Sunday, 30 October 2016

Dysautonomia Awareness Month 2016 Guest Posts. Devon. Living with Dysautonomia in Rural Kentucky.


Next up for Dysautonomia Awareness Month 2016 is Devon who lives in a rural part of Kentucky in the US. It's been really lovely to share a lot rural voices this year. Whether it be here in Australia the US or any area of the world patients living in rural areas experience a lot of similar issues. Things like distance, lack of facilities etc can make life difficult when you're not ill, but add in chronic illness and it ups the ante. Thanks for sharing your story Devon. 



My name is Devon McCormick. I am a 33 year old female preschool teacher from southern Kentucky. I am not married, but I have a boyfriend of nearly two years. I was diagnosed 6 months after we started dating.
I live in a very rural area. We have a Wal-Mart, three red lights, and a Taco Bell. I live alone, but I have a very close relationship with my family. I was diagnosed in April 2016 with hyper POTS at Vanderbilt by Dr. Biaggioni. I was misdiagnosed prior to that. I also have asthma, chronic allergies, and NCS. I have been sick since March 2015. I have had NCS since I was 5.

[Devon pre-sick is pictured above. 
The picture at the beginning is of the is Devon once month after becoming ill.]

I am a rural Southern Kentucky girl through and through. I wear my pearls to my teaching job Monday through Thursday and Friday through Saturday its school colors or UK blue. Sunday is church wear. We say ya’ll and bless your heart as both a term of endearment and insult without batting an eye. Life was good and simple.
My town was so rural that the biggest event was the new Taco Bell opening up. The nearest mall was 70 miles away. I had big dreams but never wanted to leave. I am highly educated with a bachelor’s and double master’s degrees in education. The ability to drive and leave this town gave me the ability to become educated. I was happy to teach in the elementary school I attended. I wanted to be the best at what I did.
Life was moving along well. My career was going well, my family life was fine, and I was Miss Independent. My biggest dream was to attend Vanderbilt and get my PhD. One day, I fainted. No big deal, people faint all the time. I hit the floor. Something wasn’t right. I just couldn’t seem to rally back from this. It was the first time in my life I wasn’t able to come back from something. I have always overcame every hardship and yet something as simple as standing would knock me down. I had hit the wall.
Suddenly, I couldn’t work anymore. I couldn’t drive. My mom had to move in with me. She helped me shower, dress, feed myself, and even use the bathroom. I was fainting 20-30x a day. A simple tilt test would have revealed the answer. However, it wasn’t done correctly. My grandmother worked for an amazing cardiologist who saw through the misdiagnosis and gave me some medication that helped some. Thankfully I returned to work and my mom was able to return home. I was still weak and having seizures.
Finally, I saw a top notch neurologist at Vanderbilt. He then referred me to the autonomic clinic there. The correct tilt table revealed I had hyper POTS. A simple beta blocker taken three times a day and lifestyle changes began making such dramatic differences. After 13 months, I was able to drive again. I also started getting my strength back. I always said I wanted to go to Vanderbilt. I should have been more specific and said as a student and not a patient!

It’s been 15 months since POTS entered my life. I am not the person I was before. In some ways I am better! I am stronger. Nothing will stop me. I will push on and persevere when others will quit. I teach preschool full time. It’s exhausting for a healthy person, let alone a chronically ill one. There are days when I am so tired I can barely stand and am angry and sad. I question why this happened to me. However, I will not stop!

3 comments:

  1. Devon is a wonderful person she and my daughter DeShaie Jordan were best friend is school God bless you. God has a reason for this we may not know why but he dose.

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  2. I find your story inspiring! I was recently diagnosed with POTS, not sure which kind yet, I was lucky enough to have a cardiologist at the hospital I was at figure it out, so I will be seeing a specialist up at Stanford hopefully soon. I hope to get my life back, I have had symptoms since I was about 15 years old, I am now 31. I also have been experiencing debilitating side affects for the last year plus. I wish you nothing but greatness, and pray that I fight just as hard as you!!! Thank you for sharing!

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  3. Devon you said your first Tilt Table Test was administered incorrectly. How so? You said your second Tilt Table Test was administered correctly. How so? I am asking because I had one administered as well. They laid me down flat for 30 mins then tilted me up for 30 mins. I have heard that you will be tilted way backwards and also upwards. I am not sure mine was properly administered. I live in a small rural town in Southern Illinois. Please help

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx