Today, I have some hard news to share with you. After years of seeing doctors and chasing symptoms, I have finally found the answer to my continual health decline. It is not the answer that I wanted. I have tested positive and been diagnosed with Chronic Lyme Disease, along with TBRF (a co-infection of Lyme), EBV, and mold toxicity. These are the root causes of my symptoms, but the list of other ailments that have stemmed from them is long and often overwhelming. Some of you have followed my health journey in recent years as I’ve battled chronic pain and fatigue, some of you have heard me talk about invisible disabilities from the stage, but most of what I’ve been battling, I’ve kept hidden from the public eye, not because I wanted to hide it, but because talking about something for which you don’t have a name is both difficult to describe and challenging for others to understand. So lately I’ve largely stayed silent as we continued to search for answers. And now we have them. And I am grateful that the searching is over. And yet, receiving this diagnosis comes with a mountain of difficult things to both process and learn.
“Most of what I’ve been battling, I’ve kept hidden from the public eye, not because I wanted to hide it, but because talking about something for which you don’t have a name is both difficult to describe and challenging for others to understand.”
Because life has taught me to be strong, I’ve been good at hiding the severity of my symptoms, often even from those closest to me: the low-grade fevers, the swollen glands and rib soreness, the amount of energy it takes to stay engaged in conversation, the extreme fatigue that no amount of sleep can cure, the pain, the muscle aches, the crash days, the ways even the smallest of tasks can feel completely overwhelming…the list goes on and on. This has become my daily reality. This is my life with Chronic Lyme Disease.
“This has become my daily reality. This is my life with Chronic Lyme Disease.”
We have a long road ahead of us. There is no known cure for Chronic Lyme Disease. Only when you catch Lyme in the first few weeks of exposure is a full cure with antibiotics really possible. In my case, it has been living in my body for years…possibly my whole life. Lyme is a lot like cancer in that you treat it the best you can, hoping for it to go into remission…but you’re never really “cured.” My goal is to find the best treatments I can, from the best doctors I can, that will provide the most healing possible, and the best quality of life moving forward. But it will be long and slow. What about writing and speaking? Honestly, there’s a lot I still don’t know. With the impact of COVID-19 and my immune system being so severely compromised, I am currently unable to leave my house for anything other than essentials. I am accepting virtual speaking engagements to stay as engaged as possible and financially afloat. For me, speaking and connecting with others is the highlight of what I do. I am writing a monthly column for Baptist News Global. Beyond that, I don’t know what things will look like yet. So much is so uncertain for all of us right now. As I begin treatment, I will know more in time. What about the book club? The book club will continue as planned. I actually received this diagnosis before the book club was launched. It’s just taken me a few weeks (okay, two months) to get my head and heart wrapped around it enough to be able to share this with you. However, the book club and all the plans behind it remain intact and it is a project I’m truly excited about. This is the last week for registration, and I hope you will join me. How Can I Help? Your support and encouragement mean the world to me. I love snail mail. I appreciate your notes, gifts, and check-ins. Currently, I try to respond to every message that I get, but moving forward, please know that I read every one of them, even if I am unable to respond. The obvious burden besides the physical/emotional/mental toll this all takes, is the financial toll. Treatment is expensive and often not covered by insurance, traveling to speak right now is impossible (which is typically my biggest income generator), and concentrating on work is challenging. Things like joining Patreon and registering for the book club help keep me afloat. Hiring me or recommending me to speak is also very much appreciated. And of course, hearing from you and knowing how my work has made an impact in your life always lifts my spirits, even on my hardest days. Today I began treatment, the first step in a long journey. I may not feel strong, but I know that I have you behind me. And because of that, I will continue to be brave. Know that I love and cherish each of you.
Keep Being Brave and Living Wildly Unashamed, Amber Cantorna