Most people with Osteogenesis Imperfecta take part in some type of regular physical therapy and/or exercise program. You may think that because we break bones easily we would not be able to do that, but in reality, PT helps our bodies keep moving. Certainly we have to be careful, but anything we can do to allow our bodies to move in a more normal way, like swimming or walking in the water, is ultimately beneficial for our breakage rates, breathing, and overall pain levels. Aside from swimming, the absolute best therapy we[...]
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Growing Up with Osteogenesis Imperfecta
I’ve seen variations on this question come up on several disability-related Facebook groups recently, and I find everyone’s responses interesting. Although it seems like a simple question at first glance, it’s actually fairly complicated once fully analyzed. I think it’s safe to say that most disabled people’s gut reaction when asked this is something along the lines of “No, of course not. I am NOT my disability, and there is so much more to me than my condition. That’s like saying you define yourself as a[...]
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 writing had been on the wall for a while that I would need a new van sooner rather than later. The trusty Toyota Sienna that I inherited from my dad when he passed away six years ago had a multitude developing minor issues. The sun roof leaked, so when it rained, water collected in the ceiling of the car and rained down onto the passengers every time we turned left for days to come. The heater only worked on the passenger side. The tire gauge hadn't worked in years (Dad killed that one). The radio only picked up a handfu[...]
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,[...]
Alright ladies, time for some real talk. Guys, we are about to delve into the twisty but necessary world of undergarments, so you may just want to stop reading now. You've been warned. As you may suspect, finding clothes that are age-appropriate can be quite a challenge for me. I prefer not to wear shirts with peace signs or jeans with ponies. I try to stay away from neon. Being 2'7", it's hard enough getting people to realize I'm twenty-nine, and I don't need some big bedazzled butterfly shirt to make it more difficult.[...]
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[...]
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,[...]