Dystonia

https://www.youtube.com/watch?v=F93z-6a36d8&feature=youtube_gdata_player

Dr. Steven Sinatra on Wireless Technology's Radiation Leading to Ill Health

https://www.youtube.com/watch?v=Xs2nF1LLt0Y&feature=youtube_gdata_player

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)

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DM me on twitter (MissNikkiAnn).

~MissNikkiAnn

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.

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

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

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

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...

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."

Another Dysfunctional Dysautonomic Spring and Summer

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?

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!

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.

MNA Speaks: From Lent to Easter

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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Chronically Ill PJ Party 4!

Shit the Chronically Ill Say

This is my dear YouTube friend @debradebbiedeb.

Published with Blogger-droid v2.0.4

Chronic Illness: The Truth Behind The Smiles

This is my story,  too. And the story of my friends.

Published with Blogger-droid v2.0.4

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! 

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