It was probably the start of age 8 or 9 when I started to feel like the “sick kid”. I was always in the nurses’ office at school with some sort of headache or stomach ache. Most of the time no one believed my symptoms. Doctor appointment after doctor appointment, year after year, I was always told that these symptoms were “normal,” and that I would eventually grow out of them. In 2016, after a girls trip to New Orleans, I ended up in the emergency room and then really knew something was wrong. Within less than 3 months I had lost 30 lbs, was having extreme stomach pain, constant nausea, and vomiting after every meal. As a brand new RN at the time, I knew that this was not normal, but I figured stress and working night shift were the culprits to blame. I have noticed that often times, while nurses are very caring for their patients, nurses can be the worst patients because we lack in self care. Eventually co-workers started to realize what was going on and convinced me to get seen by specialty doctors at the hospital that I worked at. I had multiple doctor visits, medications, blood work, and eventually an upper endoscopy, and every test came back “normal”. This sounds like a relief right? Well, for me this was frustrating. Why am I feeling this way? There MUST be a reason for all this misery. I was referred to a dietitian who told me to remove gluten and diary from my diet. Sure sounds like an easy fix right? Well almost 5 years later of dietary changes, I am still suffering from nausea/vomiting/stomach pain occasionally. This episode is what I believe was the start of my chronic illness being misdiagnosed.
Fast forward 4 years to 2020: now I am a nurse working during a full blown pandemic. I never thought that would happen during my years as a nurse, but never say never right?! Like other healthcare workers, I am trying my best to avoid the dreaded COVID-19 when it catches up to me and I am officially diagnosed on November 15, 2020. Now I was told I had a “mild” case of covid which is insane to me considering how sick I truly felt. This nasty virus was no joke for me. If you look up the symptoms of covid…well I had every single symptom….yes, every. single. one. From lost of taste/smell, to the GI issues, to the shortness of breath, you name it I had it. I quarantined, took all the precautions, and 14 days later I felt even more sick than before. So after an expensive ED visit later, once again all my tests ect. were “normal”. It was then when I first became introduced to the term “covid long-hauler,” which became my new classification. Unfortunately, right now in the medical field, this term really is relatively novel, as is how and when to classify covid patients as long-haulers. I think more studies and information will come out in the future about this but right now the information just is not there. After 6 weeks off of work I was able to return to work, but not for long. I was back at work for about 2 weeks when I started to notice chest pain, dizziness, and high heart rate. I was having these symptoms at home but noticed an increase of symptoms while working. All of this chest pain landed me back in for another expensive ED visit. Once again everything came back “normal”, except upon discharge the ED doctor mentioned to get checked out for POTS syndrome. First off, I thought “what the heck is POTS syndrome” and “well maybe this could be my answer?” I went home to handy dandy Google search page (yes every medical professional Googles diagnosis that they do not know I know that for a fact!) and did a bunch of research on POTS syndrome. It 100% sounded like what I had been going through for the majority of my life. On 2/18/2021 I was officially diagnosed with POTS syndrome after a tilt table test. I finally got an answer to the question I have been asking for 20 years of my life! Now stay tuned as I continue to talk about my journey on navigating this huge diagnosis! 🙂