My Struggle with Long COVID

Navigating the Unknown: My Personal Journey Through Long COVID, Vaccine Reactions, and the Search for Answers

Today's post takes a departure from the usual light-hearted content focusing on projects and happiness. I've decided to share a more personal and introspective piece. Recently, my husband and I battled COVID during the Christmas season, and regrettably, I'm still grappling with its aftermath, which has affected my ability to showcase projects or share recipes.

While I've briefly touched upon my experiences with the vaccine before, I'm noticing an increasing discussion around long COVID. Initially, since my issues were linked to the vaccine itself, I didn't think I fit into that category. However, as I see more individuals affected by both COVID and the vaccine, I feel compelled to open up about my journey today. In doing so, I hope to connect with others who might be facing similar struggles and provide a source of support.

My history of illness has consistently targeted my respiratory system. Certain foods trigger breathing difficulties for me, and past sinus infections often escalated into respiratory problems. Consequently, the looming threat of contracting COVID in 2020 was a significant concern.

As the world adjusted to remote work, I, too, transitioned but also visited the office on a weekly basis. Back then, not everyone seemed as cautious as I was. I became aware of people I knew who had lost their lives to the virus, leaving a lasting impression of the destruction it could impose. My husband and I chose to stay within our bubble, while others planned vacations in 2021, we referred to this as our life under the dome.

In March 2021, when the vaccine became available, I found myself hesitating. At my workplace, appointments were arranged for employees to receive the vaccine through the health department near one of our offices. Faced with the need for an immediate decision for my boss, thorough research became a luxury I couldn't afford. Nervous due to a history of allergic reactions, including responses to medications, I was understandably nervous. Despite contemplating cancellation, the potential for the vaccine to restore a semblance of normalcy ultimately swayed my decision.

Anticipating a possible reaction, I had my mom accompany me to the vaccine appointment, considering the two-hour drive there and back. After receiving the vaccine, an hour into my drive home, I began experiencing chest tightness – a concerning sign that a reaction might be unfolding.

Subsequently, joint pain emerged everywhere in the days following, leading me to seek help from my family physician. Tests for lupus and rheumatoid arthritis came back negative, prompting a referral to rheumatology. Their verdict was an adverse reaction to the vaccine, a sentiment not echoed by other specialists I would be sent to in the following months.

A confusing trail of opinions persisted, immunology suggesting an overwhelming immune response, while pulmonology dismissed the vaccine link, focusing on asthma and vocal cord dysfunction (VCD) since I also lost my voice. I was sent to Ohio State to be tested for VCD, resulting in a negative response. My physician retired, and his replacement dismissed my concerns, labeling me a liar. Feeling stranded in a medical maze, I had to leave my job due to lack of answers and severely declining health.

Unable to walk across a room without gasping for breath, and allergic reactions to every prescribed and even familiar over-the-counter medications became an unwelcome norm. Dark days turned darker when I contracted COVID, intensifying respiratory distress. Seeking help from pulmonology proved futile; the receptionist's reluctance to prioritize my situation, and indicated I would just need to cough since I had COVID left me feeling abandoned.

With no help in sight, and my health deteriorating rapidly, I made the desperate decision to go to the ER. There, a harrowing reality unfolded as they acknowledged a concerning trend of cases like mine, exacerbated by a lack of physician assistance.

The irony of being called a liar by my family physician while others faced similar struggles haunted me. It seemed easier for some to deny the problem than address the complexity of cases like mine. Despite the emotional toll, I persisted until immunology confirmed in April 2022 that the vaccine had indeed affected me. She explained the documentation collected over the course of the past year indicated with certainty the vaccine was the cause and had attacked my immune system.

While on a six month waiting list for a new family physician, my immunologist stepped in with prescribed medications to address the challenges posed by COVID-induced bronchitis. Witnessing the severity of my labored breathing, she expressed genuine concern, noting she had never encountered someone in such a dire state. Grateful for the support, I embarked on a journey toward recovery.

Given my unfamiliarity with the repercussions of COVID, I turned to pulmonology for guidance. However, upon arriving for my appointment, I discovered the receptionist had failed to convey the urgency of my situation to the specialist. It was at this pivotal moment that the decision was made to introduce a biologic treatment for my asthma, marking a crucial turning point in my ongoing battle for better health.

I have continued to have reactions to medications, the injections my husband gives me for asthma have caused a rash on my face, prompting a recent visit to dermatology. Here, I encountered empathy and understanding, a stark contrast to previous experiences. The dermatologist recognized the strain on my immune system and shared insights into the growing awareness within the medical community regarding the challenges presented by both COVID and the vaccine in relation to immune system deficiencies. She also mentioned there is a Long COVID group that meets at The James at Ohio State located in Columbus, Ohio.

Life looks very different for me since COVID turned my world upside down. Due to my immune system being compromised, I rarely leave the house since I am unable to fight off infection. I had hoped the injections I receive from immunology would assist in getting my immune system back to normal, but when I met with dermatology, I received a second autoimmune diagnosis. Her response was, your immune system is really fried, and you may continue to see more reactions in the future.

Navigating these challenges often feels like a tennis match, with uncertainties tossed back and forth over the net. Despite the unpredictability, there's a resilient hope that things will eventually take a positive turn. Looking forward, I'm eager to return to our projects and crafts. Although our bathroom remodel was momentarily put on hold, there's optimism that we'll be kicking off the renovation in the upcoming week.

If you or someone you know is struggling with the complexities of COVID and vaccine-related challenges, consider sharing this post with them. I spent a significant amount of time keeping my experience to myself, out of concern that someone might make a decision solely based on my situation, especially if it could impact their well-being. However, now I believe it's crucial to speak up, ensuring that others don't feel as isolated in their struggles as I have throughout this journey. Together, we can foster a sense of understanding and support.

Thank you for your ear,

Cara