Monday, July 30, 2012

Sleep? Study

You know just about how much sleep I was able to get with all of this going on.

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Sunday, July 15, 2012

Nostalgia: LET'S GO! Jamming to "A Tribe called quest - 'Scenario'"

This is one of Sir's (my 7-year-old) favorite songs.  Today I read the lyrics to him, explaining the history of the "retro" lyrics.  His favorite lyrics are from Busta Rhymes, which is no surprise since most hip hop lovers favored those infamous words that placed Busta in a position to bring pain to the world of hip hop.  Awesome stuff!

~MissNikkiAnn, "let the rhythm hit you"

*Clicking the above link will take you to another site that I have visited personally and did not suffer and consequences (viruses), but you must always use your own judgement about leaving my "safe" page to view any of the links that I have posted.

Tuesday, July 10, 2012

Shit...I Can't Breathe!

I am here.  Just trying really hard not to go under.  The doctor/hospital/testing schedule of the chronically ill in America is very time-consuming and is equivalent to a full-time job with overtime and no benefits.  I literally am never home because of doctor appointments, infusion appointments and tests (lab work, x-rays, scans...blah blah blah).  I point out the phenomenon as an American Epidemic because in other countries the sick receive most of their attention and care at home (even some tests and lab work).  I do believe that such a way of treatment can be a positive to the mental/emotional/physical state of the patient.  Some folks have a vision of the chronically napping and shit.  I can assure you that I do not nap, that when I do it is because I am lacking in enough oxygen to function awake.  I literally mean that my body forces me to sleep because it does not have enough input (air) for output (activity).  The item I am holding in the above picture is an incentive spirometer, which exercises my lungs.  Yup, lung failure and diaphragm weakening all around here. In the matter of a week, I went from no breathing aides to 3 inhalers and this here spirometer; and have gained myself an (in-home) sleep study.  

I just do not breathe much without having to tell my body to do so.  Do you get that?  Breathing is a component of the autonomic (automatic) functioning of the body, so a normal body breathes without the person having to think about it.  Not for me, I spend my day "making" myself breathe.  And at night?  Well, that's the problem.  It's one thing to expend mental and physical energy during waking hours to monitor breathing, but at night...well, let's just say that death during sleep is one of the standard demises for dysautonomics like myself.

But I must take my leave.  Why?  A doctor appointment.  So surprising!

"Be good.
Be patient.
Be in the moment of your breath if it works for you automatically."


Wednesday, July 04, 2012

FANTASTIC FIVE YOU TUBERS: @MissNikkiAnn Made TuckerZone's Cut!

Nidge is a wonderful guy and a great supporter of YouTube's chronically ill community.  He is a rare and much appreciated find, talented and compassionate.  I feel blessed to have been spotlighted on his vlog.