18.
Finally, “I was 15 and a cheerleader, and I woke up feeling kind of ‘off’ one day, but nothing terrible. I got through the day with mild random symptoms like feeling slightly woozy and with a distinct ‘definitely don’t want to eat’ feeling, which was unusual but welcome because I was ALWAYS hungry. I didn’t think much of it. Even when my muscles, especially my legs, started feeling stiff. I thought that was all the more reason to work out, right?”
“By the time after-school practice rolled around, I was having a little trouble breathing, but it was hot and it’s Florida, so whatever. I’m a flanker (front forward guard), so it was nothing too strenuous, and I pressed on. Then, during a kick drill, I got a headache. Again, I dismissed it. Then a fountain of blood started spewing from my nose. It was not a simple bleed, but what felt like a firehose of blood spraying out everywhere, and it would not stop. The blood also looked a little weird/bright. After 15 minutes of ice packs and pressure with no end in sight, coach called an ambulance.
At the hospital, they cauterized a blood vessel in my nose (which smelled LOVELY) and did some tests. Turns out, I had simultaneously the lowest iron and the highest copper numbers they’d ever seen, and they were BAFFLED. My mother arrived and got accosted by questions around potential chemical exposure and environmental hazards. They admitted me and started chelation therapy. They threw around a diagnosis of Wilson’s Disease, but it didn’t quite fit. Several doctors argued about this.
They gave me iron pills the size of Twinkies and put me on some IV vitamins. My poop was a very weird color. This concerned them. They kept me for weeks. My copper numbers dipped post-chelation and then started climbing again. No one knew what to do. Some idiot recommended actual blood letting (or just taking blood and hoping my system makes better blood to replace it, I guess?) They tried this. I felt like a science experiment. It didn’t help.
Eventually, they released me from the hospital. My bright blue eyes had a copper halo around everything. I had to take so many iron pills, and visit frequently to monitor my blood, with random chelation therapy and other treatments thrown in along the way. This continued for YEARS, and I just kind of learned to live with it. I was on a special diet to limit copper intake, had to take a bunch of supplements, and if I forgot to take my iron pills, my symptoms got bad FAST. My case was written up in a few medical journals.
Fast forward to just before I turned 28. I started getting headaches and weird coughs. It was misdiagnosed as a sinus infection, migraines, and eye strain. I was put on antibiotics. Nasal spray. I was given glasses I didn’t really need but wore anyway. Then a doctor found a weird lump in my neck. It was a thumb-sized tumor pressing on my carotid. I was fast-tracked to surgery because of the location. It was cancer! They removed my thyroid and, underneath it, found an extremely weird-looking parathyroid. It was HUGE and kind of green colored. They removed that, too, just to be safe.
Because of my weird conditions, they keep me a few extra days to monitor me and consult with my primary/send results there. And my copper and iron levels… normalized. Almost overnight. My iris rings faded and disappeared completely. They cut my iron pills down, then eliminated them entirely. For the first time in a decade and a half, I felt ‘normal.’ The weird muscle spasms were gone, as was the stiffness, frequent cramps, eye twitches, weird poop, constant low grade nausea… everything. Turns out a mutated parathyroid was responsible the whole time!”
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