Thursday, March 30, 2017

Question & Answer

Hey friends! Thanks for checking this blog out, and thank you to the amazing people who contributed questions to this months blog! I thought it might be a cool idea to see what YOU all wanted to learn about, so take a look at some of the really great questions that were asked! If anyone has any further questions just comment in the comment section below and I will answer them to the best of my ability :) 


Q: How do you tell your children about Neurofibromatosis?
A: Honestly, I think this one is totally dependent on the child and the family circumstances. You need to base your education on the child's developmental level, and ability to comprehend the information. I remember when I turned 13 my parents gave me a printed handout about Neurofibromatosis and told me to read through it and ask any questions that I had. Considering I didn't really have any issues until later in my teen years, this was a good method for my parents to use! Some research does suggest however that involving children in their diagnosis a young age helps them gain more insight into their condition.

For younger children, talk to them in terms you know they will understand. Don't plan on telling them lots of things the first time you talk to them, you will likely overwhelm them and they will probably ask you lots of questions! Make sure to keep your language simple, and don't include any scary information like "Sometimes these tumours can become cancerous." Instead, use terms like:

“This doctor sees lots of children with brown patches on their skin. Doctors call these a special name: cafe au lait patches...”

** Since I do not have children I had to rely heavily on Google for this answer... I hope it helps you guys out! **

Q: If and when you were to have a baby, what are they chances you would pass NF onto your child? Are there any procedures or medications that can prevent your baby from having NF?
A: Neurofibromatosis is an autosomal dominant condition, meaning that the person who has it has a 50% chance of passing it onto their child regardless if their partner does or does not have the condition. Also, if a parent has a severe case of NF, it does not mean that their child will have a severe case, and vise versa. If a parent has NF-1 they cannot pass on NF-2, and if they have NF-2 they cannot pass on NF-1.

Pregnancy and Neurofibromatosis can have many different manifestations. Some research links tumour growth with fluctuations in hormone levels, so women who have NF and are pregnant frequently see tumour growth in their pregnancies. Some research studies have also shown pregnant women with NF to suffer from more complications such as gestational hypertension, preeclampsia, intrauterine growth restriction and have higher rates of needing a cesarean section. MOST women who are pregnant and have NF tend to have very few complications, but need very close monitoring by a trained obstitrician!

Now, in terms of preventing an offspring from developing NF... there are new methods and techniques to make this happen! In vetro fertilization can be a useful technique for couples who are looking to get pregnant. There is a therapy (I'll be darned if I can find the name of it) where the NF gene can be isolated and thereby not be a "chosen" embryo for women to have implanted! Super cool hey?!



** Just a note: 50% of NF cases are due to a spontaneous mutation of a chromosome, which means a parent does not have to have the condition in order for their child to get it... it occurs because of a random and unfortunate mutation of a gene. Both NF-1 and NF-2 are just as likely to have spontaneous mutations **

Q: Can you have NF-1 and NF-2?
A: YES! You can have have both Neurofibromatosis Type 1 and Neurofibromatosis Type-2. According to Boston Children's Hospital it is very rare to have both types. Neurofibromatosis Type 1 is a mutation of chromosome 17, while Neurofibromatosis Type 2 is a mutation of chromosome 22. Although you can have both types, NF-1 will never turn into Type 2 and vise versa. Also, just because you have internal tumours does not mean that you have NF-2, many people with Type 1 have internal tumours... get genetically tested if your doctor is telling you that you have both!

Q: What is the typical age that people get diagnosed with NF?
A: Typically, Neurofibromatosis Type 1 is diagnosed early in childhood, while Neurofibromatosis Type 2 can manifest in early childhood, adolescence and sometimes early adulthood.

Q: Is NF more common in males or females?
A: NF does not discriminate against, age, race, or gender. An equal number of males and females will have Neurofibromatosis.

Q: Pain is quite common in Neurofibromatosis. Are there common levels of pain or locations of pain? What are some pain management techniques? 
A: There is actually no common location for pain to manifest in Neurofibromatosis. Many different manifestations can cause pain, such a plexiform neurofibroma growth, bone abnormalities such as scoliosis, tumour growth and location of subcutaneous (under the skin tumours). I personally really struggle with chronic headaches and back pain related to my scoliosis. I've had so many struggles with dealing with chronic pain over the years, and seem to be an anomaly as no pain management techniques seem to be effective for me. However, typically things like various different types of medications can work to control pain, alternative therapies such as massage and chiropractic therapy, dietary and lifestyle management can work to control pain. I've learned as a nurse that pain is incredibly subjective, and what might be 10/10 pain for someone might be a 3-4/10 on the pain scale for someone else. I usually like to ask my patients if their pain is tolerable, and if they were at home if they would take something to manage their pain. If you or a loved one is suffering from chronic pain DO NOT GET DISCOURAGED. Try multiple different things, you might just be surprised what works and what doesn't.



Q: What would have been different about you and your life if you didn't have NF? How has it positively influenced your life?
A: Honestly I think everything would be different! My entire life story would be re-written!Most of what I have been through and choices that I have made have been in relation to my NF. If I didn't have NF, I'm not sure I would be in the career I am in, I wouldn't have met some of the amazing people that I have through different NF organizations... I would not be writing this blog! Although there have been many times that I have cursed my condition and have wished that I didn't have to deal with it, ultimately it has made me into me! I'm stronger, more dedicated, more caring and understanding because of some unfortunate circumstances that I have faced at a young age.

Q: Has your NF impacted your dating life at all? When do you tell your significant other?
A: Yup! It sure has! All through high school I felt like I was different, and considering I didn't accept myself for who I was, I didn't understand why someone else would accept me. I had (and still have) many issues with self-confidence, body image and so on, so that made dating almost impossible in my teenage years. I didn't date at all through high school or university, and only entered into my first relationship last year when I was 22.

My circumstance was unique, I was already friends with my boyfriend before we started dating and he actually came to a fundraiser I hosted with my not-for-profit group and listened to me speak! So he already knew about my health and history before we started dating.... But if you're not as lucky as I am, I don't think there is a "time" to tell your significant other about your health... you just have to do it when the time feels right! I mean I probably wouldn't say anything on the first date or the first time you meet, but you'll know when the time is right!If the relationship is meant to be they will be accepting!



Thanks for tuning in guys.... I had so many questions that I will have to post a second Q & A post!

- Court

References: 
http://www.childrenshospital.org/conditions-and-treatments/conditions/neurofibromatosis/symptoms-and-causes
https://rarediseases.org/rare-diseases/neurofibromatosis-2/ 
http://www.aans.org/Patient%20Information/Conditions%20and%20Treatments/Neurofibromatosis.aspx
https://www.nfauk.org/what-is-neurofibromatosis/nf-type-1/what-to-expect-with-nf1/

Monday, March 6, 2017

Choices

Whether you know this or not, we make hundreds, if not thousands of choices in a day. Some of these choices are super simple, like what to have on your toast in the morning, or choosing what route you want to take to work. Some choices in life, aren't so easy. And you know what? That's okay. 

I've made a lot of choices in my life that I am not proud of. I hid who I was from other people for the first 18 years of my life. I lied to my friends when they asked me if I was okay, because I didn't know how to cope outside of myself. I lived my life as if I was only a diagnosis, not a person who was deserving of love, compassion and understanding. I made a choice to hide who I was, for fear of rejection. 

I understand very well why some people make the choices that they do. I get that sometimes hiding your fears, worries, and ambivalence is so much easier than approaching your daemons. It's easier to ignore a problem then to face it head on. That's exactly the mentality I had when I was a teenager. I thought ignoring the fact that I had a lifelong medical condition would make it go away, or somehow lessen the blow. I made the choice to think that I was less of a person for not being able to control the fact that I had a brain tumor that was inoperable. 

Nobody could have made that choice for me, and nobody could have changed my mind. I remember so clearly the conversation my mom and I had coming home from a specialist appointment back when I was in grade nine: 

Mom: "Courtney, why don't you just tell people?! Tell them about who you truly are, what you're going through. People are going to accept you!" 

Courtney: "No, I don't want to. People are going to judge me and treat me differently"

Mom: "Courtney, if they treat you differently do they really deserve your time or your energy?!"

Now, I knew that my Mom was right. I knew that I shouldn't care what others thought, or how I would be treated once people found out. But I still made the choice to hide in the shadows. My Mom couldn't have changed my mind, she wouldn't have been able to persuade me. I had to be ready to make that choice, and I wasn't. You can't force people to make decisions they aren't ready to make. 

I'm sure you all have dealt with this at some point in your lives. Maybe your best friend made a irrational decision to move to some foreign nation, or your significant other decided to drop out of school and join a rock band. Maybe your parents sold all their personal assets and bought some vacation home in a remote town on an island you never heard of. Sure, maybe you don't agree with the choices they made, but they aren't your choices to make. You don't get a say. 

I think what I'm trying to say here, in more or less terms, is that you, your friends, family, and anyone that is important in your life has choices they need to make on a daily basis. You don'y get to control their choices, the only choices you have control over, are yours. Nobody would have been able to stop me when I made the decision almost 10 years ago to keep my Neurofibromatosis a secret, and nobody would have been able to stop me 5 years ago when I decided to come clean. I made those decisions. Me. I made them.  The most important thing to me was, I had people by my side the entire way. I had a community, no, make that a village, of support. 

You can't let other people's choices impact how you live your life. There is nothing that I (or you) can do to change the life path people are going to go down. Sure, you can be there to love and support those people (like my parents did for me), but you won't be able to make an impact on them until they are ready for change. You can't make choices for them, and you need to learn how to be okay with the paths that other people are taking in life. You need to know, that YOUR choices, do NOT impact the choices that others make. That's on them.

- Court 







Thursday, February 2, 2017

Lets Talk About Vulnerability

I can't think of anything more terrifying than being vulnerable. To put it quite frank, vulnerability sucks. Who likes the feeling of being completely, and utterly exposed? Who wants to put their emotional susceptibility on full display for others to rummage through and find weak links... loopholes that could parade around our deepest insecurities.

I get it. I found ways to deflect vulnerability for years. I encased myself in an emotional armour. I taught myself how to divert feelings, emotions, thoughts and behaviours. I used my lack of vulnerability as my own personal weapon, and it was powerful.

I look back now at what I thought was the most ill defining aspect of my life, and I shudder at the 13 year old perspective of myself. My kryptonite was my own insecurity, my fear of not being good enough for myself. It infuriates me that I spent so many years of my life hiding me, and emitting this false sense of identity. I was afraid to be vulnerable with myself because I was afraid that I wouldn't like what I saw. I was afraid that other people wouldn't like who I was.

I grew up wanting people to like me. Don't get me wrong, my parents never once told me that I needed to be well liked by everyone I met. This is just something that I had been hardwired with. I was a Type A Personality People Pleaser. This persona that I embraced as a young child never manifested into much until I started struggling with my Neurofibromatosis diagnosis. I had been this so called "normal" person for the first 13 years of my life, and I felt like the diagnosis was slowly taking away my life, leaching the person who I wanted to be right out of me. I didn't understand how I could be this extraordinary people pleaser with a brain tumour growing rampid in my skull, or tumours that could decide at any point to wreak havoc in my body. Doctors appointments, medications, tests, lab results.... this is who I thought I had to be. I thought I had to be a diagnosis.

Although I thought I used my emotions as a shield, it really turns out that I became everything I never wanted to be. I was my anger. I was my resentment. I was this bitter child who ran from vulnerability, and ended up a miserable ball of goo (pretty picture hey?). I wasn't the happy ray of sunshine that I once was. I wasn't the happy go lucky girl that people had grown to know. I wasn't me anymore. My fear of vulnerability took away my will to be myself.

Eventually, I decided I was sick of it. I was absolutely exhausted running from me. So, slowly, and ever so painfully I began to slowly peel off the emotional armour. Piece by piece. I put my weapon away. I was tired of being seen, and not heard. I wanted me, and all of me to be seen.

You see, I learned something during the beginning stages of my transformation. Vulnerability and pain are very much similar, in that they are both designed to be felt. Vulnerability, I learned, was not all that bad. I remember stumbling across this quote, and it has resonated with me for several years:

"What makes you vulnerable, makes you beautiful" - Brene Brown

I realized, that what I was most afraid of, was what made me beautiful. I was different, but that difference could be used as a catalyst for change. Instead of waking up everyday and putting on my emotional armour, I put on an armour of courage and resiliency. I internally accepted the fact that my inner "Type A Personality People Pleaser" might experience some discomfort during the process of self realization, but that self-growth needed to occur if I wanted to go anywhere in life.

Today, I still struggle with the aspect of vulnerability, but instead of running for the hills when I am confronted with it, I open my arms to the possibilities it may bring. Every time I post a blog, I am vulnerable. Every time I get up in front of a crowd and speak about my life, I am vulnerable. Every time I speak my mind... guess what, I AM VULNERABLE.

Now that I have likely bored you with all this talk about vulnerability and what it means to me, how its changed my life and so on, you might be wondering:

"Courtney, how can I be vulnerable."

The answer my friends, is quite simple. All you have to do it be courageous. Vulnerability follows in the footsteps of courage. I am going to leave you all now with yet another quote by the fabulous Brene Brown, and I hope this resonates with you:

"Most people believe vulnerability is weakness. But really, vulnerability is courage. We must ask ourselves...are we will to show up and be seen?"

-- Court

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!

Court