CW: Contains mention of suicide
I always had a slightly odd gait as a kid, was fidgety, and always uncomfortable sitting in chairs while in classrooms.
Labeled as a hypochondriac by my father’s family and told how chubby, weak, soft, and attention-seeking I was; regardless of having 2 sets of tubes in my ears and the choice of having full orthodontics at 5 years old. Or having my jaw broken and wired shut with surgery.
Though I was always fast and strong, I would sustain “clumsy” injuries that were way worse after going to doctors. They just treated me like a fat kid that was bad at sports. I am sure that the eating issues I suffered as a kid were caused by my undiagnosed syndrome.
Fast forward to 29 years old. I was 6’1″, 315 pounds, and was working out, but fat and in incredible pain. I was on pain killers and had just left my cheating, abusive ex-wife. After dozens of doctor visits, chiropractors, MRI scans, etc. I went as one last hope to the University of Texas’ board professor of rheumatology. I had just turned 30 and with no car, I had taken a bus for several hours to see this professor during his lab time. One look at me he said, “You have Ehlers-Danlos syndrome.”
And every single health issue in my entire life culminated at that moment.
I’ve come close to death three times, overdosed twice, had random heart stoppages, tens of thousands of dollars in medical testing, support equipment, scans, and specialists to absolutely no positive progress. I sit with a double dislocated, double herniated jaw with no good way to really fix it.
With the help of medical cannabis, proper diet choices, and mild exercise, I lost 157 total pounds. Every single day is a challenge, constantly in pain with random symptoms daily, I keep strong and as healthy as I can.