Friday, January 13, 2017

Answers Please!

I remember sitting in the backseat of my Mom's car coming home from Edmonton after an appointment with my neurosurgeon when I was 17 years old. I was sobbing. I was exhausted. And I was done with being told that doctors didn't know what was wrong with me.

I was in so much pain, and doctors were stuck. They didn't know what to do with me. At this point in time, I had been having headaches everyday for 3 years and the reason for these headaches was STILL unknown. I had undergone countless MRI's, x-ray's, CT scans, blood draws, medication trials and had tried things like allergy tests, IV infusions, Botox injections, had a spinal tap and tried almost every alternative therapy out there. Nothing worked, and nothing concerning ever showed up on my test results. Medically speaking, aside from my Neurofibromatosis and several other medical conditions, the tests said that I was healthy. I was fine. There. Was. Nothing. Wrong. 

This might sound odd, but bear with me as I explain what I am about to say to you. I was at the point then (and am still there now), where I almost hope something comes up as "not normal" on my tests. Sometimes, I hope they find a spot on one of my MRI's (other than the tumour that is already there), or find an abnormality in my neurological assessment, or find something out of whack in my blood work. I want something to be wrong with me. I want something to be wrong, because I want them to be able to fix it. If they can identify what's wrong, they can create a treatment plan. If they create a treatment plan, they can fix my issues. When they fix my issues, I don't have to deal with chronic pain everyday... I would know what it's like to be normal.

Not knowing what's wrong makes it almost impossible to create a treatment plan. Imagine being blindfolded, spun around 20 times and then be expected to throw a dart right in the middle of a dart board. Sounds pretty tricky right? Well that's what it's like for my doctors trying to come up with a treatment plan for me. They don't know what's wrong, so it's literally like shooting in the dark. 

There is a certain number of times that you can hear "I don't know what's wrong" before you break down. That car ride home when I was 17, was about the last time I thought I could ever hear those words. I was so devastated. I didn't know how to live a normal life anymore. I was angry that doctors kept making me promises to fix my headaches and then fell through every, single, time. I was 17. I spent a large part of my time going back and forth between Edmonton for medical appointments. I felt like I was being brushed off by my doctors, because nobody knew what to with me anymore. Standard, and alternative medicine, was failing me. 

Although I still have no answers today, I have come to peace with what has happened in my past. I still wish every now and then that something would pop up, or that there would be a test that they didn't think of doing then that would give us an explanation for my chronic headaches. I read medical journals in my free time, hoping something catches my eye. But for right now there aren't any answers, and I'll be dammed if I live another second feeling sorry for myself for the stuff that I have been through. The tests, the procedures and the appointments have all shaped me into who I am. Imperfections and all. I don't have any control over what is happening to me in terms of my medical condition, so I'm going to embrace life and love every, single, minute of it. 

- Court

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!