Our constant theme here at OurMonsters is that we don’t want anyone to feel alone. We want people to reach out and find support from people who understand their monsters and are willing to provide a listening ear, validation, courage, comfort, or whatever aid we may need at the time.
Today’s story comes from a young lady who has traveled a scarily similar road to Becca’s. You’ll notice a lot of commonalities in what they have been through, what they felt, and of course the end diagnoses. This is an intro to Kiara’s story, then next week we’ll cover her road to surgery, time at the hospital, and first little while of recovery — which have all been very different than Becca, and highlight very different pain points and stresses. We are so happy to have met Kiara and hope her story helps someone else in the same position!
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 years of false diagnoses and wrong treatments that ended up making things worse. Doctors said the disease was too rare for a 12 year old 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. I was constantly going to ERs and doctors after fainting spells, the only answer being anxiety and that it’s “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.
Five years later, I stumbled upon my miracle doctor who diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS) 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.
Nutcracker, 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 lives 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 preventive measures and symptom management.
I do believe, however, that my pain is a blessing in disguise. All things are much more beautiful when you understand you may never see them again.