Silent Illness
Two years ago I made the decision to give my resignation.
I did not know what my future would hold. If I would ever be able to return to physical therapy, cycling or enjoying the mountains at elevation.
It’s an internal struggle to know that I was poisoned against my will. Next month will be 3 years since the tests began rolling in confirming environmental toxins caused my mast cells to destabilize. It explains why I was having odd health issues every 6-8 months (full body looking bug bites that were painful and looked like allergic reactions, pneumonia, vulvar abscesses, vocal cord dysfunction, odd vertigo at work). I could go on.
Then I ended up having to call 911, brought to the emergency room and began coding.
I was misdiagnosed in the ER. Lab work & echocardiogram confirmed it was not pericarditis. My oxygen saturation would randomly drop to mid 70%. I began slowly healing without any treatment. Eventually, I could return to work. Once I got back to work, my asthma and allergic reactions progressed. I had ice prick pain on my tongue and scalp. The sores on my taste buds were popping. I was loosing: my hair, my memory and my dominant arm strength. I eventually had sores on my scalp that were the most painful thing you can think of. I experienced thoughts of suicide as a way to end the silent suffering.
The test results came rolling in as I told my doctor I could no longer work. It was my second FMLA from work. My hair loss lessened quickly after leaving work. The ice prick pain subsided after a week. My memory took just a bit longer to heal. Removal from exposure and Body Bio PC was a game changer to heal parts of my brain. I would suddenly loose strength in my dominant hand and break dishes. The autonomic neurologist diagnosed the toxic neuropathy and suggested a treatment that would allow it to heal in 6 weeks and it did. The neurologist had a daughter who had raced cycling criteriums locally and she moved forward professionally through Europe so this doctor knew the level I had achieved previously.
The problem is water damage buildings are far more common than you realize. The stay at home order was the best I had felt in years. I was home, unable to go into work. Hindsight is 20/20. When I was sick, we were in the middle of a pandemic and the only places I went were work and home. I began healing, without treatment, twice away from the environment that made me sick.
I feel fortunate today to see the bandwidth of healing my body has been able to accomplish. I acknowledge that so many people do not go in remission from mast cell activation syndrome (MCAS). I acknowledge that so many people with rare breast biopsies end up with more invasive cutting. A lot of people with neuropathy settle with the diagnosis and do not find complete remission. I find myself in a place where I am insanely grateful. I am moving past the fear it could all come roaring back. I am finding peace.
This summer is the first time in 3 years that I have not needed the motor assist of my e-bike (motor assist bicycle), Sparky. Yes, I named my e-bike. I feel confident I will not need a motor assist again so long as I do not have a prolonged exposure, but e-bikes sure do make you feel like a kid again. Sparky brought me back to life both physically and emotionally. Sparky allowed me to slowly add in exercise when my body was intolerant and build back up my stamina. It’s one reason why I am back to my weekly rides enjoying the push and camaraderie.
I have lived the struggle of “looking normal” and feeling like death.
I acknowledge where I have been. It makes the present more clear.
When I clearly met the limits of what local practitioners could offer, I looked for alternative solutions.
It is important to have these conversations because more people are affected by silent illnesses than you realize. In root cause medicine, they talk about all illness being rooted in toxins, infection, virus or trauma. It tends to affect the body slowly. You have to understand the body does not attack itself for no reason. A lot of medicine focuses on covering up symptoms with bandaids instead of investigating the symptom. We are taught the bandaid model in school. We were taught to use modalities like hot/ ice packs, electrical stimulation, iontophresis, ultrasound, etc… to put a temporary band aid on the situation rather than fix what is causing the joint/ tissues to degrade or herniate; then correct the mechanical relationships. NSAIDs can just make the injury worse not better. The body leaves clues. You have to interpret those clues.
If you would have asked me 3+ years ago, if I would be running my own business, back on the bike, summiting mountain passes and feeling more like my old self from 2018, I would have thought you lost your mind.
But here we are. A path I might have never experienced if I had not gone through my journey.
And here we are finding true root causes to chronic pain and illness. Changing the quality of life and performance.
Every time a patient or athlete tells me this is the best they have felt in years, it fills my cup. It bings me joy because I have lived it.
They say to recover loudly so others do not suffer silently. I hope sharing my story may help someone else avoid the suffering.
This is not medical advice. You should always consult your healthcare practitioner(s) for medical advise and what is best for your care. The purpose of this blog is to centralize and share information while connecting with others.