One of the most common therapies for people with Osteogenesis Imperfecta is rodding, or surgical procedures where metal rods are inserted inside the long bones for strength. One of the major issues people with OI have is that their long bones (arms and legs) develop abnormally and are often bowed. When they don’t grow straight, they are weaker and usually break over and over again where they are bent. I can’t tell you the number of times I broke my forearm before I got my rods. There was a point in my life where one arm[...]
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Katherine’s Day to Day Life
As this year comes to a close (yes, it's already November), I realize that it's time to update my bucket list/life goals. I've been lucky enough to check several items off in the last couple years, and there are new ones to add. I figure since my 30th birthday is fast approaching, now is the perfect time to dream big and set a few goals. Without further ado, I give you my bucket list/goals: Go to the Ellen Show: This is something I've ALWAYS wanted to do and haven't gotten the opportunity yet. With all the drama an[...]
Any of you Facebookers know that there is a Facebook group for everything, and Osteogensis Imperfecta is no different. There are several out there, some for the different types, some with a focus on fitness, some with age restrictions, etc. I belong to several, and sometimes it's nice to talk to people who go through the same social and chronic pain issues that I do. There are moments where I disagree with the way some members manage their pain, but to each is own and how they handle their bodies is really none of my busines[...]
When people find out I use a wheelchair for mobility, the conversation following usually starts either one of two ways: Person #1: Oh, I'm so sorry you are confined to a wheelchair. It must be so hard not being able to walk. I can't even imagine. You poor thing." OR Person #2: "You are so lucky that you don't have to walk! Where can I get one of those?!" Spoiler alert: both people annoy me. To Person #1: You're right. There are days where it does get very frustrating to be confined to a 400 pound pi[...]
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[...]
“Some believe in destiny and some believe in fate, but I believe that happiness is something we create.” -Something More, Sugarland In 2009, I talked my aunt into braving the heat and the crowds to see an up and coming band called Sugarland at Jazz Fest. The duo had a few songs out on the radio, and I thought they were pretty good. Little did I know exactly how good they were and how much my life was about to change because of them. I knew five minutes in that I was hooked. Jennifer Nettles literally has the vo[...]
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[...]
"Be courageous and be brave, and in my heart, you'll always remain forever young." -Sir Rod Stewart As many of you who follow my blogs and Facebook posts have seen, my friend, Christy, and I have had some pretty amazing experiences at concerts all over the country. We've had a private meet and greet with Reba, a conversation with Harry Connick Jr., and been front row for Fleetwood Mac. We've played blackjack with the Cadillac Three, and Florida Georgia Line has stopped an entire concert to give me a signed guitar from t[...]
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[...]
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[...]