Tuesday Infuseday

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Syncope

Hanging off a ledge,

   The aching hole beneath my dangling feet

is waiting to devour me.

I try to scream, but my breath is caught

   as my fingers curl

     around slippery thoughts

     and jumbled words

and suddenly I’m falling–

   tumbling faster and faster

into the abyss

         until

       nothing.

Dysautonomia Awareness Month: Day #5

Fact: Young adults with Dysautonomia often face such severe symptoms that they are left tragically ill and socially isolated during the prime of their developing lives. Because the symptoms of these conditions are often invisible to the casual observer, most Dysautonomia patients don’t look sick. This tends to lead to a lack of understanding and support for the person suffering.

Dysautonomia Awareness Month: Day #2

Fact: A type of Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS) is estimated to impact 1 in every 100 teens before they reach adulthood.  There are an estimated 500,000 to 1,000,000 people living in the United States alone.  While the majority of those afflicted are young women, POTS can be found in all ages, genders and races (Dysautonomia International).

October Is Dysautonomia Awareness Month!

What is Dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, temperature regulation, etc.

The Autonomic Nervous System
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Ribbon for Dysautonomia Awareness at Duke Raleigh Infusion Center
Stronger Than Dysautonomia
Stronger Than Dysautonomia!

More Like Falling In Love

From August 25, 2015.

Had moved into apartment all by myself, while really ill, and the place was trashed.

It was trashed BEFORE I even moved in, because my mother asked them not to clean or paint (because I have Multiple Chemical Sensitivities). There was literally blood smeared around the bathroom and nasty stains on the carpet and goodness knows what all over the walls and desk.

Worked really hard to get it together- again, BY MYSELF! – despite my health and my body’s objections. Took me hours (though the time-lapse makes it look like seconds!)…but I did it. I needed my room to be a place where I could think…study…breathe…function. And I had a lot of people to prove wrong.

As of now (9/7/15), the room looks COMPLETELY different. It is beautiful and matches and the carpet is even scrubbed and new-looking. It’s even organized 🙂

The point of the beginning of this video?

I overcame everything and did what I needed to do…turned the pain into power…and was successful. Was the room perfect? Not even close! But did I make a lot of progress? YES.

Difficult does not equate impossible.

Small victories are still victories. 🙂

My New Ride

In May, I was blessed to receive a power chair to aid with mobility. It is red and black (Go Pack!) and actually really cool.  I’ll admit, I’m still not 100% comfortable being seen using it.  Yes, I know that seems a bit shallow.  It’s really not that I care about what people think of me or my disability–  I am not ashamed to use it around campus or in class or downtown.  I am, however, a bit embarrassed to use it on the always-crowded bus.  There, I take up a full row of seats and, because of me, people must stand.  I just feel guilty- as if I’m a burden.  Not sure how to solve that.  Anyway, here’s a little look at my new ride. 🙂