Symptoms of Dysautonomia
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.
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.
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).
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.
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. ❤
SANTA!!! I KNOW HIM!!! I saw my main man Santa Claus at Duke Raleigh Hospital today– so cool! I sat in Santa’s lap for the first time ever…at age 20…in June. And it was awesome.. 🙂
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. ❤
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!