Why Another Emergency Room Visit Will Not Cure EDS Comorbidities

I shared this video on my social media this week and the response was overwhelming. The calls, the messages, the people saying they finally felt seen. I have been crying behind this camera during flares for years. I am putting a face to the pain people with EDS live in every single day, and I am telling my story so others feel less alone in theirs.

This week I found myself back in the emergency room. I was not there looking for pain meds or a quick prescription, but because after everything my body has been through this year, I woke up in a crisis and needed to know I was actually safe. When I opened my eyes I could not even walk. My feet were completely tingling, and it was not just localized pain in my pelvis anymore. There was a very large visible knot protruding on the left side of my abdomen. The pain was so intense that my baseline gave out and my whole body was physically shaking and convulsing just from the sheer agony of it. I knew something was deeply wrong, and I suspected that whatever was swelling inside was sitting directly on a nerve. Turns out, I was completely right. The scans ultimately ruled out an immediate surgical disaster like a total rupture or a new massive hematoma, but they showed severe inflammation in my small intestine. That localized swelling was physically pressing against the nerve matrix, sending the tingling down my legs and triggering the convulsions. The ER did what they are built to do: they gave me Dilaudid for the pain, Zofran for the nausea, told me it was a viral thing, and sent me home. The ER response was not an answer. While it was a relief not to face another emergency surgery 16 weeks after my vaginal cuff tore open, I left with the exact same question I have been asking my whole life: why does my body continually default to being this structurally vulnerable? The answer is not in a standard blood test. It is about the physical architecture of my body. For me, the ultimate missing piece was Ehlers-Danlos Syndrome. When most people hear about EDS, they think of flexible joints or a neat party trick, but it is actually a systemic issue with how your body’s primary building block is constructed. Collagen is the literal glue of the human framework, holding up your organs, fascia, ligaments, pelvic floor, and digestive tract. In an EDS body, this collagen is overly stretchy. When your intestinal walls and the delicate lining lack baseline rigidity, the simple mechanical stress of processing food can cause microscopic tears and gaps in the barrier. This makes it incredibly easy for opportunistic bugs or the common bacteria behind food poisoning to breach the wall and colonize, leading to chronic low-grade colitis and the sudden intense swelling that landed me in the hospital. The stretchy ligaments meant to hold organs securely can also allow the stomach and intestines to physically sag and crowd one another, causing mechanical bottlenecks that drive GERD and the erratic painful spasms labeled as IBS.

The Domino Effect: Autoimmunity, Tick Fever, and Hidden Organisms

This baseline tissue fragility makes the body hyper-sensitive to external disruptions, setting off a domino effect of autoimmunity and inflammation. In 2010, following the profound systemic stress of breast implant illness, my immune system shifted into a permanent state of high alert and I developed Hashimoto’s thyroiditis. When a foreign object is introduced into a system already dealing with a leaky structural barrier, your frontline immune cells sound a permanent alarm and begin attacking their own tissue. Then in 2017, my system was hit with another massive bomb when I contracted Rocky Mountain Spotted Fever. While conventional medicine handed me heavy rounds of doxycycline and considered the acute infection resolved, my body was permanently changed. This vector specifically attacks and damages the cells lining the blood vessels. Wreaking vascular havoc on top of an already weak EDS gut permanently alters tissue resilience, creating an ideal environment for hidden microbial imbalances and opportunistic organisms to thrive. I want to be honest about where I stood before that experience changed me. I had spent years skeptical of the parasite cleanse conversation. I had been around enough wellness culture to recognize a pattern where someone tells you this protocol is going to change everything, you try it, and nothing is the cure. I approached all of it with serious skepticism and I was right to be skeptical because none of it was the cure. Then I watched worms come out of my body during active treatment protocols. I have photographs. I documented parasites during deep cleanses. I know how that sounds. I also know what I saw, and I know that my skepticism before that moment was based entirely on not having experienced it personally. Our standard healthcare system treats the gut as a sterile environment and tests for parasites only in cases of acute textbook infection. For patients with hyperpermeable gut barriers the threshold for parasitic colonization is significantly lower than in a typical body. When you add compromised vascular walls from tick-borne illness on top of structurally deficient collagen you create a hospitable internal environment for organisms a structurally intact body would clear naturally. The alpha-gal conversation is finally reaching mainstream awareness. The conversation about broader tick-borne microbiological damage needs to follow it.

The Vascular Paradox: POTS, Pooling, and Surgery Risk

This vascular elasticity also dictates the fluid mechanics of my entire cardiovascular system, explaining the lifelong low blood pressure and circulation problems that conventional doctors never connect to digestion. Because my blood vessels lack the tone to constrict and push blood efficiently back up to the heart, fluid pools heavily in my lower legs, ankles, and abdominal beds, which is a core mechanical driver of Postural Orthostatic Tachycardia Syndrome (POTS). This constant pooling starves my upper body of optimal circulation, leaving me perpetually freezing and requiring my home to stay at 78 degrees just to feel normal. During surgery, this tissue-paper vascular matrix creates a dangerous paradox. Delicate vessel walls easily tear around sutures, causing blood to escape into tissue and form massive hematomas. Simultaneously, the sluggish flow of blood through stretched veins during post-op immobilization signals the body to aggressively deploy platelets, forming localized blood clots as a structural defense mechanism.

Costa Rica, the Jungle, and Coming Home

Part of understanding my environmental load came from living completely outside of it. I spent months at an eco village in Costa Rica with Viktoras Kulvinskas, who was considered the godfather of raw food. The village was low-EMF, open air, surrounded by jungle. Natural light, animal sounds, birds, the noise of living things. No refrigerators humming, no HVAC cycling, no fluorescent lighting, no wireless saturation. My body felt different there in a way I had no framework for at the time. When I came back to the United States I could hear everything. I could hear the refrigerator. I could hear the air conditioner. I could hear the dishwasher, the fan, the lights buzzing. When you have been living under natural lighting for months and then walk into a Walmart or a shopping mall the difference is not subtle. It is overwhelming. The fragrances, the noise, the artificial light frequencies. My kids get frustrated that I cannot do those environments. From the outside it looks like a preference or an overreaction. From the inside it is my nervous system doing exactly what it is built to do, registering every signal in the environment, because an EDS nervous system lacks the structural dampening that a typical body provides automatically. But here is what I also have to be honest about: I did not leave that eco village on my own terms. I left because I got E. coli. Unsanitary conditions at the facility, combined with the absence of cooked food, overloaded my system even in the lowest-EMF most natural environment I had ever lived in. No wireless saturation, pure jungle air, clean living, and my compromised gut barrier still failed. That is the point the whole piece is trying to make. The environment was not the variable. The architecture was. We do not live in a vacuum. Every day our bodies absorb an unseen load of environmental stressors that directly impact mood, energy, and physiological stability. In a typical body with tight resilient cellular boundaries these are background inputs. In an EDS body where the nervous system is already raw and the structural barriers are permeable, that environmental load keeps the body in a state of perpetual neurological defense.

The Diagnostic Blindspot: What Standard Labs Cannot See

The lingering effects of this vascular and structural trauma became painfully clear last week when I had to take a 12-hour drive. It was my first long trip since my vaginal cuff tore, and the prolonged vibration and sitting sent my unrecovered tissues into a violent 7-day systemic flare. When I told my OB/GYN that I still have not recovered from a surgery that took place 4 months ago, he simply stated he did not know why, because on paper I am doing everything right. Conventional textbooks do not account for the structural timeline of an EDS body, nor do standard diagnostic tools test for the right things. When a doctor tests your micronutrients, they run a standard serum blood test that only measures what is floating around in the liquid outside the cells. Because of poor circulation and sluggish fluid mechanics, those nutrients often stall in the highway of the bloodstream. Your labs look perfectly normal, while inside the cell wall, your mitochondria, the cellular engines responsible for creating energy and rebuilding tissue, are running on absolute empty. To see the truth, you have to run intracellular nutrient testing, an adjacent diagnostic tool that insurance companies routinely reject as non-essential. I was not formally diagnosed with EDS until 2 years ago. At that same time I was diagnosed with SIBO, Small Intestinal Bacterial Overgrowth, and I was strictly vegan. I had been doing everything the clean eating world told me to do and I still had bacterial overgrowth colonizing my small intestine. Now I am back on carnivore and I am still dealing with bacterial overgrowth issues. Vegan did not fix it. Carnivore does not fix it. Raw food in a Costa Rican jungle did not fix it. Cooked food in the United States does not fix it. Every dietary protocol I have ever followed has run into the exact same wall: a gut barrier that is structurally incapable of defending itself the way a typical body does. The collagen is the variable that never changes. There is no magic nutritional answer to a mechanical architectural defect.

The Perimenopause Cliff

This hidden struggle often hits a catastrophic tipping point during perimenopause, the ultimate catalyst for an EDS crisis. Estrogen and progesterone are critical regulators of collagen synthesis and mast cell stability. When estrogen levels begin to fluctuate wildly and drop, the structural scaffolding of the body loses its hormonal backup. Joints that used to occasionally click suddenly begin to fully sublux, veins become even stretchier, and the drop in hormonal stability causes mast cells to completely destabilize. This turns baseline sensitivities into full-blown histamine intolerance and severe intestinal inflammation. For many women, perimenopause is the exact moment their invisible manageable baseline transforms into a disabling systemic crisis. Millions of women navigate their lives with mild hypermobility and sensitive stomachs, holding their systems together through sheer willpower, only to fall off a cliff when their hormones shift. EDS is not a rare disease. It is a rarely diagnosed one.

What Movement Actually Looks Like in an EDS Body

Navigating this reality requires an entirely different definition of health and movement. For me, a holistic lifestyle is not about rejecting pharmaceuticals in a crisis. This week’s ER visit reminded me exactly why conventional medicine matters to survive the fire. True wellness means utilizing those acute tools to stabilize and then looking at the whole picture to understand the pattern. Movement cannot be about vanity or aesthetic performance. Conventional fitness will tear an EDS body apart. That is why I had to use my own pattern recognition to develop a ground-based therapeutic movement system. By utilizing a vertical pole, I found a way to decompress the spine and stabilize a sacral area that has felt structurally loose my entire life, causing a protruding belly since childhood due to organ sagging rather than a lack of fitness. In this practice, going slow and performing precise controlled movements up and down on the tippy-toes acts as a vital mechanical pump, flexing the feet and calves to force pooled blood out of the limbs and abdomen and pushing it back up to the heart. This therapeutic architecture is the only reason I can still go hiking, get to the beach, and find deep healing through a pure clean carnivore diet. Yet choosing an alternative path for survival invites immense social judgment. When I vulnerably share my exhaustion or tears online, people comment that if my practice or diet truly worked, I would not be sick. They do not understand that there is no cure. We are managing a genetic blueprint. My practice and my nutrition are the reason I can function at all.

We Cannot Wait for a Broken System

Conventional healthcare is completely fractured, tossing complex patients around like popcorn from one specialist to another without any centralized communication. Finding an expert is nearly impossible. There is zero EDS support for OB/GYNs in my state, and when the lone neurosurgeon specializing in EDS in Arkansas suffered a medical crisis himself the exact month I was referred to him, the system offered no backup, leaving patients stranded or forced to endure grueling travel our bodies cannot handle. We cannot wait for a broken system to save us. We have to become our own ultimate patient advocates, weaving our own records together and tracking our own metrics to turn our bodies into empowered research labs. That is exactly why I built the tracking and assessment systems directly into the POLISTIC+ platform, to give people the framework to understand what is actually happening inside their own bodies. 2 miles from where I am writing this, the Alice L. Walton School of Medicine just opened its doors in Bentonville, founded on the premise that whole-person integrative medicine is the future. A 100-acre healthcare campus is already in design. The conversation about what medicine should look like is happening right here, right now, in the same region where this methodology was built and where the population that needs this work is growing every year. We are living in an extraordinary historical window where genetic editing tools like CRISPR-Cas9 raise the theoretical possibility of rewriting the collagen defect entirely. If I could edit this gene out of my body, I am honestly not sure I would. This fragile tissue is the exact mechanism that gave me my superpower. My hyper-permeable structure is the source of my intense intuition, my deep pattern recognition, and the heightened sensory awareness that allows me to see connections others miss. This body has become my own private research laboratory, and perhaps some architectural variances are carried into this earth on a soul level, woven into us from the womb to teach us how to decode reality differently. This is Amor Fati, the love of one’s fate. I accept this physical vessel completely. She is fragile, she is sensitive, and she forces me to pay a heavy price for every adventure. But she is also brilliant, highly attuned, and the source of every bit of wisdom I have to offer the world. We are not broken. We are simply built differently, and it is time we build a healthcare paradigm that honors that architecture.

Namaste at the Pole, Jenesis