when fire loses oxygen

here i am

here i am not me

my mind as neutral as motel wall art

my thoughts are soft like cat fur

my emotions pliable and bland

where the fuck is

my normal

my comfortable

my natural

irrational, gritty, fired up and fucked over

lost in the maze of neurons and menges

i can feel it like a ghost on the bed

but i can’t grab ahold of it

it’s not accessible

there are dust-devils of actions, reaction, inactions

whirling around

whipping through my consciousness

long enough

hard enough

fast enough

to remind me they are still there

mocking me that i can’t catch them

this isn’t the first time

this won’t be the last

the cycle me gets lost more easily these days

“idiopathic loss of cognition”

i need to live life by the teeth

i need to see the heavenly and evil in everything

i need to scream

i need to stomp

i need to be alive

i need to think

i need to feel

i fucking hate beige

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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.

dear body

dear body,Image

i know we have not been getting along very well over the past few months.  i apologize for that.  i am not exactly sure what i did to deserve the full force of your wrath.  if you would please explain i can remedy any miscommunications we have had.  i would like to go back to our relationship as it was before, when we were both happy and healthy.  i promise i am doing all i can in order to fulfill your needs, but, sweet body, you are making it very difficult for me.  the constant exhaustion, the lack of digestion and nutrition, the inability to sleep, the pain, taking away my freedom to speak correctly, the falling down, the confusion and the infections make it difficult at best to want to be around you.  i know that you are going through something, and things are hard on you too.  please allow me to help!  please let me know how i can be better to you, so you are not having to exhibit these problems!  hope to hear from you soon!

sincerely,

the brain of grace

down for the count

when these don't work all you feel is pain

when these don’t work all you feel is pain

this has sorta turned into an ongoing list of symptoms to turn over to the dr….sorry

  • weakness
  • confusion
  • nausea
  • sensitivity to cold
  • feeling as though electricity is going down long bones
  • tenderness
  • inability to walk upright
  • stiff joints
  • fabric hurts the skin
  • pressure from lying down
  • pressure on the feet when standing up
  • headache
  • burning mucus membranes
  • exhaustion
  • sensitivity to noise
  • sensitivity to light
  • burning under the skin
  • muscle weakness
  • muscle jerks
  • spasms
  • visual processing issues
  • auditory processing issues
  • verbal issues-word recall problems, inability to say the word fluently
  • vomiting
  • vertigo
  • forgetfulness
  • inability to pay attention
  • falling down
  • digestive issues
  • one-sided pain/weakness
  • inability to move my legs

i am in a bad way today.  change in the weather, exhaustion, stress, whatever.  it’s all stuff i have no control over.  i am embarrassed, my kids shouldn’t have to see me like this.  so tired.  so tired of not having control.  so tired of not having a proper diagnosis.  so tired of drs treating symptoms while my body and brain deteriorate.  so tired of unknown unseen uncommon.  in a battle the ability to see and know your opponent is crucial.  i am at a massive disadvantage.  i am scared.  i am tired.  i am going to sleep-hopefully

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.