH TERRORISTS!”

unless…well, some terrorists…depends really….look at mars

leukocytes get drunk and confused

friendly fire rape and pillage

the hell out of their own team

giant groups of terrorist

and could be terrorist

who were never terrorist to begin with

i am a being destroyed by myself

pain agony suffering torment affliction

unimaginable and almost surreal

there is no mercy or relief

there is no sacred place

no sanctuary

those who promised comradery

have become neutral

avoiding eye contact knowing it can’t be too long

but the joyful must not know

all the floral beauty and sanity must remain

there is only one option

paint loveliness and ignore it all

dr freakenstein and the unicorn

many days going anywhere creates an uncomfortable twist of the gut

it is impossible not to notice the strange walk and broken frustrated talk

muscles stiff, jerks and twitches, blue eyes shaking and searching

choking on food, unable to force it down before drawing a breath

violent vomiting a way to mark territory as mine and mine alone

the looks of strangers with the sad eyes and fake smiles cuts deep

the friends who disappear because it’s just too hard to hang out

and the friends who hang out because that is what is expected

sleep an evasive foe hiding in shadows just out of reach

tests and specialists and specialist tests all labeled in code

eeg, ekg, ent, mri, cbc, a1c, egd-all sounding like titles of dukes

pfizer’s making a pretty penny off of my unfortunate health

doctors who are more concerned with pawning off bullshit

an underground network of predatory physicians selling elixirs

you should at least try the magic tonic,  do you like being fat?

the care and compassion of the doctor with the twinkly eyes died

leaving behind capitalist pigs licking blood from the mighty dollar

there is no team of well trained medical staff working together

orders contradicting orders, denial letters and forgotten referrals

pills that cancel pills that require a new pill to pick up the slack

and all the while, during this behind the scenes insanity is a woman

a woman with a family, who loves to cook, slowly painfully slipping away

wikipedia is not going to help in a differential diagnosis of a neurological issue

charts full of lies and deceit, pages of contradictions and fairy tales

taking the easy way out, never taking a moment to listen and understand

you go into the extravagant bullshit store and purchase wood by sergio

you lay next to your wife and hug your kids and use words without hesitation

i struggle to remember what happened yesterday, walking in confusion and fear

i am a story teller unable to speak clearly, my children carry me to my room

my house whispers echos of fears unspoken by the sentient beings jaw locked

in the corner behind the cobweb is the last ounce of hope we have left

 

maybe they are right, it maybe insanity

‘”you need to come in to see the doctor

make sure you are 15 minutes early

or we will cancel the appointment”

water from the shower

the warm drops

in quick succession

feeling that in each bubble

a knife sent piercing flesh

stabbing my body everywhere

blood replaced by water

running rivers down my body

the warm steam causes

the expulsion of bile

when all that was gone

swirling down holes

making me dizzy,whirling

like a drunkard at closing time

the proper means of transportation

was decided,  taking her lunch

i can’t do this by myself

the comfort of her hand in mine

her smile relaxing me

but still shake with fear

dread and horror are not driving

the the black coach of torrment

it’s been carefully constructed

using only the best materials

muteness, dismissal, narcissism

held together by panic nails

no answers for you, you are healthy

thank you and goodbye

the tears pool behind my lids

just another wasted trip

just another slap to the face of ego

just another punch in the gut

sorry we don’t know what it is

i have major issues with western medicine.  it started 18 years ago when i had my oldest son, and has morphed into different styles and colors but it is always disgust and disdain that i hold for the healthcare system.  sometimes it is hard to separate hatred for the system from hatred for the healthcare professional.  many times these emotions overlap and feed into each other.  drs are taught to look at us in parts, systems, as though we are not holistic beings we are pieces that work independent of each other-which is false.  we are electrical impulses and chemicals and cells and organs and systems and a person.

for the last 10 years i have been struggling with illness.  during the first 6 months, i was probed, prodded, analyzed, xrayed, and diagnosed with everything from ovarian cancer (which was not true) to being mentally insane (also not true), but after a year the drs snuggled down into the diagnosis of fibromylgia and osteoarthritis in my back.  they loved this diagnosis.  it was cozy, but it was wrong.

this last june, out of the blue, i lapsed into complete exhaustion.  i could not keep my eyes open.  i did what you are supposed to do, i went to the dr.  he just shrugged and said “i dunno what to tell you…” we asked, and yes we must ask, to have blood work done.  he tested my thyroid in the office and it turned out to be low, so he sent me to the lab to have a more comprehensive look at my actual levels-all came back normal.  “i dunno what to tell you…..” again we asked for him to run more labs.  by this point there were some obvious neurological things happening in my body-involuntary muscle spasms, a burning feeling under my skin, feeling like i did when i was 14 and would drink 3 bottles of mad dog 20/20, after i threw up but before i would pass out-that spinning, chawhawhawha, feeling, one sided tingling, falling down, lethargia, nausea,  inability to speak i full sentences.  all of these things and more but none constantly.  he ran the blood work, and i am waiting to hear from my neurologist.

the last time we went to the dr it was about 2 weeks ago.  he had my lab results back.  my partner and i sat in the room.  i was prepared to hear “i dunno what to tell you….”, that is what they all say, everytime.  she was nervous.  sometimes i think she might doubt my sanity too, but she is just too polite to say so.  the dr in his stiff lab coat came into the room.  he pulled my chart up on his handydandy computer and started reading off my results “your cbc looks good, chemistries are right, sed rate is ok, there is nothing wrong with you liver, kidneys are functioning correctly…..” i just hung my head-fuck here we are again!  great!  my partner was starting to tear up.  “o but you have mono.”

i explained to the dr that i had been diagnosed with mono about 13 years ago.  it was so bad that they had me in the hospital and i continued to show up negative for it, so they thought i had lymphoma.  i went through a round of chemo before the test came back positive.  it was a pretty severe case.

mono is caused by a virus called epstien barre,  and your body creates antibodies to fight this virus.  in some ppl, they never have mono, but in others they can have chronic mono.  the mono would not be causing the neurological problems.  however, epstien barre can cause other issues.  one of the issues is a syndrome called guillian barre syndrome and it is an autoimmune disorder that eats away at the mylan sheath of the neurons causing many many problems.  your mylan is a fatty tissue that helps aid in the reception and transmission of neurotransmitting chemicals which travel from nerve cell to never cell telling your body what to do.  any variation in the mylan sheath, causing problems with the nerves functioning properly.

so now we have a possible answer.

it’s really an odd feeling to be excited about having a life-long neurological autoimmune disorder.  it’s not something that you want to have, but at least it’s something, and i am not insane.