It’s been exactly one year today since the year from hell began. I’ve been through a lot of crap in my lifetime. I blame it on my name which means ill fated one but this year has been brutal.
It started when my husband and I traveled to Jackson Hole, Wyoming to have a belated birthday and Valentine’s Day celebration. The night prior to leaving I noticed that I had a sore throat, my breathing was a little more challenging and I just overall felt off the way I do when I’m getting sick. I juiced oranges, carrots, pineapple, turmeric, and ginger for all the Vitamin C and took my Manuka honey which has helped me every single time I’m about to come down with something. I crossed my fingers and hoped for the best. I didn’t want to ruin this trip since it was the first time in 2 years that we had a trip alone together.
When we got up the next day to head to the airport I didn’t feel much better. I was noticeably off but tried my best to pull it together. It was hard to breathe while we were waiting in line to pass security at the airport. I tried to ignore it but surprisingly, that doesn’t make it go away. 🤪
Once we landed safely, one of the first stops was to a natural grocer so I could stock up on more Manuka honey and essentials to fight whatever I was getting. I was so dizzy and disoriented at the store that I told Jared we needed to go. We went to our cabin, checked in, and started unpacking. By this time I didn’t have a sore throat any longer but I still did not feel good or feel quite like myself. I remember talking to Jared and forcing conversation that didn’t at all sound like me. My brain wasn’t working right and the words I wanted to say wouldn’t come out. Later on that night, Jared fell asleep while we were watching a movie and I started to get really sharp pains in my heart. It felt like I was having a heart attack. I, once again, tried to ignore it and talked myself into it being anxiety or muscle pain and went to sleep instead.
The next day, although still not feeling great but not wanting to ruin our trip, we went to explore downtown Jackson Hole. As we were shopping, I was so disoriented that I began walking into walls and even some people. My breathing was still very much off and now my vision began going double as well. My vision only goes double during high stress and illness now. All this time I was still sucking it up and not once mentioned it to Jared. We finally decided to go back to the room and for the first time I told him how off I felt and that maybe I should rest when we got back. Although I laid down right away, I could sense that Jared was anxious to explore so I told him that we should go for a walk around our cabin. The whole time, my breathing got worse and worse. I waited until I almost blacked out before I told him we should probably head back. As soon as we did, I laid down and had 3 back to back arrhythmias. These weren’t skipped heart beats, they were a very dramatic rhythm change that scared the crap out of me. Front that moment on, I only got up to go to the bathroom. Every time I would sit up, or even take a sip of water, my heart rate would sky rocket and I would get winded. I immediately googled my symptoms and convinced myself that it was altitude sickness, however the symptoms were so awful that I called my mom and asked her to help get us a flight home early. We ended up leaving 2 days early and actually that very next morning. At the airport, my heart rate was so high and I was so short of breath that Jared had to push me in a wheelchair. I wouldn’t even stand at security and was taken aside for a full on pat down search sitting in the chair. I didn’t mind. I didn’t care. I just wanted to get home.
It felt like my heart settled down and that my breathing improved as soon as we landed, however that was short lived. After only 2 days, the heart issues came back but this time they were just palpitations. I tried to ignore them but then a few days after that, the heart pains came back and something I had not experienced yet, tingling and numbness in my left arm. I went to the emergency room that evening where my EKG was normal. The only other testing they did was a radioactive test to rule out a pulmonary embolism which was negative and then some minor blood work. I would later find out that my D-bimer came back elevated which is common with clotting or heart issues but no one had mentioned anything to me at the time. I was sent home with the reassurance that it was probably just Dysautonomia and I’d be fine in a couple days.
A couple days later (and one week since we left for our trip) however symptoms began to get worse. My heart was skipping beats very frequently keeping me up all night. I now had sharp stabbing pains in my heart and my whole upper body felt like I had been beaten with a bat. I felt bruised and achy. At this time, I also developed nausea and a very upset stomach. When symptoms got worse, I went back to the ER. This time, they did an echocardiogram which revealed nothing, but they did send me home with an order for a cardiac monitor. After returning home from being there all day, I laid down but within a few hours, my heart felt like I was on a roller coaster. When it would drop, my vision would get grey like I was going to pass out. After almost 3 blackouts in 30 minutes, I told Jared to call 9-1-1. I had severe trembling, my heart was going crazy, and it felt like I was going to die. Frustrating enough, they drove me to the nearest hospital where an EKG was once again “normal”. At this point, I was so confused with knowing something was really off but EKG’s being fine that I insisted on going home. I spent much of that weekend in bed with my heart driving me crazy all hours of the day and night. This time, I lost consciousness twice but didn’t want to be a hypochondriac so refused to go back to the ER in fear of being dismissed.
"This was the end of a February and beginning of March where if you didn’t have a fever, you didn’t have COVID. Heart issues and gastrointestinal issues were not associated with COVID at this point either."
From this point, I finally got a cardiac monitor which was a relief but my symptoms continued. Now 2 weeks post Jackson Hole, I had heart palpitations, tachycardia, nausea, stomach issues, horrible body aches, sharp joint pain, headaches, shortness of breath (my pulse ox would drop to 91-92% on average but got as bad as 88-89%), a dry cough, trouble swallowing (which always flares from MG with an illness), right ear clogging, and more. At one point I had such sharp calve pain that I thought I had a blood clot. I went to my primary who told me it was probably an electrolyte imbalance. I was then referred to pulmonology who ordered a CT scan of my chest for the breathing and coughing. When the results came back with bronchial wall thickening, I was told it was either a virus or allergies. Since I had a dry cough, he believed allergies. The shortness of breath was related to Myasthenia Gravis and “I probably should increase my prednisone”. Doctor after doctor chalked up my symptoms to benign issues. Mind you, this was the end of February and beginning of March where if you didn’t have a fever, you didn’t have COVID. Heart issues and gastrointestinal issues were not yet associated with COVID.
After the cardiac monitor came back, it showed frequent ectopic beats but “nothing that would change my life span or put me at higher risk for complications. It would only affect my quality of life," and the cardiologist believed it to be Dysautonomia as well.
My heart issues lasted months and left me home bound much of the time (the only reason I was thankful for the lockdowns). The other symptoms would come and go but at least they would go sometimes leaving me with breaks. At the beginning, they were so bad I thought I was going to die. I told Jared one evening that I had lost hope which is a huge red flag especially since I’m always trying to be positive and optimistic. I just couldn’t see how I could live like that. I felt awful. I felt like this was it.
Fast forward to May and I was so sick of feeling awful but having nowhere to turn that I decided to take matters into my own hands. I booked appointments with my chiropractor, my acupuncturist, and began an elimination diet. Almost immediately after these appointments, I started feeling better and getting some relief. Slowly but surely, the symptoms would resolve; not all of them would completely disappear though. The heart issues have improved but some days they are worse than before and they are still present every single day. They have sent me to the Emergency Room 7 times which finally in November were recorded on an EKG and heart monitor. This led to an implantable heart monitor that I have today.
In the meantime, I have also found an autonomic specialist/neurologist in Northern California who agreed that I probably have post COVID syndrome. Everything seems to line up and these issues are too big of a coincidence to just happen when they did. Unfortunately, it was too late to be tested at that point and antibody testing would be inaccurate for me due to IVIG.
As more and more research is coming out regarding COVID, I know in my heart that is what has caused these issues. Intuitively I assumed that from the beginning but I wasn’t able to find the help I needed to be validated because there wasn’t much information out there. There still isn't. I, like so many others, am navigating this as best as possible.
"Since that trip a year ago, I’ve been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), Sleep Apnea, and more."
Since that trip a year ago, I’ve been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), Sleep Apnea, and more. I have levels of inflammation in my body, a fragile heart, and other random symptoms that rear their ugly heads randomly. Joining a support group for long haulers is the one thing that has made me feel like I’m not crazy. All I can do is continue to advocate for my own health, search for doctors who will advocate for me as well, and do everything I know how to heal.
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