People are always surprised when I tell them that I'd had over 500 broken bones by the time I was ten, but that I can count the number of times I've taken a narcotic on one hand. They often assume that breaking bones must not be painful to me, which I will never understand. Trust me, it hurts...plenty. There's nothing wrong with my nervous system. When I was growing up and breaking as often as once or twice a week at times, my mother knew that putting me on some kind of heavy narcotic or painkiller was only going to cause[...]
Category
Growing Up with Osteogenesis Imperfecta
"Do you go to the hospital every time you break a bone?" This is a question I get ALL THE TIME. The short answer is "no," in fact, I rarely go to the hospital for a broken bone. I am extremely lucky to have grown up with parents in the medical field, even if most of their patients have four legs and fur. We actually joke that I'm basically like treating a medium-sized dog. Over the years, my mother has gotten incredibly skilled in splinting and wrapping my various injuries, and always does a better job than they do at t[...]
I've recently embarked on a partnership with the Humane Society of Louisiana where donors are awarded a piece of my art based on how much they donate. The Humane Society focuses on fighting animal cruelty, neglect and mistreatment throughout the entire state. As you would expect, my family has known the head of the Humane Society of Louisiana, Jeff Dorson, since before I can remember, and when he approached me with this partnership idea, it felt like a natural path for me. A local news station, WGNO, recently featured my[...]
It's a beautiful day here in New Orleans. 75 degrees, full sun and a nice breeze coming off the lake. Fall is quickly approaching, and it's a nice change from our 97 degree, 100% humidity summer weather. (Not to mention the cold front is keeping the hurricanes away!) Our dogs have an extra spring in their step and my Facebook feed is blowing up with people enjoying the gorgeous weather at outdoor festivals or at parks with their families. Much like the French Quarter, I have a love/hate relationship with autumn. Like spri[...]
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[...]
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[...]
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[...]
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[...]
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.[...]
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[...]