06/10/2024
The Unraveling of My Life
Seven years ago, my life took a terrifying detour, a descent into a medical labyrinth from which I've yet to emerge. It began with a racing heart, pounding up to 180 beats per minute, a terrifying symphony of panic and fear. Doctors shrugged, calling it POTS despite normal test results. Then, the gut-wrenching pain hit – a relentless assault of nausea, vomiting, and diarrhea, that ended with a diagnosis: severe pancolitis, my colon devouring itself from the inside out.
High-dose steroids offered a reprieve but plunged me into a living nightmare. Psychosis shattered my reality, leading to hospitalization and terrifying psychogenic seizures. The psychiatric care I received offered no relief, just another prescription and a dismissive "good luck," leaving me feeling abandoned and alone.
But my body remained a war zone. Pneumonia struck four times, C. Diff five. A blood clot formed in my arm, a harbinger of the multiple clots that would later invade both lungs. Asthma, a new and unwelcome companion, made breathing a struggle. My gallbladder, deemed a troublemaker, was surgically removed. My colon, scarred and battered, has been probed and examined countless times through eight colonoscopies and four upper endoscopies.
Each day is an agonizing battle, a relentless assault on my senses and my sanity. My fatigue is a crushing weight, a leaden cloak that renders even the simplest tasks impossible. My joints scream in agony, my hips and lower back burning with pain so intense that walking becomes an insurmountable challenge. Even gentle touch sends shockwaves of pain through my body, thanks to neuropathy and Raynaud's syndrome.
My brain, once sharp and vibrant, is now a hazy, unreliable companion. Names, dates, simple words – they all vanish into the fog. I forget appointments, deadlines, even the faces of loved ones. My insomnia stretches into days, leaving me staring at the ceiling, or I succumb to a 22-hour slumber, only to wake feeling just as exhausted.
My body is a stranger, a source of constant betrayal and torment. My legs and ankles swell relentlessly, the fluid migrating to my hands and face. My skin erupts in maddening itches, especially after a shower, tempting me to tear it apart. Mouth sores make eating a torture, and I dread the mirror, dreading the stranger staring back at me, eyes burning and watery, sometimes seeing double, with flickering lights dancing at the edges of my vision.
My blood tests reveal iron and B12 deficiencies, requiring regular infusions, and MRI scans have shown lesions on my brain. I have tested positive for both ANA and Hepatitis C antibodies, despite never using drugs or having a blood transfusion, leaving doctors puzzled.
I have been labeled with diagnoses – bipolar, ADHD – but they don't explain the totality of my suffering. I don't deny the toll this journey has taken on my mental health, but I believe the medical system's neglect and mistreatment have exacerbated my struggles. One ER doctor even mockingly called me his "number one frequent flyer."
My records are a tome of abnormal test results, dismissed concerns, and unanswered questions. I am not just a collection of symptoms, I am a person whose life has been shattered. I am tired of the tears I cry every single day, the terror of not knowing what's happening to my body, the feeling of being trapped in a nightmare with no end in sight. I am reaching out, desperate for someone to truly see me, to hear my story, and to offer the expertise and compassion needed to reclaim my life from this relentless darkness. I refuse to be just another statistic, another medical mystery. I deserve answers. I deserve relief. I deserve my life back.
