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.

 

 

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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.

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.

#MoreThan4


The tax-payer funded National Cancer Institute invests only 4% of its research budget on childhood cancer research. This is clearly not enough as cancer is the leading cause of death by disease in children. So for all of my friends who have died and my missing leg and nearly dying myself, NCI, kids need more than 4%. #MoreThan4

If you would like to help in this campaign, please print the following file, take a selfie and post it to social media, then tag #MoreThan4 https://4sqclobberscancer.files.wordpress.com/2015/03/4percent.pdf

…because love wins

17 things I learned in the 17 years since I was diagnosed with childhood cancer.


March 11, 1998.

We never forget the days that change our lives. We never forget the moments that change our lives, as a matter of fact. I had one of those on that day. I haven’t forgotten it. I never will.

I had been walking with a limp for about 3 weeks. I was a totally healthy, vivacious, excited little girl. Here’s a picture!

Age 6. :)

Age 6. 🙂

See? Right? Totally healthy. But that knee pain I had wouldn’t go away.

On March 11th, 7:35am, I was walking to the school bus. About halfway there, I fell down. There was a serious sharp pain in my left knee. I remember thinking I didn’t want to look dumb (classic 3rd grade thought process) and it hurt. A lot a lot a lot. The bus was waiting, and it was a shorter distance to get on the bus than to go home, so I got on the bus. I went through my day, limping along, trying not to walk. I have no idea how I was even moving at all.

We had an appointment scheduled with my family doctor that afternoon. When I walked into the office, he told me that he hadn’t seen anyone ever limp like that. The reason? My femur was shattered. The reason?

Bone cancer.

I was 7 years old. I played basketball and giggled and tried to avoid going to sleep at night.

Cancer?

CANCER?

The next day started 49 weeks of chemotherapy, the removal of my leg and a procedure called Rotationplasty (You can learn about that here.) and way too many sharp needles, anesthesia and brokenhearted moments than I can consciously remember or that I should have had to go through as a human being, regardless of age.

So, in honor of the days that I have lived (happily) since then, I want to share with you 17 things that I have learned since March 11, 1998.

1. Life is short. 
Not in the cliche, “Yeah, people say that all the time…” way, but in the “Don’t wait until someone you love is dead in a car accident before you figure this out.” way. Seriously, it can all end right now, and you need to not worry what everyone thinks of you or feel bad when people don’t like you. Choose the way you want to live those short days and then do that. Live, please.

2. Kids die. 
And it sucks. It sucks way worse than someone who has lived to 80 years-old dying. I’m not saying any one life is more important than another, but I am telling you that burying my best friends (4 of them) by the age of 12 is horrendous and wrong. It’s so so so so wrong. Parents should not have to live all the years their kids were supposed to without them. Which leads me to…

3. There is a pathetic amount of money allotted for childhood cancer research. 
I had 49 weeks of poison (chemotherapy) that potentially ruined my heart, potentially took my ability to have children, and certainly made me throw up burning vomit way too many times. The saddest part is that it’s been 17 years and kids today are still taking the exact same awful drugs. With an 80% survival rate. (Which I would say is definitely much lower than 80.) And they haven’t figured out why a lot of my friends never lived and I did. There aren’t many people who took this stuff and grew into adulthood, so there’s not really a way for me to know what my future related to this stuff will bring. Please help. Follow this facebook page and do what it says: TheTruth365.

4. Haters are gonna hate.
There is a saying that goes something like, “In the world people are going to hate you, and people are going to love you, and none of it has anything to do with you.” People make bad choices when they’re mad or scared or stressed. (Thanks, Frozen!) So be graceful and don’t worry too much.

5. God is everywhere. 
You just have to let yourself listen. Even when the truth hurts. Especially when the truth hurts.

6. Illness isn’t terrifying.
Sometimes it is, I suppose, but for anyone who is the friend of someone with a chronic or serious illness, don’t leave said person or family alone. And don’t be upset if they want space or you say the wrong thing. But answer the phone at 2am, expect nothing, give real hugs, and be willing to be whatever they need.

7. You should love yourself. 
There is a complex that tends to come after someone has been through a near-death experience which includes putting everyone else first. And then putting everyone else first until that person is basically dead from never paying attention to themselves. So it’s good to take care of yourself. Paint and laugh and don’t let people use you. You deserve the best too.

8. I am handicapped. 
Lots of people are. In fact, we all are – face the fact. We all have something really wrong with our broken souls. And I think that’s a really important thing to remember when someone can’t help themselves and you have the opportunity to love them.

9. It’s not easy to talk about pain. 
I’m a professional speaker, but that doesn’t mean that it’s easy to talk through the agony that I experienced. There’s this fine line between people wanting to hear the truth and people thinking you’re asking for pity by sharing what you’ve felt. Pay no attention to those people. If you have pain, talk about it. If they choose not to listen, they lose.

10. People won’t always leave, and they won’t always leave you.
There’s my greatest fear. Now you know that. (Yay vulnerable!) I’m sure this grew from holding my friends’ hands while they died and thinking I would never be fully understood again, but in the years since that and some wonderful people in my life, I have learned that people won’t always leave. And I have learned that some people really really want to stay and love me if I let them be inside my heart. Give people a chance.

11. Healthy food isn’t just a fad. Tubing 2
Having a life threatening illness was pretty awful. But it also benefited me in great ways. Because I don’t like toxins because of that experience, I avoid them. And I am pretty particular about taking care of myself with what I put inside my body. And I know I live a more full, happier life because of it. Eat less Doritos and more broccoli. It’s worth it!

12. Downtime is not wasted time.
I laid in my bed for a really long time when I was sick. Like, about a year. And it’s clear that that time has not been wasted, even though I was doing nothing for 49 weeks. You’re human. Slow down. Life will come to you.

13. Sometimes hope just doesn’t feel real. 
There will be times in your life where you can’t hope. Where you realize that the thing that you have been hoping for for so long just isn’t going to happen. And that’s okay. Give up, cry, get mad, do whatever you need to do. Just because we don’t think there is hope doesn’t mean there isn’t. And it doesn’t mean that the days won’t get brighter again. They will.

14. Tie your brain to your heart. 
If you want to do something that really helps people, don’t just dream. Figure out what skills you need to tangibly do the work. For example, if you want to travel the world and feed homeless, start learning languages now. If you want to start a business, learn how to start a business. And then put your heart into your intellect.

15. Don’t take boredom for granted. 
I remember being 15 and telling my parents I was bored. But then I realized that I may be bored because my life is just okay at that time. And it’s not falling apart. And that means there’s goodness – and that’s not boring at all.

16. Bad things can still be bad years later, but they don’t have to rule you. 
I realize that there are some things from cancer which totally left me with PTSD. That’s the reality for my life, and I’ve accepted it. That’s pretty lame, but so are tsunamis, and I haven’t been through one of those. And some other people have to accept them in their lives. So it’s okay to not like things that happened to you. But that doesn’t mean they are in your now, or that they will take you down. Nah, there’s always healing, and always growth. And you’re good now. Just learn and live.

17. Jesus loves you. Jesus
I have tried this one out. I have searched the depth of my heart and society many times. I have watched people die, kids without parents in hospitals, and kids around the world who have no medical care and die just because of that. And there is still love – and love is the currency we should really use. Jesus is the only way to God, and there is one God, and He is Jesus’ father. And you know what? Whether you know it or not, He loves you. And He’s going to come back. Don’t wait to talk to him until your life doesn’t make sense anymore. Someone will always, always love you.

Here’s to 17 more years!

Love to you all.

…because love wins.

PCOS: Spearmint Tea


My brain is coming out of the fog that it sometimes likes to have, so I thought I would talk about how it does that.

I was diagnosed with Polycystic Ovarian Syndrome (PCOS) when I was 18 or 19. I had a lot of acne, a little extra dark hair, and didn’t get my periods every month. (Sorry for the info boys!) Until a doctor said that actually was an issue, I didn’t really think much of it. Even after the diagnosis, I didn’t think much of it.

The basic treatment protocol for PCOS is oral contraceptives. And that was pretty terrible for me. It works well for some (let’s not argue about the risks and moral issues here – but be sure to do your research and make your own individual decision), but it basically made me a zombie. I didn’t know it at the time, but college really doesn’t make a person THAT tired. Especially when you actually sleep at night. So I did that for 3 years. I was on lots of different kinds. I didn’t have acne – but I also didn’t really get to live a life.

I tried Spironolactone. That made me cry within a half an hour of taking it. It made me think the world was ending. My doctor hadn’t ever heard of that happening before, but alas, it did. So that was enough of that.

Finally I got off all of it and did the natural route. That was in January of 2013. It’s taken a while, but I would say I am almost there. There have been many changes in my diet and I can talk about that in another post, but what seems to best take me out of my fog is drinking Spearmint tea.

spearmintI was always okay with drinking tea, but I wasn’t really sure it did much for a person. I’m sure it doesn’t work for everyone, and it wouldn’t work if I didn’t exercise and eat the right things, but my brain is often foggy until I have 2-3 cups for the day. I just had my second cup. And I finally feel like I can think clearly all the time without looking through the clouds whenever they would decide to show up.

I know lots of ladies want to know – I order a large box from Traditional Medicinals (pictured) on Amazon, and that lasts me quite a while. Oh – and my acne is gone too! If you haven’t tried it, go for it! It’s been life changing for me and I hope it is for you too.

…because love wins