Friday, January 24, 2014

The Beginning

I have been contemplating a blog for quite some time. I read the blogs of people with dysautonomia/POTS and it helps my feelings of isolation dissipate. This isn’t a space for whining: it’s a space to interpret, fit pieces together, and make sense of how drastically my life changed over the last few years
Have you ever been just minding your own business and then one day woke up in a different reality? I read Kafka’s “Metamorphosis” in high school and it left a powerful impression on me. Kafka wrote it because of his own insecurities about being a burden on his family. I think about this story often because one day I woke up with a different body. It was actually a more gradual process than that but when I look back on what happened, it feels like one morning I slid out of bed in a grotesque body with a broken nervous system, never to return to my former skin.

In 2010, I made the dumbest decision a smart person could ever make: I decided to get a PhD in literature. My idealism was not proportional to my privilege or means, but that’s besides that point. My husband and I moved from California to Nevada to start a new life. We had never left home before, and it was a new challenging adventure for us. Moving to Reno wasn’t a smooth ride. My husband was in a serious motorcycle accident, and we both struggled to adapt to the new environment. Once I started coursework and the indoctrination into the academic industrial complex, I knew I made a mistake. I knew it on day two of classes. I love teaching and I loved my previous job teaching at a community college. The academic glory of spending an entire life dedicated to research only 7 people in the world are interested in wasn’t for me. As the stress of working 14 hour days seven days a week for months straight and the cognitive dissonance of pushing myself to “want” this dream, my health started deteriorating quickly. The timeline gets a little murky for me here. Ever since I was seriously injured in gymnastics and later a car accident, I haven’t been in good health. I got out of PE in high school because I was a broken, old gymnast at 13. I would later be diagnosed with fibromyalgia in college and battled some health issues and constant pain. But I still had a full life. I look at pictures of this former self—hiking, swimming, standing and talking, breathing without struggle, singing, traveling—in disbelief. In early 2011, I made some changes with my medications, had severe insomnia, and experienced more anxiety than a human can manage, but we’ll never know what exactly the catalyst was. The stress from getting a PhD won’t give you dysautonomia. They would need to put that in the brochures and provide hazard pay if that were the case. Dysautonomia was waiting for me at age 30 no matter what I would have been doing. By April 2011 something was very wrong. I was very dizzy constantly, shaky, suffering severe GI problems, losing handfuls of hair, weak, I lost 15 pounds. The details aren’t pretty and I’ll spare you. A low point at that time was crying uncontrollably in the library bathroom, but I doubt I was the first or last PhD student to do that.

In May that year, I went to the hospital one night because my heart rate went up to 170. My husband said it was probably higher than that actually. I had my first universal dysautonomia experience that night: the ER doctors told me I was having a panic attack, gave me an Ativan and some fluids, and sent me home. Almost every dysautonomiac experiences this. It’s a rite of passage. Even with a diagnosis now, if I had to go to the ER tonight, the same thing would probably happen. Going to the ER with dysautonomia is a precarious situation because they won’t know what it is and they’ll struggle to interpret your symptoms, often invalidating the patient by calling it a panic attack.  I put off getting doctors in Reno so by the time I was ill, I didn’t have any there I could go to. I set up an appointment with a primary doctor immediately; we’ll call him Dr. Z. I will discuss my adventures with that doctor at length later. He told me it was just stress. He offered me more pills and told me to just relax. 

The health issues continued that summer but I pressed on, determined to make it all work. I was teaching a summer class with a holter monitor attached under my clothes monitoring my heart rate. I was desperately trying to pretend nothing was happening. Once the fall semester started in 2011, things started to go downhill very quickly. The GI issues became so severe that I was unable to eat or leave the house comfortably, I was having trouble standing while I was teaching, and I felt extremely nauseous, tired, and ill all of the time. I couldn’t put my toothbrush in my mouth without feeling like I was going to vomit. Despite this, I was still struggling to get to my classes every day and teach two sections of freshman English. No one had any clue what was happening except that I looked emaciated. I remember very clearly the day I knew I could no longer live in denial. I was supposed to go to campus late one night to see a Geography professor to ask her to be on my committee. Before I left, I was home thinking “I’m not going. This is over. I’m done” I went to see her anyway, asked her to be on my committee, but I knew I would never see her again. I went home that night knowing my world had completely caved in on itself. 

A few weeks past and I was no longer able to move and I had lost 20 pounds over two months (I weigh 130). My psychiatrist, who I owe my life to even to this day, put me on medical leave, the day of my parents' 20th anniversary. That day was the lowest point in my life. I had no idea what was happening, but I knew the path I was on wasn’t sustainable. I emailed the graduate director in the department and all of my instructors. They were incredibly kind and allowed me to take incompletes. The college, however, promptly sent me a bill to immediately pay back all of my funding. 

I started believing that doctor, telling myself it was just stress and I would recover and get back to my life. But in my heart I knew the issue was much more profound than this. I was determined to get my life back. I made a promise to myself that one year later I would find a way to be happy and healthy again. I eventually finished my incompletes while completely infirm but left the program, I left my friends there, and I convinced my husband to move back to California. I couldn’t leave the house in Reno without being reminded of my former life, of feeling like a failure (a trait essential to academics), of trauma. I had started to make some progress with doctors there but not much. Right before we moved, I saw a second cardiologist who was the first one to really figure it out and not tell me I just was just a hysterical woman. I sat in that office on a very snowy, icy day with a blood pressure reading of 75/52 and resting pulse at 135. A few doctors had put me on medications that were making my symptoms worse. I’m still not sure how I drove myself to that appointment. The cardiologist said the words “autonomic dysfunction.”  I had some possible answers, and I had to make a new life. I packed my bags, my cats, my books and went home.
The adventure continued, which I’ll discuss later. I would go on to not work for a year and go to many many many many doctor appointments, submit myself to many many tests, and struggle to find an answer. Anyone who suddenly gets a chronic illness must look back constantly wondering “when did it start? how did this happen?” I look back on when this began with intense sadness. I try not to think about that time much, but recently new symptoms and issues are presenting themselves and I keep hearing “I don’t know” from doctors, so I feel a little lost on that ocean of illness again, rudderless and without a compass, as I did at that time. I feel desperately sorry for that girl that I was in 2011. I also look back at this time and feel triumphant. I honed an important skill during that battle that I still rely on every day: motherhumping, hardcore perseverance. When all hope is lost, persevere. Shine on another day.


  1. I'm very excited...I just found your blog!
    Thank you for taking the time to share your experience and information.
    I look forward to reading each post and sharing these wonderful resources!
    Maria Mongillo :)

  2. Thank you Maria! I do hope that it is helpful. It's very cathartic to write about it

  3. Yes! I have been trying to find a way to share my experience. I want others, with a chronic illnesses, to know that they are not alone in this fight. Even a medical professional (I'm a nurse), has dealt with misdiagnosis (Anxiety and "The It's all in my Head Phenomenon") and being dismissed by Doctors. I too, had to advocate for myself, especially when abandoned by family. Finally, my 4th Cardiologist was aggressive and pointed me in the direction of PoTS.
    His knowledge was limited and I did a ton of research and sought out Autonomic Specialists.
    I don't fault some of the doctors. I never learned about some of the chronic conditions in Nursing School. I've learned so much. I do have an issue with the ones who were not willing to learn and find the cause.
    I felt a great way to share my knowledge was to post on social media with hash tags. But, thought family would think those actions were attention seeking.
    So, I'm still uncertain how I can share. Brain Fog and other Cognitive Difficulties make it a huge effort to write. I found it easy to share links with information. I've thought about starting a social media page dedicated to sharing resources and articles.
    Anyway, thank you for sharing your experiences. It really does help with the loneliness. It's unfortunate to say, but it helps knowing you are not alone.
    Much Love and Appreciation, Maria


Comments are much appreciated!