Showing posts with label Postural Orthostatic Tachychardia Syndrome. Show all posts
Showing posts with label Postural Orthostatic Tachychardia Syndrome. Show all posts

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."

~MissNikki-ICan'tFuckingBreathe-Ann

Saturday, April 21, 2012

My @Klout Perk: Go Red For Women

Miss Nikki Ann
Miss Nikki Ann rated a perk from American Heart Association
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“As a woman with heart issues (Cardiogenic Syncope and Postural Orthostatic Tachycardia Syndrome), I love wearing my pin to support the cause.”

Monday, March 19, 2012

Wednesday, February 29, 2012

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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A TinyLetter Email Newsletter
Or...go to http://tinyletter.com/MissNikkiAnn for more information.

Saturday, October 22, 2011

MissNikkiAnn Is Very Sick (cc: @OccupyHartford)



And though my mind and heart want me to be physically active with Occupy Hartford at the Turning Point Park occupation site, my Dysautonomia (a progressive and chronic illness) prevents me from doing so at this time.

I am with my fellows in spirit, and will continue to do what I can to support and further the work we are doing.  Occupy Hartford is an amazing and talented group of diverse people.  And regardless of the false image that Mass Media (not true journalists) wants to project, those within the cause know the truth.  And as the numbers grow, more and more we will begin to ignore the vanity of the media, and seek not their approval, but the approval of those wanting to delve deeper into the myriad of issues that are darkening the spirits of humankind.

Compassion and solidarity are the true answer, and if anyone tries to convince you otherwise, I'd take a closer look into that person's personal motive.

MissNikkiAnn, from her sick bed


*Unedited, so don't belittle my effort by looking for mistakes.

Wednesday, July 27, 2011

Caravan Adventures & HIIIIII by @MaricsBulletin

I love this personal adventure story told by my POTS (Postural Orthostatic Tachycardia Syndrome) friend Maricia (@MarcisBulletin on Twitter). Reminded me of my 20s!