Posted 14 April 2006 - 02:37 PM
i can't say this has altered me spiritually as i have never been really religious but it has made me more empathetic towards others with invisible illnesses and made me realize that i am surrounded by a lot of people who truly care for me. it has also caused me to realize my dreams...
march 5, 2001 i came down with severe abdominal pain, went to the er THREE times in one week and they said i just had a virus. final time the doctor did a c t and siad that i had really acute appendicidis and was really lucky it didn't burst.
after that i was unable to eat anything, my weight dropped to 80 lbs (gotta remember i am pretty tall...), had really bad gut pain every time i ate i threw up. we went to the er, they would scan me say i was constipated, and send me home. this went on for two months. finally my mom demanded a hida scan (test gallbladded function), i flunked, my gb didn't empty at all. had that out may 10, 2001. was still extremely ill, had an endoscopy that revealed acute gastric ulcers.
i was okay for a little while then feb 2002 i became really sick again. i couldn't stop throwing up (i was about 5'4 and didn't weigh more than 85 lbs.), had severe gut pain again. i was admitted for GI testing for two weeks, they found nothing wrong, so i went to the pain clinic. then i saw a doctor researching CFS and he did a tilt table test and diagnosed me with dysautonomia (more specifically Postural orthostatic tachycardia syndrome, translation i stand up, my bp drops extremely low, as a result my hr shoots up). we saw a specialist who diagnosed me with Ehlers Danlos Syndrome, and i was doing okay for like six months. was functional able to go to school.
last year i started passing out every time i stood up, so i became dependant on a wheelchair. six months ago i got to the point where i can no longer sit up without my vitals getting messed up (my bp record is 40/30, heartrate 210, oxygen saturation 59%). i was watching discovery channel when mystery diagnosis came on and this girl had the exact same symptoms as me, turned out she had cranial cervical instability, a retrofluxed ondontoid bone, and chiari malformation. so i had an MRI and we sent those to milwaukee, went up there feb 21 and was diagnosed with chiari malformation (not enough room in my skull so my cerebellum is herniated into my spinal canal), and cervical stenosis (spinal cord compression). so i go in for testing on monday to see if we need to fix my head or wait until i'm done growing to take the pressure off of my spine.
thanks to this illness i am more empathetic to others like me. example there is a family down the street whose daughter has SEVERE bipolar disorder, and is in a group home (probably will be for the rest of her life), so i make it a point on holidays and her b day to put together a goody bag for her. I want to advocate for other ppl who might be really sick like me, but look normal. this has also made me realize my dreams of helping others who might feel that their situation is hopeless. i would like to be a pediatrition or a psychologist.