Dysautonomia Awareness Month

October 08, 2015

Many of you know October as Breast Cancer Awareness month but what most people don't know is that it is also Dysautonomia Awareness month. Despite many people not knowing what Dysautonomia is, it is actually quite common. This condition causes your autonomic nervous system to not work properly which controls the things you don't think about, such as your heart rate, blood pressure, and breathing. 

I was diagnosed with a form of this illness in November of 2012. The form I have is Postural Orthostatic Tachycardia Syndrome, POTS for short. This is the most common form and 1 in 100 teens have this condition in the US. The main sign of POTS is when your heart rate raises a significant amount when you stand up. For a diagnosis, your HR typically has to raise 40 bpm when going from sitting to standing and for many, a big drop in blood pressure tends to go along with this condition as well. Other symptoms I experience included nausea, fatigue, dizziness, extreme sensitivity to heat, dehydration, brain fog, and high adrenalin levels. 

The brain fog is mainly due to blood pooling in the lower part of my body. My veins don't constrict properly to get the blood back up to my brain. When I got the test for POTS, I was strapped to a table which then is tilted up to about 90 degrees. When this happened, the amount of blood in my brain dropped by about 50%. So as you can imagine, that isn't very pleasant. 

If you follow me on instagram, I'm sure you have seen me mention Ehlers Danlos Syndrome (EDS) which is a genetic condition I have been diagnosed with. EDS can cause POTS and most people with Ehlers Danlos syndrome do have POTS. Most of the time, POTS will go away in your mid 20s but when it is caused by another condition, like it is for me, it will not go away.

The main treatment for POTS are saline infusions to help with the extreme dehydration caused by the illness. I started getting infusions in January 2013 and started off with one liter, once a week which then was raised to two liters once a week. Three years later, I am currently receiving two liters three times a week. I am on medications which help raise my blood pressure and lower my heart rate but I'm still very limited in what I can do. The worst part of infusions? The central lines.. 

I got my first central line in April 2013 and by February 2014, I was on my forth central line due to something always going wrong. All of those central lines were ports which go under the skin, typically in your chest, and are accessed by a needle. After my third, they decided to try one in my arm which then led to blood clots in my arm just six days after getting it placed. They were able to get rid of the clots without removing the line but on February 5th, I went to the ER due to sever chest pain and they found out I had significant blood clots in both of my lungs. Illnesses like these have cause so many indirect problems like the clots. After that port was removed, I got a hickman which is just a different kind of central line and it lasted quite a while! I only recently had to get it replaced.

As you can see, an illness like this is ugly. It doesn't care if you have to quit swimming, lose your friends, have to leave school, need a home health nurse, none of that. It takes away all of the plans you had for a future and you have to deal with the fact that this is your future. You just have to learn to make the best of it.

Although I hate my medical conditions, I wouldn't be where I am without them. They have made me who I am and they have made me love what I love. I definitely wouldn't be scrapbooking or card making if I wasn't sick. I wouldn't have been able to make a font for Becky Higgins, be on the Gossamer Blue design team or have the amazing scrappy friends I have! I wouldn't even have Clara which would mean we wouldn't know Clara's amazing trainer!

 I know that this illness is forever and that there is no cure but it doesn't mean it has to control my life. It is up to me to make my life what I want it to be. 


  1. I love your blog- and found you on Stamp enablers : ) I am a nurse and POTS is something I have never seen IRL, but am aware of it. What a path God has sent you down! Your amazing experiences will be a positive in the future- helping others : ) You are not alone either! Blessings to you

  2. I am in Stamping Enablers with you. saw your comments about the bright sweet 16 cards looking young. I decided to look you up on FB as you sounded interesting, and there are so few visible teens in any groups. I found where you mentioned Clara and the little girl touching her. I must sdmit I do ooh and aww over service dogs. I never realized it could disturb or distract the dog. I never touch one without asking. My husband, knowing I like animals so much, will often ask if I may pet them. I usually step back and say, "No," but the owners usually say it's okay. Thank you for posting your rant. People need to be more aware, and I am so sorry people are posing animals as service animals and making it harder for people who authentically need service animals. I also found where you mentioned your blog and followed the link you left. I have several auto-immune illnesses, but I hadn't heard of your illness. Thank you for explaining so well what your illness is like. You are a lovely young woman. I wanted you to know I appreciated your input in all these topics.