Ten years of Cyclic Vomiting…
This month marked my ten year anniversary of my first cyclic vomiting episode. It feels weird that it’s both only been ten years and already been ten years, so I wanted to take some time to reflect on all that’s happened since that time. But before I dive into that, a brief review of my story.
November 20th, 2010, I woke up feeling nauseous, threw up in the bathroom at a friend’s wedding, and ended up going to the emergency department later that night because I still couldn’t keep any fluids down or stop throwing up. I was discharged after some fluids and meds, and slept the rest of the night. The next day, driving back from Birmingham to Nashville, I pulled over at a gas station while talking on the phone with a friend because I felt myself getting weaker and weaker. My roommates drove down to drive me and my car the rest of the way back home. I dry heaved the rest of the trip, and they took me straight to the ED at Vanderbilt, where I had started working a few months prior. I was admitted for intractable nausea and vomiting of unknown origin. I was discharged 5 days later, on Thanksgiving Day, mostly at the urging of my parents after my work up was fully normal and I was starting to keep some liquids down again. I didn’t feel like my normal self, with a normal appetite and energy, until ten years ago today, November 29, 2010.
Ten years ago, the best diagnosis they could give at the time was a post-viral gastroparesis. I had seen some kids in Birmingham who ended up getting a stomach bug, and we assumed I had also picked it up, but just didn’t bounce back. It was a frightening experience because we really had no idea why I got as sick as I did, but once I recovered, I moved forward, simply thankful for my health.
A little less than two years later, in August 2012, I was in Chicago for a conference and woke up the last day with the same nauseated feeling from 2010. I remember immediately recognizing it was the same feeling, and having no idea what it meant, but knowing it had to mean something. I was admitted for observation in Chicago, and released with instructions that I was to go straight back to the hospital once I returned to Nashville. Some friends who also drove to the conference drove me and my car back; I dry heaved the whole way. I spent several days in and out of observation in the ED before I finally returned to my normal health.
A month later, I was in Los Angeles visiting friends, and spent another night in the ED with the same symptoms, though thankfully more short lived. By the end of that year, I had my official diagnosis of Cyclic Vomiting Syndrome, and a new prescription for amitriptyline daily.
From there, it was a tumultuous few years of being knocked flat from cycles a few times a year, and feeling totally normal in between. Eventually, after a dose adjustment to my amitriptyline at the end of 2014, I went a full year without a cycle. In fact, it was close to four years before I was hospitalized again, and I haven’t been since 2018.
Because I was discharged from my first episode on Thanksgiving day, and essentially missed any normal Thanksgiving activities that year, every Thanksgiving since, I’ve paused to reflect on how thankful I am for my health, and just the simple ability to be able to eat good food and enjoy it that day. It’s been ten years of Thanksgiving reflections and thankfulness, so I’d like to spend some time writing down all I am thankful for since I first developed Cyclic Vomiting Syndrome, in no particular order.
- I am thankful for my first GI provider, who diagnosed me in 2012, and quickly started me on preventative medication.
- I am thankful for the coworker Desirea who, after I had multiple episodes of intractable vomiting in 2012, researched some ideas of what it might be, and suggested I look at Cyclic Vomiting Syndrome as a possible diagnosis. As soon as I looked it up myself, I instantly felt seen, like I wasn’t alone in my symptoms and experience. When you are being afflicted with unexplained symptoms and no diagnosis, finally finding a diagnosis that matches your symptoms and presentation is such a comfort.
- I am thankful for everyone who has supported me through episodes…
- My boyfriend at the time, Shaphan, who took me to the ED in Birmingham.
- My old roommates, Mallory, Lauren, and Jena, who drove halfway to Birmingham to drive me the rest of the way home, took me to the ED again, and helped coordinate calling my parents to get them there to be with me.
- My friend Jenna who took me to the hospital in Chicago (honestly also maybe more people, I really don’t know or remember who was involved because of Ativan amnesia)
- The friends Vinny and Jenny who drove Chicago to Nashville with me dry heaving and asking them to pull over the entire time, and then later took me back to the hospital.
- My friend Mary who came to my hotel in Los Angeles in the middle of the night, took me to the ED and later back to my hotel.
- My friend Jenn who met me at the ED in San Francisco, and went to the drugstore when I was discharged to get me things I could handle eating and drinking while I was recovering.
- My friend and close family friend Catherine who picked me up from the ED in San Francisco, and let me sleep for 24 hours straight in their guest room, and also cooked me homemade chicken and rice soup that was the best thing I had ever tasted when I was recovering.
- My friend Kaci, who has taken me to the ED multiple times, and stayed with me through many episodes.
- For Abby, who came to sit with me before her shift at the hospital started while I was admitted.
- My friend and old roommate Elena who has also taken me to the ED in the middle of the night.
- My parents, who have driven or flown out to be with me while I was sick multiple times, facetimed me to tell me to go back to the ED, and supported friends who where helping take care of me.
- I’m thankful for the taxi drivers who have driven me to the ED in the middle of the night, or back home from the ED. I am thankful that I was able to figure out how to dial for a taxi in the middle of the night, that they safely delivered me there, and that I was able to pay them. Sometimes I only know I took a taxi because I would find the receipt in my bag later.
- I’m thankful for the coworkers who I left abandoned when I abruptly had to leave my shift because of an episode…
- Once in Kansas City, when I thought that if I just got to work I would go into work mode and would be fine, and then as soon as I started getting report realized I did not have the mental capacity to safely care for anyone else.
- The other time in Los Angeles, when I had to leave in the middle of my night shift with my report written out because I couldn’t speak anymore, and then walked myself to the ED.
- I’m thankful for the security guard that saw me that night standing in the hospital lobby I had just started working at, trying to figure out how to get to the ED from there, who walked me over himself when he saw I wasn’t able to retain his directions.
- I’m thankful for my friend Hannah, who took responsibility for a livestream Q&A I was supposed to be moderating hours before it was set to start when I started vomiting.
- I’m thankful for my friend Eric, who took responsibility for the panel I was supposed to moderate at a convention the day after an episode started.
- I’m thankful for all the friends who have helped me stay well while traveling since — who reminded me to eat, to take my medication, to go to bed on time, who made sure I had a quiet room to lay down in when I started prodroming. Molly, Hannah, Kaci, Jenn, Erin, and many others.
- I’m thankful for all the friends who read my “CVS Manifesto” and were on standby to take me to the hospital if I got sick while we traveled together. Molly, Hannah, Kaci, Jenn, Kelsey, Catherine, Becca, Taylor, Samantha, Jenna, Anna, Anna, Valerie, and probably others I am forgetting.
- I’m thankful for my second and current GI provider, who adjusted my medication to a dose that has since kept most episodes at bay.
- I’m thankful for my therapist, who helped me recognize early symptoms in my body, stop anxiety spirals, and work through the trauma I experienced during my multiple hospitalizations.
- I’m thankful for the Cyclic Vomiting Syndrome Association, for raising awareness and helping support research and the development of the adult cyclic vomiting syndrome treatment guidelines.
- I’m thankful for how being hospitalized changed the way I approach patients and patient care. I was hospitalized just weeks after coming off orientation as a new grad nurse, and I know that the experience fundamentally changed how I approached my work moving forward.
- I’m specifically thankful for the experience being dismissed and treated like a drug seeker in the ED from doctors who did not know me when I was well. This fundamentally has shaped how I approach patients whose first impression is to make a snap judgement about their history or their true intentions. I am a better provider because of it, with greater capacity for empathy and slower to come to any fixed conclusions until I gather more data and spend more time interviewing the patient.
- I’m thankful that my path crossed multiple patients that I was better equipped to care for because of my past experience. There are several cases that come to mind immediately, but I know there are more that I don’t recall.
- I’m thankful that I decided to start travel nursing at the end of 2012, even though the decision came right in the middle of my diagnosis, and logic seemed to dictate that I should stay in a more secure work and insurance situation. I had many cycles while traveling, but each cycle helped me understand my disease and my triggers better.
- I’m thankful for the drugs that break my cycle.
- I am thankful for my 50 mg amitriptyline that I take daily, weight gain and all.
- I am thankful that I have learned to anticipate triggers, and learned to recognize my prodrome very early.
- I am thankful I have been able to stop prodromes from worsening, using both my abortive medications prescribed by my doctor, liquid only diet recommended by my doctor, and techniques from my therapist.
- I am thankful for the memory wiping effects of the IV ativan I get whenever I’m hospitalized, so that I don’t remember much of how terrible it was.
- I’m thankful for how amazing bouillon chicken broth tastes after I haven’t been able to eat for days.
- I’m thankful for King’s Hawaiian Sweet Rolls, which are almost always the first solid food I eat once I come out of an episode.
- I’m thankful for all the nurses who tolerated me trying to take care of myself while I was being treated… when I would disconnect and reconnect my own IV fluids, adjust my own pump, record my own I&Os in the written charts, and more.
- I’m thankful for the warm washcloth that one hospital in Kansas City would bring around every afternoon for me to wipe my face off with, because for a few brief moments I felt human again.
- I’m thankful for the kind nurses whose faces I never remember, but I remember how it felt when they brought me socks, or a warm blanket, or reassurance in their voice.
- I’m thankful for my friend Samantha, who I did ICU rotations with in our residency program before she matched to the ED, for coming to check on me while she was working, changing my gown for me when she saw it had dried vomit on it, and sitting with me for a while.
- I’m thankful for my sister-in-law’s father, who recognized I was having an adverse reaction to oral Reglan after I was discharged in 2010, which was why I was continuing to feel so poorly even though I was no longer in a cycle.
- I’m thankful for emesis bags.
- I’m incredibly thankful that I now can help people who have Cyclic Vomiting Syndrome or other functional GI disorders. I’m thankful that I can understand how scary it is while you wait for a clear diagnosis, and that I can help provide them treatment options to help them get their life back, too.
- I’m thankful for greek yogurt and peanut butter crackers for being something I can almost always eat when my appetite is off.
- I’m thankful for protein berry workout smoothies with whey protein from Jamba Juice, for being my go to liquid meal option.
- I’m thankful for how amazing it feels to take a shower and brush your teeth for the first time after days of laying in a hospital bed.
- I’m thankful for everyone who has prayed for me or otherwise lifted me up when I was sick and hospitalized over the years.
- I’m thankful that I learned to prioritize taking care of myself, even when it was hard, because of this illness. I’ve learned to prioritize getting enough sleep, eating regularly, stress reduction, and other self-care habits.
- I’m thankful I learned to say no, and have boundaries because of my chronic illness.
- I’m thankful that being stripped of my ability to do or offer anything when I was sick forced me to reckon with what makes me worthwhile or worth loving.
- I’m thankful being sick brought me to more fully understand and embrace that I am a beloved child of God, full stop. My worth or goodness does not come from my works.
- I’m thankful that being sick led me to have greater peace with the unknown, especially the unpredictable future ahead. I’m thankful I’ve learned more and more to live in what today brings, and what I can offer today.
- I’m thankful that I am more comfortable being weak, needy, vulnerable, and asking for help now.
I’m thankful for so many things over these past ten years. It hasn’t always been an easy road, but it has shaped who I am today, and for that, I am grateful. Being diagnosed with a chronic illness is scary, even more so when it’s a rare one that is poorly understood by the majority of the medical community. I feel confident that part of why my disease hasn’t been as bad as some is that I very quickly got an accurate diagnosis and appropriate medication and other treatment started.
Being sick and hospitalized changed how I approached my bedside nursing care, and though it was a horrible experience, it’s one I think every doctor and nurse working in the hospital would benefit from.
Being sick also changed my interests- it made me search out more research articles on functional GI illnesses, on using amitriptyline for chronic digestive issues, and ultimately led to me choosing to apply for and accept a job working in gastroenterology as an NP.
Ten years ago, when I was a scared new grad RN, calling out sick for her first holiday she was supposed to work because I was admitted to that same hospital, I had no idea what the next ten years would bring. There was a lot harder stuff to go through, but also a lot of good to come.
I thankful that all I’ve been through has shaped me to who I am today. I’m thankful all my suffering and hardship has found its place in my story. And I’m thankful my story is not done. These past ten years were full of a lot of pain, and a lot of joy. Here’s to the next ten.