This newsletter is a way for me to capture my thoughts, experiences, triggers, symptoms, methods, and research I’ve done throughout my journey. If you’re looking for my farmstead newsletter, you can find it here.
First, I want to get something out of the way. I’m not here to debate politics, vaccines, or go down natural-health conspiracy rabbits holes so please read and comment accordingly. I’ve already experienced the wrath of opposition trolling enough on Twitter; I will not do it here. I want to share my experiences exactly as they are and share the progression (and regression) of Long-Covid triggered Mast Cell Activation Syndrome (MCAS).
Why am I writing about it now? This newsletter is not just a chronicle but a gathering place for shared experiences, where we'll explore the challenges, strategies, and personal narratives that mark our unique journey with MCAS. I've felt the impact of this condition on my own life and have been deeply moved by the stories of those I've 'met' through social media. These connections have inspired me to document my own voyage and hopefully provide a source of information and solidarity for others on the same path. It's about honoring our lived realities and refusing to let opposition or misunderstanding cast a shadow over our resilience.
MCAS, as I've come to understand, is a surprisingly common yet often misunderstood condition. Roughly 1 in 6 people live with it — a figure that underscores the importance of raising awareness and fostering conversation.
The trigger for my own MCAS? Well, it's difficult to pinpoint. I contracted Covid and received the booster vaccine within a span of just over a week. While my initial thought was that Long Covid was the culprit, I've since come across compelling arguments that suggest the vaccine could have played a part. This is a complex and nuanced discussion that we'll explore more deeply in future posts.
As for treatment, my own journey has been marked by experimentation, exploration, and learning. It’s definitely been like navigation a complex and sensitive maze. If you're at the beginning of your MCAS journey and seeking a first step towards relief, consider researching a low histamine diet. In my experience, this adjustment can bring some immediate relief and might just provide the spark of energy and motivation needed to delve further into other treatment methods.
MCAS hasn’t just changed my diet or daily routine; it's changed my entire perspective on life. I've experienced a rollercoaster of emotions, from fear and frustration to hope and determination. I’ve planned for the worst; I’ve even said my goodbyes to my family. I've seen my relationships transform, my resilience tested, and my capacity for compassion deepened. I hope that by sharing my journey, I can provide a sense of companionship for those in similar situations and inspire those who aren't to foster greater understanding and empathy.
In future newsletters, we'll delve into a variety of topics. We'll explore diet changes, discuss holistic treatments and mental wellbeing, and share research updates. We'll talk about the physical and emotional challenges, yes, but also about the moments of triumph, however small they might seem.
Lastly, I encourage you to engage with this newsletter. Share your stories, your questions, your insights. We are navigating this journey together, and there is strength in our shared experiences and collective wisdom. Remember, there is power in pause, and even as our lives might seem on hold, they continue to unfold in unexpected and beautiful ways.
Until next time.
Thanks Jess. I’ve just discovered your story and already you’re giving me hope and insight to keep pressing forward. This has been the hardest year of my life, and it’s deeply comforting to know I’m not only not alone, there are others who have walked this path before me towards health again.