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[...]
Tag
brittle bone disease
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[...]
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[...]
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[...]
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,[...]
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[...]
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[...]
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[...]
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[...]