My Illness Journey

Here, I will share a brief summary of my illness experience, in order to give context to future posts.

MALS & Endo

My first experience with severe illness and disability was from age 17 to 22. I often refer to this as "the first time I was sick".

I suffered from MALS- median arcuate ligament syndrome, in which a ligament was wrapped around my celiac artery like a noose, cutting off blood flow to organs, especially the stomach. It took two years to diagnose, because MALS didn’t even exist as a diagnosis yet. I would become the 17th person to ever have the MALS release surgery. Two angioplasties followed, as scar tissue/weakness kept causing issues with kinking/blockage.

During this time, I also had endometriosis- a disease in which endometrial tissue implants outside of the uterus, bleeding and causing pain and other symptoms. I had extensive issues with adhesions as well- one tugged at my bowels, another would later pull my uterus out of place.
I struggled with a lot of pelvic and abdominal pain during those years, was often confined to the couch and unable to work or attend school, and experienced what I now understand to be medical trauma.

In addition to the MALS surgeries, I had four surgeries for endometriosis- my appendix had to be removed due to endo at age 17, two surgeries to remove the endo throughout my pelvis and abdomen at 19 and 20, and another surgery to pick up my uterus and sew it to my abdominal wall at 21.

After my last surgery in 2011, I experienced a few years of relative wellness. I still suffered from fatigue, migraines, nausea, joint and muscle pain, but at the time they were manageable, and I thought I should just be grateful I was no longer bedridden, so I ignored my symptoms.

I began working 12+ hour days, I was going out with friends for the first time, I was volunteering at a museum, I was hiking and adventuring and celebrating how much my body could do. I felt like I was finally living my life!

After a few years, I was so confident in my health that I even applied for grad school to pursue a career in archaeology and museum studies. I was the happiest I had ever been. And then my worst nightmare happened.

Chronic Inflammatory Response Syndrome

It started with what felt like a virus in May 2015, then quickly progressed into my old MALS symptoms. An angiogram revealed normal blood flow, ruling out my celiac artery, so I once again found myself faced with a mystery illness.

By August, the symptoms progressed. I was unable to eat, or even drink water. I lost a lot of weight. My hair started falling out. The fatigue and weakness grew worse, as did the migraines. And the pain... my god, the pain. Muscle, joint, nerve, burning, shredding, tearing, every minute of every day.

I couldn't sleep. In the morning, my eyes were swollen shut due to a strange film coating them. Sinus pain so severe it felt like every bone in my face was broken. My lymph nodes were swollen all the time. My hands wouldn't work and I couldn't grip anything- at times becoming claw-like from tight tendons that wouldn't relax.

By October, I was getting confused and disoriented. I was having memory problems and speech problems. I couldn't focus. I was suddenly unable to read, or retain new information. I could no longer drive. One day my right leg stopped working, and I had to start using a cane.

In 6 months, I went from doing the most I had ever done and the happiest I had ever been, to my entire body and brain rapidly shutting down, which ultimately resulted in me dropping out of grad school as I searched for a diagnosis.

The gastroenterologist thought I had ALS, so he sent me to a neurologist, who chose not to run any tests and instead told me that I was “fit and healthy” and suggested his “headache clinic”. I saw a functional medicine doctor who ruled out autoimmune conditions, and was the first to suggest Lyme Disease. Eventually, I made my way to my current doctor, thanks to the recommendation of a former coworker who had been treated for Lyme.

After a two hour conversation, a complete medical history, 13 vials of blood, a nasal swab, and a neuroquant MRI, she put the puzzle pieces together and diagnosed me with Chronic Inflammatory Response Syndrome.

Genes load the gun, exposure pulls the trigger

It turns out I have what they call the “dreaded gene”- an HLA haplotype that makes me susceptible to *all* biotoxins. In a non-susceptible person’s body, when they are exposed to biotoxins (for example, mycotoxins from mold), their immune system is able to recognize the threat, bind to it, and remove it via the stool. Those with certain HLA genes, however, do not have this innate immune ability, so the biotoxins stay in the body indefinitely.

This means that every time I have been exposed to biotoxins—from the moldy basement in my childhood home to the job I had at age 23 cleaning old houses, my immune system was incapable of recognizing and removing biotoxins, so they remained in my body, circulating, causing cell damage, triggering a massive and chronic inflammatory response, immune system dysfunction, and hormone dysregulation. The virus I had been exposed to in May of 2015 pushed my body to its tipping point, resulting in the rapid deterioration of my health.

My neuroquant MRI revealed “off the charts” brain inflammation from mold, and my blood tests revealed the inflammatory response in the rest of my body, as well as the hormone dysfunction—some numbers sky high, others so low they were “basically a zero”. We discovered I had also been exposed to Lyme disease, and Epstein Barr.

Treatment begins by making sure you are no longer actively being exposed to biotoxins. For me, this meant ‘surface cleaning’ our home (which took about 6 weeks), and 4 weeks of antibiotics for Lyme. The next step in treatment is removing the biotoxins from the body, with a medication that binds to the biotoxins in the GI tract and removes them via stool-- something my body cannot do on its own.

As biotoxins in the body begin to mobilize, however, symptoms grow worse, spilling over like an already full bucket under a running faucet. With the complexity of my case, my symptoms were particularly volatile and I had to go through treatment very slowly. Whereas some only require a few months, I would require years.

It gets worse before it gets better, and the pain became unbearable. Treatment was excruciating for me, and what little function I had left was gone.

Isolation & Trauma

To make matters worse, our susceptible bodies can become hypersensitive during this stage of treatment, and exposure to additional biotoxins is like pouring gasoline on an already raging fire, so I had to practice what they call “extreme mold avoidance” or as I call it, isolation. I could not enter “unknown” buildings (buildings that I had not tested for mold), which realistically meant I could only go two places: my home, and outside. It was only supposed to last a few months.

Unfortunately, my body began to have big reactions to even small exposures and the fallout would last weeks or even months. I reacted to being in a car, I reacted to paper—I could even tell if somebody lived in a moldy home, just by giving them a hug: if there was mold on their clothing, it was like getting whacked in the face by a 2x4.

There were so many times when I would begin making progress with treatment, only for some small accidental exposure to set me back by months. I was forced to make my world smaller and smaller in order to give my body a chance to heal. I did what I had to do to survive. And eventually, it worked.

The shift came in January 2019. Symptoms began to disappear. The pain began to ease. By then, I was on the last stage of the Shoemaker Protocol, which is a nasal spray called VIP that helps to normalize hormone function and repair the destruction left behind by the biotoxins.

As my body began to get better, however, my mind grew worse. This shift came too late for my mental health; the damage had already been done. I had been too sick for too long, in unbearable pain for too long, in isolation for too long. And for too long, I felt as though I had been screaming for help from others, only for those cries to go unheard, causing me to retreat into the safety of being silent and alone.

I had been stuck inside of a body that was torturing me; suffering through every minute of every day; stuck on a couch, in my house, completely alone, for years.

Though I was finally recovering from CIRS, trauma already had its claws in me. I started suffering from flashbacks, nightmares, hypervigilance, body armoring, and dissociation.

Hope, Triggers, & Healing

My first time in a building after being released from isolation

I was released from isolation in May 2019, and slowly began to venture into the world, starting with a few minutes in a gas station or rest area with a Vogmask on, until I worked my way up to going to a concert. I was finally beginning to rejoin the world! I started to believe that I was actually getting better, and that maybe it was possible for me to have a real life again.

Then COVID came.

I was forced back into isolation. I couldn’t afford to be exposed. I didn’t spend 4 years in treatment to just get COVID and die, or end up with permanent lung/heart damage. I remember joking with my doctor that my body would probably do something weird if I got COVID, and I’d end up with chronic COVID… shortly after, news sites began reporting on cases of ‘long haul’ COVID. I couldn’t risk it. I had already been in isolation for 3.5 years, what was another few months?

Within 3 days of lockdown in March 2020, people complained about how unfair it was, how bored they were, how terrible it was to be stuck at home. I was angry: why didn’t they care when it happened to me? People began posting reminders about checking in on those who were alone. I was hurt: I had been alone for years, why didn’t they check in on me? “Don’t worry, it’s only the sick and elderly who die,” everyone said. I was devastated: was my life really so worthless to them?

Masks, quarantine, cross-contamination: I found myself on the outside looking in as people got a tiny glimpse into what my life was like. In a time when everyone was bonding over their collective trauma, I had never felt more alone. Each day was a soul crushing reminder of how separate I was from the rest of the world. The pandemic- or rather, other people’s reactions to the pandemic- amplified my feelings of abandonment, and highlighted every hurt and all of my anger. My mental health reached a breaking point.

It was time to turn inward, to heal 14 years of medical and interpersonal trauma.

A year and half of somatic therapy, talk therapy, griefwork, and a vagus nerve program later, I am now coming out the other side of that healing.

A Rough Initiation

Right now, I am 80% recovered from CIRS. Most symptoms have resolved, VIP has repaired much of the damage, my doctor is "happy with my T-cells". I still struggle with severe pain, mobility issues, and brain fog, and we are currently addressing hypometabolism caused by actinomycetes. I hope to begin physical therapy soon. I’m continuing the work on my nervous system and unconscious physiological trauma responses, and healing my relationship to my body and to the world.

It has been, as Francis Weller calls it, a rough initiation:

“Illness asks much of us…. Listen!

[It is] a rough initiation. All initiatory events take one into an unknown and unshaped world. Here, nothing is as it was; nor is it intended to be. It is a time of shedding and endings. The familiar world is left behind, and we exist at the edge of something without shape. It is a place of radical change… the identity we had known for our entire life has just been dissolved.

Illness carries us into places of great uncertainty. Will we ever get better? We can no longer lean on what we know for a feeling of stability… we feel adrift on unfamiliar seas, and as in all true initiations, we fear that we will sink into the waters of death.

When we are in the grips of illness, a major focus in our mind is the hope of getting back to where we were before this sickness began. But we are not meant to go back… we must recognize that we have been uprooted…. and set down on some new shore. We are meant to come out of the experience deeply changed.

Illness strips away all excess, winnowing us down to the bare essentials. When the choice of denial has been stripped away, as it is in illness, we are brought face to face with our own mortal lives, our tender vulnerabilities… old wounds… fragility of flesh, and the immensity of the soul. We are ushered into a darker night that sheds an astonishing light on our deeper and more genuine shape….

Here, in this more ripened place, we can see how much more we can hold, tasting both the sweet and the bitter, the beautiful and the painful, all in the same moment… We gradually become able to embrace the full terrain of living.” -The Wild Edge of Sorrow

If you’d like to read about my disability journey, check out How I’m Coming to Terms With Being Disabled