Meet Chronic Illness Warrior

My Health Journey: Navigating a Maze of Diagnoses

Throughout my life, I’ve faced numerous health challenges, starting with a weak immune system that made me prone to infections from a young age. Little did I know that this was just the beginning of a long and complex journey towards understanding my health. In this blog, I’ll take you through the rollercoaster ride of my medical history, from the misdiagnoses to the eventual discovery of the various health conditions that have shaped my life.

High School and Sports Struggles

My health journey has been an intricate puzzle, riddled with misdiagnoses and moments of disbelief. As I entered high school, I began experiencing debilitating symptoms that were often dismissed by doctors. These early symptoms were just the prelude to a long and complex journey towards understanding my health.

Once the school year began, I faced an even more challenging predicament. The relentless fatigue from volleyball practice spilled over into my academic life. I had always been a studious student, but now I found it nearly impossible to muster the energy needed for schoolwork. This was a stark departure from my previous self, and it deeply concerned me.

On top of the debilitating fatigue, I began experiencing lightheadedness and dizziness when standing up. These episodes were alarming, and I knew that they were not normal. Seeking answers, I turned to doctors for help.

The Gaslighting Experience

Unfortunately, my early attempts to seek medical advice were met with disbelief and misdiagnoses. One common explanation put forth was that my symptoms were caused by anemia. However, despite trying supplements, my condition showed no improvement. One doctor even suggested that I was too young to be experiencing such issues, dismissing my concerns as if they were inconsequential.

Adding to the complexity of my symptoms, I also experienced persistent joint and muscle pain. A pediatrician dismissed this as “growing pains,” a diagnosis that did not sit right with me.

A College Setback

My health issues first became apparent during my college years when my well-being deteriorated significantly. Frequent infections led to several academic breaks, and I even had to undergo surgeries. In 2011-2012, doctors initially diagnosed me with PCOS, Endometriosis, Celiac Disease, and Depression. However, as it turned out, they had misjudged my condition.

The Misdiagnosis Saga

One of the most frustrating aspects of my journey was the misdiagnosis of depression. I knew there was something more to my health issues, and I desperately wished that they had listened to me when I told them I wasn’t depressed. It wasn’t until later that they discovered I was suffering from not one, but two sleep disorders: Narcolepsy with excessive daytime sleepiness and mild sleep apnea. The journey to finding these sleep disorders was just the tip of the iceberg.

The Lyme Disease Discovery

After two years of bouncing from one specialist to another, I finally received a diagnosis that shed light on my myriad of symptoms: late-stage Lyme disease in 2015. It was a relief to finally have an explanation for the health challenges I had faced for so long.

Uncovering Co-Infections

In the following year, a different doctor decided to dig deeper and tested for co-infections related to Lyme disease. The tests came back positive for Babesiosis, Tick-borne Relapsing Fever (TBRF), Bartonellosis, and EBV reactivation, adding more layers to my already complex health picture.

The POTS and Mast Cell Activation Syndrome (MCAS) Puzzle

My journey took another turn in late 2017 when I was diagnosed with POTS/dysautonomia, which explained the tachycardia, fainting episodes, and vertigo issues that had plagued me for over a decade. The next year, doctors also identified Mast Cell Activation Syndrome (MCAS) as the cause of the frequent allergic reactions I had been experiencing for years.

The Year of Concussion and More

In 2019, I faced a new setback when I suffered a concussion following a fainting episode. Then, in 2020, I received more diagnoses. After enduring 18 years of unexplained symptoms, I finally received the diagnosis of Chronic Immune Dysfunction and Myalgic Encephalomyelitis (ME).

The Expanding List of Diagnoses

As if my health journey couldn’t get more complex, 2021 brought additional diagnoses: autoimmune Small Fiber Neuropathy (SFN), Hyperadrenergic POTS, and primary immunodeficiencies.

Conclusion

My journey through the maze of diagnoses has been filled with ups and downs, moments of frustration, and moments of relief. Each diagnosis brought me one step closer to understanding my health and finding ways to manage my conditions. While my health challenges have been overwhelming, I’m grateful for the doctors who persevered in seeking answers and for the support of my loved ones who have been with me every step of the way. Through it all, I’ve learned the importance of advocating for oneself and the resilience of the human spirit in the face of adversity. My journey is ongoing, and I hope that by sharing it, I can raise awareness and offer support to others facing similar health battles.

Embracing Life with Chronic Illness: My Journey to Health and Advocacy

For a significant portion of my life, I’ve been grappling with chronic illnesses, but I refuse to let them define who I am. Instead, I’ve chosen to use these challenges as sources of motivation, propelling me towards a healthier lifestyle, nurturing lasting relationships, and pursuing a meaningful career.

Breaking My Silence

It wasn’t until May 2018, during #lymediseaseawarenessmonth, that I decided to openly share my health struggles. I felt a sense of social responsibility to shed light on the prevalence of tick-borne infections, aiming to make friends and acquaintances aware of the very real consequences of neglecting precautions against ticks. My hope was to educate and inspire others while providing a voice for those facing similar challenges.

Discovering a Supportive Community

As my health continued to evolve, so did my approach to sharing my journey. Instagram became a vital platform where I found a supportive community. Here, I could be unapologetically raw and imperfect, breaking free from the double life I had lived for far too long. Instead of concealing my feelings and symptoms, I embraced vulnerability and authenticity, connecting with others who understood the daily struggles of living with chronic illnesses.

Navigating the Challenges of COVID-19

In March 2020, my life took an unexpected turn when I became one of the early victims of COVID-19. I contracted the virus and subsequently developed long Covid, which not only impacted my baseline health but also exacerbated my existing condition, ME (Myalgic Encephalomyelitis). The journey through long Covid was challenging, to say the least.

Facing Severe ME/CFS

Despite the hurdles I had already overcome, I faced another setback in February 2021 when I was reinfected by a masked home care nurse. This time, I transitioned into the realm of severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). The journey ahead was filled with uncertainties and new obstacles, but I remained steadfast in my determination to maintain a positive outlook and continue sharing my experiences.

Sharing Experiences and Tips

As I navigate life with multiple chronic illnesses, my mission remains the same: to share positivity, vulnerabilities, and the tips and tricks that have proven invaluable on my #journeytohealth. I hope that by sharing my story, I can provide inspiration, support, and valuable insights for others facing similar battles. Together, we can break the silence surrounding chronic illnesses and create a community of understanding and resilience. #LymeDontKillMyVibe