The Power of Faith Through Rough Times

It the midst of all my medical troubles lately, I’ve failed to find a purpose. I’ve failed to find something that gives me comfort and joy. I’ve refused to let my friends love and help me on my journey. It’s like I’ve settled in a dark place, and I’m stuck.

I wake up and go to bed everyday mentally and physically exhausted. Anxious thoughts fill my head about what’s going to happen next. Anxious thoughts fill my head without about how much of me my friends can take. I’m different. I look, think, and feel different. My goals and different, my morals are different, my life is now different. How much of me can one person handle? How much of my traumatic brain injury, brittle bone disease or anxiety can one person handle? How much can I handle?

It’s through all of these worries, changes and concerns that make me question who I am, and what makes me. How can I lead a normal life is it consists of 4 walls and a glass window? Treatments, therapies, appointments, and surgeries..they consume my life, as I’m sure they do many. So where exactly am I going with all of this?

When I feel so anxious and shaky, when I question my self worth and what the purpose of my life is, I turn to God. Survivors see the world differently. I turn to him for comfort and peace. I turn to him when I am both grateful and sad, excited and nervous, joyful and disappointed.

On days like today when my traumatic brain injury causes me to be so emotional for no reason, and to look back on who I used to be and who I am now, I realize I have two choices. I can either walk away from God, or turn to him. One of which feels a whole lot better than the other.

Thank you God for comforting me on days like today when I feel alone, sad and without a purpose. Please continue to heal my brain and stand by my side throughout the rest of my life.

 

 

 

 

 

 

 

 

 

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A Day I’ll Always Look Back On

Some days I wake up and reflect on everything I’ve been through. October 4th, 2015 holds a special place in my heart. That’s the day when my life was put in the hands of God. That’s the day when things could have took a completely different turn. 

A dirtbike accident that left my future uncertain doesn’t sound like a happy memory; but that day made me realize how grateful I am. How my willingness to fight and live was going to decide my fate. How God is so unbelievably loving and amazing. That day left me with physical pain – a shattered and fractured elbow, a broken nose, spine/neck injuries, and a traumatic brain injury (severe concussion that lead to post concussion syndrome). Physical pain was something I was prepared for, as I’ve grown up with this rare disorder called Osteogenesis Imperfecta (brittle bone disease). Broken bones wasn’t a challenge. But I wasn’t prepared for the mental pain this day was about to bring me. The anxiety on top of my already existing anxiety disorder, the depression, the stress, the feeling of being overwhelmed, the feeling of never being able to recovery. I was an independent person, who now how to depend on my parents more than ever to help me get through the day. 

I went to physiotherapy and got told the motion in my elbow will never come back fully. Those screws that saved my arm by holding it together may now be the reason I need limitations. The traumatic brain injury I sustained will now follow me the rest of my life. It changed who I was. My first life ended and now it’s like I’m a completely different person. It’s overwhelming.

This day changed me. Mentally and physically it changed me. 

Today, I woke up and looked across the room at my inspiration board. Today, I looked at that inspiration board and looked at everything I went through, and continue to go through. I cried. The overwhelming feeling of going from 24 hour care, to now having to learn to stop depending on people. To stop depending on people in the physical and mental aspect. I cry looking at how far I’ve came, and how some days I’ve wanted to give up. I remind myself on the days I want to give up that I was given a second chance at life. My life could have ended on that day. It didn’t because after I woke up from being unconscious on the ground covered in blood, I screamed for help. I’m here because I never wanted to give up. I knew I was in for the fight of my life but that was something I was used to – as someone who broke multiple bones growing up. I surpassed not only the doctors expectations, but my own. I lived. I’m able to walk and run after sustaining injuries that could’ve took that away from me. I got full motion back in my elbow – and am now referred to as a statistic. 

This is a day I’ll look back on for the rest of my life. I went through the unimaginable. Therefore I can’t give up now, and when I wake up every single morning, I look over at my inspiration board and tell myself – look what’s behind, and look what’s ahead. You’ve endured more than the average sixteen year old. You’re strong and your fighter. Never lose those two qualities. Keep pushing forward and don’t let anyone or anything stop you from reaching your full potential. 


Bracing Myself 

Written By: Bethany 

I used to think OI wasn’t so bad.
To be fair, my Osteogenesis Imperfecta (aka “Brittle Bone Disease”) is extremely minor. My genetic condition was a spontaneous mutation not found elsewhere in my family, so I was not diagnosed until I broke a leg when I started walking.

From there, I broke sporadically throughout my childhood, but always healed well and quickly. My parents allowed me to set my own limitations and decide for myself what activities were worth risking a break.

Due to being a spontaneous and minor case, I was never connected to the OI community. I never met anyone else with my disease, or even knew what more severe forms were like. I saw it often represented in medical shows, and even the movie “Unbreakable,” but these fictional portrayals seemed foreign to me.

That meant I grew up a bit of a daredevil. Broke three fingers at once on a trampoline, mangled a wrist making ice slides during recess, and even broke a leg jumping over the dog the night before my brother was born. (Maybe I needed one last night to be the center of attention?)

But in 2012, I was in a life-altering car accident. An 80-year-old man with Parkinson’s and dementia drove his car right in front of mine, leaving me nowhere to go at 40 miles an hour. I slammed on the brakes, so my right heel absorbed the force of the impact and shattered. It would never fully recover. My airbag went off and slammed my left arm into the side window, shattering both my radius and ulna.

Having broken so many bones in the past, I thought I knew what to expect. But this was something else entirely. My foot could not be fixed for two weeks due to swelling, so I lived with the agony of bone pieces grinding against each other inside of my heel. While I had once been a crutching pro, I now found myself wheelchair-bound, with only one working hand. No pain drug dose was high enough to relieve the agony.

They told me these were bones that would have been expected to break in an accident of this kind, but I began to wonder… would my bones have shattered THIS badly, if not for my OI? For the first time ever, I genuinely wondered if my OI was making me suffer more pain than others would have in my place.

And that left my husband and I with a question… could and should we pass this on? We had never wanted many biological kids (we prefer to adopt from foster care), but should we have any? I’d had genetic testing and knew any biological kids had a 50% chance of inheriting my disease. Could I handle watching my child suffer as I had, wondering if it was my fault?

We wrestled with that question, and eventually decided to move forward with one biological child.

As the pregnancy progressed, we decided to do amniocentesis to test our baby girl and find out if she inherited the disease. Terminating the pregnancy wasn’t an option for us, but we wanted to know as soon as possible whether we needed to do anything special to protect our little girl. Things had been going so well that I became hopeful and convinced myself she was OI-free.

She wasn’t.

I was devastated. I felt so guilty, as though I had somehow done this to her. I was overwhelmed thinking of the broken bones that were in her future, and wondered if she would someday resent me. Despite having traveled the world, remained active, and generally not allowed my minor OI to limit me, I worried that perhaps she would feel I had limited her life. I joined OI groups on Facebook for the first time ever and my eyes opened to scores of possible OI complications I had never imagined.

OI often makes babies be breech (about 40% of the time), and our daughter was no exception. She was born by scheduled C-section, delivered by an OB-GYN who was openly fearful about the potential of breaking one of her bones during delivery.

As it turned out, our daughter was delivered with bowed femurs, but otherwise intact. Her first pediatric ortho visit was at only four days old. Family and friends visited us at home, some visibly terrified of her OI. Despite having nothing visibly wrong with her except for some rounded thighs, she was already being treated differently. My heart hurt.

The orthopedic doctor diagnosed our baby with developmental hip dysplasia, in addition to her OI. The doctor’s visits continued. As we waited in the exam room on the second visit, I heard a child in the next room. The child was screaming, due to (I assume) an injury of some kind. I don’t know how old the child was, or what happened, but I felt like I was getting a glimpse into the future. Someday that would be my child, in this very office, screaming in pain. I looked at my (contentedly sleeping) baby and started to cry.

That night, I put my daughter into her nightly hip harness for the first time. She fought it and cried. I thought of all of the various contraptions and casts I will have to help strap my baby into down the road, and I cried.

During the day, I watch our baby girl who pushes herself to attempt an early crawl, who tries to stand whenever we hold her against our chest. I cheer her on and marvel at how much faster she is advancing than I ever did. But at night, I have nightmares of her crawling before I am ready and falling down the steps. I am constantly making sure no papers are left on the floor, because slipping on an envelope was how I broke my first bone. My daughter’s powerful motivation to crawl and walk terrifies me, but I smile at her and cheer her on anyway.

So as it turns out, OI is that bad. Even when it is extremely minor for the child, someone else has to watch that pain. Someone has to dry the tears, anticipate the next ones, hold a screaming child on the x-ray table, and bite their tongue when their breakable child chooses to be brave and live a full life anyway.

I know now that my baby girl’s OI journey is going to be so much harder for me than my own ever was. But I am thankful for my tiny little chatterbox who pushes herself to meet her physical milestones, even as I see her hurtling toward that first fall. I will be there to cheer for her, and I will be there to pick her up when she falls. I can’t stop her OI, but I can stop her from living in fear of it.

The Raw Truth Behind Invisible Illness

When you look at me, what do you see? You see a smile, big beautiful eyes, and a glowing spirit. You watch me laugh, joke around, and talk up a storm. The real question is, what don’t you see?

You don’t see how this girl struggles with two illnesses – a traumatic brain injury, and Osteogenesis Imperfecta (brittle bone disease). You don’t see the pain, the sleepless nights, the lack of understanding from the public eye, the numerous and exhausting doctors appointments. You can’t see how each day is a struggle for me. The struggle to get out of bed,  to go to school and work, to find the energy and the motivation to get through each day. The struggle to exist, let alone live. 

Invisible illness puts us in tough situations. We have to deal with judgement and misunderstanding. We have to continuously explain ourselves and more often than not that’s not even enough. The pain is just as much mental as it is physical. It takes a toll on us every single day. We get tired of fighting, we get tired of being judged, and we get tired of being in pain.

We advocate for ourselves hoping that one day things will change. Hoping things will change in a way where we don’t have to explain ourselves, our pain, and our actions. In today’s society, you have to be the ideal “magazine worthy” person. The pain you deal with, the tubes you may have, and the difficult situations you face  automatically causes society to define us as “abnormal”. 

We’re people too. .but that’s just how it is. This is the raw truth. 

Mya’s Story

“I am 13 years old and I was diagnosed with OI when I was born. I have a mix of type 3 and 4. I was born with both femurs broken, broken arms, and my head too. As I got older I have broken almost all of my bones, have had almost a hundred surgeries and 200 fractures. I have rods in both of my legs because that’s what i have broken the most. I’m not normally in a wheelchair but it’s pretty severe so I’m not aloud to run or jump or attend gym class or anything like that. But last year i got diagnosed with scoliosis (Which you probably know comes with a higher risk due to OI) but over the last year it has gotten so bad resulting in me having to get  a spinal fusion in February which will leave me in a cast for at least six months and I may not be able to walk independently after at all. I get treatments every 3 or 4 months it’s called pamidronate but right now I have a broken pelvis in two places from slipping on the ice.”

5 things rare disease fighters want you to know 

Rare is defined as a situation, condition or event that is uncommon. It’s kind of funny because there’s so many different diseases out there, yet the stigma around it is anything but uncommon. On behalf of rare disease fighters everywhere, let me make a few things clear.

1. No, I’m not contagious. I have Osteogenesis Imperfecta, a rare BONE disorder. The fragility of my bones isn’t going to rub off on you, so please stop acting like I’m dentist appointment you’re trying to avoid. 

2. It’s pronounced EDUCATION ; not attention. You know the saying your mom used to tell you everyday when you’d come home complaining about school, “it never hurts to learn something new”? Yes okay well it doesn’t hurt for you to LEARN about a rare condition that alters my physical body and my mind. I’m sorry if I’d rather educate you than deal with your lack of understanding. It’s not for attention, it’s purpose is so the next time you laugh at me for coming to school with another cast, maybe your conscious will set in.

3. Yes, you probably do see me smile and laugh a lot. No, my rare disease didn’t just go away. And no, I don’t fake it. Life goes on. I deal with pain, stressful appointments, I question my self worth and struggle to get out of bed sometimes; but I believe the power of a single smile can brighten your mood. You gotta push through the pain to get to where you need to be. You know what they say- fake it till ya make it. 

4. I’m not cancelling on you. I have so much going on that sometimes I forget about my own appointments. I have days where I’m exhausted, physically and mentally. I need to do what’s best for me and my health and I’m sorry if you take that personally. I love everyone that supports me, but sometimes the best medicine for me is to just say no. 

5. Lastly, us rare disease fighters want you to know that we appreciate you. Whether your an advocate, doctor, parent, sibling or friend, we truly do want you to know how much your everlasting love and unconditional support means to us. You give our days a a little extra meaning, which is all we need. 

If you have a rare disease or have been struggling in any sort of way, please know you’re not alone. We all struggle. Your condition doesn’t define you, how you deal with it does. Never lose hope.🎗❤️

Dear politicians

About 1 in 12 people (nearly 3 million Canadians) have a rare disease. These Canadians range from young and old, men and women, adults and children. They face many challenges such as being misdiagnosed and lack of treatment options.

Osteogenesis Imperfecta is amongst these rare diseases. This condition affects about 6 or 7 per 100 000 people worldwide. Osteogenesis Imperfecta is a rare bone disorder that causes weak bones. There are many types, the most common being type one. 

OI type one can be caused by alterations in the COL1A1 or COL1A2 genes (thanks to the OI & rare disease websites for sharing this information). These genetic changes cause a reduction in the amount of normal type one collagen made in the body, thus producing weak bones. 

OI doesn’t “go away”. Fortunately, although it’s incurable there are pain management/treatment options such as pain medication, physical therapy, proper care for broken bones & brittle teeth, etc. 

I guess what I’m trying to say is rare disease patients deserve a voice. They deserve a chance. They need funding and awareness. 

Let’s take childhood cancer for example. Only 4% of ALL cancer research funding goes to childhood cancer. So many children are diagnosed with a variety of cancers including rare forms, yet their fate depends on 4%. 

What if your own was diagnosed with a rare disease, disorder or cancer? What if you had no treatment options, or no way out for your child, friend or relative?

Would you still think their life is only worth a single digit, such as 4%?

A blessing in disguise 

It’s all about attitude, perspective and determination. When something bad happens it’s our immediate reaction to have a negative attitude, be upset, and lash out in frustration. For the first part of my accident recovery this was my attitude. I was frustrated with all the work that went into healing, and I was frustrated with the thought of me never being who I used to be. 

I quickly learned that I wasn’t going to get anywhere thinking like that. It wasn’t going to help my recovery process. My transformation was hard. Maybe to the outside world you don’t see any kind of transformation. Physically, I proved everybody wrong and got the motion back in my arm. No matter how much trouble teachers gave me at school I tried my hardest to beat my brain injury, and stay in school. My transformation was both physical and mental. 

Not only did I start running to improve my stamina, but I changed my attitude and priorities to succeed. I want to get fit and become a cop. I was lucky enough to get a second chance at life. My pre injuried self is gone. Post concussion syndrome changed my personality, and who I was. Now it’s up to me to find the new me. It’s up to me to figure out what I’m called to do in life. 

People I go to school with or hang around don’t really understand why I do what I do. I raise awareness which isn’t the “cool” thing  to do, it’s not very common where I’m from. But my priorities have changed. I do what I do to achieve my goals and dreams, not to be cool. I do what I do to be successful, and achieve my goal of becoming a cop. 

Even though being a cop is my main goal, I can be anything. A nutritionist, an X-ray technician, a nurse. I have the potential to be Anything. Whatever I decide, I know I can do it. I work hard, I stand up for what I believe is right, and I don’t care what you think. 

This is my transformation. Physically and mentally. My dirtbike accident affected me in more ways than the average person can understand. Having OI prolonged my recovery. But I did it and continue to do it. 

Don’t wait until it’s too late to change something about your life. Don’t wait for something bad to happen. Set your goals, and do it. 


Your guide to living with broken bones 

Whether you have OI or not, broken bones can be very hard to live with, especially if you’re a newbie. During my many years of experience, I’ve learned what to do and what not to do; tricks that make daily live with broken bones a little simpler. 

  • Attitude – our immediate reaction when something bad happens or doesn’t go as planned is to freak out, cry, lash out in frustration. After breaking a bone, remind yourself that you’re just putting your life on hold. It’s time to relax and take extra good care of yourself. Allow your body to do what it needs to.
  • Communication – whether you live on your own, with a parent, or with a friend, communication makes things ten times easier. Using technology such as walkie talkies, cellphones or iPads whenever you need medication or a favor is much more efficient compared to trying to get up and do it yourself. It’s not laziness, it’s just precautionary. Sending a quick message is all it takes to reach out to someone for help. 
  • Medication & hydration – have your doses planned out for the day and make sure you are continuously drinking water. Some medications dehydrate us quickly and cause constipation, so drinking fluids throughout your healing process is very important.
  • Clothing – especially if you’re casted, putting on clothes is a chore. You suddenly realize that all your clothes are tight fitted – you literally have that one baggy sweater in the front of your closet. Well, make things easier on yourself and rearrange that closet. Have easy access to baggy clothes so they can easily slip on over those casts. 
  • Swelling – ice is the body’s best friend during broken bone healing. Ice on, ice off!
  • Foods that promote bone healing – After doing some research, these are so foods that have been proven to help with bone healing; skim milk, broccoli, sesame seeds, sweet potatoes, oatmeal, and sardines. 
  • Cast tricks – I use to take baths all the time after breaking a bone. All I really wanted was a nice hot shower.. That’s when I learned to use a plastic bag or  better yet, Saran Wrap. Back when I broke my elbow in October, I layered my cast in Saran Wrap and sealed it with an elastic. Of course you’ll have to stock up.😉  The other tip I have is if your cast does wet, immediately grab a hair dryer and hold it at a safe distance where your cast won’t get burned or melt.