Almost Dead at 27

According the Hitchhiker's Guide to the Galaxy, the answer to the universe is 42. I turn 42 tomorrow and while I don't know the answer yet, I definitely feel more confident about what my life is about after spending more time here in this realm called Earth.

When I was 24, I decided to go to my first tattoo convention, Seattle Tattoo Expo in 2008. There I would meet someone that would change the course of my life for the following 6.5 years. And perhaps the things I learned would continue to change me. I can now look back in full remission, that my near death experience was to school me, to make lifelong healthy habits. And it was my innate character that would allow me to create a discipline in health during my health journey. It was about learning how to listen from within, to take care of myself, but first not before completely destroying myself, spiritually and physically.

The person I met was my future my ex-husband. A person so toxic to me that within my body, I contained so much stress, it manifested as Focal Segmental Glomerulosclerosis, FSGS in 2011. Western medicine really likes to diagnose diseases, and the scarring shown in my kidney biopsy identified markers for this kidney disease. Truth be told, I fought for my life, the nurses and doctors all assumed either I was pregnant and didn't know it, or that I had hepatitis C (both came out negative). In a 24 hr collection of urine, my kidneys spilled 41 grams of (albumin) protein. My albumin levels were dangerously low, zero point something; they wouldn't tell me exact numbers because I was on the brink of death and organs cannot function without albumin in the blood. I was going through (acute) kidney failure. I had heart monitors and albumin infusions every 30 minutes. They hit me with a round of 500ml IV Solumedrol, I've never felt so aggressively high in my life. My hospital room was a neutropenic room, I was a bubble girl, where my family/friends would have to gown up and wear masks and gloves. At one point, I remember making my way to the bathroom, looking in the mirror, and the reflection I saw looking back at me was a dying, decaying, slightly yellow and green (zombie). I couldn't recognize myself. That very night I wasn't sure if I was going to make it through alive, but somehow I did.

I was given a prognosis, I would eventually need dialysis, definitely within 5 years. My nephrologist wrote on the white board, "10" and she said "this is where your kidney function is at, it is advisable to start asking your sisters if they are a kidney match for you". I remember feeling like "this can't be happening", but I knew all I could actually do was focus on surviving the next day. I was wheeled out of the hospital, I don't remember the ride home, and the next moments would be a lot of deep sleep. I don't even know how long I slept for, maybe 2 weeks straight, not quite sure if I even ate any food, or how I went to the bathroom. I remember thinking my mom must be so scared. Once I looked in the mirror, I had so much loose stomach skin like I just lost a 45lb water baby (which I did). In the hospital I weighed in at 132 lbs, and after my hospital treatment of 80mg Lasix every few hours, I was weighing 88-90 lbs. I'd been a healthy 105lbs my whole life since high school.

There were a lot of baby steps needed to get better. I had to relearn how to walk, since my ankles and legs were so swollen with water before my hospital treatments, I had muscle atrophy from not walking for months. I learned that crawling was a good way to relearn how to walk, so I started there. I began to walk and raise my arms at the same time. I didn't have Juju with me for months because I couldn't keep up with her. I stayed with my mom in Sacramento while she went to work and took care of me. My (future ex) husband was in Portland slowly ruining our finances.

I had what I call a medically induced eating disorder, where I would count every mg of protein and salt intake. My internal body struggled with daily 80mg of prednisone, and 3000mg of cellcept, which nearly killed me. I lost a ton of hair, I wore hats for 1.5 years. I would tell people I looked like the crypt keeper from the twilight zone. I had to get a colonoscopy when I was 27 to figure out why my stool had blood in it, and it was due to meds tearing up my interstinal lining. I ended up on trial meds that I had to inject subcutaneously into myself, ACTHAR, $10,000 bottle injections every 3 days, luckily I didn't have to pay for thanks for Obamacare. It didn't work, and I was back on prednisone. My face puffed up and I could barely recognize myself. When I was hospitalized for the second time I was transferred to care with UCSF because the "community hospitals" in Sacramento exhausted all medical treatments offered. Note to self, always get serious care in a big city at a research hospital if you can. I was put on a cocktail of meds, tacrolimous, prednisone, and prograf. They were trying to taper me off prednisone since my body became steroid dependent, which means anytime they would try to taper me off, my numbers would jump and I would come out of partial remission.

I had the will to get better, but I didn't really get better until I initiated a divorce from my toxic husband. Once I got rid of the toxic energy that was created by spending my time with someone who I did not feel safe with and did not respect me, I was able to be free from the inflammation caused by not respecting my own will spirit, which in traditional Chinese medicine, is the kidney spirit. My body was trying to tell me to dump his ass and I did not listen for years. I thought about the shame of divorce and remained hopeful that things could get better. They only got worse. But thankfully, I eventually did listen.

The day before he moved out in September 2015, I rolled the coins of the I Ching. The I Ching, or the Book of Changes, is an ancient divination tool from China, and I rolled 6 consecutive times, three coins on head. I'd never rolled the I Ching before. My reading brought me to the first page of the I Ching. It is the most auspicious page in the book. I did not know it yet, but it turned out to be correct in every way, reflecting back in 2024. My creativity brought me unimaginable freedom. After our divorce, I regained my self confidence back immediately, but my progression (I like to call it alchemization) towards full remission would continue for years after the divorce. I got Rituximab monoclonal antibody infusions every 4 months for the first 3 infusions, and then every 6 months for the last 3. My renal function panel and urinalysis labs went from weekly, to monthly, to every three months, every 6 months, to now once a year. When doctors have asked me what I think helped the most in my complete recovery, I've stated "cardio, maybe matcha, but definitely my divorce".

I still have my native kidneys with GFR functioning above 90%. I can look back now and truly wonder if I am in the same body. Deep healing is a slow, alchemizing, intentional process that includes the art of letting go, and mindfulness. Everyday I was mindful of ridding the "disease" that was killing me slowly, the disease of not listening from within. I began to love myself, I created health rituals, I began to listen to the wisdom of my ancestors (which is available to us if we practice listening). Everyday I continue to choose my health. Health is number one.

The key take away: if you find yourself with a life threatening autoimmune disorder, when you once had robust health that manifested during a failing partnership, please just dump their ass. Listen from within (i.e. your heart, gut). One of my greatest accomplishments in life is my willful divorce, thank the heavens, it was the catalyst to be free and healthy.

Left BEFORE: Deep in Pharma treatments 2017, then 2022 in full remission.