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

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Drop me a message on YouTube (MissNikkiAnn)

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~MissNikkiAnn

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

To MissNikkiAnn

I am humbled.  I love Doctor Susie!

What Dysautonomia Looks Like: MSA Awareness

Click to read Facebook Group Fights to Create Awareness for Rare Neurological Disease

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Shit the Chronically Ill Say

This is my dear YouTube friend @debradebbiedeb.

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What Dysautonomia Looks Like

I know this wonderful woman.  And guess what?  She is a medical DOCTOR.  And guess what?  Despite that fact, she received the same bad medical and psychological treatment that most dysautonomics face on their journey.  Sad that a documented illness is unknown by the majority of those in the healthcare field.  Help us to end the ignorance.  Many of us are dying while doctors sit around scratching their heads, or more commonly, throwing in the towel.  Guess what Elvis died of?  He had dysautonomia and died from a typical complication that goes with it.  You can also add Tammy Wynette to that list and most recently Brittney Murphy.  And then there are my internet friends: gone.  Help us.

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What The Hell Is POTS? by Twitter's @eklayre

Honest to God, this happens to me all the time. ALL THE TIME.

MNA: The Voices of Dysautonomia (newsletter, 2nd issue)

The second issue is now available, please enter your email to subscribe or visit the following link for more information: https://tinyletter.com/missnikkiann.

*FYI: If you do subscribe, be sure to check your email's SPAM folder, as the newsletter may be dumped there by your email provider.

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MNA: The Voices of Dysautonomia Newsletter

I enjoy sharing my humanity through whatever talents I am lucky enough to have.  And with that being said, I present to you various highlights of those living with or dealing with Dysautonomia and its various syndromes, disorders and symptoms.  Hear the myriad of voices of those overcoming difficulties of chronic illness and invisible disability, like me! 

Subscribe to MNA: The Voices of Dysautonomia

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A TinyLetter Email Newsletter

Or...go to http://tinyletter.com/MissNikkiAnn for more information.

Dysautonomia Book... "No More Tears" Reading I: Author Note & Author's Thanksgiving (book by @DysautonomiaMD)

A book written for fellow dysautonomics, by a doctor living with dysautonomia.

MissNikkiAnn Reacts to @POTsieChik's "Visit with Doctard Shirley Inowzit...

Visit with Doctard Shirley Inowzit-Yudont

Dysautonomia Awareness

I Am.

That I Am is not sick.

My mind.

My mind and body.

My mind and body, that they are, are sick.

~MissNikkiAnn, Fellow Dysautonomic

Chronic Illness and @OccupyHartford @OccupyWallSt

As a Chronic/Invisible Illness Sufferer, I Need These Movements (cc: @OccupyHartford @OccupyWallSt)

Oct 8, 2011 | Source: Keek.com

Breast Cancer? But Doctor....I hate pink!: I owe you an apology

*Click the link to be taken to the author's full post.

Breast Cancer? But Doctor....I hate pink!: I owe you an apology: "I started this blog a couple of years ago for a few reasons. The first has to do with sleep, a recurring theme 'round these parts. I have ..."

Dysautonomia

Just another day of phone calls..... not rich? not insured? good luck!

This is the American health care system at its worst.

Got POTS? I Do! -- Day of Visibility 2011

Got POTS? I Do!

Day of Visibility

Sarah (@potsiemommy on YouTube) is a fellow Dysautonomic & POTS patient. She's an awesome mom, wife, daughter, sister, friend, singer and flutist. I admire her strength for making this video.