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...

  Alternate Title: Let’s Get to the Good Stuff I still remember the cardiologist exasperatedly saying “why do they keep sending me these teenage girls?!” (I did not have a heart problem, thank God, and he knew it immediately.)  Unlike every other doctor I had seen up to this point, including the NEUROLOGISTS, this cardiologist knew exactly what my neurological condition was and I walked out of his office that day with an official diagnosis. In the car ride home, I cried tears of joy. (And it was a long car ride home.) It was a real thing, a thing that other people had, I wasn’t crazy, I wasn’t completely alone! I made myself carsick reading his notes over and over again and researching everything on my phone. He advised me to join an online support group and find other girls with the same condition. (That’s right - GIRLS. More on this buffoonery later.) I immediately found a support group in the car and learned what a “spoonie” was. Spoiler alert: I was a spoonie. I had so ma...