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.