"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):

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.

Chronically Ill PJ Party 4!

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome, a documentary

MissNikkiAnn's Life

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The Misadventure of MNA: Audioboo and Magnesium Citrate

The Misadventure of MNA: I Hate Hospitals

I spend way too much time at hospitals and doctor appointments.  Tuesday through Friday are designated hospital and doctor days.  Thursdays I am in the hospital all day.  Tuesdays are ALWAYS double-booked with doctor appointments; and so are half of my Wednesdays.  So imagine my horror yesterday when I was in the hospital for my weekly infusion, only to wake from a wee nap to find out that I was being carted over to the emergency room. 

From what I understand, my nurse got nervous after having given me a big gallon enema that NEVER came out.  I am used to enemas entering into the land of no return; I'd told my doctors and nurses about how, when I do them at home, they NEVER come out, and that if the do, it'll be 24-hours later.  I guessed no one believed me...so they panicked when witnessing it happen.

In the emergency room, I was given another bottle of magnesium citrate (cause I'd already had my two helpings of Miralax that morning, and my other helping of an entire bottle of magnesium citrate the day before. I've been alternating the two laxatives for two weeks without relief.) and another gallon enema.  Guess what?  No shit.  And by this point I'm getting sicker and sicker because I was in need of the infusion that had ended abruptly.

Two doctors wanted me admitted.  Another doctor was a straight ass.  Guess who got to assume power over the situation?  The ass.

I will say no more.

"Be good.

Be patient.

Be in the moment.

Don't Be An Ass."

Cordially,

MissNikkiAnn

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I'm Feeling Some Kinda Way About Poop

MissNikkiAnn: Coping with Her Life

2012 Hell? (for my fellow Spoonies!)

TMI

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