“Marry your best friend. I do not say that lightly.”


“Marry your best friend. I do not say that lightly.
Really, truly find the strongest, happiest friendship
in the person you fall in love with.
Someone who speaks highly of you. Someone you can laugh with.
The kid of laughs that make your belly ache, and your nose snort.
The embarrassing, earnest, healing kind of laughs.
Wit is important. Life is too short not to love someone
who lets you be a fool with them.
Make sure they are somebody who lets you cry, too.
Despair will come.
Find someone that you want to be there with you through these times.
Most importantly, marry the one that makes passion,
love, and madness combine and course through you.
A love that will never dilute even when the waters get deep, and dark.”

…because love wins.

us

I am marrying someone with a chronic illness.


I didn’t want to marry someone who had as much difficultly as I did in life. I wanted someone who had it all together – who didn’t have a hard time doing the things I do – who could take care of every part of me. Maybe somewhere in life I had been led to believe that I needed that. That I needed someone to take care of me all the time, and that there was only a specific way in which that could be done. I’ve learned differently.

So I had a list of qualities that made me think no one was good enough to do the job. They weren’t spectacular, but they were probably very different than others had. I guess I don’t really know what they all are anymore, because I think I’ve thrown those out the window in exchange for way more than I thought I needed.

Ray is perfect, for me. Not in the blah blah blah cliche way. But in the way that only God can possibly know what I need to take care of my soul, my body, and my heart.

He is a mess. And so am I. A big old beautiful mess.

When he was diagnosed with narcolepsy, I suppose that’s the time that I could have said, “Well, that’s going to be too hard, so nope.” That certainly wasn’t on my list of things I wanted in a husband. There are hard things about it. He can’t be scared because his legs will give out underneath him. (no, I’m not kidding – it’s called cataplexy) And there are certainly times in life when he’ll be scared and we can’t stop that. We have strict bed times. It’s not a lot of fun to live in the night all the way to 9:30pm before saying goodbye, but it’s what we have. The medicine is expensive, and if we don’t have it sometime in the future, we’re probably a bit out of luck. And maybe we’re naive (duh, who isn’t?) but we’ll deal with that when it comes.

Anyway, the point is, I’m marrying someone with a chronic illness. And I would recommend you do so too.

The thing is, we know we are very human because of chronic illness. I am sick, then he’s sick, and sometimes we’re sick on the same day. And those days are hard, but they are also full of love. We aren’t prideful because we are aware that it’s all pretty able to fall apart at any time. And we like our weird illnesses and the unique parts about us that challenge the other. I like to stay up late, but it’s healthier for me to go to bed. So marrying someone with narcolepsy makes me a better human – in a way I didn’t expect. Thanks God.

I’m marrying someone with a chronic illness and I’m really excited about it.

Pray for us, always, and forever, please.🙂

…because love wins.

Words I support.


I’m tired of people romanticizing overexertion. Exhausted is not the new chic. Coffee (though {sometimes} a delicious necessity) is not a food group, and running on fumes is not admirable. Why do we hold pedestals for sleepless nights, break downs and inner turmoil? Are those things really to aspire to? Self care, balance, the ability to  know when your body, mind, and spirit need to take a step back. Those are things we should admire. We have to stop blurring the line between ‘commitment’ and self endangerment, because too many people are burning out before they have a chance to truly shine.Exertion

…because love wins.

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.

——

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.

 

 

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.

b-adhd-magnet

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.

quote

…because love wins.

Why your life is your “purpose.”


I guess the age 24 is when everyone starts to think that they have to have everything figured out. At least that’s what it looks like in the 20something world in which I live. We’re done with college, we’re supposed to go to bed on time, understand health insurance and have the best friends who are just what we wanted to make us grown into the ideal person we think we should be at this point. Because obviously everything we decide right now is going to be how our life will be forever. Right?

There’s a cliche that I kind of really dislike about this time (and really any time) of life.

“What is my purpose and how do I find it?”

When songs aren’t about love and heartbreak or dogs or alcohol and clubs, they’re about trying to make the right choices. I’m just going to jump out on a limb here and tell you that you’re going to mess up some choices, and that that’s okay. It’s oftentimes like we think if we don’t choose the right person to date right now that we’re going to marry or who to “invest” in to have a longtime friend, we’re failures. I mean, come on, think about it. You think that about yourself, don’t you?

Well, here, let me help. Want to know your purpose and if you’re finding it?

You have it. And you found it! Congratulations! So stop being so hard on yourself.

Your life is your purpose. If you’re dating someone who you won’t be with forever but don’t know that yet, date them with kindness, patience, and love. Maybe they’ll meet Jesus in a new way. If you hate your job and think that a better one will solve everything, hate it with kind words and grace. Maybe that place needs to meet Jesus in a new way. If you’re sick and can’t work, or mentally ill and no one knows it, do your best to let Jesus love you while you wait it out.

Your life is your purpose.

As a professional speaker, there’s this element of “fame” that sometimes follows me around. I always tell people that anyone who can talk or sing into a microphone is instantly treated like they’re someone special. That’s just America – that’s not all of life. Jesus is all of life. Which means whether I’m doing things that are glorified by society as “making a difference” or I’m cleaning my kitchen floor, I’m making just as much difference as I should be, as long as my life belongs to Jesus.

You’re not a failure because you’re not on the news and not everyone knows you. You’re not a failure because you aren’t married yet, or you are married and your marriage is hard. You’re not a failure if you yelled at your kids today or if you didn’t give money to the homeless man on the corner. You’re not a failure if your life belongs to Christ and you are walking with Him daily.

So do you want to know that you have a purpose and that you’re changing the world?

Take a deep breath and feel alive.

Jesus is your purpose. Just let yourself be loved, and know you’re making a huge difference just by being alive.

And I love you too.

…because love wins.