Category

Growing Up with Osteogenesis Imperfecta

Eating Lying Down

I never understood this, but one of the most common fears people who aren't familiar with the way I function have about me is that I will choke because I usually eat lying down on my side. I've been doing this for nearly 29 years at this point, and so far so good. I'd say that's a pretty good track record. I can think of one time where I legitimately choked on a carrot, but that was because my cousin was goofing off and making me laugh hysterically at the dinner table, and I inhaled as I was chewing. Apparently I turned a li[...]
motivation

DO Something!

One of my biggest pet peeves is people who are physically and mentally able that choose not to take the initiative and do something with their lives. Even though I have this "disability" that makes me physically unable to do a lot of normal activities, my parents raised me with the idea that I would DO something with my life one day. I wouldn't be feeling sorry for myself at home on a bunch of painkillers watching TV all day. Pity parties were never an option. Granted, when I broke bones I was allowed to take a few days off,[...]
pain management

Dealing with Pain

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[...]

How often do you go to the hospital?

"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[...]
humane society of louisiana

Partnering with the Humane Society of Louisiana

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[...]
barometric pressure

Barometric Pressures of Fall

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[...]
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[...]