“I feel bad.”


It’s late and I should be sleeping, but there are just moments in life that ask to be written about.

Tonight was a Brighter Tomorrows night. Those who know me know this is my favorite night of life, every single time it happens. Those who don’t know me now know that it’s my favorite. Moving on.

We had 37 kids RSVP. That’s amazing to me. I don’t want kids to have cancer, but if they do have cancer, I do want them to come to Brighter Tomorrows to play games with us, to laugh with us, and to have summer camp with us once every month.

One conversation (among the many that are seriously the most inspirational things in life) tonight struck me and just keeps playing over and over again in my head. That’s why I am writing and not sleeping.

There is a 7 year old boy with Ewing’s Sarcoma, a rare form of bone cancer. I know most of his story because I’ve read it, met his family, talked with others who know him. But he doesn’t know that. He just thinks I know him for him. So we’re making some crafts and I mention that he still has his port accessed (most of the time kids don’t leave with a line in if they are just going for chemo) and I ask him why that is. He tells me that it’s for radiation and goes on to explain the burns that he has from it.

He rolls down the edge of his comfy pants, and I see the red line where that burn starts. I ask him casually if it hurts (because to him, cancer is casual and a part of life…I remember) and he says “Nope, not at all.” I’m sure at some points it does because his skin is all a deep, deep red and has a rough look to it, but he gave me the right now answer which is technically what I asked for. (Kids are amazing and I love them.) Then I go on to explain to him that I had cancer as well. I explain my leg and why I didn’t need any radiation and why he does but how we are similar. And then he listens and he and his brother start asking questions.

“Do you have a scar?”
“Yes, one here and here and here.”
“How did they hook it back on?”
“With a plate and screws.”
“So you have metal on you?”
“Well, sort of. Technically I have metal in me.”
“Does that hurt?”
“Nope, not at all, and it keeps my leg on there safely.”

We giggle.

He persists…

“Does it hurt to wear your leg?”
“Nope, it’s made just for me.”
“So your foot is just in there like that, huh?”
“Yes, just like you’re doing it!”
“Wait, so you lost your hair!?”
“I sure did.”

He stops.

“I feel so bad,” he says.

I tell him not to. He tells me he feels bad for me. I tell him I’m okay and everything is good and life is great. He insists that he feels bad for me.

Life is about perspective, my friends. Look without yourself.

…because love wins.

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Every day is wedding day.


Today, I want to make mention of these people – who have stood by us in great times, bizarre times, and hard times. Who make us laugh, bring purpose to our lives, and who we could not be ourselves without. These are words for them:

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”

-Elizabeth Kubler Ros

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…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.

 

 

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.