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My name is Jaime. I’m a kindergarten teacher and a mother of two young children. Following the lockdowns and returning to work, I wasn’t too concerned about my health, but I wanted to protect the kids in my classroom and their families. I had my first Moderna vaccine dose in January of 2021 and my second in February. Later that same month, I’d wake up feeling exhausted. My body was tired, and I couldn’t do much. I was dizzy. I worried about getting into car accidents when driving because everything was moving when I turned my head to check traffic. Also, when I stepped on flat ground, it felt like I was stepping down. It was scary.
In March of 2021, I went to my primary care provider (PCP), who said I might have mild but not “typical vertigo.” He gave me some meds and sent me on my way. I never took the meds because I wasn’t convinced it was vertigo (vertigo runs in my family, and I wasn’t experiencing the same symptoms I had always heard about).
I continued to go to work every day, pushing myself to be an extraordinary teacher. I was scared, though. I didn’t know what was wrong, but I knew something was.
Out of nowhere, the right side of my neck was very tight. My left arm also started to become weak, and I couldn’t lift my arm to close the windows in my classroom.
Additionally, I had lost about 10 pounds despite not changing my diet or activity level. I thought that maybe it was stress, but at the same time, because of the timing of all these strange symptoms, I started to wonder if I was having an adverse reaction to the COVID vaccine. Regardless, I knew it was time to seek care. Beginning to seek care for vaccine injury
First, I decided to see a chiropractor for my neck pain. I went several times but wasn’t getting better, so I stopped. I went to a spine specialist and got magnetic resonance imaging (MRI), but nothing explained how I felt.
In May, feeling frustrated, I called my PCP again and updated him on what was going on. We did some blood work for antinuclear antibodies (ANA), which came back positive, along with my rheumatoid factor test.
I was starting to worry that maybe I had an autoimmune disease and was concerned about my health. Symptoms were mounting, and they included:
increasingly weak muscles
extreme bodily fatigue
not being able to move my left arm
weird joint pain in my hips, ankles, and behind my knees
Upon waking, my legs were tingly and heavy. It was hard for me to talk. I kept pushing myself because I didn’t want to disappoint my students. I kept working and figured I would get the chance to take care of myself during the summer break.
I started to see a physical therapist (PT) once summer came around. I was determined to gain my strength back and get better. By this point, I had lost about 15 pounds, and I knew that wasn’t good. The memory loss was affecting my daily routine, and my joint pain was also getting worse and becoming more frequent.
I also saw a rheumatologist. He thought I might have lupus, and he did more blood work. He noted that I had Raynaud’s syndrome (when blood flow to the extremities is restricted) and possibly Sjogren’s syndrome since I had dry eyes and mouth. I left feeling overwhelmed and not sure what to make of it.
The results of the blood work were inconclusive. The rheumatologist thought I may have had early onset lupus without all the symptoms. I started to research things knowing that I was my best advocate. A lot of my symptoms aligned with lupus, but I wasn’t convinced. At night, my face would get hot and look like a butterfly rash, but by morning, it was gone. I still get this often. I didn’t have any swelling.
Luckily, physical therapy greatly helped my neck and arm over the summer months.
I was nervous at the start of the school year because of my memory issues, fatigue, and brain fog. How would I have the energy to get up and go to work? How would I teach children if I lost my train of thought mid-sentence? I felt like my brain was failing and I didn’t know what to do.
I started to see a neurologist at this point, and he wanted to perform a cognitive test. I wrote examples down for him about my memory, like:
opening the dishwasher to put soap in and not being able to figure out how to close the soap holder
opening my contact case and not being sure whether I put my contact in
opening the fridge to prepare something and forgetting what I needed
letting the dog out and never be sure whether I gave her a treat
taking a shower and forgetting whether I washed my face
The test was challenging, and I knew I didn’t do well. I even left my water bottle in the office and had to go back to get it. Then, when I got to the parking garage, I couldn’t remember where I parked my car, and it took me 25 minutes to find it. I was completely exhausted from the cognitive test.
The neurologist called me the next day, saying, “You and that test didn’t get along. I don’t know how you found your car, let alone drive your car.” I scored lower than people with severe Alzheimer’s disease. He suggested I see a neuropsychologist for anxiety.
I knew it wasn’t anxiety, but I saw a neuropsychologist anyway. He gave me another cognitive test, and I scored all over the place. He said he couldn’t diagnose me and that if I was in an accident trying to sue someone, he’d look me straight in the eyes and tell me I was faking the whole test. I told him, I’m not suing anyone, and I want my memory back and to feel better.
Trying to cover all my bases, I also made an appointment with a cardiologist. I had an abnormal electrocardiogram (EKG), a test performed to help diagnose a problem with the heart. I also took a stress test and started wearing a Holter monitor. The cardiologist told me I was 37 going on 75 and suggested I try a whole, plant-based diet—no sugar, gluten, meat, or dairy. I knew this would be challenging, but I was willing to try it because I wanted to get better.
I noticed a difference in my symptoms within a month after going plant-based; the pain in my arm was gone, and my joint pain had decreased significantly. When I fell off the diet, I noticed that my brain fog was terrible the next day. I was able to stay on the diet for 5 months.
During this time, I had my first appointment with a rheumatologist in New York City who had experience treating patients with effects from the vaccine and long haul COVID. She spent over an hour talking with me and suggested all sorts of possible diagnoses, including long COVID. I told her I had never had COVID; she told me that some people may get the virus and never know.
I took a T-cell test to detect if I had COVID, which showed that I did. I was shocked but excited to have an answer finally. I started to do a lot of research on long COVID, and it sounded like what I was experiencing. Because of how high my spike protein has been since I started getting symptoms, I believe I have long-haul COVID due to the vaccine.
She referred me to a few specialists who got me started in vestibular therapy for my vertigo-like symptoms, vision therapy, and cognitive therapy to learn how to live with a brain that’s not working so well. These helped a lot.
Living with vaccine injury or long COVID is very challenging because they’re both new diseases that nobody understands, including healthcare providers. There aren’t diagnostic criteria or known treatments like most other chronic conditions. And since these illnesses are invisible, most people don’t grasp the severity of symptoms and how challenging it is to get through the day.
I’ll tell my friends how I’m feeling, and they’ll tell me that I look fine. People don’t see how I am at home. They don’t see how I’m in bed for the rest of the day after going to work. They don’t see how I can’t walk to my car after packing up my classroom. There’s a lot of judgment on how people look, and I wish people were more understanding.
All our stories are different, and we can learn so much from each other in our search for answers and healing. Part of my job now is to help others with long COVID or vaccine injury as much as possible.
You know your body best. Continue to advocate for yourself, and don’t give up. I know it can feel overwhelming, and some days it might be impossible to feel optimistic, but with our continued efforts, we can find improvement and get back to our lives.
Jaime is a kindergarten teacher and mother of two young children. She enjoys spending time with family and friends when she's not teaching. Jaime's is the "fun" house, where kids can make slime, paint, and run around the yard. Before long COVID, Jaime enjoyed filling her house with friends and family. She also enjoyed bike rides, long walks, hikes, playing outside with her kids, and adventures. Jaime believes she will see a significant improvement in her symptoms one day and return to the things she loves to do.
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If you're interested in sharing your story or experiences with the Kindred community reach out to the Content and Community Manager at Talia@hugo.health.