Abbreviations and Terms

Before I delve more into my story I thought it was important to give you a list of important terms and abbreviations that I may use as I write. Hopefully this will help make understanding things a bit easier.

~ Dysautonomia- this is the dysfunction of the autonomic nervous system. Your autonomic system controls many of the body’s functions that you do not think about. Some of these include blood pressure, heart rate, digestion, adrenaline secretion and nerve function. When the autonomic nervous system does not work properly any or all of these things, and more, can be impacted.

~Hyper POTS- Hyper stands for hyperadrenergic which is an overactive adrenergic (or adrenaline) response. POTS stand for Postural Orthostatic Tachycardia Syndrome. The diagnostic criteria for POTS is heart rate increase of more than 40 bpm or a heart rate of over 120 bpm upon standing. For me this means that when I stand my norepinephrine levels nearly triple and my heart rate increases quite a bit which can often cause me to pass out. For me the high adrenaline levels also often cause headaches, dizziness, and shakiness.

~Syncope- This is the medical term for passing out. When I refer to a syncopal episode it just means that I passed out.

~Gastroparesis or GP- This is the paralysis of the stomach. For me this means that food takes anywhere from 11 to 24 hours to empty out of my stomach (as opposed to the normal time of 2-4 hours). This causes bloating, pain, nausea, and often vomiting.

~G-tube and J-tube- These are types of feeding tubes that are surgically inserted into the abdomen and end up somewhere in the digestive tract. G and J are the specifications of where they end up. I G-tube is a gastric tube, which means it goes into the stomach. A J-tube is a jejunal tube, which means that it goes into the jejunum (part of the small intestine).For me I use my G-tube to drain my stomach (instead of vomiting) and my J-tube to receive nutrition in the form of tube feeding.

~Spoons- The use of the word spoons and Spoonie stems from Spoon Theory which was created by Christine Miserandino. She explains it much better than I can but it is essentially a way to measure energy for the chronically ill using spoons as the unit of measurement. Chronically disabled individuals will sometimes refer to themselves as ‘Spoonies’ and will say things such as ‘I don’t have enough spoons to do that today’ or ‘today I have a few extra spoons’.

As always, if you have any questions about any of these terms or any other term that I may use you are welcome to ask!

Welcome!

Hello! Welcome to my blog. This is a place where you can learn more about my medical journey and follow along with my health ups and downs.

I want to start by briefly introducing myself (for those of you that don’t know me). My name is Kelsey and I am 26 years old. I live in Oregon with my family. Over the past 6 years I went from being a medically ‘normal’ adult, living a life that I loved (working with animals) and starting to figure out who I was as an independent person, to being a disabled adult who struggles daily with many health issues and has little independence. I am now almost completely dependent on a feeding tube and have syncopal episodes multiple times a day. I also struggle with migraines, extreme fatigue, autonomic neuropathy, depression, anxiety, and the long term effects of malnutrition.

I have been talking about starting a blog for a while and in the spirit of Dysautonomia Awareness Month (October) felt that there was no better time. I would like to use this space to share what the last six years have been like for me and to continue to share what it is like to live in a body that constantly fails you. I plan to keep people updated on the day to day and to also be really open and honest about how difficult each day can be, both physically and emotionally. I am hoping that blogging will be a way for me to share my journey with others and to find my voice in this time of struggling.