once upon a time

i was once a girl

never innocent, never carefree

i was once a girl

living and breathing

sometimes hoping, sometimes praying

i was once a girl

now i am a disease

to be avoided

to be locked away

to be quarantined

examined by the brilliant

the brilliant

with the letters

certifying their certainty

the brilliant

with adjectives

clarifying their clarity

to the brilliant

i am a study in oddity

i was once a girl

nervous system in tact

who loved and who desired

i was once a girl

blood carrying oxygen

dreamed of bits of peace

i was once a girl

but that girl is an apparition

of a psyche broken, forgotten, plagued

i was once a girl

who ate the pomegranate seeds

i was once a girl

never to recovery or emerge from destiny

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dying is soooooo boring

pills pills pills

glorious wondrous

dancing on the fence of healthy

concoctions and intoxicants

to delight the senses

and numb the mind

uninfect the infected

feed the malnurished

when the capsules fail

when the powders float like pollen

medicine mixed in hydrocarbons

anti-emetic

drug

suspended

in

substance

paraffin-like

texture

petroleum- waste

chemically

magically blended to perfection

formed into a bullet

to shove up the ass

of the beautiful

princess of projectile vomiting

waiting to take more

elixirs, potions, witch’s brew

liquids in glass bottles or plastic bags

the skin broken and serum infused

muscular or intravenous methods

isopropyl alcohol, syringes, catheters

leaving behind dark purple knots

on the skin for all the world to see

waiting to be violated again and again

waiting to smile and give thanks

hoping at every fountain

wishing on every star

begging and bartering when i have nothing

i can live with bruises

pain, nausea, falling, sleep deprivation

i can live knowing there will be tests

at any given time in my life

most involving orifices

shoving ribbed hoses with cameras

down my throat and up my ass

delighting in the discomfort

bombardment of bullshit terminology

in hopes to shut the stupid girl up

poorly veiled threats of mistreatment

but i am at the mercy of vultures

cretins and belly-crawlers

i don’t go down the path

the one that looks so simple

and bright and sunny

i will try to stay on this path

and heal in the future

 

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

 

health update

when i went to the neurologist the first time he gave me a drug called amantadine which is used to help ppl with parkinsons.  i took it when i had the psuedo parkinsons last year and it did wonders, and i have to say that it is working out this time too.  my dysarthia is getting so much better and i am getting the muscle tone in my face back!  these are all great signs!

i am still having a tremendous amount of pain, and it seems like every other day i am getting a new infection on my right leg that once the swelling has gone down leaves black purplish spots for months.  i am still having issues with nausea and the feeling of being drunk and the sweaty, room spinning as if i drank 4 bottles of maddog 20/20-that is the only other time i felt like this.  i am still easily exhausted and spiking fevers.  i had plenty of energy this morning, but now i am pretty unstable which leaves me down for the count and us having to reschedule dinner since i am the only one who knows how to make tamales in the house.

i was able to go and have coffee with a group of friends yesterday, and not only keep up with the conversation i was able to participate in it.  that felt wonderful!  we had a great time with loads of laughter and social political discussions.  even when i was stuttering so bad it took over a minute for me to say a 5 word sentence, my friends always listened patiently.  i know that doesn’t sound like a big deal but it really is when you are in the situation i am in.  ppl stop listening and start filling in the blanks when your speech is stuck, taking your ideas and manipulating them to fit their mentality.  

i have to admit it does scare me a bit that the parkinsons medicine is helping-not that i don’t want help, i don’t want parkinsons.  i know there is alot of things that are worse out there than having parkinsons but it is my biggest fear.  i lived a hopeless nightmare for months, deteriorating constantly.  i know what that feels like.  and while this feels much different than that for the most part…i am still afraid.

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

a whiny complaint post

so we started moving on tues, oct 1.

but before that i had an appointment w my gp-general practioner-who wants so badly for me to be insane.  it is his favorite thing to tell me, “i think alot of this is psychatric” and when we, my partner amy and i, explain to him that i am not responding irrationally to stimuli aside from it being painful in some cases, but i am not nuts, he dismisses us.  for the most part it feels like he is thinking about his response before he hears what we have to say.  i have a hard time with word recall and sometimes i get stuck on words so my speech pattern is broken.  instead of patiently waiting to let me finish the struggle to explain he cuts me off.  amy told him that i am falling down and that there are times i have spells of being incoherent.  he said that it sounds like a psychatric problem.  i think that is bullshit.  i go see the neurologist next month, so hopefully we will find some help there.

last summer my gp put me on chantix to quit smoking and i had a tremendous reaction to it.  it changed my brain chemistry radically.  i had been on a medication for quite sometime, but once i started the chantix i began having incredible reactions.  i stopped taking the chantix after 8 days.  but my reactions got worse and worse.  it ended up almost killing me.  i had medically induced parkinsons due to the medication and the radical change the chantix caused. i was releasing little to no dopamine.   i went from a fully aware and functioning woman to not having affect of emotion, no muscle tone, extremely diminished cognition, low sensory input, my arms were pulled up to my chest and i had tremors, my legs never stopped moving not even when i slept.  if you judged parkinsons on a 0-10 scale i was at an 8 in 3 months.  i was rapidly declining.  i went to my medical gp, the same one i am seeing now, and he said to talk to my psychatrist.  my psychatrist said talk to your gp.  after a couple of months of this dance, a lady i know asked what meds i was taking.  i told her and she said one of them slowed down the rate of dopamine released in the brain.  i went to my gp and psychatrist and they both said to stop taking the medication, but even after 2 months of not taking it, nothing changed, so it was time for the neurologist to intervene (and my neurologist is the nicest coolest guy in the world), he said it was parkinsons, but he had never seen parkinsons progress so rapidly.  he believed it was all a side effect of the medication that slowed the release of dopamine.  parkinsons is a neurological disorder caused by the brain’s dopamine levels becoming lower and lower until your body cannot function any longer.  for most ppl it takes 10-15 years to become severe, i went from 0-8 in 3 months.  i was dying-literally.  my gp insisted i needed psychatric help and most importantly talk therapy.  yes talk therapy to help with my psychatric problem that was really a neurological issue that was killing me.  so excuse me for not taking his almighty word on the whole deal!  especially since he will not listen to what i am saying, the words i and my partner are using.  he has his response planned and completely articulated before i am half done describing things that are happening to my body.  but despite how i can rationalize that he is not listening and has been very very wrong in the past, it is never easy having a medical professional tell you that you are delusional and insane.  it is hurtful and i can’t help but wonder if he is right, and there is some mental disorder that causes nausea, vomiting, pain, high blood pressure, weakness, one-sided numbness, confusion, inability to use verbal speech, exhaustion, positive mononucleosis, thyroid instability, visual issues, feeling as though my skin has been removed and put on a hot skillet gooey side down, passing out, falling down, vertigo, swollen lymph glands, and occasionally not being able to move my limbs.  i don’t know all mental disorders…i don’t have the dsm memorized but i have never heard of one that causes such a wide range of symptoms.

so after the dr appointment it was time to kick it in high gear and move-which sucks!  i hate moving!  but we lucked out!  our best family friends moved into a new house this summer.  it was a family home, and they were going to sale their old house.  i asked if we could rent it, and they really wanted to sell-not be responsible for it, which makes total sense to me.  but mortgage is still due and it was becoming difficult.  so they came and told us if we wanted to rent we could!  sweet deal!!!  not only is the rent cheaper, there is more space and there is a height chart where the kids grew up.  my son’s girlfriend’s name in several places on a door frame marking how tall she was on what day!  we are paying a bit extra for a “house upkeep”  fund so that our friends aren’t totally responsible financially.

so we got everything outta the old house, and everything into the new house.  i have the kitchen (my most entrigal part of the house) put together, and made baked ziti in my new stove!  the living room is put together and some of our art is up!  the bookcases are almost done-i am very particular about our books, there are some books that don’t play nice with other books.  ted and eli, our oldest son, share a room with majin buu the guinea pig.  jeff our middle son has his own room as does sam our baby!  oliva the avocado tree and mother jo and vera jo (the aloe plants) are living in our room right now.  we have 6 rose bushes, 4 lilac bushes, wisteria all over the northwest fence and honey suckle on the northeast fence!  our yard will be a fragrant wonderland come spring!  the only walls in the house that are white are the ones in the bathroom and most of that is tiled black and white.  our house is full of color and good feelings!  we have enough room to house our friends from out of town or  anyone who comes knocking on the door needing to sleep it off!  liger the american bulldog is quite content but zolenut the cat is having a hard time accepting change.

hopefully we will be out of boxes by saturday and all the artwork will be properly displayed!  but jeff insist the poster of johnny cash flipping off the camera not be in the living room-which makes me a bit sad….

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.