Tag

osteogenesis imperfecta

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[...]
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[...]
Lexie, Katherine's Service Dog

Meet Lexie, My Service Dog

Meet Lexie, my 7-ish year old sheltie/border collie mix and trained service dog. We rescued Lexie about five years ago from the Gulf Coast Sheltie Rescue in Pensacola. She had been found five months prior running on the interstate with a child's leash attached to her, had heartworms, and knew absolutely NO manners or obedience. Though we did not want a puppy, we basically got one in adult form. She barely even knew her name. Originally, I wanted to get Lexie into competitive dog agility. It turned out that Lexie was p[...]
on the beach

Why I Hate the Beach

What is the first place you think of when you think of taking a summer vacation? I bet more than half of you instantly thought, THE BEACH of course! There's something about that beautiful blue water, the ocean waves, white sand, and sun that just lures people in. Kids love to run in the surf, build sandcastles and maybe throw a ball around while their parents love the relaxing sound of the ocean, a shady canopy, and maybe an adult beverage or two. Even the dog loves to play in the sand and the surf. There is something for ev[...]
depending on others

Depending on Others is Hard!

Do you suddenly find yourself depending on others for basic necessities? It's hard, isn't it? When people meet me, they often say things like, "Wow, you break that easily? You're in pain all the time? That must be so hard. I can't even imagine that." The truth is, yes, there are days where it can be difficult just to breathe and the pain factor really sucks, but most of the time I have an underlying pain that I've adapted to over the years. Sometimes physical pain makes it hard to be me, but doesn't everyone have somet[...]
jane hash, osteogenesis imperfecta

“Hashing It Out” with Jane Hash: An Activist With Osteogenesis Imperfecta

Posted In: All | Katherine's Friends
Today on Looking Up, I'd like to introduce you to a TRUE entrepreneur, Jane Hash, who just so happens to have Osteogenesis Imperfecta Type III like me. An activist, business owner, volunteer, podcaster, nutritionist, and blogger herself, Jane has truly done it all. Let's get started! Hey Jane! First, I want to start off with what exactly you DO...or maybe what you DON'T DO would be the shorter list! When someone asks you what you "do," how do you answer them? Thank you for asking that question because it’s someth[...]