Autonomically Isabelle

Alternate Title: I Don't Remember I am going to take a break in the narrative to explain a huge issue that has gradually overtaken my life.  Pain and fatigue were the two major issues I was facing at this point in my life, but there was a third that had been pushed to the backburner, until it became impossible to ignore. For context, I used to be a star-student, would fly through a chapter book every day, and passionately loved to read and write. I aced English every year and it was my favorite. I was writing my own fantasy novel, journaled often, and even had a poetry series that I worked on for fun. I was a highly intellectual student who thrived on a good report project or debate topic. Now, I feel like if I went back to school, I would cry every day. I have abandoned all my writing projects because I can’t do them without massive frustration. I can never find the words to say, and my family gets frustrated now listening to me trying to talk/tell a story because the words I want...

Alternate Title: It Gets Better! But Wait, It Gets Worse As it turns out, some girls grow out of their major dysautonomia symptoms. As it also turns out, I am one of those lucky ladies. I still struggle with orthostatic hypotension and heat flashes and whatnot, but not to the same extent I did before. I can get out of bed in the morning and be fine, I just can’t do crazy things like… bend down on purpose. My head still has to stay over my heart, but I became a relatively normal-functioning person. I can’t pinpoint exactly when it happened, as it was gradual, but at some point I just…got better. I stopped walking with mobility aids. Later, I was able to go off midodrine. It was a miracle.  I don’t even know if I truly realized how well I had become until I became super constipated and fainted off the toilet again. Then I realized, wow, I haven’t done that in a really long time and have actually taken this entire time for granted, and wow, that really sucks even more than I remember...

Alternate Title: The Part I Mostly Want To Gloss Over, But I Really Want This To Be Chronological  Upon admission to the neurological clinic, I was quickly started on a medication called midodrine, which kept my blood pressure up throughout the day. Midodrine is in a class of medications called alpha-adrenergic agonists, which work by tightening blood vessels (thus raising blood pressure). I had to be careful not to lay down for several hours after taking it, or else my blood pressure could get dangerously high, which is a problem I really didn’t expect to be having back then. I had a bottle at home, one for out in public, and the school nurse also had it on hand, and came to give it to me every day at lunch – but was also on call whenever I needed it. That’s right, only the REALLY cool kids get to text the school nurse. We were pals. She would give it to me, stand there and make sure I actually took it, and then we would both watch in anticipation as I took my blood pressure with ...

Alternate Title: Isabelle and the Terrible, Horrible, No Good, Very Bad Day Most 17-year olds dream of…….well, I don’t know what anecdote to use here, because all I thought about was the day I would finally get back into the neurological clinic. Like a really snazzy teen might.  The day for my autonomic testing finally came on August 21, 2018. My mom and I were on the way bright and early at 6am. I was way too sickly-nauseous-nervous to eat (plus, is anyone actually hungry at 6am?) and fidgeting the whole way there. I remember talking to someone in the waiting room who had also had this testing done before and told me there was nothing to worry about. Reader, she LIED. I left the clinic that day ugly crying in a wheelchair.  After what felt like an eternity in purgatory, I was called back to a very small room that I was about to get very well acquainted with. I laid down on a completely flat table while my mom took a seat in a chair next to it and the nurse hooked me up to all...