Friday, June 06, 2014

An Ongoing Project: MissNikkiAnn Salutes Women 100.0

MissNikkiAnn Salutes Women 100.0

"We are one with Mother Earth. We are beauty. We are the nurturer. We are. We shall forever remain. No matter how man destroys the mother, she will survive and will one day regain the respect she lost."
~MissNikkiAnn

Of Course

Of course there's more to this than we can fathom.  Of course the never-ending days and nights white out our daydreams.  Of course knowing this provokes some suppressed feelings to momentarily court us as it vainly and naturally expressed itself in our twenties.  Of course we leave it all behind.  Of course we didn't want it to prematurely abandon us as life went on with what it had to do.  Of course we blamed everything for its departure.  Of course if it were still here we'd find ourselves barreling out of control.

But of course.

~MissNikkiAnn
February 2014

Tuesday, January 28, 2014

Saturday, January 18, 2014

Much...

Lately I have had so much that I've wanted to say; but with very little time or energy left to do so.  This is not a complaint, only a realization of the matter.  I no longer try to find a groove, for the groove is forced upon me by my ill body and destiny.  In the past the more I grasped at the groove, the greater the distance became.  At this point it's not even a gap, but more like the space of our galaxy. 

Now I am trying to accept what is being and will be.  I flow through courses that Mother Nature has enrolled me in; they are always exactly what I've needed, despite how uncomfortable they make me feel.  Also, I don't trust the events that bring me joy; life is too fickle to allow for a joyous constant.  Pain and joy are friends, and each allows the other to have some spotlight. 

Me, I remain as the Self, watching it all unfold, taking note of how life automatically does what it is going to do.  No...I am not happy; if anything, I am overbooked with busying myself with tending to my body's need and  tending to those I care for.  And that does suffice.

~MissNikkiAnn

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: 

https://www.youtube.com/watch?v=zOmUgbKTlHQ&feature=youtube_gdata_player

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

eating,

drinking,

peeing,

pooping

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

eating,
drinking,
peeing,
pooping
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

~MissNikkiAnn
"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

https://www.youtube.com/watch?v=3koigluYOH0&feature=youtube_gdata_player

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.)

~MissNikkiAnn
"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.
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.
Time.
You do have it.
Time.
It is not lost.
Time.
It is not wasted.
But sanity...
Drink it up before the expiration date.
OR
Drink it after the expiration date.

~MNA


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 MyBrownbaby.com parenting website, wrote on cocoafab.com 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.

Overnight.

Rheumatologist visit.

X-rays taken.

Physical therapy ordered.

Wait...