Quotable: Pussy Riot

Quotable: 50 Cent Calls In And Interrupts Shyne's Conference Call! Goes Mel Gibson...

And then I found this...

Oh shit!

50, you have twice done to me what only one other man has...

If I were a smoker, I'd light up right fucking now.

~MissNikkiAnn

Quotable: Inmate Destroys Judge

Quotable: 50 Cent Says "I'll Fuck Her Up."

Like he says:

"I'll fuck her up."

Wow.

Classic.

~MissNikkiAnn

MissNikkiAnn Wants YOU! Yes...YOU! (Spreecast.com)

*My Spreecast channel: www.spreecast.com/users/missnikkiann

Feel free to email me if interested: missnikkiannhelp@gmail.com

or...

Drop me a message on YouTube (MissNikkiAnn)

or...

DM me on twitter (MissNikkiAnn).

~MissNikkiAnn

MissNikkiAnn's House Live on Spreecast 07142013

"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):

A Nikki Ann Moment: What Is That Shit?

Sep 24, 2011 | It's a Monster! *takes closer look* Or...or a phone? by missnikkiann on Keek.com

I see it, too: "Anonymous Do You See What I See vs.2013"

Inside the ISS - Hair Raising Hygiene!

I Have Some Bad News

Democracy is not equivalent to perfection.
~MissNikkiAnn

Quotable: "You Can Touch My Hair But You Cain't Touch My Hair Scarf" by MissNikkiAnn

And I mean that shit.

~MNA

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"

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.

Quotable: Rep. John Lewis, Civil Rights Icon, on the Struggle to Win, and Now Protect, Voting Rights in U.S. | Democracy Now!

Rep. John Lewis, Civil Rights Icon, on the Struggle to Win, and Now Protect, Voting Rights in U.S. | Democracy Now!

Orphanet: Pure autonomic failure

My illness (well, one of them)... Orphanet: Pure autonomic failure

Quotable Snippet: We're Not Brilliant

MissNikkiAnn's @Spreecast 06292013 Correction: "Proactive" NOT "Protopic"

MissNikkiAnn's Spreecast 06292013... "I'm Black: But The System Worked For Me"

MissNikkiAnn Live on Spreecast: "Difficult to be Miley Cyrus In America"

Sharing My Opinions on Opinion

I don't have to "want" to share my opinions.  My opinions "are" tainted.  And what happens if I have changed my opinion after airing my opinion?

Bits and pieces.

Soundbites.

Contagious words spoken prior to experiencing more wisdom.

Contagion.

Courageous.

Being courageous enough to keep your conditioned opinions to yourself.

MissNikkiAnn's Live Spreecast -- MCAD: Funk, Soap and Scarves, Parts 1 and 2

Quotable: Bill O'Reilly Gets Owned By Kid

A Repost: "What is wrong with Islam today? - Head to Head - Al Jazeera English"

What is wrong with Islam today? - Head to Head - Al Jazeera English

MissNikkiAnn's House Live on Spreecast: A Ratchet End to the Day?

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.”

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...

Please welcome Terence McKenna. May he rest in peace, forever stoned and conscious.

Watch "Terence McKenna 07 Psychedelics In The Age Of Inte" on YouTube

Awesome Brown Folks!: Booty Luv's Acoustic "Black Widow"

MissNikkiAnn's House on Spreecast

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)

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."

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.

Another Dysfunctional Dysautonomic Spring and Summer

America, Is It Okay To NOT Be Number One?

Your collective answer greatly affects how and what you do with your American life.

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 missnikkiannhelp@gmail.com).  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!

Park Avenue: Money, Power and the American Dream

Watch Park Avenue: Money, Power & the American Dream on PBS. See more from Why Poverty?.

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.

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?

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).

but...it 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.

enough.

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

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

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

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.

~MissNikkiAnn 

Pimped

"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?"

~MissNikkiAnn

MNA Speaks: From Lent to Easter

Was just thinking on how...

We are never satisfied.

On Parting The Red Sea

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

Watch More News Videos at ABC | Technology News | Celebrity News

Just ONE Year Ago: Two Palestinians girls arrested during home demolitions in Umm Fagarah, ...

Men of this kind (any background...color...religion)...are worthless.

#Dysautonomia Tweet-A-Thon by Dysautonomia SOS

The article below has been copied from: http://dysautonomiasos.tumblr.com/

SUNDAY! The ORIGINAL Tweet-A-Thon, taking place with anyone who wants to be involved. Let’s get #dysautonomia trending the right way!

For something to trend on Twitter, we all need to tweet at the same time! Not spam people with tweets all day long, but tweet #dysautonomia in mass. That was the original plan on the date above. Other organizations have chosen to take this idea we came up with and do it their way on a different day, and that is fine - we want as much dysautonomia publicity as possible! BUT! We have to be careful to NOT SPAM, or it defeats the purpose and ends up clogging up people’s twitter feeds, and they don’t click on links to more info.

Our suggestions for participation, in conjunction with DINET, can be found here.

We also will host a #dysautonomia TWITTER CHAT at the same time - SUNDAY 8PM EST.

We want to hear how your condition affects you!

The world needs to know! Include or search for #dysautonomiaTC (for Twitter Chat) to participate. We will ask questions to get the conversation going, but feel free to participate as you see fit.

We are dedicating the event to an amazing lady who actually came up with this idea, Miss Nikki Ann.

She suffers from a multitude of dysautonomias and other health issues, including POTS, PAF, MCAD, and many many more. She originally came up with the idea to tweet about dysautonomia like crazy, and we (being me, Claire) discussed it at length in terms of organizationand how to rally the online troops. She has been very sick, and busy trying to get treatment and firm diagnoses, but she still takes time to be very active in the online dysautonomia activist community.  Find her story and learn more about her here:

On YouTube: MissNikkiAnn

On Twitter: @MissNikkiAnn

Blog: Miss Nikki Ann’s House

You can also find a special feature she did for our website (www.DysautonomiaSOS.org) once we are launched - this weekend!

Come chat  (#dysautonomiaTC) and tweet about #dysautonomia - at 8 PM EST THIS SUNDAY!!!

Let’s do this. 

Adequate: McDonalds Coffee In A Starbucks Mug

Feeling like hot boo boo.  Sitting in my recliner (which I never do, I have reserved it for guests) with a blanket over me, popping pain meds that seem to have forgotten their job responsibilites???  And sipping on McDonalds coffee out of my Starbucks mug (mom went and got coffee; I was too sick to french press my Starbucks coffee).  And...as is customary, I have a urology doctor appointment today; so there goes a quiet day, which I rarely get anyhow (chronically ill parents have a double whammy of a life and it rarely invovles naps and rest).  Yesterday I had to call my allergist and go in for a breathing treatment, which led him to placing me on Prednisone (a heavy steroid) for 5 days--a sista is not getting much air by inhalinf and is then not exhaling well ("Waiting To Exhale," anyone?).

I'm out.

"Be good.
Be a good patient.
Be in the moment of having proper and above adequate healthcare."

~MissNikkiWaitingToInhaleANDExhaleAnn

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Hospital Day

There's this...

This...

And now this...

I tried.

~MissNikkiAnn

Willow Smith: "Keeking" It

Found this little piece (Keek allows up to 36 seconds of video) by Willow Smith.  I listened to it over and over.  We are bombarded by hyped-up and electronic music, so it was refreshing to see a young person showcasing their own piano piece--not synthesizer, but PIANO (LOL).

Jul 7, 2012 | A Little Something for the Keek fans!! THANKS FOR FOLLOWING! by officialwillow on Keek.com

Sleep? Study

You know just about how much sleep I was able to get with all of this going on.

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Nostalgia: LET'S GO! Jamming to "A Tribe called quest - 'Scenario'"

This is one of Sir's (my 7-year-old) favorite songs.  Today I read the lyrics to him, explaining the history of the "retro" lyrics.  His favorite lyrics are from Busta Rhymes, which is no surprise since most hip hop lovers favored those infamous words that placed Busta in a position to bring pain to the world of hip hop.  Awesome stuff!

~MissNikkiAnn, "let the rhythm hit you"

A Tribe Called Quest – Scenario Lyrics

*Clicking the above link will take you to another site that I have visited personally and did not suffer and consequences (viruses), but you must always use your own judgement about leaving my "safe" page to view any of the links that I have posted.

~MissNikkiAnn

The Guest House Occupied by Pain

Shit...I Can't Breathe!

I am here.  Just trying really hard not to go under.  The doctor/hospital/testing schedule of the chronically ill in America is very time-consuming and is equivalent to a full-time job with overtime and no benefits.  I literally am never home because of doctor appointments, infusion appointments and tests (lab work, x-rays, scans...blah blah blah).  I point out the phenomenon as an American Epidemic because in other countries the sick receive most of their attention and care at home (even some tests and lab work).  I do believe that such a way of treatment can be a positive to the mental/emotional/physical state of the patient.  Some folks have a vision of the chronically napping and shit.  I can assure you that I do not nap, that when I do it is because I am lacking in enough oxygen to function awake.  I literally mean that my body forces me to sleep because it does not have enough input (air) for output (activity).  The item I am holding in the above picture is an incentive spirometer, which exercises my lungs.  Yup, lung failure and diaphragm weakening all around here. In the matter of a week, I went from no breathing aides to 3 inhalers and this here spirometer; and have gained myself an (in-home) sleep study.  

I just do not breathe much without having to tell my body to do so.  Do you get that?  Breathing is a component of the autonomic (automatic) functioning of the body, so a normal body breathes without the person having to think about it.  Not for me, I spend my day "making" myself breathe.  And at night?  Well, that's the problem.  It's one thing to expend mental and physical energy during waking hours to monitor breathing, but at night...well, let's just say that death during sleep is one of the standard demises for dysautonomics like myself.

But I must take my leave.  Why?  A doctor appointment.  So surprising!

"Be good.

Be patient.

Be in the moment of your breath if it works for you automatically."

~MissNikki-ICan'tFuckingBreathe-Ann

A Chronic Illness/Spoonie Rant (Warning: contains adult language)

FANTASTIC FIVE YOU TUBERS: @MissNikkiAnn Made TuckerZone's Cut!

Nidge is a wonderful guy and a great supporter of YouTube's chronically ill community.  He is a rare and much appreciated find, talented and compassionate.  I feel blessed to have been spotlighted on his vlog.

To MissNikkiAnn

I am humbled.  I love Doctor Susie!

For My Family/Friends/Others Wanting to Understand My Dysautonomia

This is an awesome resource about one of my dysautonomias. 

*Please be forewarned that it is not for the faint of heart, this is for those ready to tackle the truth of the matter.

Click the link: Multiple System Atrophy.

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Life As Mai Straubury Kay -- A Satire by @MissNikkiAnn (blog episode 1.0)

It has occurred to me that...

~MissNikkiAnn

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Hello Blog

I thought it important to stop by and see how you (the blog) are doing.  Let's face it, since falling ill with various (basically, too many to mention) dysautonomias...what?...3 years ago now?, I had found it accordingly difficult to write.  So many neurological issues and medications that lead to total and utter brain fog and inability to stay focused on tasks.  I had always prided myself on my ability to focus.  I am a listener by nature and love to...listen.  I never lost focus in school nor college courses because of my gift to not get bored when someone is talking.  I mean...I could sit for hours listening to lectures.  But now?  Shiiiiiiit!  My attention span and mental processing skills rival that of a gnat.  I have absent seizures where I come-to and realize that Sir (my 7yo son) has done stuff that I was totally unconscious of WITH my eyes wide open.  But those things come with my illnesses (yes, plural), and I am finally three years into adjusting, which makes talking to you, blog, more doable. 

So, I hope you are well.  Your sitemeter tells me that you have many visitors each day; it makes me happy to know that you have gone ahead with your life inspite of my not being here to help you.

Blog, my advice to you...

"Be good.

Be patient.

Be in the moment.

Be happy to have readers."

~MissNikkiAnn

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Preakness 137: The Contenders | 2012 Preakness

My bet is on I'll Have Another.

PP	Silk	Horse	Owner	Trainer	Jockey	Breeder	Morning Line
1		Tiger Walk	Sagamore Farm	Ignacio Correas IV	Ramon Dominguez	River Bend Farm	30-1
2		Teeth of the Dog	J. W. Singer	Michael Matz	Joe Bravo	Royal Pegasus	15-1
3		Pretension	Kidwells Petite Stable	Christopher Grove	Javier Santiago	Sequel Thoroughbreds and A. Lakin & Sons	30-1
4		Zetterholm	Winter Park Partners	Richard Dutrow Jr.	Junior Alvarado	Anthony Grey	20-1
5		Went the Day Well	Team Valor International and Mark Ford	H. Graham Motion	John R. Velazquez	James Patrick Delaney	6-1
6		Creative Cause	Heinz Steinmann	Mike Harrington	Joel Rosario	James C. Weigel	6-1
7		Bodemeister	Zayat Stables and Southern Equine Stable	Bob Baffert	Mike Smith	Audley Farm, Inc.	8-5
8		Daddy Nose Best	Bob and Cathy Zollars	Steven Asmussen	Julien Leparoux	Patricia Ann Elia Trust	12-1
9		I'll Have Another	J. Paul Reddam	Doug F. O'Neill	Mario Gutierrez	Harvey Clarke	5-2
10		Optimizer	Bluegrass Hall	D. Wayne Lukas	Corey Nakatani	Bluegrass Hall	30-1
11		Cozzetti	Albaugh Family Stables	Dale Romans	Jose Lezcano	Soc. Agr. Santa Elena De Chimbarongo	30-1

Preakness 137: The Contenders | 2012 Preakness