My Journey Through The Health Wilderness (My Cytokine Storm)

Those with chronic health conditions are often shamed for seeking out numerous health practitioners and specialists. But as long as my disease remained misdiagnosed or under-diagnosed, misunderstood and not well controlled, I had no choice but to seek out healing specialists in the hope that one might finally be able to help me find my way back to immune balance and wholeness. Throughout the decade of my twenties I journeyed from our local health system in Beaumont, Texas, to Cleveland Clinic in Ohio, Baylor College of Medicine in Houston,  ear specialists in Fort Worth and New York, NIH in Baltimore MD, England’s NHS during grad school, Hospital for Special Surgery in NYC and NY Presbyterian, and many other specialists in between, all providing pieces of the puzzle to put back together my health, but none with a comprehensive view of the cause and cure for my chronic health suffering.

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My Cytokine Storm & Life Threatening Infections:

 

• Diagnosis of ANCA and PCR Positive Granulomatosis with Polyangiitis (GPA, ANCA Vasculitis)

• 50% hearing loss

• Loss of my speaking voice for 6 months (postponing my grad program in vocal performance)           

• I have yet to regain my full singing voice. Singing and performance were my dream since childhood.

• Systemic joint pain with RA factor

• Lesions on joints and in all mucosal areas

• Recurring broken glass inflammation and scarring in both lungs (resembling double pneumonia) that repeatedly landed me in the hospital

• Deep tissue scarring and necrosis in sinuses and ears

• Coughing up blood, bleeding from my ears

• Blood in urine, blood in stools

• Patulous eustachian tubes, eustachian tube dysfunction, that led to depression, depersonalization, and derealization

• Serious chronic ear and sinus infections, asthma, chronic post nasal drip

• Neuropathy that made me unable to feel my feet and ankles for almost a year

• A ruptured anterior tendon that gave me drop foot

• Life-threatening bone infection leading to a mastoidectomy(removal of my mastoid bone)

• Resorting to hearing aids because of mystery ear infections, chronic ear drainage, and worsening hearing

• 10 ear surgeries to scrape out scar tissue, clear infections, and attempt to improve hearing

• Multiple sinus surgeries

• Loss of smell for two years

• Years of routine lung CT scans as well as MRIs

• Mystery abdominal and pelvic “infection” that resulted in 5 weeks alone in the hospital in the middle of the worst Covid surge summer 2020)

• Paralytic Ileus (bowel obstruction due to loss of muscle control in intestines)

• 8 life-threatening hospitalizations in 10 years due to GPA relapses and secondary infections

• 10 years of maintenance chemotherapy

• Two years of Monthly IVIG

• Months of IV antibiotic therapy

• Chronic joint pain, sinusitis, fatigue, chronic conjunctivitis, mysterious allergic skin reactions, palmer hyper hydrosis, Raynaud’s (cold hands and feet).

• Chronic anxiety, health anxiety, excoriation disorder, depression, and Complex PTSD

 

And so much more. I struggle to remember much of my journey because dissociating from it is a survival mechanism. Each episode was more horrific, painful, and terrifying than I could ever fully or accurately describe. Each bullet point and list consisted of weeks, months, or years of prolonged physical and emotional pain, medical confusion, and constant trial and error. I often still struggle to find comfort and safety in my body and am have worked with a somatic therapist to widen my window of tolerance and increase my experience of safety. I also work closely with my rheumatologists in New York and Texas, with a Functional Medicine Practitioner, a Functional Medicine Health Coach, and my own community of fellow coaches who have supported me over the years.