My Long Covid Journey and Listening to My Body's Somatic Wisdom After Losing My Ability to Swallow

I know for many, covid is not even a concern or a worry anymore. Aren't we past that? Yet, for the 1 in 13 adults in the U.S. who have long covid, their journey is ongoing. April 2022 would alter the course of my life for the past almost 2 years. It is my journey through healing long covid that has informed me even more about body wisdom, somatic nutrition and my ongoing creation of Somatic Eating®.

With my feeling word of 2024 being vulnerable…

this will probably be one of the most vulnerable things I've put out since starting this podcast. I often share stories of the distant past and rarely have I shared what's currently going on in my life or what I'm navigating. Yet, it is through my life experiences that have cultivated so much of my own wisdom and so I'll be sharing what I've been going through but also what I've learned about food and body along the way. 

April 16th, 2022 my husband and I took our first flight since the pandemic had started to Florida. My mom had turned 70 in January and wanted to celebrate by taking me, my husband Ethan, my brother, his wife, and my two nephews to Disney World. We were there for about 6 days and had an amazing time together. I have always been a fan of roller coasters and feeling as though I'm being transported to other places. My favorite ride was definitely the new Avatar ride.

Anyway, we arrived home on Thursday April 21st and I was feeling a bit run down and tired. Friday I had scheduled a full day of seeing those I work with and by the end of the day wasn't feeling so well. All day I was thinking, "I bet I have covid."

I woke up Saturday, April 23rd with a fever of 103, body chills, and a pounding headache.

I finally took a covid test and was positive. Immediately, I removed myself from being around my husband and my dog and shut the door to our bedroom, which I had no idea I would be in, alone for about 3 weeks. 

The fever doesn't break until Monday and I'm starting to feel better but I had tons of mucus and a worsening cough. Tuesday I have a hard time sleeping. I wake up at 3:00 am with difficulty breathing. I wake Ethan up, who was keeping his phone next to him 24/7, and I toss and turn over what to do. We end up going to the ER. We live close to my in laws and so we mask up in the car as I really didn't want to get Ethan sick and we drop our dog Tato off with my in laws. The entire time I kept thinking thoughts like, “Is this the last time I will see Tato, is this the last drive I will get to take with my husband, is this the last sunrise I will ever see?” 

I still to this day remember turning around in the car to see Tato running across my in law's yard with his cousin dogs. It is amazing the snapshots of time that get imprinted in traumatic moments. Some are crystal clear and others become hazy. This is why in sessions with me when exploring the trauma behind your food coping mechanisms, I find it doesn't matter if you can accurately remember your past and what's happened to you. Your body remembers and your body is telling the story. As I recall this moment, my heart rate is increasing ever so slightly, and my breath is a little bit shallow. My body remembers. We get to the ER and the doctor explains to me that I've gotten through phase 1 of the viral infection and what they have seen is that some individuals have a phase 2 of battling subsequent inflammation. I will later find out that the strain I was probably infected with was Delta and right as it was diminishing and disappearing and morphing into Omicron. Thanks Disney World.

The doctors at the ER reassure me that I'm young and healthy and will get through this but it is going to be uncomfortable for a few days. Through this time I get what is called covid panic which was high levels of panic regularly throughout the day as my lungs were inflamed and it was difficult to breathe. I realized through this time that many of the regulating resources I had were unavailable to me. My body was too exhausted to physically move in any way. Meditating felt dysregulating and overwhelming as coming into contact with my breath felt anxiety provoking. I found myself heavily leaning on the comfort of movies and shows. I have been a bigger proponent this past year in my programs, podcast interviews, and in sessions on how movies, shows, and even social media when used consciously and intentionally can be a wonderful regulating resource. I was grateful to be transported into different character's lives. Sometimes what you're navigating is going to be just too much to be with. Shaking my body wasn't going to cut it. It was an interesting experience to know what I was going through was traumatic of too much too fast and I just needed to take every moment one second at a time.

My husband was amazing through all of this. Luckily, he did not get sick which we were fascinated by as we were around each other all the time and slept in the same bed the night before I tested positive. He cooked all of my meals for me and left them by the door, he stayed up late consoling me, we watched movies together by Facetiming each other, and he would stay on the phone with me until I fell asleep. Something important to note about trauma is that an event may not be processed as traumatic based on how much coregulation was in place. While there has been a trauma response I've had to work through in my own body these past two years, I know it could have been a lot worse without the regulating presence of my husband. Peter Levine, the creator of Somatic Experiencing, often tells a story about a car accident he was involved in and when a woman came over to help him he asked her to stay with him knowing that he needed the calming presence of someone else to decrease the likelihood of that event being processed as traumatic in his body. We need other people. If you've been trying to heal your relationship with food on your own without telling anyone around you, I'll be blunt just for a moment, that you're making this healing path a lot harder. And to offer compassion, I know how terrifying it can feel to open up to others around you and let them know what you've been struggling with. You have to choose those people wisely and the people you feel as though you can trust and support you in feeling safe.

During these first few weeks, I was voraciously hungry.

I have such great trust in my body and my hunger cues now that I ate as much as my body needed. I knew it was doing so much work and nutritionally needed a lot of support from food. I tracked what my body was craving and told me it wanted and I ate a container of hummus almost every day. I later did more research on what maybe it was that my body needed from chickpeas and found that chickpeas are high in Vitamin B6, which is known to help regulate cortisol levels. Additionally, chickpeas are high in tryptophan, complex carbs, and folate which all help to decrease stress and anxiety and stabilize mood. Now there are a lot of foods that contain these properties so I imagine that growing up in a jewish household that ate a lot of hummus also contributed to choosing a food that I have a lot of joyful memories of. This is one example of how your body somatically talks to you when it comes to what it needs from food. It is a combination of what it needs physically and emotionally to feel safe and secure and stable. Now, I didn't need to know all of this about chickpeas. When I ate a ton of hummus throughout the day, I could feel inside my body that this was exactly what it wanted and needed through feeling more connected and relaxed. This experience informed me even more about what I teach others when it comes to Somatic Eating® is that we have to eat, observe, and collect data on our body to discover what regulates and dysregulates us through noticing our body's feedback. And what regulates you through food now will change as your body changes. 

Living in a sensitive body, I have never been one to take too many medications. If there is a side effect to something, I usually get it. Yet, my body needed so much support during this time that over these past 2 years I've taken more medications than I ever have. And it changed the way I viewed medication. Did I still get some side effects from some of them? Yup! But they made this journey more bearable and tolerable. The medications I needed to take decreased the overwhelm and supported me in moving out of the sympathetic nervous system as I got some moments of reprieve from all of the symptoms. If you're someone who has felt guilty or judged needing some kind of medication to support you and your body let me tell you that it is more important that your body feels safe so you can heal than white knuckling something because you've viewed medication as bad. It is incredibly difficult to heal in a body that doesn't feel safe. Medications sometimes buy you time to be able to assess what else you may need to explore to support your body. 

And, I can't tell you how many times I've raged quietly when I've seen posts on social media from influencers saying just take care of yourself, eat well, take your supplements, move your body, and you won't get covid or you'll be just fine. By all accounts, anyone in my life would say I take amazing care of myself and no one would have suspected I would have gotten covid as bad as I did or that it would turn into long covid. This is where wellness culture can be toxic in putting so much pressure on what you eat and how you move. There are just too many other factors to health that are not within our control for why and how we get sick. And I know for many that I've worked with that you've maybe needed the perceived sense of control that if you just ate the "right" things that you will avoid getting sick. That belief has potentially supported you in feeling safe in an uncontrollable world and you can keep that for as long as you need to.

Since I got covid in the winter, at times the air was so dry it made it even more difficult to breathe. I fell in love with my humidifier and had to take showers several times throughout the day. After about 3 weeks being quarantined, I finally tested negative. We wanted to make sure I was absolutely negative so I would test 3 more times after that just in case. The first day I tested negative though I met Ethan and Tato outside and cried. Tato was jumping all over me and was so excited to see me. Now that we were sure I wasn't contagious, it was wonderful to physically be around my family. This is another reminder on your food and body healing journey that if you've been isolating yourself, your body needs the presence of other bodies to heal. A baby who receives skin to skin contact right after birth helps regulate their heat rate, breathing, and adapt to life outside of the womb.

From the time we're born, our body inherently knows it needs other's touch and presence.

I get that there can be so much shame that comes up in response to your food behaviors and I've seen over the years that the point on your healing path that you're ready and willing to open up to others to share what you're going through is when your healing journey deepens. Your body starts to receive the coregulation it has needed all along. 

After these first few weeks of covid, my cough continued to worsen. It became harder and harder to swallow when one night I went back to the ER where they told me that my throat looked red and scalloped and that it would take some time to heal. At this point, I had transitioned into eating mostly liquids because it was so difficult to swallow. This was around May 2022. I continued to take cough medicine to try to manage the cough so that my throat could heal. I also finally agreed to take Lexapro for a week to decrease the intense anxiety I was feeling by struggling with breathing so that I could sleep, which I was barely getting. This was my first time on any anti-anxiety medication and while it did knock me out to sleep, I didn't love how it made me feel the next day and so this was only a one week experiment for me. I also ended up needing three weeks of steroids to decrease the inflammation in my lungs. So about a month after originally getting covid, the cough started to subside and the first time I tried to eat some solid food, my throat spasmed like it completely forgot to know what to do. It felt like the food was getting stuck in my throat and would take hours for that sensation to go away.

I was diagnosed with dysphagia, which is basically trouble with swallowing.

I mean you've gotta laugh here (well, after navigating this for almost two years, I can laugh about it all now). I chatted with a dear acupuncturist friend of mine who had a theory that covid attacks what's already weakest. My digestion has always been a sensitive point in my body. Of course I would lose my ability to swallow. I would end up getting an endoscopy to assess if I had a constriction in my throat which I did not and a barium swallow or esophagram where you basically eat barium in different consistencies while there is an X-ray camera on your throat watching you eat and swallow to look at the coordination of your swallowing muscles to see if anything is off. I got to see myself swallowing in real time. I don't think I can ever unsee what it looks like inside my body to swallow something. Nothing was wrong with my swallowing or my motility. I did learn that we don't have great ability to track sensations in our esophagus so if you feel like something is stuck in your throat, this could actually be caused by slow motility occurring further down in your esophagus as the food moves its way into your stomach. This whole experience gave me great appreciation for how amazing our body is in all that it coordinates and synchronizes for us every single day.

So while this is all going on, I'm only eating all liquids and my ability to swallow is so slow that sometimes I was staying up until 1:00 am to make sure my body was getting all the nutrition it needed. I remember one particular morning waking up and just bursting into tears because my throat felt so uncomfortable. I lost a lot of weight really quickly, which freaked me out and made me reflect. There was a time in my life when all I wanted was to be as thin as possible. My body held so much pain that I just wanted to disappear. To feel such a strong part of me care so fiercely about myself and had no interest whatsoever in losing weight or having a body change made me feel both proud for all of the hard work I've done to get to where I am today and deeply sad to be losing weight because of illness. It made me see weight differently.

A robust presence in your body can be a sign of health. It can be a sign of a thriving body.

A body withering away is going to be small and weak. And that is what we're taught we need to be. Riding that line between life and death for the hope of unconditional love and acceptance. I'm not going to lie, creating a different relationship with your body's appearance takes time. Wishing that your body was anything but the shape that it is hangs around the longest on this healing path. Experiencing the body shape you have as safe takes consistent and ongoing practice as you will continue to receive messages from every angle of life that your body needs to be different. Drinking smoothies until 1:00 or 2:00 am in the morning and then having to start my eating day all over again a few hours later was exhausting, but I was choosing life and this body with all of me and so I was doing whatever I needed to do to make sure I stayed here no matter how long it took me to eat. 

Sometimes I would cry while eating my soups or my smoothies. Some nights I would be so tired by eating literally all day long and my husband would rub my back and cheer me on to keep going. I had connected with a GI doctor who prescribed a muscle relaxer suspecting I might be having esophageal spasms. In hindsight, this was not what was going on but this particular medication had a side effect of a false sense of wellbeing. This was a hilarious thing to experience where I knew nothing had changed but suddenly everything felt kind of alright to navigate and the swallowing got just slightly easier from the felt sense of relaxation in my body. 

I was also working with an acupuncturist and a functional nutrition practitioner who suggested I go on a low histamine diet. I never thought I was going to be in a place where I would so drastically changing how I eat but as you may know of me I'm all about experimentation and eating in a low histamine way was the only thing that made me stop breaking out in hives which was regularly happening as a covid response. Now, I will be clear that eating low histamine foods does not heal having a sensitive histamine response. It greatly helped and struggling with histamine can be connected to trouble with swallowing so I was willing to try anything. I did notice a difference in being able to swallow by supporting my body in its histamine response with eating foods that didn't further exacerbate the problem. Now, the interesting thing is that by the time someone had made this suggestion to me, I had already started noticing that I felt calmer, with less hives, and a difference in swallowing by tracking how different foods were making me feel. This is why I continue to believe that it is so important to learn how to pay attention to your body as it will tell you what it needs. It will be the first to tell you when it needs something different before you get to the point where it has to scream at you and you've seen a million different naturopaths, nutritionists, and doctors. My long covid healing journey continued to reiterate for me everything I teach and why a somatic approach to eating feels so important to me for more individuals to learn how to do this for themselves.

At this time, I also started to get some energy back to move my body.

After I tested negative for covid, I took my first walk outside and had to walk at a snail's pace. It was so wonderful to feel fresh air on my face. When checking in with my body's movement capacity all it wanted to do was yoga. And, it was honestly the only thing I missed after not moving my body for a whole month. With it being hard to breathe, my yoga practice felt different. I had to take many more breaths between poses and would sometimes cry as I moved from pose to pose trying to get to know this new body. This is also what it can be like when you're healing your relationship with food. You will be getting to know an entirely new body. A body that is fed. A body that is nourished. A mind that works differently as it is getting the nutrition it needs. Energy levels that you may have no idea what to do with. Cry if you need to. Sometimes it's what's needed to process non-verbally all that you're integrating and tears are your body's way to activate your parasympathetic nervous system and move into safety and connection. Healing is possible for you. It just takes time and WAY longer than you think it "should" take.

Over the summer of 2022, I started with a 5 minute yoga class and then 15, and then 20, and by the end of the summer I was back to my 60 minute practice. Finally in August of 2022, I connected with a long covid clinic. The doctor there explained that my dysphagia had nothing to do with a digestive issue (which again looking back he wasn't entirely correct and this is why when you're on a healing journey, you need to be relentless in seeking many different kinds of support and doctors and getting second opinions to discover what is going to move you forward on your healing journey). This doctor said the issue was pulmonary and neurological. He went on to explain that when the body isn't getting enough oxygen, it sends what it is getting to the most important organs: your heart and your brain. Your digestion basically shuts down because it's not deemed as crucial to your survival (something to perhaps remember when you're going through stressful periods and you're wondering why your digestion gets worse. Your bodily resources are being re-routed elsewhere). What was interesting to learn here was that individuals healing from covid have given doctors an opportunity to discover root causes of other symptoms like digestive complaints that they have never been able to pinpoint before that actually don't have to do with the digestive tract at all.

Anyways, he explained that we needed to heal my lungs and then I'll be able to start swallowing again. So, I went on a 12 week course of nebulizing a steroid straight into my lungs and sleeping with an oxygen concentrator to make sure I was getting enough oxygen while I slept, which I found out through a sleep study that I was not getting enough oxygen while I was sleeping. At this point, it had been almost 7 months of eating all smoothies and soups, but as my lungs healed I noticed being able to eat faster and faster. I had hours back into my day that didn't have to revolve around food. As you can imagine, I experimented A LOT with what you can blend.

Kind of sounds like a game show like Is it cake? but instead, Can you blend that?

I went back to nutritional basics and made sure that every blended meal had all of the macronutrients I needed. I found the only reason I would ever condone an app like MyFitnessPal was that I wanted to make sure that my body was getting in all of the nutrition it needed. My body was still living in a constant dysregulated state where, as you've heard me teach, it is hard to know what it needed as I barely ever felt hungry. Once I entered into the app what I knew I could blend and saw how I could create low histamine smoothies and soups that met my needs, I didn't need to use any app anymore. It took me a decade to get calorie counting and numbers out of my head and I wasn't going back to that place. As a side note here, sometimes things you will play with in the future of your healing path may feel familiar to what you used to do back in your disordered eating days. It can be helpful to point out to yourself all the ways that what you're doing now feels different. You can show your body that this is not how it once was and you will not be going back to that again.

The most tweaking I had to do was how to make a blended soup that included animal protein. I live in a body that thrives when eating animal protein and struggles when I do not and so I knew I needed to find a way to make this work. Having a Vitamix was helpful so that I could blend almost anything and it took time to discover the ratio of liquid, vegetables, and meat that blended to the point where it was edible and not too thick or grainy. Many have told me I need to put out a cookbook for those who struggle with histamine and dysphagia as I made the most interesting things for myself over the past two years. There were times drinks like Ensure were suggested to me but I love to cook and I knew I could make better and tastier meals for myself. I did also need to rely heavily on protein powder to make sure I was getting enough protein as sometimes it felt too difficult to consume the blended meat in my soups. So I have a big appreciation for the company Equip that supported me in getting my protein needs met and a protein powder that did not activate my histamine issues. This is why when you see me talking about Equip or see the link in my show notes for 15% off their protein powder it's because I have a deep appreciation for them and how their protein powder supported me in my healing. What I want to offer here is that sometimes you have to look out for foods that support you in feeling safe. When food is interpreted as dangerous and threatening, you have to start small in noticing what foods provide you with a sense of safety and security as you'll be able to digest those foods much easier as you will be eating in them in the parasympathetic nervous system or rest and digest state. Along with eating foods that support a sense of safety, it can be helpful to create an entire environment that facilitates safety while eating. Since it was summer time, I often ate outside or while cuddling with Tato, or watching him run around in the yard. I know there is so much advice out there about not eating in front of the television and if watching tv while eating dinner facilitates safety, do it. Sometimes I would be so tired from everything I had to navigate when eating and the hours it would take to complete a meal, it was nice to watch a movie while doing that.

With all of this healing going on, you might imagine that I would have been stuck at home. But one of my greatest fears was that I wouldn’t be able to travel anymore with needing to be on an all blended diet. Yet, I found ways to get out into the world. First, at the beginning of the pandemic, Ethan and I had purchased an airstream and have driven across the United States three times now. We drove east with my blender so that I was able to go to new places. One of the things that Ethan and I kept talking about when I first lost my ability to swallow was, where did we want to travel when I was able to swallow again. It was this shining light that kept reminding me that I’m going to heal, I’m going to get this ability back, and gave me new inspiration to plan more intentional trips to see the world. When you're in the thick of disordered eating, the behaviors can become a feedback loop in your body that provides comfort. To make it worth it to engage in new food behaviors, you’ve got to identify WHY you want to engage in different patterns with food. What will that give you? How will taking yourself out of the comfort of the known move you toward what you want for your life? Reflecting on what chewing food gave me the ability to do guided me to keep going to explore what my body needed to heal. 

On one of our trips driving east, I was able to get an appointment at the long covid clinic at Yale.

This was now November 2022. The comforting thing talking to the doctor at Yale was that he said, after seeing thousands and thousands of patients, that he saw most individuals heal from covid after about a year to a year and a half. I took another breath test at the Yale clinic, and it showed that I was operating as someone who had asthma. I had been on multiple different kinds of inhalers, and he put me on a new one. This particular inhaler definitely felt like it supported my breathing, but it decreased the functioning of my immune system, where I got terribly sick and after a month needed to come off that inhaler. That month did what it needed to do though and I felt like at this point my lungs had mostly healed. And, in September 2023 I did another sleep study and I was back to getting enough oxygen while I slept in no longer needed the oxygenator. 

Yet, I was still struggling with swallowing and could not get in to see another doctor at Yale before it was time for Ethan and I to head back west. Healing my lungs helped immensely with my swallowing. I remember the moment I noticed that I could take multiple gulps of water in a row. Even as I describe that now, I feel complete elation and warmth come over my body. It was so amazingly satisfying to be able to take multiple gulps of water. For almost a year, I had to take a sip of water, swallow, and wait to make sure that went down before taking another sip of water. Every tiny step forward that you take on your healing journey deserves to be celebrated. If you spent one day not binging, celebrate that. It doesn't matter if you binged the next day. You were able to not binge for one day and that is a big deal. If you ate breakfast every day for a week, that deserves to be celebrated. If you tried a food you would normally restrict and didn't beat yourself up afterward, that is amazing! There is no step too small that deserves to be acknowledged. 

I booked an appointment with an ear nose and throat doctor, who did a nose scope, looking at the top of my throat, which had yet to be done. She said that my throat did look slightly inflamed, and that this could be a sign of acid reflux, which she explained that she had seen many individuals with long covid experience because covid can increase the acid production of the stomach. I was slightly confused by this initially because during the day I never felt like I was having acid reflux symptoms and she explained that it could be only happening at night. So, what she suggested was that I do a 24 hour nose scope that has a sensor that will be reading the pH in my throat. While having a tube up my nose sitting at the top of my throat was highly uncomfortable, it did produce a lot of new information, and it was also really interesting to see my throat pH levels changed based on my physical activity and what I was eating throughout the day. What we discovered was that my acid reflux symptoms were only happening when I laid down to sleep at night and burning my throat all night long. She put me on liquid Pepcid for several months to try to decrease the acid that my throat was being exposed to. Now, for most individuals who have acid reflux symptoms this is actually a sign that you don’t have enough acid. I had been taking HCL with pepsin for years to try to raise the acid levels in my stomach to help break down my food, and this was interesting to now be on the other end of the spectrum.

This brings us almost to the present.

I saw a speech pathologist who reminded me of some things I had been reading that covid can affect the function of the vagus nerve which are the main nerves of your parasympathetic nervous system and run through your esophagus. I've been gargling water almost every time before I eat or putting a cold pack on my neck after I eat to help stimulate my vagus nerve which has been greatly helpful. I've been working with my own somatic trauma therapist this past year to process everything that occurred. I'll be honest that after almost two years of not eating, I was scared to try to eat. I had tried here and there throughout the past year to assess where I was at. It felt so disappointing when it didn't feel normal that I would need to take some space for several months to work up the courage to try again. The week of Thanksgiving, just about two months ago, I made a commitment to try to eat every day. The first day it took me about 6 hours to chew and swallow one meal but I did it and it felt about 85% normal. Two days later, it took about 4 hours. Now, I practice at least once a day and it takes about an hour to finish a meal. At times, it's emotionally and physically tiring. My jaw gets tired from under use. But, it's happening, slowly.

So here we are, present day. The healing continues and I feel almost like my pre-covid self and yet entirely changed from this experience. I've thought more about my life and what I want to do with it than ever before. And why share this experience? I could have just kept this all to myself. Yet, I got into this work because I love connecting with people. So much of my life I felt unseen and misunderstood which felt incredibly painful and isolating. Through everything I do, I strive to support you in feeling seen and understood and perhaps little pieces of my journey maybe supported some of you in feeling not so alone in whatever hardships you're going through. Life didn't just stop because I was sick. I continued to work with people struggling in their relationship with food one on one, I taught my Somatic Eating® Program twice this past year, I mentored other practitioners wanting to learn the Somatic Eating® approach, I started indoor rock climbing with my husband. Life continued even in the hardest healing moments. 

What I can offer in connection with the food and body healing journey that you may be on is that healing is layered and slow and your body will let you know what it needs and what it's ready for. It's kind of like we wouldn't force a child to do something they aren't yet ready to do. If a child was afraid of learning how to ride a bike, you wouldn't tell them to get over it and jump on. You might explore with them what would make it possible and that might start with first sitting on the bike without moving it at all. You might need to do this several times until the child is ready to place their feet on the wheels and then you may need to hold the back of the bike so they knew you're there as they start to peddle and only when they say they're ready may you let go and let them ride as you stay right by them. This is what you need to do for yourself. You get to explore what is the most tolerable step on your healing journey and then the next one and the next one after that until you're riding free.

So for all of you here who have unknowingly been on this healing adventure with me, thank you for being here and I look forward to continuing to share and connect with you all in 2024.