MissNikkiAnn Is Adamant (contains explicit language)

MissNikkiAnn's Spreecast: My Body Wins

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."

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

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

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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Operation Mass Media Boycott, Day 1: Cannot Trust Every Doctor

I thought this video very fitting being that it's about reclaiming one's life; as we reclaim our choices/time/resource. It all goes hand-in-hand, taking back your mental freedom, which affects your physical reality. We are natural consumers who have been manipualted by a media of cannibals. I am not here to preach against garbage consumption--you have free will. I just want you to be able, if you "choose," to see garbage when it's being handed to you on a faux, platinum-plated dinner plate. Just take a closer look at it, marinate on matters and reheat the garbage in the morning (that's what we have radiation for) eating in full pleasure and consciousness.

Watch "Cannot Trust Every Doctor" on YouTube

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

This is the American health care system at its worst.

We're sick. We're broke. We're American.

Not a single person is exempt from the inexplicable. Sometimes this is the kind of story that life hands you. How do I know? I'm living proof.

Be good.
Be patient.
Be in the moment.

~MissNikkiAnn

I Need Your Help

Intravenous (IV) Fluids Matter

Dysautonomia

Quick, basic explanation of Dysautonomia and what it feels like to the patient.

Doctor's Referral Site by dysautonomiaMD

This wonderful woman is a DOCTOR with Dysautonomia. Her advice has been of tremendous help to many and countless other Dysautonomia patients.

Waiting Through The Mini Stroke

I am pretty sure I am suffering a mini stroke again. It's been a year since my last one.

Took my Bayer aspirin.

"Now what?" you may be asking.

Nothing.

"Why?"

The strokes don't last long enough.

In the past I'd have mom bring me to the emergency room. But ask any Dysautonomia patient about E.R. visits and you'll quickly learn that they are more of a harm than help to us. The average E.R. doctor has never heard of Dysautonomia and doesn't know what to do with us Dysautonomianites when we showup at their door. Even more, some despise us because we represent their worst fear: an undiagnosable patient. They are often rude to us, trying to convince us that we are perfectly fine, in order to save face.

But one thing perplexes them. As soon as we go to stand up and our pressure plummets and heartbeat races and we faint...they are forced to run a battery of tests that lead them back to where they started: Freshman in medical school...confused...afraid to admit that they just don't have an answer.

Now you've wasted an entire day and night, and you go home kicking yourself because you already knew the outcome; you've lived it too many times before.  And now the mini stroke has passed. Gone undocumented. Gone untested. All because no one took you seriously.

The only problem, as one of my neurologist told me almost two years ago:

"Mini strokes are basically harmless. That is...until you've had one too many."

And how am I to gauge if/when I've had one too many?

I can't.

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