Tag Archives: Hope

Every day is wedding day.

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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.

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

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“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.

I am marrying someone with a chronic illness.

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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.

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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

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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.

 

 

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

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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

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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

Christmas – when there’s no peace in your world.

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I plenty of Christmas shopping this year. I had a great time, filling my cart with gifts for some of my closest and best friends and relatives. I also spent a lot of time in between my shopping watching other people. People were sad, or crabby. Or looked so stressed. And so I thought I would write a little about that.

The Christmas that I was in the hospital getting chemotherapy probably was the best Christmas my family has ever had. It probably should have been the worst one, but I was blessed with parents who knew how to make us a family no matter where we are. We didn’t have a lot of presents because our money went into medical bills. And we didn’t have a way to make a Christmas dinner, because we were in a hospital. But we had each other.

For many years from my teens through college, I was depressed. I guess I didn’t know that I was – I was just so tired all the time. But there were quite a few Christmas days when I was not the happiest camper. In fact, plenty where I was just sad – there wasn’t a reason. But those weren’t bad holiday memories either. Because I had my family.

This year, I’m not depressed, I have bouncing, happy kids in my family. Everyone is alive. And we’re together. And that matters. Yeah, there are gifts, but no one ever remembers what they unwrapped – they remember how they felt.

As a Christian, it’s really easy to remember our family and friends in our Christmas celebrations. But what about the people who don’t feel like celebrating? What about the people who just lost a child to cancer? What about the person who is mentally ill who’s been abandoned? Can we take our peace to those places, or do we close our eyes and look away, because there’s no joy on earth where there’s deep sorrow and grief? What about the people who aren’t together with anyone? Christmas for blog

Maybe you’re that person – who isn’t feeling the peace on earth this Christmas and you don’t feel comfortable just showing up to church. It’s okay. You don’t have to be anything more than you are. Just like Love came to the earth to bring us all peace, I hope that you know that there are people who think of you – and who may just show up on  your doorstep with cookies and ask if they can stay awhile.

Maybe you’re the person stressed buying gifts. Maybe it’s time to get rid of gifts, and start being the gift. I promise your stress will quickly become peace. Because no matter what, peace did come to earth. And because of that, we’ll never have to be without someone who loves us so.

Merry Christmas, dear friends. Merry Christmas.

…because love wins.

hksad