Wednesday, January 7, 2015

The Beginning, Again

I am experimenting with narrative in this post. One of my goals with this blog is to mentally fit the pieces of the strange adventure I have been on together. This is an extension of my very first post and a look at how this crazy ride started:

“You didn’t have a heart attack. You can go back to school.”

Those words came after many appointments and discussions with Dr. Z, who had offered an embrace after every visit while promising his support. He was a young, handsome doctor who wore a sharp blazer instead of scrubs or the conventional khakis. His office staff always looked ready to go to a club after work. I was convinced the girl who prepared the EKG for me every visit was younger than my college students.

I had been seeing this doctor for months and had just informed him that despite the many times he answered my litany of symptoms with comforting suggestions that everything I was experiencing was “stress,” I had no choice but to leave my PhD program and stop working. I was unable to keep food in my body, I couldn’t safely drive because of the dizziness, my heart rate never dropped below 100 bpm, I was unable to stand, I had lost 15% of my body weight. What other choice did I have? I wanted to believe him, but these were the facts.

I actually initially liked Dr. Z. I made my first appointment with him out of pure desperation.

My husband and I moved to Nevada in 2010 so that I could start working on a PhD in literature, a goal I had been working towards for many years. The winter of 2010 had record snows in Nevada, and January of 2011 started out icy and cold. My husband and I adapted well to living in the snow and I actually liked when it was below 10 degrees in the morning and I made the long trek to the department to teach my freshman composition classes. The cold wrapped around me like a frosty breath, and the snow muffled the grimy bustle of Reno. It was almost beautiful.

I was working toward my second year as a PhD student in 2011, a time to really choose a path that would define my academic career. But something was wrong. I could feel it in my bones that something was wrong.

Constant headaches. Entire nights without sleeping. GI issues making it impossible to leave the house. Exhausted. Dizzy. Working on a PhD will bring out or aggravate any latent health issues. It will wear your soul thin. I was starting to think what I was experiencing went beyond the stress of the academic life.

I was an old, injured gymnast at 14 and then was seriously injured in a car accident at 21. When I was 25, I was diagnosed with fibromyalgia and started living with constant migraines. I’ve never been in the greatest health, but I always managed to never let it hold me back.

But this felt different.

I was trying to push it all to the side and keep my head above water. One memory stands out in the blur of early 2011. My university hosted a group of famous scholars, and all the grad students were gathering to attend the talks and meet them. I remember standing at the desk I shared with two other TAs in the basement of the English department unable to focus on anything because everything was spinning. I knew I was going to throw up from the dizziness. I could hazily detect someone in the background asking “Are you coming?” I walked the half mile back to my car and drove home.

I had to miss some of the classes I was taking and some I was teaching. All my life, I never called in sick to work. Never. No matter what I was experiencing, work was always a top priority. This wasn’t me.

Another memory stands out. Because all events in graduate school and academia seem to revolve around alcohol, one of my professors decided to hold our last class meeting in May at a restaurant so everyone could get wasted. I showed up but didn’t drink. I remember sitting across from my friend and trying to laugh and joke with her but the whole room was spinning. My professor had a drink that was an entire bowl of liquor, designed for multiple people. He finished it by himself and ordered another. Most of the grad students left the restaurant to walk to everyone’s favorite bar to continue the party. I had my husband pick me up because I didn’t think I could drive from the dizziness.

Two weeks after this I ended up in the hospital. As is often the case in my life since getting ill, the semester ended and I had collapsed into a puddle of sickness. My husband went to bed early one night because he worked at 4 AM every day, and I walked into our bedroom shaking and weak. I told him something was wrong. He felt my pulse and called his mother who is a nurse. We drove to the hospital.

They clocked my pulse at 175 when we got there. If you ever don’t want to endure the long wait at an ER, show up with a raging pulse. You’ll be fast tracked to a room and a CT scan.

The young doctor came into my room and I explained the bizarre symptoms I had been having, and he handed me an Ativan. I was dehydrated from the constant diarrhea. After an IV and hours of resting, he looked me in the eyes and said, “You had a panic attack. You can go home.” I know now that even with a diagnosis, many POTS patients are often told they are having a “panic attack” by ER staff. I didn’t know any better then.

Days after this, I couldn’t lie on my back anymore in bed because my heart was pounding so hard that I couldn’t comfortably sleep. This is normal, right? No, this isn’t normal. But, am I wrong? After leaving California, I had neglected to make appointments with new doctors unless I desperately needed medication refills. When you’re taking three classes, teaching two, and working seven days a week to keep up, there is no time for managing your health. I let it slide. I was busy.

After the ER visit, I made an appointment with a primary doctor everyone recommended, Dr. Z. I wanted to see some specialists. He instead told me, “I can manage this. Don’t worry about it.” I wanted to believe him.

The medication I had been taking for years for migraine prevention was causing tachycardia suddenly. He had me stop that med and start another, which also made my tachycardia much worse. After many visits where my vitals were always anything but normal, he finally referred me to a cardiologist.

This cardiologist had an unpronounceable name. I checked in to his office and as I sat down I saw the office attendant lean over and comment to another attendant about how young I was. Being the youngest person in the waiting room to see specialists is common now, but it terrified me then. That cardiologist told me “it’s just stress. Stop drinking coffee.” You can’t stop coffee if you’re a grad student. That’s a death sentence. I would wake up in the morning that summer and take my pulse. The monitor would show 140 bpm and I would roll my eyes and then drive to Starbucks.

He ordered an echocardiogram, which was my first experience with disturbing medical tests. A nurse pressed sound waves into my chest and I stared at a monitor inches from my face that intimately and vividly displayed my beating heart and veins. It was like an initiation ceremony into the many medical tests over these years and the ever-constant reminder of my own mortality and vulnerability. It was the beginning of a glamorous life as a lab rat. I have a poem about it here.

There were some good times during this mess. That summer, my husband and I got a few hikes in, including one in Tahoe with some close friends. One of them lost his glasses in Lake Tahoe and we spent the day searching the murky waters looking for them while laughing. I was teaching a summer class with underprivileged high school students who wanted to earn college credit early. I was ill and wearing a heart monitor under my clothes while I was teaching, but that is still one of my favorite classes I’ve ever taught— probably the most rewarding. My husband and I saw the re-release of The Lord of the Rings in the theater. In a packed theater of fellow nerds and grown men in homemade chain mail, we communally cried through every bit of it.

These happy memories are filled with color and vibrancy that contrast the other memories of that year that are a grey haze. I didn’t know then that my days of hiking were coming to an end.

Summer ended, fall semester started, and I pushed all the health stuff to the side so I could survive another semester. Yet, by the end of October I had gone from 135 pounds to 116. I was unrecognizable. Handfuls of hair were coming out of my head. I was still trying to show up to my classes and to teach. All of my time was reserved for that, so I couldn’t find time to fit any appointments with doctors in. I felt powerless, hurtling toward disaster.

I emailed the head of the grad program on November 2nd to tell her I had to go on leave. My psychiatrist, the only doctor who took me seriously then, gave me the note so I could go on leave. I should be sending her flowers every month still.

I won’t lie and say I enjoyed working on the PhD in literature. In fact, I had already been contemplating leaving.  I had been initiated into a world that was incongruent with my real desires. I’ll reserve my true criticisms of it to say only that in that world you pledge your fealty to an academic plutocracy who throw mere crumbs of glory for every ounce of 70 hour work weeks and neglected relationships you put in. That glory becomes something of a drug, a drive for validation. I learned the real meaning of “diminished returns” doing that work. There were many times I wanted to stand up and have a Fiona Apple moment, proclaiming that "this world is bullshit."

But I got out. I feel like a cult victim sometimes looking back, thinking “what kind of screwed up mind game was that? What were those bizarre rituals? How many sacrifices did I participate in?” Some people are well-suited to academia. More power to them. All I wanted was to get back to my real love—teaching—where I could see the fruits of my work in my student’s lives, without the distraction of pretending to be a scholar.

After I finished my MA in 2008, I taught as an adjunct at two community colleges. My plan was to take time off and apply to PhD programs with the ultimate goal of teaching literature at a state college, where I could bask in the splendor of teaching and research. I was a bright-eyed, newly-minted MA thrown full force into the life of adjunct. I learned that I had a real passion for working with developmental classes (below college-level). I enjoyed teaching despite the grueling life of an adjunct and driving 150 miles a week commuting between the colleges. I had a new plan: get a PhD and teach full time at a community college. That was my dream scenario.

So I focused on studying for the GREs and preparing applications as I was teaching. My entire life, I have always been preparing for what’s next. I have never felt wholly invested in anything because I was preparing for some determined, carefully planned future. If illness has taught me anything, it has taught me that a “carefully planned future” is an illusion. Life makes other plans and you have to roll with it, but I hadn’t learned that lesson yet.

I look back at this time between 2006-2010 as some of the best years of my life, but I regret not being more present. I had a rewarding job, my husband and I were hiking all the time, I was surrounded by my friends and family, I was playing music and performing regularly. But I relented to the nagging “what else?” that looped in my brain. Ambition is a vehicle that delivers you to your goals but it can also blind you to a fulfilling present. I had no idea that my days of enjoying those passions were going to violently end. If I had known, I wouldn’t have wasted the last of my pre-sick days in grad school. Some of my bitterness about grad school stems from this hindsight view, but I’ve tried to learn lessons from lamenting lost time.

When I left the PhD program in November 2011, I started an arduous journey through the absurd labyrinth of the medical system. I rejected my primary and my cardiologist’s assessment that all I was experiencing was “stress.” I started a two year cycle of going from specialist to specialist looking for answers.

In total, I have seen four cardiologists, three neurologists, three gastroenterologists, two endocrinologists, two dermatologists, one rheumatologist, two primary doctors, two psychiatrists, two psychologists. There’s more, but that’s what I can remember at least. I should turn this list into a “12 days of Christmas” parody and call it the “12 Referrals of Illness.” I would have 3-5 appointments a week during this time, which was grueling while I was ill.

One of the buildings I had to visit regularly for appointments made me uncomfortable. Even the sight of it right now would make me shudder. Walking into it, you would suspect the building was surrounded by Dementors. I was always the youngest patient in that building by at least 30 years. One day while riding the elevator up to the second floor, a young UPS driver got into the elevator with me. As the door closed, he leaned over and said, “coming here always makes me really scared to get old.” I was thinking the exact same thing at that moment. My husband swears he had a zombie encounter in one of the waiting rooms while I was in an appointment. I had entered a disturbing world many young people never see.

Despite the constant appointments, endless vials of blood work, and co-pays, I was getting nowhere. Some doctors recognized the extent of my health issues but my symptoms were outside of their expertise. Shuffle her off to another doctor. Some doctors continued to dismiss me.

I saw an endocrinologist in the Dementor building who patted my head and said “you’re fine.” Before he walked out of the room, he listened to my heart.

“Huh,” he said. “That’s strange. The heart should accelerate when you inhale but yours is over accelerating. This may be an autonomic issue.” This was the first time I had ever heard that word. Again, this was outside his expertise. He sent me on my way.

My rheumatologist convinced me to see another cardiologist because she thought my excessive heart rate was still concerning. When I walked into this cardiologist’s office, my pulse was 135 and my blood pressure was 70/50. I was trying to hold onto consciousness when I drove there on a snowy, icy day. He mentioned the word “POTS.” He told me to stop taking all of the drugs my primary had me take because they were making me worse. Yet, when I saw Dr. Z again he tried to convince me to stay on them.  I stopped taking orders from him.

Not long after I left school, I had convinced my husband to move back to California. He thrived in Nevada. He was shooting in the desert every other day, and he loved his job and the people he worked with. But every time I left my house, I felt a blanket of failure wrap around me. I had to get out. I wanted to go home, rest, recover, and reclaim my life. We made a deal and my husband started the process of transferring back to California. We still discuss moving back to Nevada because he loved it so much.

We moved back home in March 2012. I was happy to leave Dr. Z. To this day, my husband swears if he ever ran into him in public he would physically harm him. Someday when I write my book, I want to mail him a signed copy. His lack of care (literal and figurative) set me back in my diagnosis at least a year. Unfortunately, I have learned that many Dysautonomia patients have a “Dr. Z” who dismissed them, made them feel crazy, and were an obstacle on their road to diagnosis. I hope that someday, with more awareness, this will no longer be a typical story.

In my youth, I liked to dream. If I had to ever go hungry, I swear I could subsist on my idealism alone. That idealism was the driving force for most of my decisions in life. Over the last few years, those possibilities and the vastness of those dreams have narrowed and narrowed—until now I can fit them in the small of my hand. Yet, life can take you in unpredictable directions sometimes. The strength you obtain from surviving that unpredictability is worth every battle scar in the end. 

The story doesn’t end here obviously. The adventures continued when we moved back to California in 2012. The road to diagnosis is long and winding (and I’m still on it). That story is forthcoming.


  1. I can truly relate to much of your story. You write beautifully and I can not wait to read the rest as your personal story unfolds.

    1. Thank you so much Tabitha. Thank you for reading :)

  2. I am following your story in awe. It is eye-opening education to learn about this condition through your eyes.

    1. Thank you Stephanie. I hope it really is educational. That's definitely the goal :)

  3. Thank you so, so much for writing this! I have a chronic illness that interrupted my life in my late 20s and I can relate to so much of what you wrote. I too had a long and winding road to finding the right diagnosis and treatment, and a big part of that was a doctor who didn't take my concerns seriously. I can remember the day when I realized that I didn't have to do everything the doctor said to do just because the doctor said to do it — it was such a huge moment for me because it was the day I found my voice in the doctor's office. My hope is that people like you sharing stories like this will indeed help to raise awareness of the fact that so many doctors are dismissing patient's symptoms. So again, I say, thank you so, so much for writing this and sharing it with the world. I hope you're not in too much pain today. <3

    1. Crystal, it continues to shock me how universal this story is and I'm sorry you had to experience this also. I'm so glad you enjoyed it. We need to raise our voices collectively to raise awareness :)

  4. Much love, compassion, energy, and support to you, my old friend.

  5. Even as an RN working in a cardiac unit, I had trouble finding my diagnosis. It baffles me how something so obvious now, was so hard to see then. It was gradual and insidious, which makes it tough to evaluate. By the time it manifests as a roar, it's often too late. Love to you and your husband. I hope you are soon having full days of goodness, rather than only a few hours.


Comments are much appreciated!