park ‘n sons

shadows of the past

demons twitching twisted thoughts

internal torment and writhing

feet fighting against nothing

panic fear dread

the darkness fills up my peripheral vision

emotions boxed up

no attachment to action

no happiness

no sadness

no excitement

the only thing left is survival

trapped in trepidation

frenzied fight or flight complex

but the veil is up

hiding the rational, explainable, traceable

leaving  the mirage of a human

rigid arms

legs shaking

eyes set deep

smiling flat

childish understanding

fucked up thought patterns

seismic tremors through the shell of flesh

horror of the glances

breathing in consternation

as the dopamine deficiency dance continues

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the cold smile of dementia

words:

a collection of symbols and sounds,

seemingly benign

noninvasive

nonviolent

communication

there are times these neutral beings

creep up tap me on the shoulder

flying fist of fury in the face

surprise

mortality

fear

elation

sunsets and flowers

a bumbling mess

the laundry pile of thoughts midair

leaving me a cackling crone sprawled on  concrete

spitting teeth and blood

expelling bile bitter and yellow

between the hacking laughter of the demented

the old woman in the young body

21st century trojan horse

confusion and maze-like obstacles to conquer

before words, thoughts, names become intangible

karmic retribution for crimes unknown

undisclosed

a dark comedy written for the omnipotent forces

walking and talking in malls and dance clubs

Deities in raves and eating mdma by the handfuls

the highest quality fear molded into reality

mental monstrosity is a dirty martini of the gods

attempts at neutrality, the scientific method

lovers chanting hope

“they are not sure”

faith is the dead stink of decay engulfing the corpse

somehow comforting the most beloved and foolish

a sucker’s religion in opium dens

blind and loving it

optimism-a comfort, a nice sunshine breaking the night

the ability to see shit and call it shineolia their saving grace

it is a gift to the few lost in prayer and humanity

those dripping conviction

not accessible to the masses

to the hungry and the drowning

the sickness of my mind stole the pretty package of disillusionment

leaving stones and rotten potatoes

the coal from santa

the confusion grows daily

the memory fades and twists

lost in ever-changing loops and turns of life’s labyrinth

now a prison of trees and beautiful creatures of death

“they aren’t sure…”

“noone is certain…”

“hold onto hope…”

the new lines of empty pomposity on the inside of hallmark cards

given freely by loved ones and the compassionate stranger

those in my boat

the other passengers prepared and scared

sweaty hands choking tickets

marked for the summerland

there is a common look

the smile giving comfort and calm

but the eyes hold the ideas of pain and demonic horrors

as far as we know it’s a one way trip

a nonstop to nowhere

lucifer-cruel bringer of light- tells us to pack a toothbrush

the built in human mechanism of self preservation

the carbon-based refusal to surrender in spite of defeat

i am no different

i am no better than the beggar at the door

i will scavenge for alternatives

drinking elixirs and popping pills

new this and that and medical studies of possibilities

i will sign papers until deemed unable to do so

then they will sign the papers for me

anything to hold on just one more day

to laugh one more time

today almost sane

rational

in my pjs of pretense

i hold the hammer of bravery and strength unwavering

climbing into the herculean ego and recklessness

facing the world like a madman on meth

but i have yet to forget to wear clothes

i still have time

access

a respite from madness

one day that will be a dream

a balloon released

all of the hopes and the prayers, bargains and promises

soon there will not be enough

silk flowers and rabbits

to pull off the party trick buying time

everything looks different when you live life reversed

playing back blocks memories in sensory overload

when the past will be gone and life will be forgotten

a madness of lonely lunacy

brain shrinking and shaking

all that is left is a shell

the creature inside long gone

light and shadows etched on kodak paper

the dancing eyes and smiles of what once was

neurologist appointment

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amy and i went to the neurologist this morning for my emg, a nerve conduction study where you get leads taped to you in different spots then shocked the second part of the test involves leads, a needle (that has shrunk quite a bit in size since my first one) and flexing of different muscles, not really a fun howdoyoudo in the morning, but at least it is done and it gave me an opportunity to talk to my neurologist who i just adore, not just because he might be the most compassionate dr i have ever met but also bc he is smart and gives a shit!  so now all of my test results are in, at least for now.  my blood work that he ran showed no issues, and the only problem any of the blood work showed was a high activity of antibodies for epstien barre (mononeucleosis) that has been elevated since august.  my eeg was totally normal meaning there is no seizure activity going on.  the mri of my brain showed nothing structurally wrong in the brain itself, just a messed up spine and a constant infection in my sinus cavities-no lesions, no tumors, but there is a brain there, i have pictures if there are still some of you out there doubting this!  the emg showed no decline over the last year in nerve conduction, which again is a good thing!  having negative test results is a double edged sword!  while you don’t want to have anything you also want an answer, so negative test results leave the questions why and what is going on?

i told my neurologist about the last appointment i had w my gp, and that he is so hyperfocused on the speech issue he is not dealing w some pretty serious issues that need to be addressed-my gi system slowing down so much, my blood pressure rising and falling, infections that are leaving deep black-purple spots on my legs, infections in my eyes, worsening psoriasis, constant fevers, vomiting and a few other issues that seriously need to be taken care of.  so my neurologist asked me what my gp said about my stuttering and i told him that he looked things up on wikipedia in front of me, he has no ideas and tried to say it was psychological aphasia.  i do not have aphasia, i do have dysarthia.  aphasia patients have an overall decline in communication both receptive and expressive.  they generally lose ground in all areas of communication not just speaking, it effects their writing and sign and signal language too.  dysarthia is an issue w the muscles and signals to the mouth and tongue, making it hard to speak.  i can write, obviously, quite well, and for the most part i can understand everything that is said to me as long as it is said loud enough, there isn’t alot of background noise and if the person talking is not talking at about 110 words per minute, also the more tired i am the worse i am at paying attention to what i am hearing. my receptive speech hasn’t changed that much, these have always been issues for me.  so, my neurologist is sending me to speech therapy.  he said we are still going to try to find out the why but in the meantime i need to be able to talk.  he knows that right before i got sick this last time, i was working on oral story telling and that i do alot of social work in the community.  not being able to speak is embarrassing and it makes it hard to accomplish those things.  so despite having a name for my disorder, i need to get back on track as much as possible.  he also said he was going to call my gp and talk to him personally, not just fax reports back and forth.  that was pretty cool.

so i was a bit disheartened i don’t have a name for my illness yet.  no name leaves my brain open to fear.  several times an hour i find myself chewing my stubby fingers thinking the words “parkinsons” repeatedly in the back of my thoughts.  

the best part was after my test, amy and i were walking out into the parking lot, and my neurologist was outside putting rock salt down on the ice, which in and of itself tells me what i cool cat he is!  but due to my unsteady gait, he rushed to my side and lifted my arm and wrapped his around it.  he said “if you go down i am going down with you!”  this man, who is at least 60 with a voice like ricky ricardo and silver hair, in his pretty fancy turtle neck sweater helped me to the van.  i almost wanted to cry!  

 

stop me if you’ve heard this one before

i am not really sure if i have ever gotten really into my neurological past.  i may have but apparently i need to work it out some more. it ties in alot to my current state which i will get into later in this post….

in late april of 2012 my dr came in and told me that i needed to quit smoking!  this was for reals and you need to quit now!  he prescribed me chantix, despite knowing that i suffer from depression and anxiety.  it took 8 days until i could feel i was not thinking or acting normal, so i stopped the chantix, but i believe those 8 days did something huge to my neuroprocessing.  in may i started getting what i can only describe as restless leg syndrome.  it was slightly uncomfortable but mostly annoying.  i brought this up to the dr and he put me on a medicine for the restless leg.  this was in june.  we went on a cross country drive in july and by the end of july i had dancing feet, no muscle tone in my face, my cognition was very low: amy would say something to me and i would hear the words but i didn’t know what they were, i had rigidity in my arms and legs, and tremors.  we went to the family dr and he said it’s a psych issue, we went to the psych and he said it’s a physical issue, but he did take me off of abilify (an antipsychotic we aren’t sure why i was on that inhibits the release of dopamine) and put me on a stronger one called latuda.  my symptoms progressed rapidly!  in october my gp sent me to the neurologist in november.  he was certain that this was psuedo-parkinsons caused by the latuda and abilify.  i had stopped the latuda in late sept, so i had my doubts.  my neurologist put me on a parkinsons medicine called amantidine, and within two weeks i was doing so much better.  i had gone from 0 to 80 in months and i was pretty close to body systems shutting down.   by december i was back to normal.

so i was bunbling through my life, as normal, never forgetting how lucky i was to be able to do the things i could do.  in july i hit a brick wall face first!  everything was good then everything was not good.  nothing had changed, no med changes, no lifestyle changes, nothing.  and now we are back on the roller coaster of neurological issues.

this time things are different.  my brain thinks full thoughts, i have a tremendous range of emotions, i am not unattached from everything going on around me.   although there are some symptoms that are present  that were present in the psuedo parkinsons, loss of muscle tone in my face, rigidity in my limbs, weird eye movements, and a wide stance, most of my most troubling issues are relatively new.  i have had dysphasia (trouble swollowing) for at least 5 years, but it is getting worse.  i have dysarthia (inability to articulate words) that can go from speaking slowly to stuttering to incomprehensible jibberish within a couple of hours.  i never know when i am not going to be to talk until i open my mouth and try.  i have peripheral neuropathy the loss of sensation in my extremities.  last year the neuropathy was to my ankles in both legs and it has ascended half way up both legs, although the neuropathy in my hands has not gotten too much worse.  i have gi neuropathy that affects my digestive system.  i also am getting skin infections all the time, sometimes on my legs, alot of the time as a sty.  i tested positive for epstien barre (mononeucleosis) in august, which was pretty severe also.  i had mono before 15 years ago and was hospitalized for a month, so apparently it just reactivated.  i am completely and totally exhausted all the time.  attempting to talk is probably the hardest thing on me.  it feels as though i have weights on my body parts, holding me down.  the vertigo is wicked leaving me feeling like i just stepped off of a whirly twirly roller coaster.  i pass out, i fall down, and i crash out of the blue.

the neurologist was unable to give me a name for this disorder.  we have many more tests to run, but he does assure me i am not insane and i am not making this up, which is the feeling i have gotten from my gp.  i have doubted myself bc the drs just act like this is all impossible and it doesn’t make any sense.  so this morning i had 12 viles of blood drawn for all kinds of tests.  this thurs i have an eeg, mri of my brain, xray of my abdomen, an appointment w my gp, and then i have to go with our youngest son for an interview into a college prep program.  the neurologist put me back on the amantidine bc it worked so well last time.  i also have an emg, a nerve conduction test, scheduled for a week from today.

i am going between being absolutely ok and happy and hopeful to just full blown panic attacks bc of the impending doom.  i am not sure that i will be able to really deal with it until i know for sure what the diagnosis is and the prognosis.  my mind can build things up and tear things down.  i am scared.  not being in control of my body is the biggest fear i have ever had.  and after the psuedo parkinsons, that fear is completely based in a reality not many ppl are able to understand.  the idea that this is a lifelong nervous system issue, especially the idea that it is degenerative getting worse over time, is gut wrenching!

so i do think i am mourning, although i am not sure what for.  i do know i will never ever go back to the person i was before all of this happened to me.  i have seen my friends and family reach down and find the strength to stand beside me despite me not being in control.  i look my fear in the face everyday.  even if all of my symptoms disappear tomorrow, i am forever changed.

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.