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

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

 

dysarthia is almost totally gone, now we can focus on other stuff

finally after what seems like forever, i am able to communicate with almost no hesitation!  there is very little lag in my structure, and i am not even getting words backwards or all convoluted.  i don’t think my family has ever been so happy to hear my voice!

i went to the gp yesterday.  now that the communication issues are under control we have some stuff that he really needs to focus on like infections on my leg that leave these purple black bruises and my gut issues.  so we battle the snow and drag the youngest and his best friend to the dr bc we got them from school.  we get there at 2:35-must be there at least 15 minutes early or you don’t see the dr!  so we go in and wait.  i get called back-no drug test this time!  the nurse ask me all the questions nurses are supposed to ask, and i answer all the questions patients are supposed to answer.  she leaves the room, then comes back in 10 minutes later.

“the dr wants to run some lab work on you.”

“ok.”

so she gets her little needle ready, and then ties my arm off.

“pump your fist, ok”

“sure.”

she lightly pokes around on the bend in my arm and feels for my vein.

“this is going to hurt.”

“no it isn’t.  i am fine.  i get blood work done all the time.  it’s no biggie.”

she slips the needle under my skin and then goes pretty pale.  she starts trying to move the vein to the needle.  i wanted to just grab it from her and do it myself.

“your vein rolled.” yeah whatever!”i don’t like to poke a second time.  let me get someone else.”

“look what is he running?  i just had a cbc and a chem 12 done.  why are we doing more blood work?”

“o he said you need a comprehensive blood panel to check your potassium and sodium and other iums”

“yeah that is the chem 12, it’s less than 3 weeks old.  i don’t understand why we need to do it again.”

“o if it’s that recent we don’t.”

exit scene left.  we waited another 25 minutes for the physician’s assistant to come in.  he is the guy i usually see.  i kinda have a theory that my gp is a bit homophobic and we make him uncomfortable being all gay in his face and stuff.  i mean it’s not like we tongue each other but we look like “those kind”.  the pa told us that we could wait to see the dr if we wanted to.  i had two kids, well, teenagers in the waiting room, and very little time and patience.  i figure the dr doesn’t know what he’s doing anymore than the pa so it’s six of one half a dozen of the other.

“no that’s cool!”

so i tell him why we are there.  i show him my leg again.  there is an abscess that in which the inflammation is going down and one that is just starting.  i show him the bruises that they leave when they finally go down.  

“how did you get those?”

“ummmm….yeah i don’t know.  they are just there all the time.  i have showed y’all before.  they are just getting way worse and with the neuropathy so bad in that leg i am a bit worried about necrosis.” i watch as he shivers with my use of medical jargon, see that makes him uncomfortable that i happen to have a pretty firm grasp on anatomy and physiology and how the body works.  “also i haven’t gone to the bathroom in like 2 months.  it’s pretty bad and i am very uncomfortable.”

“hmmmm…well it says here you are on _____________ for that.”

“yeah i know.  it worked for about the first month, then it stopped working altogether.  i have been drinking lots of water bc that is how the medication works, and i am obviously retaining water since i have gained 30 lbs in the past 4 months, but it isn’t working.  i had an abdominal series done.  there is no obvious signs of anything being wrong according to that-like structurally wrong.”

so pa pulls out his handy dandy stethoscope and i lay back on the bed.  he listens for bowel sounds-this time in all four quadrants, usually it’s just two.  then he checks for rebound which obviously isn’t going to feel very good.  everytime i wince he asks if it is tender…yes, it is very tender, as a matter of fact it is so tender i would call it painful.  he walks out of the room with a puzzled look on his face.

“that makes me feel real confident”, amy said shaking her head.

he comes back into the room, and gets on the computer, trying to find my latest lab work.  he bumbles around looking and he can’t seem to find my xrays.  luckily, we had just gone to the radiologist and picked up a copy.  i got them out of my purse and handed them to him. “see there is nothing remarkable except i am full of shit.”  amy laughed.

he takes the xray results out to the dr, and they do their ‘heal this woman’ dance or whatever it is that they do.  again there is another long period of time when we are sitting in there twiddling our thumbs, looking at each other, occasionally hearing a noise outside the door and looking up then looking at each other rolling our eyes.  enter pa stage left.

“well, you have some work you need to do.  i am going to give you this medication____________”

“man, you are scopin me?”

“no not yet.”

“look i just had a colonoscopy right before i started coming here, as a matter of fact it was like the day before i started coming here.  this is not a new problem.  there is nothing that you are going to find.  there is no problem with my stomach or intestines.”

“well, there has to be something wrong bc you have decreased activity.”

“yeah.  i know, but it’s not something wrong with my stomach.”

“we are going to have you take this, then take that, then take this again, then we will scope you, then we will send you to a gi dr.”

“who is going to say there is nothing wrong with my stomach, and there is nothing he can do for me.”

“well, we will see when we get there.  now, your leg that isn’t life threatening so we aren’t going to worry about it right now.”

amy dropped her head in her hands and started running her fingers through her hair, the full on sign that she is done!

“what about her insomnia?”

“we are going to focus on getting her cleaned out for right now.  we can’t do too much at once.  then we won’t know what it is that is working or if she has side effects, which she always does, what it is to.  the nurse will be in to send that script in for you.  i will see you back after the holidays”

exit stage left.

“well, that is something, i guess.”

“yeah i know that medicine will work, but man, i feel like we are about to walk into a medical twilight zone, aims.  this is going to take forever and it is going to be the same thing over and over again.  man, i think they are going to let me die.”  by this point i was shaking and almost in tears.  my body is tired.  i am tired of medication to treat the symptoms right this minute but never dealing with the cause, fuck they don’t even think about trying to figure out what the cause is.  and while these drs are off figuring out what to get their loved ones for christmas or what kind of brandy to serve at their parties, i am sick and half septic.  

“yeah i have a feeling it’s gonna be a long stretch.”

we put our coats on, and amy held my hand as we walked out the door.  we passed the gp on the way out.  he didn’t even look at us.

“let’s go kids!”

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.

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