Category

Growing Up with Osteogenesis Imperfecta

being sick osteogenesis imperfect

Being Sick and Having Osteogenesis Imperfecta

It's summertime, and you know what that means-everyone seems to be sick with that miserable upper respiratory cold that goes around without fail at this time every year. You know, the one you have tried desperately not to catch? The one where you tell yourself it's just a sore throat, and then before you know it, you're pretty sure you're dying from drowning in snot from the inside out? Yeah. That one.  Having Osteogenesis Imperfecta makes catching a simple cold a major problem for me. Because my rib cage didn't develo[...]
child abuse

“Looking Up” Excerpt: Caged? Child Abuse?

Parents of children with Osteogenesis Imperfecta are often charged with child abuse, simply because their kids always turn up with broken bones. My muscles can break my bones when they contract, making it seem like my bones break at random. You can see where, especially if a child has a lower severity of OI, parents are blamed when the child shows up hurt at school and can’t say how they hurt themselves. Well, my parents have also been charged with child abuse, though for a slightly different reason… My parents ar[...]
wheelchair control

10 Useful Gadgets Brought to You by People With Osteogenesis Imperfecta

Having Osteogenesis Imperfecta, or Brittle Bone Disease, certainly poses some unique problems for those of us with short limbs and limited mobility. Here are ten gadgets/adaptive technological advances that help actual people with OI as well as other disabilities. 1. Wheelchairs: This one is pretty obvious, but most of us with the more severe forms of Osteogenesis Imperfecta (Types 3/4) use electric wheelchairs for mobility. Most of us use one of Permobil's models because they are technologically the most advanced and e[...]
wheelchair

The Process of Getting a New Wheelchair

Because I have Osteogenesis Imperfecta, or Brittle Bone Disease, it's extremely important that I use a wheelchair that is not only stable but supports my crooked body in all the right places so that I don't break a bone if I hit a bump. My body is not standard. I have bends in all the wrong places, so my seating system has to be completely custom to be comfortable and effective. I have to be physically able to reach the controls and push all the buttons. It's important that every detail of my chair is tailored to my need[...]
school inclusion, high school

The Importance of School Inclusion

Last year, I was given the opportunity to speak to a group of teachers about the benefits and importance of the inclusion of disabled kids in mainstream schools (school inclusion). By the time I was three years old, my parents started looking into pre-school options for me because I was driving them crazy! I was smart and curious, and I wanted everyone to bring me everywhere so that I could see EVERYTHING. I was bored all the time. I obviously needed something else to stimulate my brain, and my poor parents were exhausted.[...]
depending on others

Depending on Others is Hard!

Do you suddenly find yourself depending on others for basic necessities? It's hard, isn't it? When people meet me, they often say things like, "Wow, you break that easily? You're in pain all the time? That must be so hard. I can't even imagine that." The truth is, yes, there are days where it can be difficult just to breathe and the pain factor really sucks, but most of the time I have an underlying pain that I've adapted to over the years. Sometimes physical pain makes it hard to be me, but doesn't everyone have somet[...]
Katherine's early art

Why I Got Into Art

When I was little (in the younger sense as I am still little in the physical sense), I drove my parents absolutely bonkers. Because I didn't have to learn to crawl or walk, I learned to talk very quickly, and was speaking in full sentences at ten months old. Ordering people around came as a natural skill, and I was bored all the time. That got a bit better when my mother insisted that my doctor help us get my first motorized wheelchair when I was two, but when I didn't have something to keep me occupied, I got cranky. Eve[...]
osteogenesis imperfecta x-ray

Osteogenesis Imperfecta 101

Osteogenesis Imperfecta affects approximately one out of 15,000 people. In a nutshell, it's a genetic bone disorder that causes bones to break easily and grow abnormally due to a lack of collagen (the stuff that helps make up your bones, organs, hair, and fingernails). It also causes weak ligaments, hearing loss, breathing problems, and dental issues. The whites of OI people's eyes tend to have a blue tint, and they usually have a fairly triangularly shaped face and a "pigeon breasted" chest (meaning that the sternum sticks[...]

Hey Y’all!

Welcome to my new blog, Looking Up. Here you will get to know me a little better, and hopefully I will make you smile, laugh, and think. I want to give you a VIP look into my life, which you will find is very different yet much the same as your own. So, let's get started with a few "Katherine Basics." Call me Katherine. I let a few of my friends call me Kat, but if you call me Kathy or Kathleen, I WILL run you over with my 400 pound wheelchair. Not kidding. I have a genetic bone disease called Osteogenesis Imperfect[...]