Tagged Autonomic neuropathy

Air travel

I use to travel, a lot. Multiple times a year, different countries, long trips and short trips, all of which I did with relative ease. I started traveling at a very young age, the simplicity and near-comfort that I felt with the entire airport routine (regardless of my location) has been a part of my identity for most of my life. From being the one who knew all the tips and tricks for getting through different airports quickly to feeling elation at landing in every new city, I reveled in the energy and unexpected adventures of frequent travel.  With my…

Losing my face

It would be a lie to say that how I look doesn’t matter. Pretending that we aren’t all judged immediately through passing glances and in-person meetings. Claiming that pictures aren’t scanned by thousands of eyes searching for every perfection and, more eagerly, every flaw. I know this. Everyone knows this.  It’s a world crammed with warring messages, “Everybody is perfect!” and “Plastic surgery is at an all-time high!” “Love your body.” and “Eat less. Exercise more.” You are told that you will never look good enough, but you pretend that you think you are perfect. Fix your face with filters,…

Just a little movement

I didn’t realize that I was athletic until I got sick. Playing outside everyday and having sports integrated into my life was something I took for granted. I grew up in a rural place where there weren’t professional or academic sports teams. Everyone was just always outside doing activities. My dad grew up playing organized sports so our weekend, holiday, and after school activities always included tennis, volleyball, swimming, surfing, fishing, baseball, basketball, etc. As I grew older, my sports hobbies took a backseat to everything else. But, I could count on my athleticism to make me comfortable and useful…

When they ask, “What’s wrong with you?”

My officially diagnosed conditions and their medical definitions are as follows:   Ehlers-Danlos Syndrome (EDS) – Hypermobility type: “A group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications”. National Institutes of Health Postural Orthostatic Tachycardia Syndrome (POTS): “Postural orthostatic tachycardia syndrome is a condition that affects circulation. It involves the autonomic nervous system and sympathetic nervous system”. Cleveland Clinic Gastroparesis: “A disorder that slows or stops the movement of food from your stomach…