Continuing to Manage
In the summer of 2018, I graduated from the University of Missouri. Leading up to graduation, I remember wondering if I would be able to have a career while managing a chronic illness. Would it get worse? Would I develop new conditions? Would I have to take extended time off on bad days? These were the questions running through my mind as I searched for my first career job. I still had no answers about what was wrong with me, nor could I find anything that would bring relief from my symptoms.
Despite failing to find a path to healing that worked, I was able to secure a great first job as a sales representative for a healthy hydration company. It was a perfect fit, with flexibility, a strong emphasis on employee health, great leadership, and an infectious positive energy throughout the team.
During this time, I was still active, competing in triathlons and running half-marathons. I always had symptoms during training, but I did my best to work through the discomfort and live my life as normally as possible. Being able to exercise, despite having a debilitating illness, played a large role in keeping me mentally healthy. It gave me a sense of purpose, and I told myself, if I can exercise and maintain some functionality, then I can continue to take life day by day.
Towards the end of 2019, things went downhill fast. I picked up a stomach bug after attending a Christmas party, which changed everything and catapulted me into a new wave of symptoms.
The Stomach Bug
The night of the Christmas party, my partner and I went to bed early as I was already starting to feel ill. I had a gnawing pit in my stomach and felt like I just needed to sleep it off. I managed to fall asleep but soon woke up an hour later with the feeling worsening. I knew that I was about to throw up, but I kept trying to fall back asleep. After a few attempts, I was getting worse and began to sweat profusely. It became an emergency, and I rushed to the bathroom.
For the next 15 hours, I vomited every 10 minutes. It hit me in intense waves, and I cycled in and out of fever within seconds. I remember lying on the floor, trying to sip water, but throwing it up. I truly felt like I was dying, and the torture seemed never-ending. I was severely dehydrated, with nothing left in my body, painfully dry heaving. I became so weak that I was stuck in a fetal position on the floor, wrapped in a towel. I tried to get my partner’s attention by banging on the bathroom door with my foot, but she was sound asleep, and I didn’t have the energy to use my voice.
It was a grueling 24 hours that I never thought would end. To this day, I’m not sure if I had food poisoning or the stomach flu, but I hope I never experience a sickness of that magnitude again. After 48 hours, I was able to eat somewhat normally, though I was still sensitive. After a week, I thought I was headed back to my normal baseline until I started experiencing new, hard-to-explain symptoms.
New Symptoms
Two weeks had passed since the stomach bug, and I noticed I was feeling off every single day. The feeling lasted into the morning and only went away by the afternoon. I felt nauseated, the visual disturbances I had been experiencing daily for several years were worsening, and I had an overall sense that something wasn’t right.
At this point, I hadn’t had a primary doctor in a few years, so I decided to book an appointment to start fresh. The doctor ordered basic bloodwork and prescribed high blood pressure medication, as my blood pressure was elevated during the visit. He also prescribed muscle relaxers to see if they would help with my stiff neck symptoms and head pressure.
The next morning, I took Hydrochlorothiazide, the high blood pressure medication prescribed by my new primary care physician. About an hour later, I was sitting on the couch, finishing my coffee and breakfast, and preparing to head out for work when my heart started racing. I quickly became extremely dizzy, and when I tried to stand up, I had to lie on the ground. I became nauseated, and it was hard to breathe. This episode lasted a couple of hours, and I felt off for the rest of the day.
A few days after this episode, I started experiencing extreme bloating, and the dizziness increased twofold. I began having trouble getting anything down, including water. The bloating wasn’t intermittent; it was a constant pressure, overwhelmingly uncomfortable. I also started having difficulty breathing, especially during exhalation. From this point on, I began accumulating new symptoms every day.
I lost my appetite due to the bloating, and it felt out of my control. I started to experience severe epigastric pain that burned, like a match being lit in my stomach. It felt tight and gnawing. My stomach was constantly gurgling and making whooshing sounds. I noticed the epigastric pain worsened every time I was upright, and the dizziness that coincided with the stomach pain became unbearable.
I had to immediately stop exercising, as I started getting winded just going up the stairs. I went from doing over 100 miles on the bike and running 15 miles a week to struggling to complete 2 miles on my bike trainer. Showers and all simple tasks became difficult. I would later realize that these were symptoms of POTS (Postural Orthostatic Tachycardia Syndrome).
Digestive issues continued to worsen, evolving into heartburn and acid reflux, especially at night. It felt like I was breathing in and out acidic air 24/7, which started to irritate my throat. I thought there was something foreign in my esophagus, and whenever I managed to eat, it felt like my airways would close up. I began to experience a burning sensation in my mouth, like acid was lingering, making it extremely dry and making me feel like I couldn’t get enough fluids.
Lying flat, which once relieved my head pressure, became painful due to the reflux. I dreaded going to sleep because it made the stomach burning worse, making it hard to sleep through the night. I no longer had any comfortable positions.
I unintentionally lost weight rapidly due to the bloating and epigastric pain, and after losing 15 pounds while already being skinny, I became increasingly concerned and booked an appointment with a gastroenterologist.
Treatments and Testing
By the time I saw my GI doctor, I was hardly functional and looked and felt deathly. My doctor quickly booked me for an upper endoscopy, and due to the weight loss, he ordered a colonoscopy as well. I remember being in disbelief that I was getting a colonoscopy at 26 and had the possibility of "the big C" in my head.
Fully expecting the worst, I received my results, and both procedures came back mostly normal. The colonoscopy was clear, but I was diagnosed with GERD and mild gastritis through the upper endoscopy. I also tested negative for H. Pylori. Based on the results, I was prescribed a PPI for one month, a low FODMAP diet, and was advised to start taking a probiotic.
I was on the PPI for one month, and while it helped with the burning sensations, I saw no improvement in digestion or my acid reflux symptoms. My GI doctor then ordered an abdominal ultrasound to check for gallbladder or liver issues. When that came back normal, they weren’t sure what else to do, so they handed me another low FODMAP brochure and a prescription for an antidepressant.
After a few weeks off the PPI, I experienced rebound acid secretion, which is common after stopping PPI therapy, but I wasn’t expecting it at the time. I was in an immense amount of pain, and the stomach burning was relentless. I started experiencing sinus issues, breathing became more difficult, and desperation began to set in.
Functional Medicine Approach
Since conventional medicine was not helping me in any way, I began looking into alternative treatments through functional medicine. I knew I was a complex case, and through my initial research, I found that functional medicine tries to find the root cause, and I was desperate for relief.
There are many downsides to working with functional medicine practitioners. Keep an eye out for a post where I go into more detail about my experience with a local alternative medicine clinic. However, they were great at providing hope, in-depth testing, and potential solutions.
I took a comprehensive stool test, an organic acids test, food allergy testing, extensive blood work, and developed a healing plan based on the results. The whole program was essentially out of pocket and incredibly expensive, as insurance doesn’t cover most tests and visits, but I was desperate.
My comprehensive stool test was relatively normal, but it showed a few parasites related to Blastocystis hominis. My organic acids test revealed a couple of elevated yeast and fungal markers, and I had no signs of food allergies but was sensitive to eggs and dairy. My blood work showed high total and LDL cholesterol.
Based on the findings, I was put on a six-month program to address any deficiencies, parasites, and the symptoms I continued to experience. It included a strict Paleo/elimination-style diet, lifestyle changes, and too many supplements to count.
Trying to Manage
After spending six months on the diet and supplement regimen, I saw slight improvements in the intensity of symptoms, but I still didn’t feel in control, and most of the symptoms persisted. I was able to start doing light exercise three months into the diet and began regaining some fitness through cycling. I worked with functional medicine for about a year before calling it quits. Visits to the clinic, supplements, retesting, and other treatments that provided no benefit became too expensive.
I took a step back, stopping all supplements, but continued to seek other ways to manage the digestive and stomach issues. I was convinced that if I could find the right diet, I would be able to find relief. I tried Keto, vegan, whole foods plant-based, Mediterranean, elimination, and more. I gave each diet a few months unless it worsened my symptoms, which was the case with the Keto diet. Nothing worked.
By 2022, I stopped all restrictions and began eating normally. I was still conscious of what I was putting into my body, but I wasn’t following a specific diet. Despite experiencing the same symptoms all day every day, this was the year when I felt the best since the stomach bug at the end of 2019. I was also able to get more miles on the bike, and the POTS symptoms weren’t as severe.
Unfortunately, this improvement was short-lived, as by 2023, things began to change again. I noticed I became sensitive to different motions and started feeling off-balance. I began experiencing daily neck stiffness and aching. Every time I turned my head and returned to a neutral position, I would get lightheaded, nauseous, and dizzy, with vertigo symptoms. This set the stage for the third wave of new and worsening symptoms in Chapter 3: Headed Towards Disability.
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