Tuesday Infuseday

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Dysautonomia Awareness Month: Day #3

Fact: The majority of Dysautonomia patients- specifically POTS patients- are hypovolemic, despite adequate hydration.  Standard blood and urine tests may not always detect this hypovolemia, as the patient is typically deficient in plasma and red blood cells.  Blood volume analysis with a radio-tracer can be used to evaluate a POTS patient for hypovolemia (Dysautonomia International).


Hypovolemia, or low blood volume, is a daily struggle for me.  In order to combat this issue, I receive two to four liters of IV Saline each week, as well as push a liter or more of water and Pedialyte through my j-tube each day.

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
Ribbon for Dysautonomia Awareness at Duke Raleigh Infusion Center
Stronger Than Dysautonomia
Stronger Than Dysautonomia!

Last Few Days Tube Free…


On Monday, I am having surgery to have a GJ feeding tube placed. I will officially be a Super Tubie like so many of my beautiful fighter friends.  I am nervous (to say the least), but I am very excited to gain back some weight and strength. Rough infusion today as I randomly started vomiting and then had a full-blown dystonic reaction– humiliating. But I love my infusion nurses and the amazing volunteers here! Mrs. Paula gave me this little bear and a hug and told me she has been praying for me. Really helped my heart and made me smile so big! Things have been difficult and scary lately, but I am so incredibly blessed. ❤

Infusion Center Love

Had my infusion at Duke Raleigh Cancer Center, and guess who was there?! Meet Hummer- one of the prettiest, most intelligent and most intuitive service dogs I’ve ever been blessed to know. ❤

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He’s gonna be retired soon because of an eye disease that’s slowly stealing his vision, so I wanted to make sure to definitely get a picture with his sweet self. Love this boy!