When I was 3 years old, my mom and I were driving down Highway 1 on the Northern California coast where I was born.
I was staring out at the Pacific Ocean when suddenly I turned and asked, “Mom, are you always thinking?”
“Hmm,” she thought. “I think so. I think I’m always thinking. Why do you ask?”
“Because I’m always thinking,” I replied. “And I can’t stop.”
***
For as long as I can remember, I have been curious and skeptical about everything - never content to do as I was told or fully believe what those in positions of authority told me.
My favorite game to play as a child was teacher. All the neighborhood kids would gather in my front yard and listen, enrapt, as I told them all about the secrets that the adults were keeping from us - the truth about Santa, the Tooth Fairy, and where babies come from. More than once an angry parent showed up at our front door to confront my mom.
“I’ll talk to her. But when my daughter asks me questions, I tell her the truth,” my mom would shrug.
In third grade, I suffered an unrecognized vaccine injury a week after I had strep throat. My brain swelled, my personality changed, I experienced hallucinations and I completely dissociated from myself for the better part of a year. I changed my name to Angelica and I got kicked out of Catholic school for fighting and questioning the Bible. If I were a boy, I probably would have been diagnosed with autism, or maybe ADHD. If this happened today, with the right pediatric specialist, I might be accurately diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
At 14, I suffered yet another major health crisis. I had Epstein Barr Virus (EBV/mono) and strep throat at the same time, but unfortunately doctors completely missed that I had EBV because they didn’t test me for it despite classic, obvious symptoms. They only tested me for strep throat, and since that was positive they looked no further. The strep didn’t clear after one round of antibiotics (because the root issue wasn’t strep) so I was on them for a month. This exacerbated the damage of EBV, completely wrecked my gut, and left me bedridden.
For some reason, because I was already out of school with severe illness, the adults around me decided this would be a good time for a double bunionectomy. I had to be given almost double the anesthesia for my body weight because it wasn’t knocking me out. I was wheeled out of the hospital with 4 screws in my feet and a bottle of Vicodin.
When I still couldn’t eat or get out of bed for nearly a year after untreated EBV followed by major surgery, my condition was pathologized as depression, and I was prescribed Paxil - which was/is not approved for use in children. When they finally ordered a barium swallow and found the ulcers in my duodenum (a common side effect of SSRIs and symptom of pancreatitis likely caused by the vaccine injury when I was 7), I was told it was likely stress induced and I was prescribed proton pump inhibitors.
By this point I had given up on modern medicine.
I stopped taking their medications, because not a single one worked for me in the way I was told it would. One of my mom’s friends convinced me to try acupuncture, and as the first needle went into my arm, my skin erupted in hives.
Great, I thought - I’m allergic to acupuncture.
I graduated high school in a wheelchair and all I had learned in the last four years was that modern medicine was a sham. I assumed I had some weird genetic condition that was not yet recognized. It would be almost 20 years before I found out I was right.
I exited the medical system and hoped never to return.
***
I struggled with my health all through my 20s and early 30s, but I managed as best I could. I went to college and studied psychology and sociology. I met my now husband. We moved to New York. I built a career in strategic planning and funding for the government. We traveled the world. We moved back to California, bought a house, and started a family.
Despite my persistent, chronic, recurring, and undefined health challenges, I managed to build a very successful life.
Then I got Covid.
It was March 2020, I was 20 months postpartum, and I was totally depleted because I didn’t know how to appropriately support myself.
My immune system struggled to recover and in the following year I finally got several diagnoses that had been a lifetime in the making - Ehlers Danlos Syndrome (EDS), Lyme Disease, Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and Small Fiber Neuropathy, among a dozen other conditions.
Realizing that there was finally actual medical research available and relevant to me, I dove down the rabbit hole of human health. Much of what I found completely changed my world view.
Now, nearly 4 years later, I have healed many conditions. I had another baby. And I started an Instagram account where I share the interesting research I find, helping others heal themselves and supporting them in shifting their own worldview.
That Instagram account has achieved a very dedicated, niche audience of intelligent critical thinkers, who appreciate the data-driven storytelling I provide through my Instagram story slide deep dives. The support of those followers - the support from you - is why I’m branching out to this Substack to give you a more cohesive peek into my always thinking brain. I’m hoping to turn some of those crazy highlights into cohesive articles that better tie everything together.
Welcome to Undiagnosed. I’m so glad you’re here.
Are there people who are not always thinking? As in they have a brain that isn’t having thoughts? Now you have me pondering…holy cow! What does life look like if you’re not always thinking?
I’m always thinking, too, and quite frequently I’m thinking about something you shared or put me on to. Yay for long form writing!