They Thought She Was Just Trying To Fit In
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“When I was in about the third grade, I was adamant that I needed glasses. It was hard to see but when I went to the doctor, they assumed I wanted glasses because all the smart girls in school had them (partially true, but I could seriously not see).
Fast forward a few years and I was 15 trying to get my learner’s permit for driver’s ed. They told me I couldn’t start driving until I saw a doctor about my eyes. I scheduled an appointment and they told me I had a fairly severe case of refractive amblyopia. That means that I’m blind in my left eye to all but colors and very vague shapes. The eye doctor told me if I had caught it before I was ten, I could have participated in therapy to reverse the damage to my eyes and the optic nerves.
But since I hadn’t, it’s irreversible. No surgery, no corrective lenses, that’s just my lot in life. I didn’t have any trouble in school like kids with undiagnosed vision problems do. My eyes track correctly and there’s no physical indicator I cannot see, so no one ever thought anything of my complaints, so eventually I just stopped complaining. I now have zero depth perception and it can’t be fixed.”
He Felt Like He Was Being Burned From The Inside Out
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“When I was a kid, I noticed that every time I ran, it felt like I had a swarm of bees in my chest. I just dismissed it as me being a weak kid since I was so skinny and lanky with little muscle mass. At age 20, I started to randomly lose consciousness and my heart would beat really fast. I was diagnosed with POTS at 21 then Ehlers-Danlos syndrome at 25 but the episodes of fainting and tachycardia kept on getting worse. I went from cardiologist to cardiologist insisting that they were missing something and that something was up with my heart.
At first, they kept on blaming it on the POTS, but I was receiving treatment for it and the episodes of sudden tachycardia wouldn’t stop. I was calling the ambulance constantly and when they would do the EKG, it always came out normal. They started to tell me I was having severe panic attacks. The thing is that I would get them in bed when I was asleep and they would awaken me out of a deep sleep. It felt like a swarm of bees moving faster and faster in my chest. My lips would turn blue, I’d lose all the color in my face, and I would just be drenched in sweat. The heat in my chest felt like I was being burned from the inside out.
So this went on for seven years and I just gave up on living. I didn’t even bother going to the doctor anymore because it was ‘just panic attacks.’ Then I went back to the doctor who diagnosed me with Ehlers-Danlos and told him I hadn’t had a decent nights sleep in years because the ‘nocturnal panic attacks’ kept on waking me up and making me look like the walking dead. My family members endearingly started calling me ‘ghost baby’ because of my pale appearance.
He eventually sent me to another cardiologist and I wasn’t even that hopeful until my sister started going through my old medical records and found a Holter monitor test result from 2010 that showed I had something called ‘paroxysmal tachycardia.’ I didn’t think anything of it because I have POTS, so yeah I have tachycardia as expected, right? I was told this test was normal and I didn’t include it in the records I brought to all my future cardiologists.
So we give him the new cardiologist the results from seven years ago and he asked me if I was getting awakened by my tachycardia and I say yes. He immediately ordered another tilt-table test which I failed in six minutes. Then he did something that no previous cardiologist did in the past and ordered an electrophysiology study. I was like, ‘Yeah, whatever, get it over with so you can tell me the test is normal and that it’s just panic attacks.’
They prepped me for the catheterization lab and then the reality of what was about to happen set in and I freaked out, so they had to hold me down while sedating me. I forgot to mention that the test was being done on Friday the 13th and I’m superstitious as heck. They knocked me out and I was expecting to just waltz out of there in a couple of hours and go on with my day moping about how I had another normal test.
Oh, boy was I wrong. I woke up three hours later being rolled out of the lab with my throat hurting super bad from being intubated and a bunch of people looking over me, smiling, and saying, ‘We found the problem!’ Apparently, my heart was all kinds of messed up and I actually had AV Nodal Reentrant Tachycardia which was making my head beat to 240 bpm. I was born with it. The ‘swarm of bees’ in my chest was my heart beating so fast it didn’t have time to fill, which is why my lips kept turning blue and my face was pale. It also was causing me to completely lose consciousness. I received a radiofrequency heart ablation and then proceeded to develop four blood clots in the spots where they put the catheters in and was kept in the hospital for six days, four of which were the ICU. It was both the luckiest and unluckiest day of my life. I’m never letting a doctor tell me it’s ‘just a panic attack’ ever again. I will lose my mind.”
The Cause Of His “Leg Cramps” Was Truly Disturbing
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“I had an accident when I was around 12. Long story short, I fell from a fair height into water onto my back and got trapped. After that, I started to get strange horrendous leg pain. It would creep through my legs, burning and tingling like pins and needles but way more intense. It would last for hours or sometimes even a whole day, then just slowly disappear.
My mom took me to the hospital once because it happened while I was at school and they freaked out about how much pain I was in. The ER doctors told me to leave because it was leg cramps and my mom told me it was because I crossed my legs too much.
Seven years later, I met someone and they pushed me to go see a doctor.