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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Because ADHD isn’t just jokes.


BrainI know a large number of individuals who have adult ADHD (yes, as adults!). It’s a part of me that I always like to know people fully. So, that has recently opened the door of understanding that this is a widely misunderstood illness.

To just clear it up for everyone who will come in and say ADHD doesn’t exist:
1) No, not everyone who can’t pay attention has ADHD. Not everyone who makes poor choices has ADHD. Not every child is taught how to treat others, and they may not have ADHD. But that doesn’t mean that it doesn’t exist just because you haven’t been around it. So don’t judge the mother in the grocery store with the “naughty” kid.
2) ADHD symptoms can be made worse by a number of things: allergies, chemicals in food and in products, and even by some medication. So if people are particular about things, don’t tell them they are weird. You may not know why they do what they do. Be a bit flexible and help out!
3) Medicine is right for some people, and not right for others. But unless you have been there, you shouldn’t really give that opinion to someone who is there.

What a neuro-typical brain sees in someone with ADHD is often someone who doesn’t think things through before speaking (“What, are they stupid??” No, they’re often brilliant.), someone who can only make jokes and will forget what they were talking about (chronically…not like every once and a while), someone who is just “emotional” often, and someone who is generally everyone’s favorite person at the party.

But what makes me sad is that the people who make jokes, or say that they have ADHD because they stopped paying attention, or exile people because they don’t think just like they do, often don’t actually understand how lonely it is to have the illness.

So that being said, here is something that I have found very insightful as someone who doesn’t have ADHD, but loves people who do. I hope it’s helpful to you too.

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Written by a child with ADHD:

Take My Hand

Take my hand and come with me
I want to teach you about ADHD
I need you to know, I want to explain,
I have a very different brain
Sights sounds and thoughts collide
What to do first? I can’t decide
Please understand I’m not to blame
I just can’t process things the same

Take my hand and walk with me
Let me show you about ADHD
I try to behave, I want to be good
But I sometimes forget to do as I should
Walk with me and wear my shoes
You’ll see its not the way I’d choose
I do know what I’m supposed to do
But my brain is slow getting the message through

Take my hand and talk with me
I want to tell you about ADHD
I rarely think before I talk
I often run when I should walk
It’s hard to get my school work done
My thoughts are outside having fun
I never know just where to start
I think with my feelings and see with my heart

Take my hand and stand by me
I need you to know about ADHD
It’s hard to explain but I want you to know
I can’t help letting my feelings show
Sometimes I’m angry, jealous or sad
I feel overwhelmed, frustrated and mad
I can’t concentrate and I loose all my stuff
I try really hard but it’s never enough

Take my hand and learn with me
We need to know more about ADHD
I worry a lot about getting things wrong
everything I do takes twice as long
everyday is exhausting for me
Looking through the fog of ADHD
I’m often so misunderstood
I would change in a heartbeat if I could

Take my hand and listen to me
I want to share a secret about ADHD
I want you to know there is more to me
I’m not defined by it you see
I’m sensitive, kind and lots of fun
I’m blamed for things I haven’t done
I’m the loyalist friend you’ll ever know
I just need a chance to let it show

Take my hand and look at me
Just forget about the ADHD
I have real feelings just like you
The love in my heart is just as true
I may have a brain that can never rest
But please understand I’m trying my best
I want you to know, I need you to see
I’m more than the label, I am still me!!!!

By Andrea Chesterman-Smith

…because love wins.

The 25th year!


I think I’ve evaluated that life is often a walk to find the line between remaining optimistic and leading, and being jaded and hiding away. When I was 18, I was like most 18-year-olds and thought I knew just about everything that there was to know. And I did know enough to live through college, collect some awesome friends, do some jobs I love and decide on a wonderful boyfriend. But I certainly didn’t know everything.

It’s amazing to watch little kids look up to me and other people my age. I remember the first time that I realized they expected me to know everything for them. It’s amazing – and somewhat terrifying. But it’s a wonderful thing how loving someone and leading someone teaches you to make up your mind and be what you know you should be. That was one of the most memorable catalysts for growth in these 7 years.

So now I’m 25. I learned a lot since age 18. Here are 25 of those things.

  1. Eating healthy isn’t a fad. It decides an awful lot about how you succeed in life.
  2. You don’t know everything. Neither to do I.
  3. Apologies are real, and if they work, that’s awesome. But sometimes they don’t, and that’s likely not your fault.
  4. You never, ever, need to apologize for who you are. What you have done, yes, but who you are – no. Don’t. Ever.
  5. Mental illnesses suck, and are real, but also don’t decide a person’s character.
  6. I love Justin Bieber.
  7. God can take it when you’re angry at Him.
  8. You really aren’t likely going to know what God is always doing, but eventually you’ll make it through.
  9. Dating people is fun. Don’t be afraid to do that. Heatbreak heals. You’ll grow a lot.
  10. You don’t have to be friends with people that you don’t like.
  11. It’s okay for you to say no and have boundaries.
  12. LOVE YOURSELF. Do things that make you happy.
  13. Never stop dancing. Especially when you’re sad.
  14. Your mom and dad are people. They are different than you, and make mistakes. Not everything is their fault.
  15. Changing poopy diapers is a life skill everyone should have.
  16. Roommates found on Craigslist can be character building.
  17. Listen first. And sometimes just listen, if you have no idea what to say. You don’t always need to know what to say.
  18. Don’t walk away in the middle of an argument.
  19. Arguments and conflict are okay – learn how to fight fair and express emotions.
  20. People who look awesome sometimes make big mistakes. And things are redeemable.
  21. Driving with the windows down doesn’t get old.
  22. Smile wide, and often.
  23. Say what you mean. Try to figure out what you mean.
  24. God holds me so so so close. And I am so important.
  25. I am valuable, and should be treated as such. So are you.

So there you go. I have lots of cool things planned for the 25th year of my life. And Justin Bieber released a song for my birthday. What a guy. Have a wonderful day, lovelies!

…because love wins.

Why you should let people go.


A little while ago there was an app called “Who Deleted Me?” It was designed by Anthony Kuske, whose Twitter profile says he’s from the UK and “makes websites and stuff.” This app was one of those things. The purpose of said app was to do just that – tell people who had deleted them on facebook.

Facebook is a weird, strange, awesome, and dumb thing all at once. We get to connect with anyone virtually anywhere around the world. But at the same time, we can also see all kinds of things that are left to our own imagination. Because let’s be honest – no one is as happy as their profile picture all of the time. And thinking they are can ruin your life.

So then what do we do when one of our used-to-be best friends decides they’re done and we’re not friends anymore? And then what happens when you find that out through a crazy little app? Well, if you cared, it probably sucks pretty badly. If you don’t, you’ll probably have an easier time with what I’m about to say.

If someone doesn’t want to love you, or be your friend, or doesn’t build you up even when they are your friend, it’s time to let them go. Yeah, not that easy, right? Well, it sort of is.

Why would you want to be friends with an enemy you have? Would you call up the kid who picked on you in second grade and ask them to be your best friend? No, I certainly don’t think you would. Sorry to say, but when your friend walked away (and in a dramatic way like a facebook delete to prove a point without a real conversation) they entered the same category. Either they didn’t appreciate you, or they think they will have a better life elsewhere.

I’ve had people die in my life, and I’ve had people walk away. When I was younger, both destroyed me. Now, only death hurts me. Because I only keep camp with the people who I really know love me and who will let me love them back. And it’s okay to know that someone walking away isn’t your fault. It’s the walking person’s fault.

So, if they walked away, don’t chase them. And don’t let them come back. If they cared, and they were someone to want around, they never would have left to begin with. You’re worth more than being someone’s option. They chose to have you let them go, so let them go. And don’t apologize for knowing your worth.

Strong is beautiful – you are beautiful. Smile and do something you love. Because you weren’t worth letting go.

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…because love wins.

Beauty, beauty.


Your life is your lesson. You can’t change what people say to you, how they handle your quirks and imperfections, or even sometimes what you say when you’re not thinking. But you can learn. You can grow. And you can take everything we learned in school and make yourself the student, and life the teacher. Your life is your lesson. And you’re getting straight A’s.

…because love wins.

Some learning about ADHD.


I’ve decided that ADHD is worse than both depression and anxiety. I have also been able to see that not being close to someone who lives with a mental illness can make it very hard to understand what a mental illness even is. But I have learned that if you are close to someone with mental illness, you’ll learn a lot about the beauty of being human. Here’s why. 

Let me state this, as a follow up to my previous post – ADHD stinks. It’s up and down and triggered by all kinds of things. It involves the parts of the brain which need to be used to see problems. It’s like trying to process how to fix a machine through that broken machine, for the person living with it. Of course, this isn’t to say that people with ADHD can’t figure out life. But this is to say that some of them have to work way too hard to do that. 

Then there’s us. People who stand on the outside and see the symptoms of things:
Easily distracted. (Yeah, the shiny things jokes are funny for about 5 minutes, but not a lot after that.)
Wanting to be organized, and not being able to figure out why that’s challenging.
Lacking motivation (not that they don’t care).
Hard time understanding social cues and that being more surprising for them than others around them.
And anger. (I would be angry if I couldn’t understand what I was feeling or why I was too.)

If my brain wouldn’t let me see how I could get out of those things, I wouldn’t know that I was bound to live my life short of who I could be either. No one with ADHD is stupid because of it. They’re not awful. They may have developed some character difficulties, but I would have too. They’re wonderful, beautiful people. Who just happen to have a hard time fighting their own brain.

 

This has been a lot of learning about ADHD. And has me thinking I probably have a new passion to pursue in my life. 

…because love wins. 

Why ADHD is not a disorder.


I love my boyfriend.

A whole lot.

When I met him, he talked a lot. I was really depressed and that was totally annoying to me because I couldn’t handle anything. Once, we went to lunch and he talked for the whole hour straight. I couldn’t make more than 3 sentences fit together, but he struggled to be able to make 3 sentences make sense together. I used to talk a lot too. (Haha. I still do sometimes.) So I kind of understood that. I had just gotten out of a relationship, as had he. So, we had lots of learning to do. And this clearly was not a good place to start another relationship. But there was something cool about that guy.

A couple months passed and we talked here and there. He was loyal, passionate, a dreamer, compassionate, and lively. And that’s awesome. Everyone loves that. He loved that too. And I love that. After a while, I could see that his mind always ran in 100th gear. I asked him if he ever thought of ADHD being a thing in his life. I knew a couple people with it before, but he managed really well. I could just see how tired he would get listening to his head go so fast.

So I started doing some more research. Yeah, totally could be it. I had just been treated for my depression and therefore found it hard to not be researching mental illness and how to be healthy. Fast forward a long ways, some more meds for us both, some new learning, some work and school adaptations, and here we are.

We’re not perfect by any means. We’ll tell you that. But we do understand each other pretty well. And we understand grace in new ways now. Ray can focus better, and learn things with more silence in his brain. And pay attention to me. And I’m not breaking down because he struggles to give me attention. And I have learned to be able to recognize when he does his best. And he, my best.

But the point of this post is to express that I don’t think “Attention Deficit  Hyperactivity Disorder” should be called a disorder. As I look around at the adults in my life, I see an awful lot of them that exhibit the signs of adult ADHD. They speak without thinking, they spend foolishly, they can get confused, and sometimes they can just be mean because they’re overwhelmed. And that’s pretty interesting to me. Because obviously in this society, we aim for order. And peace. And straight lines. But, that’s not always what everyone is.

Energy is suppressed rather than re-directed. They’re misunderstood and disliked because of the way they state things. They probably don’t understand some key life pieces because they couldn’t learn them when they were little. But that doesn’t mean they’re broken. That just means they’re different. So maybe people need to draw a picture rather than read a paragraph. Or maybe they have incredible insights into the world to share. That doesn’t make them broken.

I don’t love ADHD. Neither does he. But, we do understand it. And we do know that it’s a part of our life. The sooner we stop hating the person with the ADHD, the easier it is to work with and around the ADHD. Because I’ll tell you, ADHD means that that person has been through a lot in life…simply dealing with their own minds. And that means that they understand people beautifully. They may be right on the verge of helping someone else…or reaching their full potential. But they just need someone to pay attention long enough to show them how to pay their own attention.

My boyfriend doesn’t have a disorder. He’s got different abilities than I do. And he knows Jesus in a new way because of that. Because Jesus is still the king of all.

…because love wins.

Mental Illness and Jesus


So I’m crazy. 

At least that’s what society says. Of course the stigmas of depression have continued to improve as years pass by and we can see that people all around the world have it, but still, there are lot of people who don’t understand mental illness. Either because they have it and don’t know, or they just don’t have it. Which is awesome. 🙂

But for those of us who do understand and are also Christians, there is this post.

So I have mental illness all around me. As you know (hey frequent readers!) I myself have been diagnosed with depression. I’ve got anxiety, more anxiety, addiction, and ADHD hanging out in other people in my family and friends. And it’s a new learning experience every day.

First thing’s first. Jesus CAN fix anything. He totally can. Prayer works, and you should keep praying, no, matter, what. There have been plenty of times when I have been hopeless for the people around me with mental illness. And by nature of depression, I was pretty hopeless for a long time for myself. But, I have learned to not relent. God wants us to keep knocking on that door until He opens it. He desires healing – he desires peace for us. But, that doesn’t always mean that He’s going to answer in the way that we think He will. He’s going to answer in the way that is most effective for bringing us to Him.

I will tell you, being mentally ill will bring a person to Jesus. There’s not a lot more to do without actually going crazy. Trying to help someone with anxiety, depression, or ADHD will as well. And you know what? I’m thankful for that. Some of us are on meds. I used to think that they weren’t necessary. Jesus humbled me…sometimes that’s the tool he wants to use. Sometimes the meds can’t do it all and there’s some serious soul-digging that has to happen.

But through it all, Jesus is king. He knows that mental illness is just another piece of the fallen world, and the truth remains the truth – He has freedom for us. We may not know how healing will come in earthly terms, but we do know that it will come from Jesus.

Anyway…if you’re ill, or someone you know is, don’t give up. Beg for strength, mercy, healing. Keep your eyes on the goal. You may need to change the plan to get to the goal, but walk in with a shield of love, and see that healing will come, in some way. It will. So rest in that. You’re not at all alone.

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…because love wins.