Tag

osteogenesis imperfecta

A Look Inside My Art Room

I’m not one of those typical “I work best in a mess” artists. I have too much of my father’s left brain in me for that. When everything is everywhere, it makes me to anxious to work. I like organization – everything in its place where I can always find it. I like my workspace to look clean and uncluttered, even if it is secretly a disaster behind closed cabinet doors.   In my art room, it’s especially important that my materials are put away properly because I often have several different people in there hel[...]

Swimming: My Best Exercise

As you can imagine, finding an effective way to exercise when you have limited mobility is tricky. It's even harder when if you move certain ways or overwork your muscles, your bones break. Welcome to my world. My biggest problem is that my muscles are stronger than most of my bones, and so when they contract too hard or spasm from overuse, they often break my bones. And that really sucks.  Luckily, my mother realized that the best way for me to move is in the water, and she started making me swim (with assistance of cours[...]

The Comfort of Lying on Tables

As most of you know, I spend a lot of my time lying down. It’s easier for me to function in that position because my back and neck get tired quickly in my chair, and when I’m lying on my side I feel like I’m not having to fight gravity as much. It can be hard for me to lift my arms to do things sitting up, but lying on my side I can use my body to support them while I eat, paint, and type. (And no, I don’t choke while eating on my side. Read more about that here.) You would think that having brittle bones would ma[...]

Finding an Aide

With as many people out there looking for a job as there are, you would think that finding an aide for me would be an easy task. Let me be the first to tell you, it's not.  The ads we place when searching for a new aide for me usually go something like this:  "In search of a woman between the ages of 23 and 45 to be an aide/personal assistant to a young lady with Brittle Bone Disease. Your responsibilities would be, but are not limited to, assistance with transfers from wheelchair to toilet and lying down position, help[...]

Dieting with a Disability

Let's just get it out there: dieting sucks. Right ladies? I mean, what is better than a hot donut first thing in the morning, a big, juicy  hamburger with a buttery bun and a soda for lunch, or fresh pecan pie with ice cream after dinner (maybe with a glass of port or sherry)? I'm drooling just thinking about it! Why is it that all the good foods make us gain weight?! Because I rely on everyone else to move me around, it's important that I watch my weight (as annoying as it is) for the sake of their backs and knees. Also,[...]

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[...]
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[...]
flying with a wheelchair

The Challenges of Flying with a 400 Pound Wheelchair

My blog this week was supposed to tell you guys about the amazing art teachers I've had throughout my career, but the experiences I had with my wheelchair over the weekend flying to Maine and back inspired me to switch it up a bit. Don't worry, art teachers are soon to come. A couple of months ago, Mom and I were given a unique opportunity to plan a trip to anywhere in the United States we'd like to visit at little cost to us. We chose to head to Maine, a trip we've wanted to take for several years, to visit a some close f[...]
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[...]