too much!!!!

it all seems to just pile up until everything topples over.

i have been pretty active, keeping my mind off of all the chaos and overwhelming uncertainty of my illness.  that is kinda how i have to operate in order to just process information.  it’s always been that way…i get bad news and i have to throw myself into some project or work in order to take it in.  then, maybe, after some time i can sort it out.  when my middle son was diagnosed with autism, i went to work and worked open to close for almost a year.  when my dad died, i threw myself into planning his memorial then started a band project then let a crazy junkie hang out.  now i am steps closer to finding out what this illness is and i can’t stop writing or reading or working on the zine, shit i am even trying to start a project to help kids….

then when i least expect it, it dawns on me-“i am really fucking sick!!!!  i am really fucking sick and it is never going to be over….”  i have to fight everyday.  fight to stay at this level of sick, i have to let go of that one day dream.  this level of sick sucks!  medication boxes other people have to fill up because i can’t be trusted to take my meds the right way because my neurons are at war.  walkers, canes, wheelchairs, grab bars, handicap stalls…that is the good part.  at least those things help me do basic things without too much embarrassment.  being in public and having a total meltdown because there are too many lights and smells and noises and temperature changes, and the worst part is i know i am doing it.  i know i am reacting, but i can’t not do it no matter what.  i have to cover my ears and run…well, not run, shuffle as quickly as possible.  getting a coffee is a gamble-is there going to be too many people  who wear too much cologne, is someone’s cell phone with a horrible ringtone going to go off while the lady next to me is gabbing loudly, is someone going to cough on me…

but the worst is the holes…the holes the people around me leave.  it is unintentional.  they don’t mean it.  they just don’t care enough to learn how to not have the holes.  they don’t read to find out what this is.  they see the physical outward manifestations and they want that to not be there, but they don’t see the inside, the swollen organs, the lymph nodes, the nerve swelling, the fear because i forget how to walk or how to urinate.  it’s a non-issue the internal.  as long as they don’t see it, it doesn’t exist.  the holes.  i get so angry.  i get so hurt.  i need the support, but it is minimal.  when i try to talk about it, everyone just shuts down.  i just need some help.  i don’t know how to do this alone.  i don’t know how to see the holes.

it all seems to just pile up until everything topples over.

sometimes stopping the pain is the end of it all

i see death in your silhouette

no, death is intimate and romantic

i see void

i see vast emptiness

a life where nothing lives

no parasite will feast

fleas, lice and the like scatter

even the most basic of chemical reactions

can speak fluently in survival

and where you linger, life does not

you suck love, light and happiness

from the souls of the pure

leaving them demented, tortured

banging their heads in sanitariums

selective serotonin re-uptake inhibitors

anti-psychotics and shock therapy

when all else fails…

drilling holes in proper places and pour the ethanol

the torture you carry drenched in midnight ejaculation

self service, self rise, self satisfy, self depraved

narcissus and his pool of water-a swimming lesson

you are noxious when kind, napalm for the soul

great and mighty, papaver somniferum, the human equalizer

dripping, oozing, squirting madness onto trembling hands

but today your taste does not linger in my mouth

there is no fleeting euphoria of you swimming inside

as beautiful as you can appear, dear poppy,

your delicate petals swirling  lavenders, reds and pinks

springing from pale green pods-breath taking in every way

i now drift to sleep in the arms of true love

and i have never slept so soundly

 

 

sometimes it’s better to bring a friend

it’s become a roller coaster

my life or what is left of the my in me

a roller coaster with loop-t-loops

giant mountains to click up slowly

there was a time worlds ago

or maybe worlds times ago

the free-fall down the orgasm

leaving a shaky kneed woman

in desperate need of a cigarette

the open air cluster of railroad cars

would stop at the appropriate platform

all passengers would exit-even me

leaving trails of giggles and squeals, virgin joy

i would walk, watching the people

mommy and daddy holding toddler’s hands

those girls and boys attempting

to catch the eye and various other anatomy

some succeeding quickly, fucking in the bushes

others pinned to walls or on the merry-go-round

the smell of bacon, fried food, beer and fear

permeated everything, everyone

i walked through “the house of honesty”

where the mirrors never lie

showing the viewers only flaws

driving the sane to rubbish

because inside everyone lives a demon or two

i paid my coin to the beautiful man

climbed inside the spinning wheel of divinity

a circle of orbs made of bamboo bars

the roof an ancient leather pulled taunt

a drum beat started pulsing

the vibrations shaking primal

setting into motion

the pod, the me, the earth, the galaxy

flora and fauna, the mystic, the naysayer

the gods and goddesses, humanity

all energy, all matter fixed and condensed

shaken not stirred for a second in time

there were sights never seen by human eyes

voices singing songs from other dimensions

walking for days, months, years

elvis the exit had left the building

the sun rising and setting but never darkness

finally the roller coaster again

“o my dear friend, to stir my passion

seduce me into self seduction…

let me see the world again swirling on your rails”

climbing on the heavy bar against my pelvis

the topless tram chugged forward

and the world faded away

i was there, alone, deserted

with no control, my life void of living

i only see the world flying by

small dots of others

skittering and scattering

doing things the living do

i live away from that

despite desire and despair i ride

because what do you do

when the roller coaster

doesn’t stop for you

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

pointless test pointless drs

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i went to the dr yesterday to have a sonogram done on my carotid arteries.  the dr thinks that maybe a cause in the falling down/passing out deal.

while getting ready to go, i noticed i was hyperaggro.  i was getting more and more upset the closer we got to walking out the door.  it doesn’t take a genius to figure out why i am feeling this way-i am fed fucking up!  i am losing my faith that this is something that is going away or even something they will label.  i am exhausted w the whole process and dealing w arrogant drs and techs and nurses, undergoing constant stupid tests, being probed, prodded and examined is mindnumbing!  all the while, i am sliding into an abyss of declining physical health i am losing my grasp on my life.

 

i am an active person.  i have good friends, i cook good food, i do good stuff for the places i live.  i tell good jokes, i have a good laugh, i wear good clothes (to me), i have a good partner and a good family life.  i like to go for good walks, tell good stories, take good naps, and have a good night’s sleep.  that is the me.  that is what i do.

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now, i struggle to speak.  there are times i am trying to talk and it is literally incomprehensible.  the words formed in my brain will not come out my mouth, instead it is random grunts reminding me of someone who has had a stroke.  before this whole decline i was doing oral storytelling for kids, now i can barely have a conversation.  at the best of times i stutter immensely, repeating the same word over and over.  even having a telephone conversation is outta the question most of the time.

it is fall, and the temperature is perfect for taking a stroll down the street.  the leaves are turning and the smell that fills the air is intoxicating.  i am not walking and taking in the beauty of my favorite season.  i fall down randomly.  so if i go for a walk i must have a partner who is willing and able to carry me home.  my oldest son can do this, but how do you ask that?  it’s too much to ask for, your baby to carry you home.

even wearing clothes is iffy.  when i leave the house, i have the need to never wear the comfy jammies i run around the house in, and i must always always wear a bra.  this is torture sometimes, and enough for me to stay home so i don’t have the scratchiness of denim or the inside cluster of cotton against my skin.  every weave can be felt.  it is overwhelming to the senses.

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i go to the dr at least once a month, to the gp.  plus tests, plus specialists.  we are holding our collective family breath for the neurologist in a week.  praying silent prayers to any deity who might be listeningImage

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anyone out there-to pleas let the neurologist have some sort of direction in which to steer us!  my family is grasping to hold onto a ray of light barely visible.  my hands can’t seem to grasp it any longer, i don’t even see it.  it just feels like a burden to try somedays.

the part of me that has always fought against everything is dwindling.  old thoughts and desires seem to be creeping into the cracks in my hope.  the idea of getting some relief from life seems more and more satisfying the more i slide downhill.  my cravings for a small respite, some good opiate sleep, is becoming more pervasive and a better part of my consciousness.  i have kept it at bay, refusing to even think about it, refusing to go to the drs i know will give me a shot, steering clear of certain ppl during certain times bc i know what i will be.  a zombie nodding out who doesn’t need to eat or drink or move.  a person who can’t think a thought to completion, a person who loses her voice and desire.   but somedays those things are ripped away from me without my consent, and i am left in pain and in a sea of despair.  somedays i need a lifejacket bc my feet can no longer tread this water.  the fight is running out of me.  i am tired.  i am losing a battle in which my enemy is myself, living inside me attacking me on all fronts, systematically killing my hope and happiness, my faith my desires and my will.  it is not fair to put my loves through another 5 year oblivion, and i know that.  that thought alone has sustained my sobriety this long.  the knowledge that seeing me fail at life gives them reason to falter is all i have left.  i am no longer holding on for myself, only for the loved ones.  hopefully they are enough.  today they are enough, or at least at this moment.  i don’t want to fall again, i don’t want to show them it’s over.Image

it’s a pain day-for dr

today is one of those days i wish i could remove my skin.  clothes are so painful.  sitting down is painful.  lying down is painful.  standing up painful.  i can feel every fiber in the shirt i am wearing.  i will have to go and find another one as soon as amy wakes up.  i can’t stand this all day.  it feels like burlap but it is really a nice cotton shirt.  the weather is cooling off which means more skin to cover up with fabrics that feel like sand paper.  i used to love the fall when i could wear sweatpants or lounge pants all day, but i loathe it now.  the same clothing that used to give me so much comfort feels like it is cutting me to the bone.  i wish i could just take my skin off and hang it up somewhere, maybe in a closet.

i accidentally spilled coffee all over myself this morning.  that happens when you have weakness and trembling.  i could feel the wet spot on my shirt and shorts, but it didn’t feel wet, it just felt like cutting pain in precisely the places where my clothes were wet.  now i am in dry clothes but those spots still hurt.

i get so tired of this!  so fed up!  i wake up every hour and a half bc my body is in usch pain.  sometimes it is bad enough that i wake up screaming, sometimes i wake up and have to vomit.  but i never sleep more than an hour and a half at a time.

i am exhausted.  every step takes so much effort.  i have to decide if what i need to get up and do is worth the expense of getting up and doing it.  how does this rank in importance?  wash dishes ranks pretty low, and i won’t get up to do that but i will do it if i am already up.  someone bleeding usually is pretty high on the list of priorities and i can generally muster up the will to move for that.  using the restroom falls somewhere in between the two and i can put that off until i absolutely must get up and go.  every movement has a priority.  that is what happens when you hurt so badly.

i am in a pretty piss poor mood, and i have already been on the brink of saying just anything that crosses my mind, which is not great bc generally it is not even what i really feel, it’s just gut reaction to a situation.  and right now my gut reactions aren’t all that fab or reliable.  i am hoping that i will have enough will power not to alienate everyone in my life today.  but really who knows?  they may all get tired of my snappy retorts and decide mutiny is the best course of action and behead me in the backyard…

i wonder how long it would take then for my body to stop feeling pain

**after amy read the above she said “beheading you would take too much effort, so you are safe”  well i see i am safe from the beheading but what about poisoning?

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i have also been dropping things alot today and walking into walls.  i noticed last night that part of my right bicep was shaking and my hand was shaking.  my foot is dragging a bit today but i have not fallen today.  i think this is mostly due to my being restricted to the bed.   i am vomiting and wicked nauseous today.  the dizziness or vertigo which ever it is is extremely bad. as is my visual perception.  i have to close one eye to read.  auditory processing is mildly effected-i can hear words but it takes a few seconds to figure out what they mean and if there is alot of noise i can’t understand anything at all, it’s too overwhelming.

10-19: passed out, have no idea what happened i just lost consciousness.

10-20: got extremely dizzy, tried to answer amy’s questions but my words were not making sense.  she said i couldn’t open my eyes and i was babbling,  don’t remember just remember feeling nauseated and dizzy.

flare ups suck

there is a difference between relapse and flareups.  i was skating along in life in remission, then last june i hit a brick wall.

all of a sudden i was exhausted, so tired i would be talking and then fall asleep.  my neurological symptoms came back with a vengeance.  there are times that i feel like i am falling.  i can be walking down the hall or through the kitchen and feel as though i had just gotten off of a tilt-a-whirl, actually, the feeling is more like how i would feel when i was 13 and would drink bottles of maddog 20/20, puke then lay on the floor w life swirling around me.  there are times i become confused.  there are times that i lose sensation in half of my body and have weakness.  my involuntary systems are out of whack.  my digestive tract is barely functioning at all.  swallowing is difficult, and my respiration become irradiate.  my blood pressure is high, i am tachacardiac (fast heartbeat) and my thyroid is underactive but all of the levels appear to be fine.  i have a very small amount of good cholesterol an very high bad cholesterol, even though i am a very healthy eater.

my sensory levels are extremely low and my brain is interpreting things into pain that are not painful-cold feels like i am being cut, i can feel certain noises.  the other day i was at walmart with amy, and a man dropped a can.  a sudden loud noise can lead the neurotypical person to maybe jump, but for me it felt like i was punched, like i was physically assaulted.  it took me about 30 seconds to realize i had not been hit.  noises, like the fan in the bathroom, are unbearable.

then there is the pain.  it feels like my skin is sitting, gooey side down, and a burning hot skillet.  my muscles rope up and spasm.  i have jerks that cause me to flail.  my skin is hypersensative.  sometimes wearing certain fabrics is more than i can stand.

so this is the normal.  the everyday.  the common place.

but a flareup is the normal relapse symptoms on steroids, figuratively.  my thresholds for pain are extremely low.  the exhaustion is so bad i can barely walk to the bathroom alone bc i just can’t hold my body up.  i run fevers even though there is no present infection.  taking a shower is akin to climbing a mountain.  i can only wear certain clothes bc my skin is so sensitive other fabrics make me cry. my lymph nodes swell.  my temperament changes, i literally don’t have the energy to be patient.  sleeping for longer than a couple of hours at a time is impossible, it’s too painful and i wake up.  i have been in flare mode for over a week now.

i go and see my gp on tuesday.  that won’t accomplish much.  he has no idea what is going on.  i have been waiting to see my neurologist, who is one of my favorite drs on the planet, but it turns out that my gp’s office had made the neurologist appointment for me for the 4th of sept but they never called to tell me-thanks!  now i have another appointment for november.

hopefully, the flare will be over by then.