That’s me, the short one in front. (That stunned, surprised look has pretty much never left my face.) I’m the seventh of eight kids, raised in a big religious, conservative family in Southern Utah. We’ve got all kinds of health issues running through our genes. Any family gathering includes meals where everyone brings their own food and the table has options for everyone including vegetarians, those who eat paleo, those with allergy sensitivities, and everything in between, as we all try to meet our individualized needs.
I had frequent urine infections from the age of four. I was experiencing a few types of abuse concurrently and like many kids, I had no language to share that with anyone. I had low-grade fevers and high white blood cell test results almost constantly. No one knew why that was, or what to do with that information, except to dose me with fever reducers when my fever got a little higher than my “normal” high, and put me on antibiotics for the UTIs.
I had mental issues happening at this same time. Most members of my family would disagree with me, but I believe I was raised in a cult within a cult. My family is LDS and we had our own, even more special brand of Mormonism that we lived by in our home. By the time I was thirty, I would be diagnosed with a few dozen things – mental and physical. If I had inflammation in my brain or my brain was simply affected by body inflammation, I don’t know. Science indicates that prolonged inflammation anywhere in the body not only affects those body parts, but also affects the brain, which in turn affects your emotions.
I began exhibiting self-harm by the age of five and experienced disordered eating during middle and high school ages. What started in elementary school as stomach aches and possible food allergies became an easy transition into trying to gain some control of my life with food. When I got pregnant at the age of seventeen during my junior year of high school, my body was literally starving. I’d already been in an eating disorder program, in talk therapy, and on antidepressants.
I continued to lose weight up until my fifth month of pregnancy, at which point my doctor, (my dad), put me on a weight-gaining program for the sake of the baby. I drank a lot of gross-tasting drinks the consistency of paste. And I gained about fifty pounds in three months.
After my son was born I had three more kids in the next five years while living in a foreign country with no community or support (ages 19-23). Pretty scary for a sheltered kid from a small town in Utah. I lost and gained weight. My brain ping-ponged between unhealthy and a bit more stable before dipping to “really-in-a-bad-place” and then back up again. I sometimes felt suicidal. I almost always had intrusive thoughts. I tried various med cocktails. I went in and out of talk therapies. I tried various creative outlets. I spent weeks almost comatose. I nursed a pretty healthy alcohol problem for about a year trying to self-medicate.
Unless I was awesome, I mean, because I went through periods of being the best mom you’ve ever seen. But that’s the thing. My kids didn’t know what Mom they were going to get that day.
In 1998, after moving back to the states, the family cat scratched the back of my shoulder when I was trying to give him a bath. The claw went in and out of my back, deeply puncturing before retracting, leaving the crud under the cat’s nail deep in my shoulder. I mention this because people who develop an autoimmune disease will have an “event” that triggers their immune system to begin overreacting, and some of my doctors believe this is mine. For some people, it can be a tick bite or something else that makes your immune system kick into high gear. For me, it was a kitty cat.
After Tiger clawed me, I developed a low-grade fever that didn’t go away followed by a headache. A week later I had a lump developing under my right arm in the center of my armpit. It hurt. It was red and tender. And it was growing larger every day at kind of an alarming rate. And I was tired. Man, was I tired. Like you just ran a marathon tired. Not that I would know because I never have, but I imagine that’s what it would feel like.
I went in to see the doctor and she told me not to worry too much because it most likely wasn’t cancer because cancer hardly ever grows fast and it hardly ever hurts, but whatever it was, it was ugly and mean and we should get it out. I agreed. She scheduled me for the next morning, because for all her pshawing, she actually was concerned.
She removed a plum-sized, gnarled mess that was an enlarged lymph node. She had to cut through some nerves (which took about 8 years to mostly reconnect). She told me I had serious complications from Cat Scratch Fever. I thought she was kidding. She was not.
She warned me that I would be tired for a few weeks and to take it easy. (I felt like a semi had driven over me for about a year.) She put me on some heavy antibiotics and gave me a pressure sleeve to wear to avoid lymphoma, which I never developed.
And I remember thinking things like, “I don’t know what just happened,” and “That was weird,” and ‘What’s Cat Scratch Fever?” And then I spent the next ten years just not feeling that great.
So, that was my Event. Or rather, An Event. Because about exactly ten years later I went to Colombia and met Juan Valdez on a truly wonderful trip to learn about coffee and was stung on both ankles by dozens of gigantic red fire ants on a beautiful mountain in Pereira. My ankles were swollen for days and the bites were quite remarkable. I was, again, exhausted for weeks. The penny-sized scars from the welts were dark maroon and visible for over two years. Some of my doctors think that could be my Event. Or another Event. Why not have two?
In any case, An Event pushes the immune system of a person pre-disposed to an autoimmune disorder into system shock. Their immune system begins to work and work and work and work, doing a really good job working and working and then when there isn’t the problem to work on anymore, such as the ant bites begin to heal, the immune system doesn’t get the shut-off signal and doesn’t stop working. And all that’s left to work on is healthy stuff, which unfortunately won’t stay healthy for long. In my case, it was my chest and lungs as well as my digestive tract as a secondary issue. Throw in some joint issues and you’ve got a party. My mental health sometimes worsened in ways that seemed unpredictable. At the time, I had no way of knowing how intricately our digestive tracts and minds are connected.
I didn’t know it was lupus yet. It took years of frequent vomiting up what seemed to be unconnected foods at random times and bouts with diarrhea, urgent care visits because I was unable to breathe due to rib pain and pleurisy, feeling depressed because I couldn’t figure out what was going on with my body, weight gain and more weight gain, aching legs and joints, a failing thyroid, and more doctors than I can count looking at me like I was crazy before I’d get diagnosed. I call those years the “Ish” years. I was Chronic Fatigue-ish. And Fibromyalgia-ish. Walking Flu-ish? Maybe Parasite-ish? And a lot of other Ishes.
In 2010 I was finally diagnosed with Lupus SLE and fibromyalgia. When my new team of doctors explained the protocol they recommended, I naively refused to do the treatment they outlined. I was scared. Their treatment was full of heavy-hitting drugs and I was worried about the side-effects. I was also angry about how long it took for any doctors to help me. I’d been feeling sick for a decade and felt like an earlier intervention would have made a difference in what classes of drug treatments were needed. So, by resisting, I was exerting some independence and working out some frustration.
Additionally, I had been raised in a family that was suspicious of medicine (which is ironic, because my dad was a GP!) and instead valued faith, prayers, the priesthood, and alternative healing modalities, so that’s where I started.
If you’ve been keeping score with the home game, your “Leoh’s Diagnosis Score Card” should look something like this: Urine Infections, Fevers, High White Blood Cell Count, Headaches, Stomachaches, Food Allergies, Anorexia, Bulimia, Depression, Manic Depression (Bipolar), Dissociative Identity Disorder Not Otherwise Specified (DDNOS), Suicidal Ideation and Attempts, Cat Scratch Fever, Pre-Lymphedema, Hypo-Thyroid, Anemia, Obesity, Vitamin D Deficient, Bursitis, Rheumatoid Arthritis, Lupus, Gastroenteritis, and Fibromyalgia.
Instead of my doctor recommended protocol, I began making changes like adding naps to my day and modifying my diet. I cut out gluten and sugar and embraced eating paleo, which helped my digestion. That was enough to help my inflammation numbers go down drastically, which is when they say you’re in remission. I was also adding essential oils, supplements, and energy practices to my life. I believed they helped me and who knows, maybe they did.
This was sometime around age 42, and my brain started feeling differently than I could ever remember. It felt like what I imagine a “normal”* person’s brain feels like, without persistent internal chatter or the intense inky, black downs of a person with manic depression or the helium-highs of the bipolar brain. This is about the time I started researching alternative remedies and got pretty deep in the woo. (Some of those woo woo things I still use today as part of my health routines, but much of it I let go of after a time.) I began in earnest to study reiki**, supplements, nutrition, energy medicine, and essential oils. (I may have overused the term “positive thinking” regularly.)
I got certified in many health-related things and a few years later opened a wellness center, which I loved. And I wrote this book that people tell me has been helpful (I’m so glad!).
My little San Diego wellness center was in beautiful Banker’s Hill. I taught group classes on self-care and loved seeing clients in person on my table. I worked on their feet, did reiki and craniosacral, suggested supplements and essential oils, but mostly, they talked and cried and we sometimes problem solved together.
During this same time, I entered a really big inflammation flair and started to feel like a personal failure. I had bursitis so badly there would be days that I couldn’t walk except very painfully to the bathroom and the couch. I started vomiting randomly again and having intermittent fevers. My brain fog came back and no amount of essential oils or energy work helped. This was a very powerful learning experience for me after leaving my woo phase so completely sure that alternative methods could work alone. Over time I came to understand that while those things can be supportive for some people, it was the talking, listening, being present, and problem solving when asked that were the most valuable things I offered. Those were the practices I took with me when my wellness center closed.
For the next few years, I took on more mentoring clients and focused on creating bite-sized self-care routines for people who hadn’t yet learned how to take good care of themselves. I noticed that the majority of my clients had intersections between chronic illness, trauma, neurodivergence, and sometimes gender and/or sexuality. I didn’t have health care for a few years and in lieu of actual medications and a doctor’s care, I became rabid about my nap and bed times, cut out non-fruit sugar, tried to resist the call of bread (gluten), and took 800mg every four to five hours to manage my inflammation. (For those who love maths, that’s 3200mg of ibuprofen a day. For years.)
I spend over two years largely nomadic, traveling up and down the West Coast, teaching workshops about the parasympathetic nervous system in what I called “Your Built-In Chill”***, and seeing clients. I loved it so much while I was doing it, but it was really taxing on me physically and emotionally. (Now, I really like having a home!)
When the pandemic started, I moved to Seattle. About that same time, my health took another serious nosedive. In the last few years, I had a radical hysterectomy which removed all my reproductive organs, was diagnosed with Sjögren’s syndrome, Hypermobility Spectrum Disorder (hEDS), and Lipedema, each one a serious issue with necessary modifications to how I live my life. I also began the drug treatment protocol suggested by my new specialty team (a similar plan as a decade ago from my original doctors). This time, I’m listening more closely to what they have to offer.
So. How does someone with a plethora of chronic issues, small and large, find health stability, increase joy, and find reasons to stick around in a sometimes pretty painful meatsuit? Good question. No, I didn’t find some magic pill or food or routine that made everything perfect. I also, sadly, did not win the lottery, but to be fair, I don’t play. Has every day since 2011 been a day where I exercised for 30 minutes with energy to spare, drank green smoothies, volunteered in my local community, and slept like a log? No, my friend. No.
The biggest thing I’ve done to support my health is to research and explore every healing modality and science-backed support that I feel might make a difference for my health. I’ve kept the ones that actually worked for me and let go of the ones that didn’t. (You might find some of the ones I’ve let go of serve you well!) I found ways to treat my body as a whole instead of just targeting symptoms. And I found ways to target especially incapacitating symptoms so I can work on my body as a whole. I spent time getting to know myself in new ways and I opened my mind to believing that more was possible than I could imagine. I also learned to fully rest sometimes, instead of always trying to “fix” me, as if I am a problem to be fixed.
My story and journey in no way invalidate your story and your journey. Things that work for me might not work for you. (Things that work well for me one day might not work well for me the next.) The best I can do is share what I’ve learned along the way and hope it might help someone else. If that’s not you, no worries. I hope you find something else that does help. (<3 heart emoji here!) Please bear with me while I over-explain a little of how I got to where I am now. Some of it gets a little science-y. I have a lot of research to share with you. I’m condensing things, obviously, but along the way you’ll find references to books I love and people that are super smart and inspiring. I encourage you to seek them out and do more research on your own.
*Side note: Yes, I know that there is no “normal.” It’s a figment of an ill person’s imagination – a wisp of silky hope they hold out in front of them that eludes their grasp, a place they can never reach. That’s because it doesn’t exist. But in this context, I mean to use it as a general baseline, where that baseline is a person that hasn’t struggled their entire life with so many issues. (Still with me? Good.)
** Reiki My relationship with being a Reiki Master has changed over the years. While I do use my own intuition and body listening skills in my practice with clients, which includes what I learned while training to become a Reiki Master, I no longer give attunements to others or consider myself a Reiki master. I became passionate about Reiki when I believed my family genealogy included indigenous peoples. I have the utmost respect for the Reiki Master who taught me and invested their time, energy, expertise, and love into me, and who I learned from specifically because I believed they had lineage that was similar to what I believed at the time was my own, along with Japanese lineage and training. That family myth has since been disproven via genetic testing. I’m made of 99.7% colonizer bloodlines. I have no claim to be a Reiki Master or spirit worker and I refuse to knowingly contribute to the harm done to other cultures by white colonization, appropriation, and spiritual bypassing. My relationship to all kinds of energy work has also generally shifted, but that’s a story for a different day.
***My workshop, Built In Chill, was based on the principles of Temple Grandin’s Hug Machine. I taught folks how to use ropes to do a self-tie that gave the relief of containment. A wonderful, relaxing tool for neurodivergent folks.
–Updated March 2025