Saturday, November 16, 2013

Wednesday, October 30, 2013

Thursday, September 26, 2013

Oh, No! Not Another DYS: Dystonia

We believe that this illness is taking control of my knees:

Saturday, August 31, 2013

I Find You Guilty of Peeing, Pooping and Sleeping

i think it absolutely absurd how much i think i can do in one day

the demands are high

the actual accomplishments, typical

and on a typical day, i won't even put into action 1% of my brainstorms/brain farts

i will probably only attend to my basic needs: eat, drink, pee, poop, sleep

there will be moments in the day where i will believe that





and sleeping

are not big enough accomplishments for my theoretical superhuman abilities

but my accomplishing those not big enough things makes me a winner at being human

at odd times, i am a recipient of life's and mother nature's serendipitous--seemingly magical and miraculous--moments, most of which won't even register with my tiny brain cells because i will be appropriately and understandably occupied with

and sleeping.

but that one serendipitous moment (or, finally, one brainstorm) that is made manifest will make me feel as if i, indeed, had been living as a superhuman all along

and that glimpse of magic will almost instantly, and surely innately, be pushed aside by my dire need to take a poop, a pee and a nap--waking later to feel hungry and thirsty

and then eventually (and again), hungering and thirsting for my once momentarily vivid superhuman abilities

"Be good.  Be patient.  Be around-the-clock tending to your body's needs."

Charcoal Donut, Anyone?

Why...thank you.

Saturday, August 17, 2013

Wadjda: The Movie Trailer

Saudi Arabia Addresses Egypt and the World

The Saudi statement:

"We have followed with deep sorrow the events taking place in our second homeland, the brotherly Arab Republic of Egypt; events which only please enemies of Egypt's stability and security and its people, but at the same time pain all those who love Egypt and care for its stability and unity which are, today, targets for all evil wishers.

This attempt to unsettle Egypt’s unity and stability - carried out by the ignorant, the inadvertent, or the mindful of the enemies’ design - will, God willing, be fruitless.

The people of Egypt, Arab and Muslim nations, the honorable Ulema, intellectuals, writers, and all sensible people [are] to stand united with one heart in facing attempts to destabilize a country which historically has always been at the forefront of Arab and Muslim nations; honorable people should not maintain silence on and be heedless of what is going on.

The people and government of the Kingdom of Saudi Arabia stood and still stand today with our brothers in Egypt against terrorism, extremism and sedition, and against whoever is trying to interfere in Egypt's internal affairs and in its determination, power and legitimate right to deter every spoiler or whoever misleads the people of Egypt.

Let it be known to those who interfered in Egypt’s internal affairs that they themselves are fanning the fire of sedition and are promoting the terrorism which they call for fighting.

I hope they will come to their senses before it is too late; for the Egypt of Islam, Arabism, and honorable history will not be altered by what some may say or what positions others may take.

Egypt will be able, with the grace and might of God, to pass into the land of safety; and then those will realize the wrong they committed when it is too late to show regret."

Thursday, July 18, 2013

We Don't Know We Should Be Bored

At times we just do not know what we are doing.  We're working with a tainted and cloudy picture of what we believe any given situation to be.  I always hope that I sleep soundly.  Sound sleep is the one place where none of it matters.  Sleep can be rejuvenating.  Lack of sleep can make life difficult and burdensome.

And the clock.  The clock keeps ticking.  And the time and date are everywhere.  No matter the time of year, I always view the calendar days, weeks and months as "flying by."

But it is bedtime now--way past my bedtime.  I have done all that I will do for now.  After some sleep, maybe I can convince myself (and encourage those who are low in spirit) that life is going to work itself out. That no matter how weighted I feel with the days events, I will probably live to see another average human day--eventful or not.

And I hope for boredom.  Some simple boring summer days where I can finally say that old saying:
No...not fuck you! 
Though that phrase can be cathartic,
I am speaking of that childhood moment when kids adamantly insist...
"Ma!  I am soooooo bored.  There's nothing to do."
And if you're a girl...
"Boys get to do EVERYTHING!"
(And it was true. And my mother did not argue with that part.)

"May your summer bring rejuvenatingly boring moments." 

*MissNikkiAnn throws pixie dust into the air, hoping it will touch and unburden many, even herself.

Monday, July 15, 2013

Friday, July 12, 2013

"Mos"t "Def"initely A Dysautonomic Force Feed?

Just want to advocate for all of my fellow Dysautonomics who know all too well how J-tube (jejunostomy tube) feeding/testing feels.  I have had a few tests via j-tube, while I was fully awake.  I also have many Dysautonomia friends who receive all of their nutrition via J-tube.  And even more, I have young friends who know how to put in and take out their own tubes (not that difficult really).

What does this have to do with Mos Def and the Guantanamo Bay video?  The procedure in and of itself is not painful.  On the other hand, if you are an inmate who's been refusing oral eating, and you're chained to a chair--possibly thrashing about--this procedure/torture could be the hell you never dreamed of.

Now, what is MissNikkiAnn's overall objective (since it's no disrespect to the art that went into that compelling video), I want my curious readers to know that J-tubes are a regular thing for us Dysautonomics--just like accessing our own ports and administering our own infusions at home.  So take that information and imagine all of the other things that you don't about our lives with Dysautonomia.  If you see me in a store with my walker, that in no way means that I am okay.  The things that I have to do at home and at hospitals and doctor appointments will go unseen.  The best thing to do is to assume that you can never grasp it until you (or someone close to you) is going through it.

Last year I was informed that I will probably eventually need J-tube feeding.  And having had the J-tube procedure done many times for testing reasons, when my time comes, I will learn how to place and remove my J-tube, as I learned how to access my own port.

Funny how art can be interpreted--when I saw the video, I thought nothing of the inmates.  My thoughts were on how strong and amazing my J-tube friends are.  They shed no tears when showing us by video how they insert and remove their tubing.  That J-tube is saving their lives, as they are no longer able to take in nutrition by mouth.

That last thought reminds me of something God said to Neale Donald Walsch in Neale's Conversation with God book.  God told Neale to live.  God did not mean for him to go out there and live life to its fullest, he REALLY and literally meant for humankind to stop thinking that it takes death in order to live.

Sounds confusing, right?  It is so much easier to die than it is to live through human suffering, suffering that is a big and necessary component of the human existence.  We did not come here to live simple and uncomplicated lives (at least, not this time around).  We are here NOW in order to experience exactly what we are experiencing NOW.

Live.  Choose to breath and live.  Choose to endure all of the horrors until you find your way out of them.  And if you never find your way out of them, choose to allow that to be your wisdom, the kind of wisdom that most people will never experience.  Live.  Live through needles and infusions.  Live through feeding tubes and catheters and electronic implants that keep your heart and bladder and colon functioning until they no longer can.  Live to see artists like Mos Def utilize their talents for the cause of others.  Live to have empathy for war prisoners and the family that cares about them.

Live.  Live.  Live.  Even if you have to live from a bed, as my dysautonomic friends and I have to.  Because no matter what, the end WILL come.  You don't have to force it.  The reaper will pay us all a visit.  And just because I am ill, it does not mean that you will outlive me.  So live.  Live.  And live.

For those who are curious about the Mos Def and Guantanamo Bay references, here's the Mos Def video (and my thoughts are with all men--worldwide--who find themselves in prisons, enduring and trying to live):

Tuesday, July 09, 2013

BE-ing Grounded

See the trend but do not panic.  
I repeat:
Do Not Panic.
You have more time than they say you have.
News machines are contagious.
Research the contagion.
Be sure that the contagious contagion is worth the drama.
You have time to window shop.
Most of your life is--and will be--spent waiting.
Just because something is repeated and hammered to death every minute and every second of our waking day does not mean the medium is magically moving any faster. 
It is perfectly safe to consume less frequently--or even abandon the vehicle.
Don't forget to tuck, drop and roll.
You do have it.
It is not lost.
It is not wasted.
But sanity...
Drink it up before the expiration date.
Drink it after the expiration date.


A Pearltree: "The NSA Files: PRISM and Boundless Information"

The NSA Files: PRISM & Boundless Information in NSA / USA / world / dMaculate (dmaculate)

Saturday, July 06, 2013

Shockingly Surviving The Ledge

I woke feeling feeling sick and in need of loads of meds to calm the symptoms.  I got up to powder my nose and find the meds I so needed.  I passed Shock (our Robo Dwarf hamster, looks like a cotton ball/bunny rabbit) and decided to chat with her, she loves to chat--she's skittish as hell, but loves to chat.  I opened her cage so that she could sniff my hand and know it was me.  We chatted and then she did the thing that I didn't need at 3 AM, she jumped out of the cage.  Good thing I am calm with pets (not scaring them off like Sir does with his eagerness to hold and love on the fury, adorable creatures), because her cage his up high, away from any safe spots to land.  But I did some thinking and after about 3 minutes managed to entice her with a detachable part (which doubles as a traveling case) of her cage.  I know that Nasty Nancy (Nasty Nan or Nan) senses when there is a ledge and instinctively knows not to jump or walk off.  But Nan is a Chinese Dwarf and has a different innate sensibility, while Shock's kind are so skittish (even if they are calm and friendly) that they "skit" to their own demise (plus, what dumb ass would open the cage while it's on a high countertop, void of any safety nets under it?)--MissNikkiAnn raises her hand.

So Shock is alive and it is now 3:30 AM.  I will probably be pushing meds through the syringe until about 4:00 AM.  With this "free time" on my hands, I will be playing Kingdom Rush on my Chromebook.  I have completed the levels, but am now trying to get 3 stars for each of them.

That is all.

Thursday, June 27, 2013

Monday, June 24, 2013

MissNikkiAnn's Live Spreecast - Contagious: Paula Deen

Contagious People

Zimmerman "Coon Killer" Hero

Quotable: Author Denene Millner on Paula "Mad Butter" Deen

New York Times bestselling author Denene Millner, creator of the parenting website, wrote on that she wasn’t surprised by Deen’s revelations.
“This is a 66-year-old woman from the South, born close enough to segregation to see the whites of Jim Crow’s eyes,” Millner wrote. “I’ll bet she knows how rank he smells—that rancid, putrid bouquet that escapes when the word “nigger” curls off the tongue. I’m betting, too, that she knows how scary he looks on a dark country road on a hot Southern summer’s night. Or in an equally hot kitchen where Negroes toil.”

“I’m not saying this is the way of every 66-year-old white woman from the South,” Millner concluded. “But I’ve been living in the South for almost a decade, and I’ve got enough honest, good white friends down here who’ve told me in confidence that their grandfathers and daddies and uncles still have white sheets hanging in their closets—not the kind for beds, but the ones rocked with pride in front of burning crosses. Racist behavior lingers—dances all up and through the DNA.”

Sunday, June 23, 2013

MissNikkiAnn's Spreecast: My Body Wins

A Confession

I still have no clue who Justin Bieber is or how he gained his fame.  So as a woman who was born in the 70s and grew-up during the 80s pop culture scene of BET and MTV, I am (at this moment) trying to invest FIVE MINUTES into researching this guy.  My main goal is to listen to ONE song.  But even as I type this, I feel my interest waning (seriously. my illness has given my once-focused mind ADD.).

I am now starring at my screen, contemplating my:  "Chocolate is proof that God wants us to be happy" mug.

I now realize that chocolate as a skin tone is what I hope this mug is referring to.

Starring at the mug.

Thinking of Paula Deen's innate ability to say "nigger."

Hearing footsteps on this Sunday morning.

Sounds as if my mom is getting ready for church.

African Methodist Episcopal (AME) Church.

Reminder as to why chocolate people had to establish churches for themselves.

Avoiding going to powder my nose because my illness is affecting my knees and I can barely convince them to bend.  And when they do bend (on their own will and time), the pain is fierce; and afterward, I am unable to get them to straighten out to stand.

My legs hate me.

Racist legs.

Restless legs.

The onset was acute and sudden.


Rheumatologist visit.

X-rays taken.

Physical therapy ordered.


Saturday, June 08, 2013

This Is What A Dysautonomic and MCAD* Mom Looks Like

Sir takes indoor swimming lessons.  So that should be a more tolerable environment for my illnesses, right?  Of course not!  I am allergic to chlorine.  I wear a mask and get Benadryl-Emergency Inhaler-Up'd to endure it all, which is 3 days a week.  And that heated pool, which makes the inside pool area feel like hot hell, is my enemy.  The pool is winning the battle.  I am fully bedridden today.  And still struggling to get the pain under control.
*MCAD (Mast Cell Activation Disorder)

Thursday, June 06, 2013

Chronic Pain

I don't mind (anymore) that I NEVER have a pain-free day.  Hell, I don't even remember what that feels like.  My normal pain-level day is 3 and up (10 being dying (literally).  I was forced to come up with a scale after being asked a million times at the E.R.

My pain is up and rising.  I go to bed at a 5 (already medicated) and wake-up at a 7, which my meds will hopefully bring down to a 5.

The pain is all-consuming.  And my favorite high-level pain remedy is backordered (yup, med companies sometimes provide one sector with too many of a product, leaving pharmacies out on a limb. 
And I feel for my pharmacist every time he has to tell me that one of my pain meds is backordered, since he knows that I only request certain pain meds when my regular medicinal pain regime is not keeping up with the pain.  He sees the begging-for-relief in my eyes.  Just two days ago I was lying on his floor (yes, on the pharmacy floor).  My body had momentarily given up functioning properly (well, MY Dysautonomic "properly"). 

So I wait.  And wait some more. Trying not to lose my mind.  If it rises anymore, I will have to contact my doctor.  and for those not acquainted with the prescription-pain-relief phobia in America, be grateful, cause it probably means that you and yours are physically well and healthy.
Big Corporation and Big Government, please stop your paranoia.  Statistics show that only a small number of patients abuse/misuse/overuse their narcotic pain meds.  I am not on a narcotic pain med (which would be the best so that I wouldn't have to take FIVE non-narcotic (but strong!) pain meds instead of ONE! narcotic.

One of my favorite lines that an advisor spoke to Queen Elizabeth I during a difficult decision-making time for the Queen:

"A prince should be careful to not be afraid of his own shadow."

Sunday, June 02, 2013

Turkey Protests: Third Day of Anti-Government Unrest

Come on!  You gotta be kidding me.  At what point do cops forget that they too are citizens?  It's not as if they are paid millions of dollars to do their "job" (if you call knocking muthafuckas out with batons a job).

I am sorry to inform the future generation that each day since 2013 started, the majority of human activity has lead to a more rapid decline in the "love-thy-neighbor-as-you-love-yourself" territory.

We have no choice but to coexist; in the end, the truth of that will not have changed, no matter how many muthafucking "neighbors" you have bashed over the head with bats.  Dumb asses.

Friday, May 31, 2013

Dysautonomic Relief

I access my own port (putting the needle into my chest) and administer my own IV meds (which are way better and faster acting than oral meds, which is why drug addicts are willing to poke needles into their arms and other body parts).  I've got the IV pole and everything else that comes with the privilege of performing your own infusions (I even take it with me in the car if I need to leave the house). 

Did I mention that my walker (with a seat) is my best and constant companion?

For Those Who Have Emailed Me

First:  Thank You!  Since removing the comments option from the blog (which I decided lacked intimacy and mutual privacy); I have received lots of personal emails (you too can email me at  My readers are openly writing me about their lives and struggles.  I never imagined that anyone would actually take me on my word and contact me by email.

Now to the point of this post.  My goal is always to answer each email.  The problem with this lofty goal is that it does not take into account that I am a chronically ill single mom who's homeschooling her child (can you say "stressed?").  I am barely able to fill the job requirements of motherhood, being chronically/progrssively ill and homeschooling teacher.  And lots of days (every week!) I can only fill one: being ill.

Though I am eager to answer all of you, it may take some time.  But do know that eventually I do respond to all emails.

Thank you for sharing your life and stories with me.
I am holding a stressed-out stress ball.

Dysautonomic Behavior

It's how I roll.  And I work overtime.  No vacation days.  No holidays off.  I'm on the dysfunctional Dysautonomic grind.  All day.  Ev'ry day.  Catch up!

Thursday, May 23, 2013

Chronically Aggressive

I have been living with my illnesses' most persistent and debilitating symptoms since 2009.  You would think that living with something 365 days a year would become routine and controllable.  But I assure you that it is not the case; especially when your illness is aggressive and progressive with no remission to come.  At some point each week I think that I am as sick as I can possibly get, then I get even sicker.

What is most annoying is that my symptoms guide what I will be able to accomplish in any given day.  It is near impossible to "make plans."  One week I am in the pattern of being my sickest during the morning hours; the next week it is during the night hours; the worst is when I get no relief at all in a week--and I am having that right now.  It makes me feel so insignificant when I can't do for my own son, when those who are caring for me have to make significant adjustments to their lives for the sake of my health.

This situation gets old but the illness never grows weary, it shows up right on time and loves to put in overtime hours.  Nothing I am taking is alleviating the pain and pre-syncope symptoms.  I've had my 3 intravenous infusions for the week and still my body is not able to moderate my blood pressure, it totally bottoms out when I go to stand, which means I am bedridden until it decides on what it wants to do next.  Me?  I wait.  And wait some more.  And it gets old.  And I am getting older.  And my son is getting older and responsible enough to do for himself when I cannot perform simple mom tasks.  And it gets old.  I wait.  And wait some more.

Wednesday, May 22, 2013

Ranted Ramblings on Disco Piss

The hamster is hiding in one of her loops.  I haven't known her long, but so far she seems to go there when Sir and I have frustrated the shit out of her.  I mean, I have good reason.  If she'd just stop shitting and pissing in her wheel then I could spend less money and time poking at her and trying to potty train a thing that  likes to piss, shit and run as a bathroom break.

And then my POTS (Postural Orthostatic Tachycardia Syndrome) symptoms have arrived right on schedule to remind me why I hate spring and friggin' summer, I am bedridden and my world is like an spinning disco ball with hints of some hallucinogenic hippie drug that makes spinning in circles after a long day AND night of drinking look like its bitch--I am up at 2:30 in the morning feeling hungover without the prerequisite of partying and drinking.

Did I mention that racism is rampant?

Tuesday, May 21, 2013

A Story: Epipen and Nasty Nan

found myself alone with an amazing from scratch spaghetti with meat sauce by one of my favorite family-owned restaurants.  this is new england, so great italian food is not hard to come by (and i ain't talking processed olive garden shit).  this was my second day with the same dish.  the day before the outside and inside of my mouth began to set on fire from the onions.  but i wanted it so bad that i kept going.

i am highly allergic to onions, scallions and garlic.  highly.

i am also prone to being an idiot.

but how can one live in a highly italian populated area and not eat onions and garlic?  it is near impossible.

a little over a year ago i had to epipen myself after coming into contact with onions.  let me be clear: i did not even consume the onions, mom was cooking with them on the OTHER SIDE of the house.  my throat began to close up...what a horror

now here we are.  a little over a year later.  i HAD been diligent about even being near onions/scallions/garlic.

this time, not only did my mouth and esophagus get set on fire but my entire body felt as if it were being cremated.

then my throat began to close up.

i panicked.

grabbed 2 benadryls.

and refused to epipen (i have heart issues and the epipen's epinephrine causes my heart too many issues). kept closing.

i panicked even more.

tried to find the epipen in my purse.  couldn't.

dialed my mom while the 8-year-old watched me in horror as i flung all the shit from my purse onto the floor.

found it.

stabbed myself with it.

cried like an idiot who had forgotten that she'd CHOSEN to put her body at risk.

popped another benadryl and then some clonazepam, propanolol and emergency inhaler.  yelled at the 8-year-old to rub liquid benadryl on my raw back.

waited and sat in front of a fan to cool my burning body down.

time passed.

i survived...

and noted that Nasty Nancy (nickname i gave to our new pet dwarf hamster whose real name is Ala Luv Cake) slept through the entire episode--my screaming, crying and everything.

then the 8-year-old gave me a lecture.

then mom gave me a lecture.

i did not give myself a lecture.

later that night, i gave Nasty Nan (short for her Nasty Nancy nickname (yes, i am an idiot)) a lecture about not having my back and sleeping through my hellish episode.

Nasty Nan looked at me.  sniffed the finger that i was pointing at her cage.  and did what Nasty Nan does: got in her wheel (which she truly thinks is her bathroom) and shat and pissed in it while running to nowhere.


wait...did i mention that i think Katt Williams is a genius?

i know some of you will have to google that name.

Monday, May 20, 2013

Freestyle Ramblings: I Could Almost Cry

Finding my way out of a hole.  Crazy rabbit hole.  A rabbit hole that seems to be turning into a circular mess.  Sometimes you have to let life be a mess.  No....didn't like the sound of that, or the false-hood of it.  Life is a chaotic mess.  Our world is.  Space is.  Organized chaos?  Coming together for a mashup of some amazing moments.  Mashup.  Circular mashup.  Love it.  Then hate it.  Be afraid of it.  Or go with it.  Really one has to go with it.  The only other combination would be going with it while utterly afraid of it.  Laws prevent too many other options.  Chaotic Laws.  My being as a lawful body.  Humans as a lawless set.  Mother Earth as an enabler.

April 2012

Saturday, May 11, 2013

Coffee and Outlook: Boycott, Divestment and Sanctions (BDS)

From where I'm sitting, today is proving to be just as impressive as all others.  We humans never miss a beat when it comes to slow shock value.

Let's look at it:  Noam Chomsky asked Professor Stephen Hawking to boycott an academic Israeli conference--and Stephen was down for the cause.  

We can rightly assume that this intention will grow massively as very little time passes.  This particular issue (Israeli powers) had been thawing from the freezer that American had placed it in.  Noam's push was a move for somebody (hell! ANYBODY) to finally tackle what is eating away at many souls:  The war on "ordinary" Palestinian people.  

Ordinary.  The working class.  Folks who just want to get on with the tasks that nature deems important: eating, sleeping, pooping, peeing, and procreating.  Mothers and grandmothers who have no idea who Chomsky is want to continue to do the job that is innate.  Men?  Well...that's too long of a story.  A story that time is addressing, a story that is bound to write itself when we women take the time from eating/sleeping/pooping/peeing/procreating-raising-children.

Where are we?  We are at the part where President Obama has to slowly tweak his speeches on how he feels about Israel and American Jews--he needs them more than he needs American Negroes.  With that being what it is, common sense Americans are finally realizing that Chomsky's microwaving of the formerly thawing issue is what it is going to take to accomplish what the BDS and so many others want:  the freeing of the ordinary Palestinian people.  

I guarantee that we are about to see some historical changes unfold.  Hell, the fact that I am even taking time to blog about it speaks loud and clear.


Thursday, May 09, 2013


"More and more all nations are realizing just how much we are being pimped by our systems and big money.  World War III is beginning while we are consumed by achieving ideals and goals that are anti-family and anti-sustainability.  What I do see is that Mother Earth cares less about our agendas, just ask the dinosaurs.  Oh!  My bad, she wiped them clean from her body.  Who's next?"


Thursday, January 10, 2013

On Parting The Red Sea

Just finished watching this, and I wanted to reshare it with you.