Saturday, December 31, 2016

My Year in a Tattoo

Historically in literature, trees have been known to represent antiquity, immense and enduring strength, stability and in some instances overcoming illness.

In December, I decided to add a tattoo to my collection, a small pine tree on my rib cage. To some, it's just a "cute" little tattoo. Some might assume it is to represent an undying love for nature. But in all reality, this tattoo means so much more to me. 

2016 was quite the year let me tell you. Accomplishments, triumphs, loss, despair... name an emotion and I can almost guarantee you that I felt it at some point. 

I spoke out about my struggles with mental illness at my old high school, graduated nursing school, started my career as a registered nurse in both the fields of obstetrics and pediatrics. Helped start a not-for-profit organization that supports people with Neurofibromatosis and helped raise close to $8,000 for the same group. I've strengthened existing friendships and have let new people into my life. My relationship with my parents is a strong as it has ever been. 

But you know what? I have also felt almost every low emotion too. I've lost important relationships, experienced some of the worst depressive symptoms I've had in many years and have had to start antidepressants. I've had to learn to cope with change and adversity. I've started therapy, and have reached out to an incredible life coach who has given me life changing advice on how to overcome hardship and adversity. 

To say my 2016 was a roller coaster would be an understatement. It was joyous, hell, beautiful, awful and quite frankly life changing. But you know what? I am so damn proud of myself. I am standing here, and I am proud to be sharing my story. 

This tattoo is to remind me of this wild and crazy year. The asymmetric nature of the tattoo is supposed to represent that life is imperfect, and therefore I am imperfect. It is there to remind me that although things might be okay right now, there will be a time in the very near future that things might fall apart, and there will also be a time in the very near future where things will flourish.

Many people have said that 2016 was the "worst year", but I want you to think back to what made this year what it turned out to be. Think hard about the things that maybe you could have done differently, think about what you did well. Take all of those thoughts and feelings and turn them around into something great for 2017.

Have a safe and happy New Years everyone!


Monday, December 5, 2016

Alberta Tumour Foundation

Wow! What a month it has been! On November 12, the Alberta Tumour Foundation held its first event to raise awareness for Neurofibromatosis.

Never heard of the Alberta Tumour Foundation?! Well no fear, because I am here to tell you ALL about it! Myself, along with some other extremely incredible board members have created a not-for-profit organization in Alberta to support those living with Neurofibromatosis. Our goal is to provide support, awareness and advocacy to EVERYONE in Alberta, regardless of how NF has impacted their lives. Each individual on the board of directors has in some way or another been impacted by this condition, and we all have a deep desire to bring more education and light to the world of NF. 

On November 12 we made our bid debut as a group, and I am still in shock at the level of support the community gave us. We hosted a dance/social in Calgary, and had a silent auction, snacks, a bar and some pretty great laughs out on the dance floor (Scott, I contemplated posting your Gangman Style routine here!). I know this is the first time I've posted a thank you, and I've been holding off because I am still trying to process the incredible success we encountered that weekend. 

With the help of each person who bought a ticket, donated or purchased silent auction items, had some beverages at the bar and/or donated money out of the kindness of their hearts... you helped us raise over $7,800. Thank you, thank you, THANK YOU! 

Now, you all might be wondering what we might be doing with this money... and I am going to tell you!!! Each of us on the board of directors feel that social networking, bonding, and creating new relationships are extremely important concepts in the world of NF. I know I can speak for myself, that I used to think I was the only one living with this condition. I felt utterly, and completely alone. But you know what... I never was. There is an entire community out there of people living with NF, and once I immersed myself in that world, I started to flourish. We all deserve to feel like we're supported, and that is what ABTF wants to do! 

Right now we are in the process of planning another social event for next year, and at some point we've talked about hosting an educational symposium. We want to get medical professionals involved in our group, which we subsequently hope will bring more awareness into the health care system. 

There is so much we want to do with our group, and we are just starting out! The prospects of where this group can go is absolutely overwhelming! Be patient with us, as we are all learning what works and what does not work, but we do promise some awesome things coming your way in the years to come!

We are currently working on our website, but PLEASE make sure to check it out! And let us know what you think the NF community needs here in Alberta! 

- Court

Sunday, November 6, 2016

Invisibility of Mental Illness

Invisible illnesses are are not always obvious to onlookers. Chronic pain, sleep disorders, heart conditions and digestive disorders are all examples of invisible illnesses. But did you know, that mental illness also falls into this category?

When you think of someone battling depression or anxiety, what do you think of? Do you think of someone who can't get out of bed in the morning, or someone who can't hold down a job? Do you think of someone who struggles with relationships?

The media paints a pretty clear picture on what mental illness should look like. Apparently people with depression, anxiety, bipolar, or any other mental illness need to look and behave a certain way to be taken seriously.

Not long ago, I started taking antidepressants again. I had been on antidepressants since I was 15 years old, and went off of them about a year and a half ago to see how I could function on a day to day basis without the stabilizing effects of my medication. Long story short, it didn't end up entirely well, and I found out that my body just needs a little bit of extra help to stabilize my neurotransmitters.

With all of this going on, I've faced a lot of stigma and judgement from my peers, and even from complete strangers. I get people telling me things like:

"Courtney, you have so much going on in your life that is amazing! Be happy!"


"Smile Courtney! Your life is great!"

This bothers me. It actually irks me. Since when do positive life events automatically mean positive thoughts? Just because I have a stable job, supportive friends and family, and relatively stable health does not mean that I have all of my mental faculties in order. It does not mean that my hormones and neurotransmitters work they way they are supposed to. It does not mean that I am happy all of the time.

About a month ago I was at the pharmacy filling my prescription. The pharmacist got the medication together, told me about all the side effects, how to take it... all the pretty standard stuff. When she handed me the prescription she said:

"Now dear, we're just treating a tad bit of anxiety right? You're not depressed"

I was furious. I'm not depressed?! Seriously? How do you get to make that judgement from talking to me for maybe five minutes? Is it because I don't look depressed? Is it because I'm well dressed and seemingly put together? How could she make that judgement? I looked at her right in the eye and said:

"Um no. I actually have depression. This medication is to treat my depression."

See, the point I'm trying to make is that mental illness can be just as invisible as chronic pain. People can suffer silently from these mental illnesses that are actually extremely debilitating. You can't see depression. You can't see anxiety, or bipolar, or OCD. Sure, some of the behaviours that accompany these conditions are a dead giveaway, but by just looking at someone, you would never know.

So the next time you talk to someone who tells you they suffer from mental illness, take a step back and remember that people from all walks of life deal with this kind of stuff. All we're asking, is for a little bit of understanding. Mental illness already has such a stigma attached to it, that some people feel afraid to come forward because they feel like they don't fit the diagnosis. This. Is. Dangerous. Each and every person deserves fair and equal treatment, so whether or not they look the part, please start taking mental illness seriously. People won't come forward if they don't feel supported, and untreated mental illness can have catastrophic effects...

- Court

Monday, October 17, 2016

Attention Deficit Disorder (ADD) / Attention Deficit Hyperactivity Disorder (ADHD)

Did you know: That approximately 50% of children with Neurofibromatosis have ADD or ADHD, where in the general population approximately 3-5% of children have ADD/ADHD?

Now that you have that tidbit of information, here is some information for you all about Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD)!

Attention Deficit Disorder/ Attention Deficit Hyperactivity Disorder

What is it: A neurobehavioural disorder that makes it more difficult for children to control their behaviours and be able to pay attention. 

Causes: ADD and ADHD are caused by a decreased amount of special chemicals called neurotransmitters in the brain, specifically dopamine. Dopamine plays a role in things like movement, memory, behaviour and cognition, attention, mood and learning. Genetics are also thought to be a culprit in the cause of ADD/ADHD, as approximately 40% of children diagnosed with the condition have relatives with the same disorder. 

Signs and Symptoms: There are three main symptoms of ADD/ADHD:  

a) Focusing difficulties - children have a hard time focusing/staying focused on a task or activity they are trying to do

b) Hyperactive - when a child has an excessive amount of energy 

c) Impulsive - this is when children act before they consider what the consequences of their actions might be 

Other signs and symptoms that can arise from a diagnosis of ADD or ADHD are sleep problems (insomina), excessive amounts of daydreaming, decreased ability to perform in school due to inability to concentrate, inability to recognize other people's needs and difficulty regulating emotions. About 50% of children with ADD/ADHD will carry these complications with them into adulthood. 

When does it usually start: Usually the age of onset for ADD/ADHD is around the age of 7 years old. Diagnosing a child with ADD/ADHD can sometimes prove to be difficult as many children are often very active, day dreamers etc. However, it becomes apparent that a child does have a diagnosis of ADD/ADHD when two areas in their lives are seriously affected (school, home life, social life, etc). Boys are 3 times more likely to be diagnosed, but girls symptoms are typically just as severe as boys. 

Treatments/Interventions: Treatment depends on each and every individual, and is modified to meet the needs of the child. Typical treatments include medications, psychoeducation (educating the child/family on their condition), social skills training(helps kids learn to relate to one another), individualized psychotherapy and special supervision in school. Sometimes it helps for parents to get some education on ADD/ADHD or learn how to adapt their parenting skills to best support their child. 

What is the difference between ADD and ADHD: The biggest difference between ADD and ADHD is that children with ADHD have the added symptom of being hyperactive or have excessive restlessness or energy.

I hope you all learned something new! 



Monday, September 19, 2016

Christina's Story

Hello friends! I am so pleased and honoured to be sharing another guest blog, from my dear friend Christina. Christina was the VERY first person I ever reached out to in regards to my NF, and she helped shape the way that I viewed my condition. So please take a moment and read her blog post :) 

My whole life growing up I never once questioned what those “weird bumps” all over my grandmother, dad, several aunts and one uncle were; I had accepted them for who they were and not for what they looked like.  I was told at a young age that the brown spots all over my body, including the large one on my right bicep, were called café-au-lait spots and that they were something like birthmarks but weren’t birthmarks.  End of discussion. I kind of figured that since my grandmother and my dad had these “weird bumps” that I could also.  In my mind I made the decision that should I get these “weird bumps” that I would cover them, especially if they were on my arms and legs.  I planned on wearing long sleeves no matter that the temperature outside was and that I would never wear shorts again.  I was ashamed of them.  I was made fun of because of what my dad looked like.  I had been asked if a toad had peed on him.  I was avoided at times because peers thought he was contagious and that if I touched them they would get these “weird bumps” too.

Let’s jump to my junior year in high school; I was reading in my biology book and came across the term “café-au-lait spots” and FINALLY the name Neurofibromatosis.  I was excited!  I had self-diagnosed myself, but even then I did not really know, or understand, the full extent of the nature of this disorder.  All I had was a name, nothing else; no knowledge of what exactly could happen with having Neurofibromatosis (NF). 

A few years later I had decided to enlist in the United States Air Force.  When meeting with my recruiter I had openly told him I had Neurofibromatosis and he did not say anything about it being a disqualification from entering the military. I was at MEPS (Military Entrance Processing Station) at St. Louis when my dream of serving my country was shattered.  After having my physical done I waited in a lobby to be called to tell me where to go next.  It seemed like eternity while I waited for my name to be called and jumped excitedly when it was. The person behind the desk pushed a paper toward me and told me to sign it and that I was disqualified from the military.  My excitement quickly changed into utter disappointment with tears forming in my eyes as I asked “Why?”  I was told I would have to talk to the Surgeon General to find out why.  Questioning the Surgeon General about my disqualification he bluntly told me “You have Neurofibromatosis.”  I told him my recruiter knew about it all along, and still I was told I could not join ANY branch of the US military with NF.  I tried reasoning that my brother was in the Air Force.  I was told that I could ask for a waiver and it might work.  I had to get a letter from my brother saying that he had NF and that he didn’t have any issues from it. (I did not know that he didn’t have NF or that each child had a 50% chance of inheriting NF from their parent if the parent had it.  I assumed that since I had it so did he.) I was never able to get in contact with him since I didn’t have a phone or a current address for him.  I then decided that I was going to prove to the Surgeon General that I didn’t have any issues from Neurofibromatosis so I went to the library to research it.  In an encyclopedia I read that NF caused “deafness, blindness and mental retardation and in some severe cases death.”   I thought I had had my waiver because I didn’t have any of those issues, and I certainly wasn’t dead.  Sill I didn’t get my waiver and I gave up on my dream of serving my country.

Throughout the years since my military disqualification I decided to live life the best I could, my having Neurofibromatosis was mentally put on the back burner and not much more thought was given to it.  I don’t exactly recall when the dumbbell plexiform appeared on my right wrist and I actually attributed to its appearance to a couple of wrist injuries that I had had when I was around 16.  I didn’t even know that it was a tumor or that its growth was related to Neurofibromatosis.  I wasn’t too worried when café-au-spots appeared on my oldest and youngest two children and I was told that they have NF since I wasn’t effected by my NF.  Little by little and bit by bit over the next few years I gained more information on issues related to NF, not because I was researching it, but because one of my children would develop a medical issue and I would be told it was because of their NF.  I was shocked when I was told that my oldest son’s scoliosis was due to his NF because I had never been told the two could be related before and again I was shocked when I was told that my youngest son’s seizures were also related to his NF. Still I kind of just lived life as it was and not much more thought was given to our Neurofibromatosis.  Again, I had just accepted these things as they were.

 In October of 2008 I decided to get with the times and get a Facebook page and get in contact with my niece so that we could get all the cousins together for a picture with their grandmother. After finding her and looking up people I went to school with, I wanted to see if I could find other people with NF.  I had done a research paper for my biology class in college and was taken aback with what I had found out about NF so I wanted to find others with it too.  I had found so many people with NF that I had to start a second Facebook page for people with NF, and now I have over 800 friends on that page. I even reached out to some people on the “Can Mia get 1,000,000 fans to raise awareness of Neurofibromatosis” and sending them a friend request (this is how I met Courtney).  In 2012 I wanted to be able to meet others with NF so I decided to ask who would like to meet at the St. Louis Zoo for a get together.  With the help of Michael Forbes and Rebecca Damschroder we were able to get around 40 people to attend the event.

 I was hooked on finding out all about NF and I started diving into finding out all about it.  I have become an advocate for NF in the Central Missouri area and with some persistence was able to get Neurofibromatosis Midwest to include the Central Missouri area in their covered area and am the chairperson for the chapter in my area.  I have given talks to my local high school’s genetics and advanced honors biology classes on Neurofibromatosis.  I helped to start a support that meets monthly and now we are in the process of planning a Great Steps for NF walk hopefully the first Saturday in October.  Looking to the future I am in the early stages of doing a fund raiser with silicone bracelets with the slogan “Show-Me your NF and I’ll show you mine” (Missouri is the Show-Me state).  I can truly say that the slogan “I have NF, but NF doesn’t have me” is true in life.  I don’t let my having NF control me or my family.  On a positive note, my youngest son is being granted a wish through Make-A-Wish because of his NF and we will be headed to Washington D.C. soon, but that’s another story for a later time.

- Christina 

Sunday, September 4, 2016

Need for Change

I bet you, that maybe 10 of the 36 physicians that I have seen in my lifetime have heard about Neurofibromatosis. Now that is just hearing about it, I bet only about half of those doctors were actually well educated on NF. For a condition that has a prevalence rate of 1 in 3000 people (for NF-1), I really don't think those numbers are cool... who agrees with me?!

Probably one of my most distinct memories, was when I had to see a specialist regarding the masses that were found in my pelvis. Physicians were unsure if they were tumours, or if they were cysts. I got sent to a specialist in Red Deer, and I had high hopes for the appointment! I remember sitting down in his office with my Mom, and when he asked me if I had any "significant medical history" I told him that I had Neurofibromatosis. He looked at me like I had a second head. 

"What's that?" he asked me. "I've never heard of it before."

I felt myself clench up. I felt the heat rushing to my face. How was this fair to me? How come I had to miss school again to see a doctor who didn't even know what I had?! I was furious. All I kept thinking was "Could you not have maybe looked at my chart before I came in so you maybe had an idea of what you were dealing with?" 

With great reluctance, I began to tell him all about Neurofibromatosis and it's manifestations in the body. I was 16 at the time. I was educating the doctor. I was supposed to be the patient. 

Believe me, this wasn't the last time that this happened. I had several after this doctor inquire about my condition and each time I was met with a doctors puzzled face, I felt just a little more defeated. It wasn't fair that I wasn't getting adequate medical care, and it wasn't fair that I had to constantly suggest what my plan of care should be. 

So I could keep ranting here, or I could suggest some things that the medical community could do to improve on this rather big issue! So here we go:

1. Improve Education on Neurofibromatosis 

So I think it is safe to say, since I went through nursing school, that there is an utter lack of NF education for medical professionals. Take a look below at this picture. This is a passage taken from one of my textbooks (the only textbook might I add that says ANYTHING about NF). 

Three sentences.... THREE SENTENCES? That's it? It's no wonder there is a lack of understanding on what NF can do when there are THREE sentences on it in a medical textbook! And look at how much information is missing! Where does it talk about the types of NF? Or how about the issues people face with learning disabilities? How about the fact that there is no cure? Or that tumour growth can be exacerbated by changes in hormones?  

Looking at this, I don't blame people for not knowing about what NF is! How should you know what it is when that's all they teach you?! I was actually chatting with a 4th year medical student the other day at work and asked her if she had any education on it in school. She told me that she maybe had a lecture or two on it, but definitely not more than 2 hours of education. I was able to teach her a few things about NF and its trademark signs/symptoms. so now at least there is one more educated doctor out there! Horray for awareness! 

2. Improve Funding for NF Research 

Here's a fun little statistic for you. In 2016, Neurofibromatosis received 0.25% of the funding for research that breast cancer did! Last year, breast cancer received well over 6 billion dollars for research purposes, while NF received a little over 15 million. If you calculate that out, breast cancer got 40000% MORE funding than NF did.... 40000%!!!!!

I mean 15 million is great! When I initially started doing my research on how much money NF would receive for research, I was only expecting to see a few million dollars! But when you compare the numbers side by side, it seems like nothing in comparison! 

I'm not saying that breast cancer shouldn't have all that money invested in research, because it certainly should! But medical breakthroughs will not occur without research, and research cannot be done without money...

Now there are a lot of things that could be done to better the care of people who have Neurofibromatosis, but we can't do it all at once. Baby steps my friends! Comment below on how YOU think the medical system could be changed for the better!

-- Court 

Tuesday, July 19, 2016

Thanks to All of You!

I want to say thank you. Thank you to everyone who has read my blog, thank you to everyone who has sent me words of encouragement, and thank you to those of you who have supported me through some of the hardest years of my life.

Growing up not knowing anyone with Neurofibromatosis was extremely hard. I was the only person living in my family with the condition, which left me feeling incredibly alone. I would never wish my condition on another person, but when I was younger I wished with all my heart that someone close to me would have the condition, just so that I could have someone to talk to.

My parents were always there for me, don't get me wrong. I had one of the strongest support systems out there. My parents were always there to hold my hand, to pick up the pieces when I had a crummy day, and to continuously cheer me on. They were there for test results, procedures, and hospital admissions. But I always wanted something more. I wanted a genuine connection with someone who knew exactly what I was going through.

Lucky enough for me, I live in a time where social media is a prominent feature in most peoples lives. For most people. social media helps you stay in contact with people you may otherwise not talk to, but for me it offered a place of sanctuary. Online, I found dozens of people living with NF. I found people who were going through things that I had been through. They offered words of advice, shared their stories, but most importantly, shared hope. Although much of the advice that was given to me from strangers on the internet was almost identical to the advice that my family gave me, something was different about it. It came from a direct source.

After connecting with so many people through avenues such as Facebook, I decided that I wanted to provide a place where people can share stories, ask questions and inspire others to be the best version of themselves. After much pondering, I decided that I wanted to start a blog, and tada.... Courtney's Column was born! I never once thought that my posts would receive over 20,000 views, but as of last week that goal was met! My posts (and my guest writers posts) have been viewed all over the world, including places such as Japan, Spain, Chile and Australia.

So again, I want to say thank you. Thank you to my adopted NF family. Thank you to the incredible support system I have developed online, and in person. Thank you to everyone who has accepted me for who I truly am. Thank you for not only giving me a voice, but for also listening to it. Without the amazing support network I have developed over the years I really don't know where I would be today.

I challenge each and everyone of you today to speak up, use your voice. Share what you are passionate about! Believe me, you just might be surprised by the results :)

Monday, June 6, 2016

Let it Go

I had the incredible opportunity to have my story featured in !nsp!re Magazine, which is published by BCNF and edited by the incredible Desiree Sher. Feel free to click the link below to go directly to the magazine itself (and see several other super cool stories), or you can read my entry below! 

Let it Go

The last thing anyone wants to be is different.

Conformity and social norms are celebrated, and it seems many people alter themselves to seek validation and acceptance from their peers. It breaks my heart that people who try nothing harder than to be themselves are segregated, and labeled as "different".

I always used to be afraid of that... to be the "odd man out". I kept a secret, a might big one that is, for 18 years of my life because of my immense fear of people finding out my life story. The last thing I wanted people to know was how my body grew tumors everywhere, how my bones were deformed, how my hormones didn't work, and how my life had been consumed by severe anorexia and depression. Why was I hiding such an integral part of myself? Because I was afraid people were going to find out I had Neurofibromatosis.

I did everything in my power to keep my life a secret from people.

When I missed school because of a doctors appointment- told my friends that I was out with teh flu! When I went home because my head felt like it was about to explode from the pain- I was going to the dentist! I was able to lead what really was a second life for almost 18 years before I started to lose sight of who I really was. My life was filled with lies and illusions, and I wanted it all to stop.

My name is Courtney Willoughby. I am 22 years old and was diagnosed with Neurofibromatosis when I was three years old. I lived a very normal childhood, and really didn't know I was "different" until I had a plexiform tumor removed from my back when I was 13. That was when my doctors found an inoperable brain tumor that appeared to be taking my hypothalamus and pituitary gland hostage. Subsequently, my diagnoses included scoliosis, hypopituitarism, growth hormone deficiency, chronic daily headaches, an overactive bladder and ribbon rib deformity. Additionally, I had tumors located in my abdomen, pelvis, arms, legs and ear. I was absolutely devastated by these diagnoses. I thought that this meant my life was over. In my mind, I was different, and that terrified me. Who was going to accept me now?

I soon began harbouring all my fears and anxieties regarding my health until those thoughts essentially ate me alive. I was a hermit to my own thoughts. I constantly feared people would find out about my genetic condition, the "thing" that was taking my life over. All I could think about was how unfair my life was. It was unfair that I had to live with this condition. It was unfair that I had seen 36 doctors in only nine years of my life. It was unfair how I had to constantly wake up in pain, and go to bed with the same pain that failed to be soothed by anything. My thoughts took me to some very dark places, places that I never want to revisit.

I spent about three years of my life in that dark place and then one day I was ready to say "No More!" I was tired of being an inauthentic version of myself. I thought it was time to start coming out of my shell.

It was at this point in my life that I had the incredible opportunity to meet Reggie Bibbs. Reggie is the founder pf the Just Ask Foundation, and is a valuable crusader in raising awareness for Neurofibromatosis.

I can remember every detail of our first meeting of the man that would become my hero. Reggie saved me. After meeting Reggie and hearing him speak about overcoming adversity and embracing your uniqueness, I was inspired to make a change. I came home after meeting Reggie, feeling refreshed. It's like someone hit the "restart" button in my brain. I suddenly felt like a different person.

I came clean with family, friends, and loved ones via a Facebook post. It seemed simple to me, and honestly I didn't expect much of a response. I was however, overwhelmed by the number of people responding and commenting on my post, and even sending me private messages with words of encouragement. This is the point in my life where I decided to "Let it Go", as Queen Elsa said in the movie Frozen.

My philosophies on life changed when I realized my priority in life didn't have to be my Neurofibromatosis. I realized that I didn't have to be my diagnosis. Sure, I was a person living with a chronic condition, but that didn't take away any of my worth in this world. I realized people were going to think whatever they wanted about me, and I could try my best to "fit in". Ultimately I realized that I wanted to choose my individuality over conformity.

Let me break something to you gently. You might already know this.

There are seven billion people living in this world. so there is a pretty good chance that a few of those people are going to dislike you. It's as simple as that. So why would you change yourself for those few people, when you could be living a life where you love yourself?!

You are the only you that you get in this world. and you need to love yourself regardless of your flaws and imperfections. You wake up as yourself, and go to bed the same person each day- you can't fight biology. I tried for so long to be a person that I thought everyone else wanted me to be, and ended up completely miserable, isolated and alone. It wasn't until I accepted that I was a worthy individual regardless of my imperfections, that I really began to accept myself for who I was- NF diagnosis and all.

Life is short, I encourage you to be brave. Be courageous. Fight for what you believe in and find your passion in life. We live in a world full of stress and negativity, but no matter how much you worry about the future you cannot change the outcome. Embrace the here and now, and be the most authentic version of yourself. Trust me, you might just like what you find when you leave your insecurities behind.

- Court

Sunday, May 1, 2016

Neurofibromatosis Awareness Facts!

May has to be one of my favourite months, it's NF Awareness Month!!! 

I know you all are probably in the same boat that I am... constantly needing to educate people (including health care professionals) on what NF actually is, so here are 31 facts that you all can share to help raise awareness! Let's use this month to share information about our condition, and make NF as well known as asthma, diabetes and high blood pressure!

1. Neurofibromatosis is one of the most common genetic disorders caused by a mutation of a single gene.... more than 2 million people worldwide are affected by this condition!

2. Neurofibromatosis is more common than Cystic Fibrosis, Huntington's, and Muscular Dystrophy... COMBINED!

3. There are 3 different classifications of Neurofibromatosis: Neurofibromatosis Type 1, Neurofibromatosis Type 2 and Schwannomatosis, all of which are caused by mutations of different genes

4. Neurofibromatosis is an autosomal dominant disorder, meaning people who have the condition have a 50% chance of passing it onto their children. However, more than 50% of NF cases are due to "spontaneous mutation" of chromosome 17

5. Neurofibromatosis Type 1 has a prevalence rate of 1 in 3,000 people and makes up 90% of all NF cases

6. Neurofibromatosis Type 2 has a prevalence rate of 1 in 25,000 people

7. Schwannomatosis is the most "rare" of the Neurofibromatoses, as it only occurs in 1 in 40,000 people

8. Neurofibromatosis Type 1 is caused by a mutation of chromosome 17, which is responsible for making a protein called "neurofibromin". Neurofibromin plays a role in tumor growth inhibition, which is why people with NF have tumors grow all throughout their bodies

9. It's hard to predict how mild or how severe any NF case will be. Approximately 60% of people will have very mild symptoms (ex: cafe-au-lait spots), while the remaining 40% will have moderate to severe symptoms/complications that may be corrected by surgery/medication or that may be persistent and life long (ex: scoliosis)

10. Neurofibromatosis is a systemic condition, meaning that it impacts all systems of the body.

11. Cafe-au-lait spots are the most common sign of Neurofibromatosis. Cafe-au-lait spots are caused by an excessive amount of melanin in the skin. Melanin is a protein that gives skin its pigment. One of the diagnostic criteria for Neurofibromatosis is to have six or more cafe-au-lait spots that are at least 0.25 inches in diameter. It is rare for tumors to grow where there are cafe-au-lait spots (BONUS FACT: 10% of people in the general population have cafe-au-lait spots)

12. The one distinguishing diagnostic criteria that separates NF-2 from the other Neurofibromatoses is the development of tumors on the 8th cranial nerve in both ears (this nerve is important for hearing). In some cases these tumors can cause loss of hearing, and in some cases deafness. These tumors are almost always seen in NF-2 ONLY

13. Lisch nodules are the most common ocular complication seen in Neurofibromatosis, as approximately 95% of people have these by the age of 6. Lisch nodules are hyperpigmented patches in the eye that do not impede vision. Sometimes they can be seen with the naked eye

14. It is estimated that 15-40% of people with NF have optic nerve gliomas. Most often, these tumors develop in childhood and are very unlikely to develop in adulthood. Typically these tumors are very slow growing and have very low malignancy rates. They can however cause vision loss in some people

15. More than 60% of people living with Neurofibromatosis also have a learning disability. Children with NF are 5 times more likely to suffer from ADD and ADHD

16. People with NF have a slightly higher chance of developing cancer in their lifetime than those in the general population. Approximately 25% of people will have cancer in their lifetimes, and 30% of people with NF will develop cancer

17. Treatments for NF tumors include surgery, chemotherapy, radiation and medications to control various other symptoms/complications. Sometimes chemo and radiation are used for tumors that are not cancerous... in these cases these tumors may not be operable or surgery may not be an option! As of right now there is no cure for NF, but researchers are working hard to find a cure!

18. Skeletal abnormalities include scoliosis/kyphosis, tibial dysplasia, osteoperosis, short stature, macrocephaly (large head) and chest wall deformities are frequently seen in people with Neurofibromatosis

19. Neurofibromatosis occurs equally in all races and all genders

20. No two cases of Neurofibromatosis are alike... every person is going to be impacted differently

** Both Reggie and I have Neurofibromatosis. You can see here how our symptoms are very different!**

21. People who have NF-1 tend to show symptoms by the time they are 10 years old

22. Less than 1% of people with NF-1 will have the following complications: early or late onset puberty, being too tall/too short, excessively itchy skin, hormonal imbalances or having brain tumors other than optic nerve gliomas

23. People with NF-2 tend to show symptoms by the time they are in their late teens to early 20's

24. People with Schwannomatosis can be symptom free until they are 40 years of age

25. The most common problem that people with Schwannomatosis face are issues with chronic pain. This is usually the first symptom that appears before a person is diagnosed.

26. Schwannomatosis does not share the same genetic patterns than NF-1 and NF-2 do. It tends to skip generations... so your grandma could have it. then your mom may not have it, and then you could have it.

27. It is not entirely known if there are things that trigger tumor growth. It seems that there are periods of tumor growth during puberty and pregnancy.

28. 1 in 3 people with Neurofibromatosis have a plexiform neurofibroma

29. NF is NOT the Elephant Man Disease. It is actually hypothesized that the "Elephant Man" had a disorder called Proteus Syndrome, which causes there to be an overgrowth of tissues

30. NF can also be called von Recklinghausen Disease

31. Neurofibromatosis is not contagious. People with this condition are no different than those from the general population. Help me raise awareness by sharing these facts, and commenting below with your own NF Awareness Facts... this is just a very small amount of information on NF!!!

- Court :)


Monday, April 11, 2016

I Wouldn't Change It

You know, people ask me all the time if I could change my Neurofibromatosis diagnosis, would I? Up until a few years ago, I would have definitely said yes. I would have done almost anything to rid myself of this condition. I would have gone to almost any length to rid myself of these tumors, and the chronic pain I subsequently live with. I wanted to change my past. Deny the fact that I struggled with mental illness for five years. All I wanted, was to change me.

Now. I look back at all the thing I wanted to change and ask myself "Why". Why would I want to change those things? Why would I change something that makes me who I am. Changing my past, my condition, and my story means I am changing who I am at my very core. Sure, there are days where I curse my Neurofibromatosis. There are days I am in enough pain that I would do almost anything to make it stop. But I wouldn't change it.

For the longest time, I sought control. I knew that this condition rendered me helpless on so many levels. New tumors show up all the time, new aches and pains grace me with their presence now and then. Weird symptoms pop up out of the blue, most often at extremely inconvenient times in my life... But I've learned to adapt, I am coping. Changing my condition would mean I am changing who I am at my very core. My NF is etched into me as much as my eye colour is.

My NF has taught me significant life lessons, some of which I don't think I would have learned at this point in my life if I didn't have this condition. I've learned that life isn't fair, but we are never given more than we can handle. I've learned that facing adversity only makes you stronger. I've learned that I am worthy of love and belonging. I have learned about the concepts of grace, humility, and compassion. I have learned that courage is a great concept, but it requires us to rid ourselves of the fears of other peoples judgment.

When people hear my story, I am often met with this look. Some people get really quiet, others ask a lot of questions. But in all reality, my story really isn't all that different than yours. We all have faced tragedy and loss. We have all faced uncertainty. We have all had moments of insecurity in life. We. Are. Human.

Sure, I have a brain tumor. To some people that sounds scary, but to me that's just part of life. Glen (my brain tumor) graced me with his presence when I was 13, and I have had a lot of time to cope with the fact that I have something growing in my brain. I can't change that, but I can accept that.

I have said this before, and I am going to say it again.... I do not have to live my life as a diagnosis. I am not my NF, and I never have to be. I am going to live a successful live despite my diagnosis, and I challenge each and every one of you to live YOUR lives to the fullest, no matter what your past may hold. I will always have NF, but learning to accept me is a whole lot easier than denying the unchangeable.


Monday, March 28, 2016

Casey's Story - When I Met Courtney

Hey everyone! I hope you all had wonderful, relaxing and joy filled Easter's! Please take a moment to read this wonderful blog post written by my beautiful friend Casey.... you won't be disappointed!


Hello everyone! My name is Casey. I am proud to say that Courtney is one of my best friends. I was more than thrilled when she asked me to write for all of you. It is an honor. Thank you so much for the opportunity!

It’s probably easiest for me to start from the beginning, back to my second year of nursing when I met this loveable ball of joy. I often ask her, “Do you remember the first thing I ever said to you?” I commented on her new hairdo, as we sat outside the classroom that will forever be a sacred place to me. That’s when it all started. It might seem insignificant to some, but for me, this would always be the day that brought Courtney into my life.

In the beginning, I had little knowledge about Courtney’s condition and what it meant for her. I hoped she would be accepting of that. But I just kept thinking I was so lucky to have her as a friend. I also knew something was different about meeting her. It was unlike all the other awkward first encounters I had in nursing. Very early on, I knew our bond was special.

I want you all to stop and think for a moment. Can you recall a time your best friend in elementary school told you a secret and you weren’t allowed to tell anyone else? Parents thought it was so cute; all they could do was smile and laugh. But what they don’t know (and what I will probably never admit to them) is, they were pretty darn smart because they also realized something we didn’t as small children. They realized the bond of true friendship.

I remember the first time Courtney ever talked with me about Neurofibromatosis. I was so nervous, because I wanted to be caring and supportive, yet I knew so little about the condition. It was after a night of movies, and Court’s favorite, Frozen. We went upstairs to my room, and that’s when it just spilled out of me, like word vomit, “So, what is NF?” She was so good about explaining everything and much to my dismay; she was the one consoling me, as I was sure she had done with so many others who asked her the same question. She knew exactly what to say.

We ended up staying awake until 5 o’clock that morning. I just listened to her, as she shared every part of her NF journey with me. I was astonished by her strength. How she spoke with such kindness and grace about a topic that brought her face-to-face with situations no one her age should have to deal with. She may have NF, but she is not NF. And although she has experienced some extremely low points in her life, she has fought like a warrior to rise out of her darkness and become something beautiful. Yes, of course, I think my best friend is beautiful on the outside, but she also has a beautiful heart. A heart that is selfless, brave and passionate. I have never seen anything like it. This night was a night of exceptional revelations for me. I then flashed back to the day I met her and it became so clear! I realized in that moment just as my parents would have (in all their wisdom) all those years ago, that this was a true friendship.

From then on we were inseparable, us and our other amigo, Carlene. You know, I’ve never really been much for fate, but how awesome is it that all three of our names start with the same letter! It totally does not get any better than that J

Back to the story! The more Courtney shared with me about NF; the more I wanted to be involved. I remember another time; she had an MRI appointment booked. I know it sounds crazy, but when she texted asking for a ride I was so excited! I finally would have gotten to be a part of her journey and experience it alongside her. Rather than her telling another story, I would be there, and I would be part of it. Turns out, her mom was able to take her to the hospital and we met up afterwards. I was a little disappointed, but I recognized something. I am in a special position as one of her best friends, because although I was not there when she experienced her most significant struggles like Carlene was (who has been Courtney’s friend for 15 years), I know her now and I have seen just how beautifully she has overcome them.

Some of my best days this year were spent with Courtney, her mom Tracey, and Carlene at the inaugural Manitoba Neurofibromatosis (MBNF) Empowerment Symposium in Winnipeg. The event happened in October 2015, where as most of you know, Courtney was a keynote speaker!

There was much anticipation leading up to the event’s arrival, as Carlene and I surprised Courtney for her 21st birthday months earlier! We created an elaborate scavenger hunt and drove her all over Red Deer to find several clues. Where at the end of the hunt, she discovered we would be joining her. That was a pretty special day, but nothing topped the symposium. I was finally going to be part of her journey!

Courtney read us rough drafts of her speech, which were all amazing by the way. But her final copy was a surprise for us, as Carlene and myself both decided we wanted to hear it for the first time at the symposium, just as those in attendance would. I often thought about how great her speech would be, and the expectations I had were exceeded on so many levels! I can’t even begin to express to you how proud I felt, sitting in that front row, while she so confidently shared her story. And I was just so excited for her! She finally was able to accomplish what she always told me she wanted to: empowering others affected by NF and raising awareness of what it is like to live with this condition. After her speech was finished, I sat beside her in awe, as there was a line-up of people wanting to talk with her and say thank you for sharing her experiences. I tried my best to hide it, but I was crying. Tears of joy. Even while writing this post, I am tearing up! She touched so many people, again, with that heart of gold, I tell you. Myself included. Her courage and grace is simply astonishing. I tell her to this day how much of a hero she is to me, and as the humble individual she is, she always says, “no way.” But that’s what she is to me. She’s my best friend and my hero. There are not many people who can say they have accomplished what she has at her age.

But what I’ve learned from Courtney is, you don’t have to be famous and well known to be a hero. I am a hero every day that I put my scrubs on and go to work. That person who pulls their car to the side of the road to ensure the little old lady walking across the street, does so safely, is a hero. The person who stands up for themselves and what they believe in, against all odds is a hero. We are all heroes in our own way and we should be proud of that. Heroes also show humility. Courtney wanted to share her story, not to receive any form of recognition but to simply let others know, she has struggled as they have, she has felt pain and darkness, and she has risen. Risen above and become something beautiful. And you can too. An illness or any kind of suffering is part of who we are, but it is not what we are! We cannot choose but happens to us, but we can choose how we respond. It does take time, as it did with Courtney, but with bravery, self-acceptance and the support and love of others, we can accomplish more than we would ever know.  

I leave you with this. If you ever are so lucky as to find true friendship, as I have with Courtney, hang on to it so tightly, because I promise you, it will be the best thing you ever do!

- Casey

Monday, March 14, 2016

Changing Labels

If you've been following my blog, you'll know that I am adamant about refraining from labeling people. I've been labeled in my past, with words such as "depressed", "anorexic", and "attention seeker". Those words, those labels were unjustified. Cruel assumptions that people made about me before even knowing who I am or learning about where I've come from.

I think one of the most significant encounters I've had with labels comes from one of my clinical rotations in nursing school. I remember clear as day going to get my patient research and looking at this patients chart. My jaw hit the floor. This individual had 12-14 medical conditions, was on 36 different medications and had a chart thicker than most of my textbooks. I gulped my anxiety down and sifted through this chart, hoping and praying that this wouldn't be the patient that would make me drop out of nursing school.

The next day during report, I listed off my patients to the other staff members and my peers and as I said this patients name, I head a few of the nurses laugh. I overheard their conversation and one of the nurses said:

"Wow. That poor student. That patient is so demented that they doesn't know up from down."

I was terrified. And I had this terrible image of someone lying in a half comatose state in bed, moaning. I built up all of these images in my head of what I was going to deal with and for a moment I was angry at my instructor for sticking me with this patient. All I kept thinking to myself was:

"What am I going to learn?!"

I swallowed my fears and walked into the patients room to do my morning assessment. They were sound asleep in bed, but it didn't take much to wake them up. When the patient opened their eyes I introduced myself and asked 3 key questions:

"What's you name? Where are you? What day/time is it?"

The patient looked at me, confused as they stated their name. I asked  if they knew where they were, and it took them a minute to figure it out. but after some time they accurately stated where they were. However, the patient had absolutely no idea what day it was, or even the year. I groaned as I took their vitals, and trudged out of the room to organize the incredible number of medications my patient needed with breakfast.

The day progressed, and I began to see another side of my patient that the nurses failed to mention. They were funny, quick witted and much more "with it" than I anticipated. At one point in time I had another one of my peers in the room to help me get the patient into their chair for lunch, and as I put the belt around their waist to help them stand up the patient looked at me with this fire in their eye as they said:

"You dirty little girl, trying to make me move and stuff!"

I laughed and realized that this patient was much more than a diagnosis of dementia. Sure they were confused about what time it was or what day it was, but to be fair half of the time I don't even know what day it is!

I stayed with this patient for the entire week, and with each passing day I saw their cognitive status improve. I listened to their stories about their childhood, learned about their children, their spouse who passed away years ago. Granted I don't know if these stories were true or figments of the patients imagination but I shook my head and scolded myself for judging this patient before even getting to know them.

I've been told by my instructors that there is going to be one patient in your career who is going to change the way you look at nursing. I firmly believe that this patient was the one for me. They taught me that patients are so much more than their admitting diagnosis, they are so much more than their file number and their history. Patients have a story, and if you take the time to listen or get to know them, you might just be surprised with what you see! I didn't see this patient as "demented", I saw this patient as someone who just needed a little extra attention, someone who needed to be heard.

When we label people, we cease to see their potential, all we see is the label we placed on them. We neglect to see their qualities, the things that make that person who they are. Labels negate success. Let me ask you, why do we label people? Is it to make ourselves feel better? Is it to hurt others, to segregate? Do we label people subconsciously, or is it a conscious action? Whatever the reason is, stand up with me and stop this growing epidemic. Follow the wise words of Gandhi and "Be the change you wish to see in the world"

- Court

Monday, February 15, 2016

Carlene's Story - True Friendship Never Dies

Hey everyone! This week I decided I wanted to take a different take on a guest writer, so I asked my best friend Carlene to write a post for me! We've been through a lot together, and I'm touched by the beautiful post she wrote! Show Carlene your support and like, comment, and share this post! :) 

About 16 years ago, I was in Grade 1. As many people know, this can be a challenging transition for many children as they begin school for the first time. In my class, our teacher had something she called, “Carpet Time.” This was where she would read from a book for the entire class to enjoy, and luckily for me, this is where Courtney and I met. To say we were inseparable would be an understatement! We instantly became friends and did everything together. We would have playdates at one another’s houses, sing and dance in our made up band. We’d go puddle jumping and get soaked from head to toe. We spent lots time at the park and in the winter, we went tobogganing on the huge hill (which no longer looks that big!) at our school. The two of us were friends with many others, but throughout elementary school we vowed to remain best friends.

As we entered middle school, we were both very nervous yet excited to start a new chapter. Grade six had its new perks like getting lockers and meeting new people. The school dances were always a highlight for us, and we always attended them together if neither of us got asked by a boy! It wasn’t until Grade 7 that Courtney started to have numerous doctors’ appointments. I remember her having a large plexiform neurofibroma on her lower back (which I thought was just an abnormal birthmark) that she had removed that year. Coincidentally, I had a mole removed from my back close to the same time so I didn’t think anything was out of the ordinary. It wasn’t until she started missing school for appointments that she had out of town that I started to realize that perhaps there was more going on than I had first thought. She had me tell people that she was sick or had a family emergency on days that she had to miss school, and I never questioned it because that’s what friends do, they cover for one another.

The summer after Grade 8 had ended was one of the scariest times in my life. I started to notice that Courtney had significantly started to decrease the amount of food that she was eating. I noticed that she was becoming very skinny, very fast, and I remember to this day when it dawned on me that Courtney was not eating healthily. I was so scared, and in a way I tried to mask the truth by telling myself excuses like, “She must have eaten a big breakfast and just isn’t that hungry.” I was scared that if I asked her about it or talked to her about it, it would become a reality and I wanted to believe that my friend wasn’t suffering.

It was shortly after Courtney started getting help for her anorexia that she told me what was going on. She told me all about Neurofibromatosis and how it had been affecting her. I distinctly remember her telling me, “I owe you an explanation….,” and on that day I feel like our friendship became even stronger. There was so much raw emotion and honesty that came of that moment, and it was one that I will never forget.

After that, Courtney was straightforward with me about all her appointments and follow-ups. She told me all about her lumbar puncture, and how excruciating the pain was after she woke up from the procedure. I remember going to visit her at the Stollery Children’s Hospital in            Edmonton when she was receiving IV infusions, and I was so happy just to be there and talk to her, even if it was just for a little while. I watched her when she had to inject herself with growth hormone. One time she even let me push the button to inject it. She fake cried when it punctured her skin, which then of course freaked me out and she started cackling away, and said I wasn’t the first person she had scared! What a turkey! She told me all about her MRI appointments, ultrasounds, x-rays, and her Botox injections for her headaches.

I remember Courtney meeting Reggie Bibbs in 2011, and how it changed her life. She decided that she didn’t want to hide who she was anymore. She went to the Mayo Clinic during that summer and when we went back to high school for our Grade 12 year, she started to open up to people about her condition. She became an advocate for finding a cure for NF, and I could see this was something she was very passionate about! Most of our friends stuck by and supported her, and would ask how her appointments went. Courtney even organized 2 fundraisers that were hugely successful in raising funds for the Friedman Lab in B.C., which is actively working on finding the cure for NF.

Courtney has continued to experience medical problems since high school, such as a suspected ruptured ovarian cyst and an increase in blood pressure resulting in having to wear a Holter monitor temporarily (the increased blood pressure ended up being a complication from one of her medications). Ultimately though, throughout this rollercoaster of emotions she has constantly been on for all these years, her contagious smile and positive attitude still manages to shine through and spreads to those around her. She truly is one of my role models in life, and I am so proud of what she has accomplished, and I’m honored to call her my best friend.

By having the passion to help others, the two of us have braved the struggles of nursing school together, and have added another best friend to our twosome. Her name is Casey, and she too has been touched by Courtney’s attitude and efforts for the NF cause. Together, I know the three of us will continue to help each other through the difficult times of life, and we’ll come out smiling because we’ll know that we have each other’s support, no matter what comes our way.

- Carlene 

Monday, February 1, 2016

My Anorexia Journey

I've mentioned it a few times here and there, I've thrown out the words, and I've been vocal about my struggles... but I think it's time I'm "real" about my past history with anorexia. I've debated about posting this blog, as much of the content stems from a very personal place, and there is still an element of shame of this part of my past. However, I feel like sharing this part of my story will not only help me let go of this part of my past, but it might also encourage others to do so as well.

I remember sitting on the floor of my living room one evening when I was 11 years old watching Oprah with my mom, and a very young girl who was maybe 80 pounds and in the thralls of anorexia was being interviewed. I watched, in complete awe.... "How could someone do this to themselves?" I was thinking. I looked over at my Mom and said "Well, this is something you will never have to worry about with me. I promise!!!" I believe I even went and got myself a bowl of ice cream at this point in time, just to prove a point. I loved food, I couldn't imagine that someone would just choose to not eat because they thought they were "fat" or wanted to loose weight. 

Sadly enough, about 4 years later I broke this promise with my Mom, and ended up turning my life upside down. 

Before I go any further, I want to be straight up here. The core of my anorexia was not about weight loss. The cause stemmed from a much deeper place: depression, anxiety, insecurity, the wish for control. For myself specifically, everything about my eating disorder was about control.

I remember sitting on my bed one night when I was about 15, crying. Within the last year and a half I had been diagnosed with a brain tumor, scoliosis and chronic daily headaches. My uncle, whom I was very close to, received a palliative diagnosis. I lost an important friendship and I was about to change schools (as I was headed to high school). I was in the midst of extensive tests trying to figure out why my hormones were so wacky, and I just felt like my life was completely out of my control. I kept a running tally in my head of things that I could control, and it looked something like this: 

My health: NO 
My friends: NO
My family: NO
School: NO
Food: YES

It was almost like a revelation, I DID have control over something. I could control what I put in my body. I could control what I ate, when I ate it, and how I ate it. After this I felt...enlightened! Something in me changed, because I finally felt like I might have some element of control over my life. I went to bed that night feeling like a different person.... feeling like I might be able to get my life back. 

Months later my obsession for control began to spiral out of control. I was no longer controlling my diet in a healthy way, I was becoming dangerously thin, extremely fast. I however, didn't see this. Each time I stepped on that scale and saw the numbers drop I was ecstatic... my exertion of control was WORKING! I felt exhilarated, even when half a pound was lost. This feeling became so intoxicating to me that I began to significantly restrict my eating, just so I could see those numbers drop faster. Watching the numbers fall on the scale distracted me from my Neurofibromatosis. It gave me something else to think about. 

Pretty soon, eating caused me anxiety. I was afraid of food. I became so obsessed that I wouldn't go out in public if I even thought there was a chance I would have to eat. I avoided birthday parties, going to friends houses, and family events. I made excuses all the time for why I wouldn't go out. All I could think about was what people would think when I sat there with an empty plate. I knew people would judge me, ask me questions. I was afraid. People didn't get it, they would tell me to "eat more" or "go get a cheeseburger", but I just couldn't. The thought of giving up the one thing I could control frightened me so much. 

I remember going to a friends house one night, and someone I knew came up to me and asked "Wow, are your parents feeding you these days?" I instantly felt ashamed, I knew people were talking, I knew people were calling me names such as "anorexic" and it hurt. All I could think about was how nobody understood, nobody knew the true reason I was doing what I was doing. Nobody lived my life, therefore in my mind, nobody could judge me. People would tell me to "eat a cheeseburger" and their words cut me like a knife. 

The numbers on the scale continued to drop until I reached a dangerous 84 pounds.  At this time, I was actually afraid to drink water because I didn't want to look bloated. I searched Google to see if lip chap had calories, because if it did there was no way I was going to use it. I looked up ways to burn 1 calorie so that piece of gum I just ate wouldn`t make me gain weight. I cut out all foods with added sugar or fat, and soon my diet was limited to chicken and some fruits/vegetables. It felt like anorexia was at the core of my own personal being. The more I exerted control over my eating habits, the more depressed I became, and the more depressed I became the more control I wanted over my life. 

I wouldn't even be able to tell you at what point in time I decided I needed to make a life change. It sure wasn't when I was seeing an eating disorder specialist, because I  flat out lied to her because I thought she didn't understand... how could she when she wasn't battling NF and an eating disorder?! She pressed me to share why I had the eating habits I had, and I just wasn`t ready to give that little secret up quite yet. 

I remember at one point deciding that if I ever wanted to be a true, happy and authentic version of myself I needed to change. I slowly began making changes to my diet, just like I did when I started this whole "journey". I added in a few snacks in the day here and there. I stopped doing jumping jacks in my room, or excessively exercising on our Wii Fit. I would eat meals before going to bed, which used to be a forbidden activity. I started drinking liquids that weren't water. Before I knew it, I started having food cravings again and I slowly allowed myself to enjoy food.

Sometimes I hear people talk about anorexia and other eating disorders in such a negative manner. People think it's a choice, and I'm here to tell you it isn't. Anorexia is no different than having depression, or asthma for that matter. It's a mental illness, and there is absolutely nothing to be ashamed about. All I ask is that if any of you, right now, are facing an eating disorder PLEASE go get help. It was so enlightening when I freed myself from the burden of anorexia, I want nothing more than for others to feel the same way.

Being a perfectionist I used to compare myself to what I thought was the perfect body type, but what I've come to realize is that there isn't one. I still struggle with body image issues, don't get me wrong. I compare myself to others, I wish that my hips were smaller and that my cheekbones weren't as wide. I pick all my pictures apart wishing I looked differently, but these struggles remind me that I am human, and that I am not perfect. I've been given this life to live and I'm darn well going to live it, with my perfectly imperfect body. 

- Court 


** The picture on the left was taken when I was at my lowest weight and most depressed. The one on the right was taken last summer... fully weight restored and healthy :) **

Monday, January 18, 2016

Ways to Feel Happier and Healthier

Happy 2016 everyone! Courtney's Column is back up and ready for one kick ass year! I have so many cool guest writers, topics and stories lined up for this year... I can't wait to share all of these posts with you guys! At the beginning of the month my blog hit 10,000 views... say whhhat?! I'm hoping that by the end of this year, we can double that number and reach 20,000..... that means you all are going to have to share, share, share! Let's get the word out and make 2016 the year for NF awareness!

While at the Manitoba Neurofibromatosis Empowerment Symposium, I had the incredible opportunity to listen to Desiree Sher share her incredibly powerful story. She spoke about overcoming immense tragedy, and how in tragic situations people can choose to do one of two things: sink or swim. Desiree is such an inspiring individual who continuously seeks out positivity in any situation, and I'm so fortunate to have someone so remarkable to look up to.

Desiree is a life coach, author, speaker and choice strategist, who has dedicated her life to helping others face their fears to make important life choices.

Desiree shared a document at the symposium on how to feel happier and healthier by making small changes in your day to day life... here are just a few of the nuggets of information she shared with us:

1. Watch your language: If you're constantly telling yourself "I can't" then you actually may be convincing yourself that this is your truth. Replace all these negative words with positive ones instead. Tell yourself you will do your best or that you will try your hardest instead.

2. Forgive yourself: Constantly beating yourself up about things that have gone wrong won't change them. Tell yourself that you've forgiven yourself for the mistakes you've made and allow yourself to move on.

3. Relax and let go: Sometimes the best way to deal with problems is to relax and let them take their course. Things can often appear to be a bigger deal than they really are, and reminding yourself of this can help you relax and not feel so stressed. Is that parking ticket you got a bummer? Sure it is! Will you still feel bad about it later this week? This month? Learn to let go of the things that don't really matter.

4. Understand that the situation is not forever: Even if you are dealing with the grief of a lost loved one, remember that in time you will feel better. You may always feel sad about a loss, but it will only get easier as the time goes on. Take it day by day and keep in mind that transience of any bad situation.

5. Do something nice for someone else: Want to feel better? Try doing something nice for someone you care about. You'll get to feel good for being nice and you might just get to make someone else's day...bonus!

6. Choose joy: Everyday when you wake up you make the choice whether to be happy or miserable. Make the choice to be happy and you'll live a much more joyful life.

7. Smile: Sometimes all it takes to feel good is to put a smile on your face. Practice putting on a happy face even when you don't feel like smiling... it is an instant mood lifter!

8. Understand that obstacles are there to challenge you: Along your path to success you're going to encounter some roadblocks. Understand that these aren't necessarily there to stop you from doing what you want, just to ensure you truly want it.

9. Believe you deserve good things: If you don't truly believe that you deserve good things in your life you likely aren't going to encounter many. Believe that you are worthy for good fortune to come your way.... and it just might!

10. Don't expect change to be easy: No one ever promised that making a big change in your life would be easy or that overcoming obstacles would be a walk in the park... it's not supposed to be!!!

Now that Desiree's tips to living happier and healthier have left you inspired, I want you to check out Desiree's website:

She also has a book called Refuse to Sink: Truths for Tough Times that you can order through Amazon.... and it just so happens that I have the link here for you. I have this book and absolutely LOVE it!

So I hope you all start to incorporate some of these into your daily routines, leave a comment on which ones you plan to try!!

- Court