Road Map Thru SB
Hi my name is Regina. I am 31 years old. I have Spina Bifida Myelomeningocele and Hydrocephalus . My level of spina bifida is L4/L5. Due to Hydrocephalus, I have a VP ( Ventrical Peritoneal) shunt that currently drains into my stomach cavity. I have a Neurogenic bowel and bladder. I used to self-cath, then I got a Mitrenoff. Currently I have a super pubic catheter. I do enemas every other day for my bowels. I have a severe latex allergy. I can’t touch something that is made of latex, nor can I be in a closed in space with said item. If I breathe in the powder it also affects me.
I live in Ohio with my grandma because I had to move out of my apartment. Life hasn’t been easy but I consider myself lucky. I have a loving supportive family & great doctors. One of which, I consider to be the best, Dr. Curtis Sheldon. My parents are the main reason I am here to type this story. They were told to put me in an institution. That I wouldn’t be able to walk or socialize & make friends. They didn’t listen & raised me along with my two awesome younger sisters, who I call my body guards. They better not catch you staring at me.
While I may not be perfect at either walking or socializing (I am terminally shy) I am able to do both. I walk funny with AFOs and sometimes a walker. I am not able to walk all of the time so I use a power chair when I can. I may be shy, but I have managed to make lots of friends along. The majority of my Facebook friends are either family or actual friends I’ve made throughout the years.
I don’t drive. But I don’t think I’d be able to. I’m very nervous when in traffic. Don’t even mention off ramps. Besides cars, insurance for them and gas are all very expensive. I get around though. With the help of my family and various transportation services.
I love doing crafts. Currently I’m into loom knitting. I’ve made hats &scarves & many other things. Right now I’m working on a ponytail hat. I sell most of my projects at yard sales in the spring and summer. I enjoy reading, and yes I am one of those Twilight people, unapologetically. I write, mostly in my journal. I like to paint and draw, although I’m not the best at those but they are fun.
For 10 years when I lived on my own apartment, I had a volunteer job at a Catholic I attended as a student. I was the assistant to the principal, however I did a little bit of everything, except teach. I have a slight learning disability which makes things like math very difficult. In school it was that and Science. Never mind memorizing dates. Kind of wish we had podcasts when I was in school. History is so much more interesting that way. Although ask me anything about Robert Pattinson I can answer it. Back in the day it was Leo DiCaprio and NSYNC.
I went to regular schools throughout my life. I did attend a disability type school in preschool and I may have in a Special Ed class for like a minute in elementary school but I’m not too sure about that. Junior and Senior year I went to a vocational school. My parents had to fight to get the school to not pass me in kindergarten but they did, even though I didn’t have passing grades. But in third grade I was held back because I had had a major surgery and missed so much school. I literally had a mountain of homework to catch up on.
Because of my multiple surgeries, I like to say my stomach looks like a road map. I did a school like program, after high school, at Cincinnati Children’s Hospital, where we learned different jobs throughout the hospital. I did clerical jobs which prepared me for the job at the school. We also learned the processing looking for a job. Calling to set up an interview. Then we actually went to the interviews.
For about a year and a half now I’ve lived with my grandma and I pay her rent, while I wait for an apartment in town. I’m number six and have been since about May so hopefully I get in soon. In the meantime, I babysit my nieces and nephews and I get the older ones on and off the school bus.