10/16/2025
My birthday is coming up in just a few days, and I’ve been spending this week in deep reflection.
Living with a complex chronic illness has taught me that growth isn’t linear — it’s cyclical. It’s seasonal. If you know me personally, you know bits and pieces of story and what drives me every day to show up and shine light into this world.
Today, I want to let you in even more.
Let me rewind: March 6, 2008 shaped the course of my life. It was one of the most emotionally taxing and complex days of my life — and also the day that broke me open.
I was sitting in a neurosurgeon’s office after learning that my L5-S1 fusion surgery hadn’t worked, being presented with a list of not-so-amazing answers, suggestions, and band-aids. In that moment of exhaustion and fear, I asked myself my first intentional question:
“Is there anything else out there that can help me with the way that I’m suffering — and if so, where can I find it?”
That single question changed everything.
It opened a door to curiosity, possibility, and healing. It sparked a lifelong practice of reflection and micro-massive action that has since transformed every aspect of my life into one I’m profoundly grateful for.
And today, after years of research, writing, and collaboration with my dear friend and co-author Dr. Gregory Stock, I’m honored to share the work born from that moment. 💛
📖 The Book of Questions: Living with Chronic Illness comes out November 17, 2025 and is available for pre-order now: 🥰 https://amzn.to/3W3ZJyD
This isn’t a book of answers; it’s an invitation to turn toward yourself with curiosity, compassion, and courage.
As Dr. Mark Hyman, MD, New York Times bestselling author of Young Forever and host of The Dr. Hyman Show, shared:
“The Book of Questions: Living with Chronic Illness is a powerful and compassionate guide that gives voice to the silent struggles so many endure. It doesn’t offer prescriptions—it offers something even more essential: the right questions. These questions invite reflection, connection, and healing, helping us shift from powerlessness to possibility. As a physician who’s spent decades helping people reclaim their health, I’ve learned that transformation begins not with answers, but with the courage to ask better questions. This book is a lifeline for anyone navigating the invisible terrain of chronic illness.” 💫
This project began as a personal practice and evolved into a movement — one rooted in the belief that transformation begins not in finding the perfect answer, but in daring to ask the next brave question.
More to come soon. 🌿💜
The Book of Questions: Living with Chronic Illness
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03/29/2019
One of the many reasons I'm fascinated by genetics. Maybe the FAAH - OUT Gene combo can lead to pain relief. Always knew that "junk DNA" had unknown magical value.
Woman with ‘mutant’ gene who feels no pain and heals without scarring discovered by scientists
‘She reported numerous burns and cuts without pain, often smelling her burning flesh before noticing any injury’
01/23/2019
Omg!! As if my prayers have been answered!! A sponsored ad about the trifecta including Ehlers Danlos from a hospital!!
Finally Eds and other invisible illnesses are getting recognition as well as quicker diagnosis 🎉🎉🎉
A Trifecta of Diagnoses: Chiari Malformation, Pectus Excavatum, Ehlers Danlos
It wasn’t until Nicole was in her mid-twenties that she discovered she had three major health conditions: Chiari malformation, pectus excavatum and Ehlers-Danlos syndrome. Read about her long road to receive those diagnoses, and how she advocated for herself along the way.
09/30/2018
So proud of this young zebra advocate
An Open Letter to Jeff Sessions from a Young Medical Ma*****na Patient
Dear Attorney General Sessions, You don’t know me. My name is Michaela, I’m 20, and I’m a college student with big dreams for my future. I like comedy writing, going to the beach, and studying topi…
09/18/2018
The magnitude of what an EDSer experiences is incomprehensible..
Not all pain is visible
09/09/2018
Love this POTS education!
05/14/2018
***VERY EXCITING NEWS ANNOUNCEMENT***
Based on the results of this study (https://www.genebygene.com/products/TPSAB1-Copy-Number---Clinical), Gene by Gene has developed a clinical assay to identify people with multiple copies of alpha tryptase and as of April 3rd, 2018 Gene By Gene will begin offering doctors internationally the opportunity to test patients for $169. If you wish to help with this effort, we encourage you to share this opportunity with your physicians.
This test is not offered direct to consumer and must be authorized by a physician or licensed genetic counselor. If you wish to take this test please contact your physician directly and ask them to schedule an appointment and order the test for you . Physicians may order the test by contacting Gene By Gene at the below phone number or email address.
Email: [email protected]
Phone: 832-761-9643
For physicians that would like to register for an account and order a test please send an email to Gene by Gene at [email protected] with the following information:
• First Name
• Last Name
• Email
• Address
• Phone
• Organization Name
• NPI #
Or fill out an inquiry form at www.elevatedtryptase.com
To learn more about tryptase, visit the following links:
NIH announcement (includes video)
https://www.niaid.nih.gov/news-events/nih-scientists-uncover-genetic-explanation-frustrating-syndrome
NIH FAQ
https://www.niaid.nih.gov/research/hereditary-alpha-tryptasemia-faq
The Mastocytosis Society Inc News💛EDS Wellness💛Rare Disease United Foundation💛Dysautonomia International 💛EDS Wisconsin, Inc.💛The Ehlers-Danlos Society
Hereditary Alpha Tryptasemia and Hereditary Alpha Tryptasemia Syndrome FAQ | NIH: National Institute of Allergy and Infectious Diseases
What is tryptase?Tryptase is a protein that can circulate in your bloodstream. It is made primarily by cells that are present around blood vessels and in the bone marrow called mast cells, and it is used largely as a marker for mast cell activation, as it can be easily measured by a blood test, espe...
04/02/2018
Who has read this study yet?
This may be the most fascinating study I have ever read!
Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number
Joshua Milner and colleagues show that increased TPSAB1 copy number causes a multisystem disorder marked by elevated basal serum tryptase levels. Shared symptoms in affected individuals include irritable bowel syndrome, cutaneous flushing and pruritus, connective tissue abnormalities and dysautonomi...