Invisible Illness

“My illness started the day I was born with extreme acid reflux that burnt through my skin and scarred my digestive system. I was sick as a child, staying home from school, and missing out on “normal” activities. I couldn’t leave my house without emergency medications to help with my constant stomach pains and nausea. At 12, I was diagnosed with Interstitial Cystitis after yrs of false diagnoses and wrong treatments that ended up making things worse. Drs said the disease was too rare for a 12 y/o to have. Rare is not synonymous with impossible. In 9th grade things took a turn I suffered from chronic fatigue, weakness, nausea, dizziness, rashes, abdominal pain, seizures, uncontrollable breathing, and an infinite list of other symptoms. Constantly going to ERs and Drs after fainting spells, the only answer being anxiety and “in my head.” After endless futile, heartbreaking, and invasive tests, I gave up on a diagnosis and survived with constant pain thinking it was normal. 5 years later I stumbled upon my miracle doctor who diagnosed me with Postural orthostatic tachycardia in 20 min. I cried for longer than it took him to diagnose me. Everything I convinced myself wasn't real for 5 years, was real and shocking. After 10 more months and 72 hours worth of MRIS, CT scans, and ultrasounds, I had validation of my pain. Nutcrackers, MCAS, SMAS, MALS, MTS, POTS, EDS, and IC had been derailing my life since day one. Each is in itself a life-threatening, anatomical, vascular-circulatory abnormality. My blood stops and flows backwards my body in 24/7 fight or flight mode. Combined, they make me one in a billion. There are 2 doctors in Utah that treat these: no cures, only preventative measures and symptom mgmt. I'm waiting for a kidney auto-transplant which will reverse some damage. My pain is a blessing in disguise. All things are much more beautiful when you understand you may never see them again.” @shae.kiara

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