October 12, 2014

World Arthritis Day 2014

Today is a day I can't say I ever thought I would be acknowledging - much less celebrating. Just over 5 years ago, however, World Arthritis Day took on a whole new meaning for me.

I was diagnosed with juvenile enthesitis related arthritis just before my freshman year in high school. Essentially, my immune system attacks itself for unknown reasons which causes swelling, pain, redness, and high inflammation levels within my body. Though I see an amazing team of specialists, treatment is available, and there are a plethora of medications to help control symptoms, this is a chronic condition that I and 300,000 other children/teens will likely live with for the rest of our lives.

Now, I'm sure many people would love to discuss the facts. I could sit here and list statistics, direct you to the Mayo Clinic's description of this disease, show you some photos of swollen joints, and call it a day. However, what I'm here to do today + every other day for the rest of my life is to discuss the hard stuff. I want to share the emotional parts of this disease. I want people to get an authentic glimpse into the life of a patient suffering from chronic illness, not just a glimpse at the numbers. In order to do just that, I filmed a short video sharing some of the 'highlights' from my journey including lessons I've learned and ways that have helped me cope with the physical and emotional tolls that come along with being diagnosed with a chronic condition.

Ironically, as I was writing this post last night... One of my best friends, Mady, e-mailed me a paper she wrote for her college writing class. I am honored to know + love her and the words she wrote about my journey mean the absolute world to me. Though she doesn't have arthritis, she has been able to serve as one of the biggest supporters in my life because she has read many of the posts I've shared here. She has been able to grasp a better understanding of what this disease entails and in turn, she is using her voice to share that understanding.
My best friend Kenzie suffers from juvenile arthritis. In order to cope with this, she uses her skill of writing and her love of helping others. Creating hope, that’s what she does. This past summer she went to Swaziland, Africa on a missions trip. She assisted and played with children at a carepoint there. Before she was able to go, she had to attend many doctor appointments where several doctor's told her it probably wouldn’t work. Despite that, she heard God's call that she belongs in Africa helping others. When she got permission to go on the trip, she was the happiest girl on earth. Kenzie has been through a lot, and yet she puts others first. After she got home from her trip, I remember making plans to get together and hear all about it.  The stories are one-of-a-kind. Even though her feet are here in Minnesota, she says that her heart is thousands of miles away with the children she fell in love with there.  Whether it's waking up scared about trying a new medication or waking up in Africa, Kenzie will fight her life-altering illness one step at a time. She will continue to strive for her passions and I can’t wait to see what lies ahead for her.  I am so proud to call her my best friend. 
This past summer, I was named a Cure Arthritis Ambassador for the Arthritis National Research Foundation. Throughout my time working with + getting to know the team behind such an amazing organization, I have been more motivated than ever to get involved in every way possible to raise awareness for this disease...while hoping, praying, and working hard to find a CURE.

I am absolutely convinced that this debilitating disease cannot stop even one of us if we continue to raise awareness + find support, solace, and strength in one another.

Today, join me in wearing BLUE in honor of World Arthritis Day and arthritis warriors all over the world!

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October 02, 2014

College Must-Have's for Getting Over a Cold

I went home this past weekend to spend some time with my family, see old friends, and attend my high school's homecoming football game. I got to hang out with my {old} nanny family on Saturday (I hate that I'm not their full time nanny anymore) as they got ready for a wedding and I got to sleep in an unlofted bed for two nights. It was such a wonderful time and it went entirely too fast, but I am in love with my new home here at Bethel and I missed my roommate/floormates WAY too much!

Last Thursday, my sweet roomie Maddie and I both woke up congested with sore throats. Womp womp. I was grateful that I would be going home for the weekend so I could pick us up some essential cold fighting items for us both!

1.) Lindt Chocolate - first and foremost, obviously! Because chocolate makes the my world go 'round. They just came out with a bunch of new flavors with their #ItStartedWithHello campaign and I've been obsessed with trying them all. The caramel brownie is pretty tasty, but anything salted caramel will always and forever be my personal favorite!

2.) Throat Coat tea - one of my awesome friends back home introduced me to this when I was fighting strep throat, a sinus and double ear infection this past summer. It's super soothing and way tastier than all those nasty cough syrup flavors they carry at my Walgreens.

3.) Emergen-C - now, this is not tasty at all, but it definitely does the job. Vitamin D + Vitamin C and a boost of other vitamins for the immune system. This stuff literally saves my life as an autoimmune disease patient a few times a year!

4.) Love notes!!! - both my roomie and I love leaving each other little notes, writing out cards, and just flat out being encouraging. Words of Affirmation + Quality Time are my actual love languages, contrary to what my mother would tell you (she swears it's coffee + scarves), so I absolutely adore little love notes!

What are your key essentials for getting over a cold?!

Full disclosure: this article is financially supported by Lindt HELLO. All thoughts/images are my own.

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September 19, 2014

A Year of Dreams

I remember writing this birthday post and excitedly anticipating all that my 18th year would hold. It's always so funny looking back because if I had been able to catch even a glimpse of some of the trials God was going to walk me through this past year (i.e. learning how to give myself an injection, a sporty ex-boyfriend, and a kidney infection just to name a few) I think I would've crawled back under my covers that day and refused to age... ;)

BUT, since hiding from life never helped anyone live it...here I am today. Turning 19 and in complete awe of God and His faithfulness.

This year was a year of dreams for me. Dreams of being accepted to my dream school, dreams of enjoying senior year with my best friends, dreams of attending my senior prom, dreams of graduating with honors, dreams of traveling, and dreams of embarking on the new and wonderful journey that is college.

It was a year of dreams, my friends, and I never could've imagined the joy that was in store for me amidst some of the most trying times of my life. 

Last October, I was accepted to my dream school - Bethel University. I got to do senior year with my best friend in the entire world + I got to invest time in so many other precious friendships. My friend group changed and for once I was more than okay with it. I got asked to prom by one of my wisest + funniest guy friends...and my little sister got to do prom with me! I got asked to represent our senior class as a speaker at our graduation ceremony. I graduated with honors. I was selected as a scholarship recipient to the Juvenile Arthritis Conference in Keystone, Colorado where I got to meet one of my longtime, online BFF's in real life. Jesus sent me to Africa for 14 days where I fell in love with the culture and people of Swaziland. And finally, just over 3 weeks ago, I moved into my dorm at my dream school - Bethel University...where the next chapter of my story is just starting to be written. :)

Life is such a wild ride. I don't know where I'll be a year from now - heck, I don't know where I'll be a month from now. I don't know what trials I'll be walking through or what friendships I'll be pouring time into. It's unknown as to what I'll be looking forward to or saving money for. The wonderer spirit inside of me is curious to know what my favorite cereal will be or how I'll spend my Saturday's. ;)

At the end of the day, the fact of the matter is simply that we don't know. We have no idea and that's what makes us capable. Of learning. Of living. Of laughing. Of dreaming. Of fighting. Of having faith. Of becoming. Of hurting. Of healing...and of doing all those things over and over again. We are capable because we are oblivious, as silly as that sounds, and I believe that's what's so beautiful about this wild and precious life. Here's to 19!

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September 15, 2014

The Fault in Our Understanding

The world's most recent infatuation with the The Fault in Our Stars made me even more aware of the fact that many people have not the slightest clue what it's like to live with a chronic illness. Now, don't get me wrong. John Green is an incredible writer. I actually loved the book and am still dying to see the movie...but I feel as if though many readers and movie goers got a glamorized look into the life of someone with a chronic illness versus a real look at what it's actually like to live a life hindered by one.

Much like every other teenage girl, at the end of the book, I was crying. Not because the oh-so-perfect and completely fabricated character of Augustus Waters had died...but because I understood. I was crying because I understand. I know what it's like to wake up and realize that although you may be feeling "well" or while that day may be a sparse "good" one...you will not be cured and you will continue to fight the same pain of the chronic illness you've known for so long that you simply cannot remember what it feels like to be "normal."

When I first read the book back in February, I had no idea it would be such a big hit. I mean, how could it be? How could one make the story of living with a chronic illness into a fictional novel? And how could people who can't relate enjoy reading such a thing? The text is loaded with glimpses and analogies of what it's like to live with a chronic illness. It's jam packed with emotions and thought processes that are a reality for those with chronic disease (which is the sole reason I fell in love with the book).

"Don't tell me you're one of those people who becomes their disease. I know so many people like that. It's disheartening." 

"That's the thing about pain," Augustus said, and then glanced back at me. "It demands to be felt."

"She seemed to be mostly a professional sick person, like me, which made me worry that when I died they'd have nothing to say about me except that I fought heroically, as if the only thing I'd ever done was have this disease." 

"The body shuts down when the pain gets too bad, that consciousness is temporary, that this will pass. But just like always, I didn't slip away. I was left on the shore with the waves washing over me, unable to drown." 

"Most of the time, I could forget about it, but the inexorable truth is this: They might be glad to have me, but I was the alpha and the omega of my parents' suffering." 

"She just keeps fighting the battle, waking up every morning and going to war without complaint." 

"You're a hard person to comfort," Augustus said. "Easy comfort isn't comforting," I said. 

"I wanted to not be a grenade, to not be a malevolent force in the lives of the people I loved." 

"Some war," he said dismissively. "What am I at war with? My body. And what is my body? My body is me. This illness is made of me. It is a civil war, Hazel Grace, with a predetermined winner. There is no glory in illness. There is no meaning to it. There is no honor in dying 'of'."

"When you go into the ER, one of the first things they ask you to do is to rate your pain on a scale of one to ten, and from there they decide which drugs to use for your pain and how quickly to use them. I'd been asked the question hundreds of times over the years...after they'd given me something, the nurse came in and she was kind of stroking my hand while she took my blood pressure and she said, "You know how I know you're a fighter? You called a ten a nine." But that wasn't quite right. I called it a nine because I was saving my ten. And here it was, the great and terrible ten, slamming me again and again as I lay still and alone in my bed staring at the ceiling, the waves tossing me against the rocks then pulling me back out to sea so they could launch me again into the jagged face of the cliff, leaving me floating face up in the water, undrowned."

The quotes I listed above were some of my favorites from the novel. When I say "favorites" I don't mean I liked them, per se, I just mean that they were some of the truest and most relatable words I've heard since my diagnosis.

So, great. I loved the book because I found it relatable...but why did other people love it?

That's where my love-hate relationship with this novel comes in. You see, I think the main reason people today love stories like this one is because of that fact alone. They're stories. There's a plot line to follow, unrealistically perfect characters to get attached to, and eventually (even if it's tragic) there's an ending with some sort of closure that results in understanding and/or comprehending.

Unfortunately, that's precisely where the problem lies...because my story, along with the story of so many other individuals, does not have an end. There isn't closure and we are far from being one of the unrealistically "perfectly sick" characters society has become accustomed to through novels like this one. We don't always have the right words. Sometimes, we don't have words at all. And unlike a book that can be flipped through in a matter of hours, we live lives filled with pain over a much longer duration of time.

Being chronically ill isn't as glamorous as our society believes it to be after reading books or watching movies solely based on fictitious circumstances. In fact, it really isn't glamorous at all. The physical and emotional pain of fighting a daily battle against your own body is both exhausting and inescapable. We learn to tolerate the pain and to make our lives go on despite it...but we can never dodge, bypass, or depart from the suffocating feeling of living with it. The future is a giant question mark and we eventually learn to be okay with that...or at least pretend to be.

I don't know how to accurately (and healthily) display, share, or communicate my emotions/pain 100% of the time and I'm not claiming to be any more capable of relating to others than anyone else in this world...but I do believe that fighting an autoimmune disease for just over 5 years has given me a unique sensitivity for others and their struggles. It makes me want to understand the things I don't even when it's difficult to. It's made me realize that only when we take the time to put ourselves in someone else's shoes will we discover that the fault isn't in our stars after all...the fault is in our understanding.

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