Narcolepsy Diagnosis: Details


happyThis bright-eyed guy was diagnosed with narcolepsy two weeks ago. For those of you who do not know what narcolepsy is, here’s a short explanation…

Essentially, the part of the brain that tells us when to sleep and wake up is a little confused (or a lot confused) in someone with the disorder. That means that while it appears often that someone with narcolepsy is sleeping a lot, they actually rarely, if ever, go through a long sleep cycle including the deep sleep that our bodies need.

The understanding by most people is that REM (rapid-eye-movement) sleep is our deepest, most refreshing kind of sleep, when that actually isn’t the case. There are three phases of non-REM sleep that happen before most of us hit REM, about 90 minutes after drifting off. Those stages are essential for immune system strengthening and repairing our bones and tissues. REM sleep is when we dream, and often when our brain processes information we didn’t during the day.

In short, someone with narcolepsy is generally sleepy all day long. And all night, unless they have insomnia, which is also possible, but I’ll talk about that in another post.

Backstory:

Because this is all new to us, I’m going to document our journey as it goes along. To start, here’s how we got to this point.

In 2013, BF (that’s my boyfriend), was diagnosed with ADHD. He was in a doctoral program at the time, graduated a high level university with a big degree in 3.5 years, and graduated with a high GPA in high school. He didn’t fit all the bill, but he had a hard time paying attention, and staying awake, in lecture. So we went with that.

He tried Adderall, which made him like the hulk. Not physically, though he is strong, but in a “I have too much intense energy and this is bad.” kind of way. Then onto Concerta and Ritalin, which helped. He was on 27mg of Concerta with a booster of 10mg of Ritalin at night after the Concerta ran out its 12 hours. (Though it doesn’t work this long for everyone)

Fast forward – he was still experiencing a fair amount of anxiety, so ended up going off of Wellbutrin, which he had been on for a couple years, and onto Lexapro. That did the trick – no more anxiety.

But then he was still reallllllly tired.

He would come home from work and sleep before eating dinner. Then would eat, and then fall back asleep. Weekends would be sleep-a-thons with lots of napping. And he just always felt crabby and tired. He couldn’t get his work done at a pace he was happy with, and had a hard time staying awake for conversations. We weren’t sure what it was, so we were just riding it out.

Diagnosis:

Then one day he fell asleep driving to work, and almost went in the ditch. That day was the end of guessing. He went in to see his general practitioner, who mentioned that he might have narcolepsy. He’s already been treated for sleep apnea, so we got his CPAP numbers checked at sleep med a week later, which were fine, and got a formal narcolepsy diagnosis. Thanks Mayo Clinic!

He also has cataplexy, which means when he feels a strong emotion, his muscles go weak. We didn’t know what that was at all, and thought it was funny that he would fall down when getting scared. (think fainting goats) But, most people who have cataplexy, if not all, have narcolepsy. So we got a name for that too.

Treatment: 

He was already taking stimulants for what now is likely a void ADHD diagnosis, so that dose was doubled to 54mg of Concerta with a 20mg booster of Ritalin in the evening. His doctor said that most people with narcolepsy take a bunch more than that, and he’s certainly not awake enough now, so we’ll see where we go on this front moving forward.

Because we requested that he be able to sleep well and not just be pretend awake his whole life, his doctor wrote him a voucher for Xyrem. It’s one of the most protected drugs in the world, and is often known as the miracle drug for people with narcolepsy, allowing them to hit non-REM deep sleep stages. We’re two weeks into a discussion with the drug company and insurance right now. It is delivered straight from the company, and has to be signed off on by many people before it is delivered to the patient. Stay tuned for updates.

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I think that’s long enough for now – no one likes overly long posts! I’ll write more soon. If you have any questions or would like any more details, please comment or send me a message!

…because love wins.

 

 

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It hurts, you know.


It hurts.

It hurts to hear that my friends are suffering.
It hurts to hear that radiation is burning their skin.
It hurts to hear that they are throwing up.
It hurts to hear that their parents cannot comfort them.
It hurts to hear that they are miles away from their little sisters for weeks.
It hurts to see their hair fall out.
Again.
It hurts to watch their tired eyes.
It hurts to watch them shake in weakness.
It hurts to see them not even be able to do their homework.
It hurts to not even be able to communicate the pain.
It hurts to be here, when they are there.
It hurts to hold their hands as another child dies.
Again.
It hurts to come home and cry.
It hurts to realize that hardly anyone sees this.
It hurts to realize that those who do know, obviously don’t care enough.
It hurts to miss them at Christmas.
It hurts to walk into their empty rooms.
It hurts to have another piece empty in my heart.

Childhood cancer, it hurts much more than you know.

Childhood cancer, it hurts, please know.

…because love wins.

Standing

You’re a survivor and that is amazing.


Each day older I grow, I understand more the reality of what it means to have survived childhood cancer. As a younger person, it was just a part of my life; I hadn’t seen much else, and I was just too busy playing to understand what it means to still be alive today. But now, I marvel at my leg, my hair, and my beating heart. Let me tell you why.

I stood up one morning. I took a step, and my knee gave out beneath me. I never knew that I’d never walk on that leg again. I ate my vegetables, and I slept full nights, and I was even nice to my friends. I never would have expected cancer. I probably would have just called you a liar if you would have told me that was really going to be my life.

But alas, I couldn’t walk. Soon, I couldn’t eat. I couldn’t get out of bed. Sometimes, I almost couldn’t breathe. To say that it’s a humbling experience to face mortality is just more of an understatement than I can explain. No one can walk to death with you. It’s you, and Jesus, (which is why you need Him), and death. I met myself in ways that I cannot describe.

I remember laying in bed begging God to make the throwing up end. To bring my friends back to life, and to just make it all be okay. And seriously, I don’t even know how I survived. I looked dead almost every day for a full year.

But then I did. I started to take steps on crutches. I made myself get out of bed. Jesus restored my spirit, and I locked eyes with death, and shook my head, “no.” And I just turned and walked away into the rest of life.

I am 23 now, and I feel like I grasp that death didn’t win, but that it sure could have. My fingers move, I can take a deep breath, and I can kiss my nephew. And it’s very much on purpose that I am alive.

The take-away is this. If you haven’t met death yet, listen to what I say. Right now, you’re a survivor, and that is amazing. Don’t take that for granted.

….because love wins.

Dreams do come true.


ImageShe steps out into the light. The backstage had been a flurry of hundreds of people milling around. 

“Decker, check. Check. Check.” 

In 2 hours, thousands of people will enter this auditorium. They’ll come from all around the country. They’ll be in the middle of a fight with their wife. They’ll wish their children could do better in school. They’ll have an autistic sister. They’ll be sad. They’ll be hopeless. They’ll be happy. They’ll understand life, or they won’t. 

She stops out there. Says a prayer.

“Abba, it’s not me. It’s You. You have them. You be with them. You dream loud, speak loud, do what you do. I’m just so human.” 

She looks down at her leg. Who would have thought that this piece of molded plastic would lead to a headset, singing on stage, jumping up and down, crying in front of people? Well, surely not she. She was just this little girl with doggies on her footy pajamas sitting on the porch talking to her Father. 

And a tear falls. One tear, as she looks down at her mom, dad, and sister. Front row, always catching a tear, a hug, a smile, a reminder of who she is. 

Who is she that she could speak through an amputation and chemo drip? 

She’s just a human. Who has lost much. And who has everything, because of Jesus. 

She’s a girl who watches His dreams for her come true every day. 

…because love wins.

In the Hall of Fame.


ImageOften in life, as a leader of many who is also a young adult, I’ve had a lot of lash back. Not that people didn’t like what I was doing, or didn’t want to walk alongside me, but that people often times didn’t (and don’t) believe what I am saying or that why I am acting is genuine.

But the reality is, even in this broken world, some people are still honest. And some people really do still care about you. And they don’t do things half way. They are loyal. They will come in the middle of the night – probably with your favorite tray of cookies.

And they aren’t here to push you under or away.

In the midst of bombings in Boston and explosions in Texas and entire countries unaware of the outside world because of tyrants, be a sparkle. Be a light. Don’t let people who aren’t genuine make you think that you can’t be either.

It’s that kind of thing that gets you in the hall of fame.

…because love wins.

How to be happy.


1.      Enjoy simplicity.

2.      Smile as much as possible.

3.      Live for today.

4.      Love each other.

5.      Watch the sunset.

6.      Read hundreds of books.

7.      Listen to great music.

8.      Love yourself.

9.      Learn from your mistakes.

10.  Understand that no one is perfect.

11.  Eat ice cream in summer.

12.  Build a snow fort.

13.  Act like a kid again.

14.  Take nothing for gratnted.

15.  Live up to your expectations.

…because love wins.

Meet Kaden Tjossem.


This is Kaden.

You may remember him from a previous blog post. He’s a very old 5 years old this year. I met him a little over a year ago, when he was diagnosed with Osteosarcoma, the same cancer I had 14 years ago. The cancer is a rare form of bone cancer and resulted in us both having Rotationplasty.

He allows me the time to be a part of his life and laughs with me while we play. He fights strong, he’s kind, sweet, and loves his parents. He is a pro video gamer, and has learned to walk as well as me at the age of five. He’s the hero of many, and he is the version of honest that makes the world’s hearts smile.

This Thanksgiving, Kaden is still battling his cancer hard. After it came back, he told me that it was, and that he didn’t want to have to be in the hospital. He wanted to play with his puppy and be a 5 year old. I want that for him too.

You can join in prayer and encouragement of Kaden’s journey by following their new page on facebook: Prayers and Love for Kaden. Kids should not have cancer, and while we work on fixing that, let’s also work on making sure these families facing this atrocity never do it alone.

This holiday season, give your joy and prayers, away.

…because love wins.

*Kaden and I met through an organization near and dear to my heart, Brighter Tomorrows. Feel free to find out more about non-profit here.

An ode to my 5 year old battle partner.


I walked down the halls of the children’s hospital carrying a small prosthetic leg just 17 years smaller than mine. Its owner and I have almost everything in common.

We know how to be out of control.
We know pain.
We know joy.
We know what it means to understand how terrible cancer is.
We know why kindness matters.
We know why our stuffed animals are so important.
We know why we tell our moms we love them.

We fight in the same army.

The owner of this leg rode in his wheelchair right next to me. Standing no higher than my hip, he is my battle partner on this open field of colored tiles and IV poles. In a war in which we fight with the best armies the world can offer. Those who arm us with research, chemotherapy, prayer, hope, strength, and willpower to move forward.

In a war in which we fight alongside each other against that cancer within us.

Our battle cry is this, childhood cancer:

Take our legs – we can do it.
Take our hair – we can do it.
Take our sleep – we can do it.
Take our dreams – we can do it.

You can take our everything.

Except our hope.

We will not, ever, at any moment, give up our hope. We guard it within one another, and it simply cannot be reached. Its protection is invincible as we walk hand-in-hand or wheelchair in wheelchair carrying each other’s dreams and wants and favorite video games.

For you fight for my life and I fight for yours, battle partner. You make me smile though tears and I tell you it won’t hurt forever. And there is no force stronger than two deep hearts saying no to that cancer.

But to my battle partner, if there comes a time when we must let go of our hands held so tightly, we will still never be apart. For when in war it doesn’t matter where you are; you are never left behind – and always held in the heart.

…because love wins.