pointless test pointless drs


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.





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.


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

, Image ImageImageImage

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



  1. jmlol · November 9, 2013

    I hope you get the neurologist asap. I wish I could help steer you in the right direction, but I don’t even know what has been ruled out. The only crazy things I can think of are celiac (which probably would have shown with vitamin tests) and heavy metals like copper, blockage in your carotid arteries, or chiari malformation, but there are a lot of things that are that can cause those kind of neurological symptoms and some are kind of scary and some are not. I would assume that you’ve had a head CT, and it not you need to have it done. I know it’s frustrating to not have answers, but keep being your own advocate and kick the doctors until they find it.

    • cakeleevannila · November 9, 2013

      thank you!
      it fits into ms and also guillan barre syndrome. my neurologist is wicked smart and saved my life when i had psuedoparkinsons caused by reaction to medication. i was dying very quickly and the other drs were just like “hmmm..have you tried talk therapy?” by the time i saw the neurologist, i was very close to death. you have to have dopamine to, ya know, live. i had every single classic symptom:loss of affect, low muscle tone, rigidity, tremors, low emotional reaction, cognitive impairments. i went from normal (if you rate parkinsons on a scale of 0-10) so at 0 to 8-9 in 3 months.
      i trust my neurologist. and i feel like this is all neurological. it is affecting too many systems, the pain, the sensory confusion and overload, inability to talk words, it has affected my digestion, my immune system, all kinds of stuff.
      some days it’s bad, some days it’s ok. i have alot to hold onto for the most part. my son is in love with a wonderful girl and they are probably going to get married. my middle son is working on becoming a culinary artist. my youngest son is finding himself and has become a social butterfly. plus my partner…and my exhusband. my friends. my political activism, even if it is from the computer.

      • jmlol · November 9, 2013

        Well, you also have a random stranger cheering for you too!

      • cakeleevannila · November 9, 2013

        thank you so much! this blog and the readers and the blogs i come across me the world to me, it helps me stay connected w reality! i appreciate you and everyone else who has so generously been supportive!!!

what's on your mind?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s