Over the course of the past week, three people in my life have very openly asked me similar questions about what it's like to live with a chronic illness. After shortened explanations of the Spoon Theory, attempting to stay as lighthearted as possible, and the citation(s) of countless Web MD definitions... I've found even myself a bit bewildered by the pain that has forever changed the way I live my life.
Autoimmune arthritis is still confusing to me and I was diagnosed nearly 5 years ago. I don't know why I was one who inherited the HLA-DR4 gene or why I was 1 in 250 who was diagnosed with juvenile arthritis at a young age. I don't know why my immune system attacks itself and causes pain and swelling or why I can go from feeling great to experiencing writhing pain in a matter of seconds. There are so many unanswered questions that I've simply stopped asking "why?" to.
In a nutshell, here's why: even when I'm in pain, I'm Kenzie. No amount of pain, no doctor's appointment, and no medication will change the fact that I am alive and human with a life to live and the choice on how to live it. I'm a teenage girl who wants to stay out with her friends til the wee hours of the morning. I want to be able to go on a date and not worry about having to explain the pain relieving patches or joint braces covering my body. I want to live, learn, and experience just like we all do. I just go about doing so a little differently.
For those reasons and others, I've found that even when I'm in pain, I somehow find the strength to go for a run. To go shopping with my girls. I finally say "yes" to that date I was avoiding. I stay out late with my friends. I put my swimsuit on and go out to the lake. I take on another babysitting job for the week... Because I've simply realized that if I'm not living my life, no one will.
In reality, the pain? It doesn't go away. My pain levels change more rapidly than anything else in my life does. One day may be a tough one, and the next might be excellent... An OMG-this-is-what-normal-feels-like kinda day. But ultimately and realistically, my diagnosis is chronic, and that means it never goes away. It doesn't go away, so I just make room for it. I create a new normal the best way I know how, and when I discover something better, I do better.
The truth is, I don't know how to explain what it's like to live with a chronic condition. There aren't words to describe something that changes you on an hourly basis. All I know for certain is that day in and day out, this is my reality and doing what I can to create a sense of "normal" in the midst of it all is essential.
I take it all one day at a time not only because it's the best way, but because it's the only way.
6.24.2014
6.06.2014
Speaking LIFE to Someone with Chronic Pain
During the past 4 years of living with chronic pain and an autoimmune disease, I've dealt with multiple healthcare "professionals," outsiders who think I'm a hypochondriac, and discouraging, ignorant people who simply like to discount the importance of the things + a pain that they have never experienced, therefore cannot possibly understand.
During those same 4 years, however, I have also formed some really incredible friendships and I've had some life changing and beyond encouraging conversations. For every time I have been offended or hurt by something someone has said to me in regards of the chronic pain I feel on a daily basis, there have been 10 other things that have encouraged and given me the strength I need to keep fighting.
At times, chronically ill or not, we are ALL offended and discouraged by the words of others. It is a fact of life. I will be the first to admit that I've even been the initiator of discouraging words at times. Hurt people, hurt people. That statement rings true, I know. But there comes a point when those discouraging words must cease to exist. There comes a time when speaking life becomes vital.
Now, what I'm sharing today isn't meant to be force fed. I'm not asking anyone to take these 5 text messages I've received (and found helpful) and incorporate them word for word into their daily dialogue with others suffering from autoimmune disease or chronic pain. I'm only asking that you would read these words, recognize the compassion within them, and use them to better form your responses to conversations in the future.
1.) Get excited about the GOOD days. Sometimes, especially during particularly tough seasons, GOOD days are few and far between. Celebrate those good days, but don't discount the bad days in the process. Also remember that because of the instability of our immune systems, things can change quickly. Bear with us. Stay excited. Do your best to be encouraging no matter what kind of day it is.
During those same 4 years, however, I have also formed some really incredible friendships and I've had some life changing and beyond encouraging conversations. For every time I have been offended or hurt by something someone has said to me in regards of the chronic pain I feel on a daily basis, there have been 10 other things that have encouraged and given me the strength I need to keep fighting.
At times, chronically ill or not, we are ALL offended and discouraged by the words of others. It is a fact of life. I will be the first to admit that I've even been the initiator of discouraging words at times. Hurt people, hurt people. That statement rings true, I know. But there comes a point when those discouraging words must cease to exist. There comes a time when speaking life becomes vital.
Now, what I'm sharing today isn't meant to be force fed. I'm not asking anyone to take these 5 text messages I've received (and found helpful) and incorporate them word for word into their daily dialogue with others suffering from autoimmune disease or chronic pain. I'm only asking that you would read these words, recognize the compassion within them, and use them to better form your responses to conversations in the future.
1.) Get excited about the GOOD days. Sometimes, especially during particularly tough seasons, GOOD days are few and far between. Celebrate those good days, but don't discount the bad days in the process. Also remember that because of the instability of our immune systems, things can change quickly. Bear with us. Stay excited. Do your best to be encouraging no matter what kind of day it is.
2.) Remind the sufferer that they are strong enough to fight. It may sound cliche, but as someone who fights an autoimmune disease regularly... Day in and day out... It's easy to fall into the redundancy of it all. No day is the same, but one thing that doesn't change is the relentless pain. A simple reminder of the strength it takes to fight MATTERS.
3.) Out-of-the-blue encouragement. This is by far the most efficient, tangible, and meaningful form of encouragement in my book. It has gotten me through days and nights when I wanted nothing more than to give up completely. Sending a short text message takes seconds and can completely turn a day around.
4.) Humor... At the right time. One of my best friends has NAILED this form of encouragement. On injection nights or during vent sessions, she is able to make me giggle through the pain that has the ability to engulf every part of me. At the right time, humor can be incredibly beneficial. It tends to keep me more grounded than anything and it helps me to remember that there is a bigger picture beyond the here and now!
5.) Just. Be. There. Contrary to popular belief, there doesn't have to be a solution or a "fix" to help patients, just like me, through the pain the pain we experience on a daily basis. Simply letting the sufferer know that you care, are there to listen, and will continue to be with them along the way is more than beneficial. As a supporter, literally all you need to say is:
A simple, "Even though I don't know what you're going through, I'm here and I care," is enough to make the world of a difference.
Encourage. Listen. Laugh. Simply be there... And make that world of a difference with your words through speaking LIFE.
6.05.2014
I'm More Than Okay With It
"I want to move to Africa one day!"
They roll their eyes.
"I want to adopt at least 3 children!"
They laugh.
They don't laugh because they're unsupportive, because they wish to mock me, or because they don't believe in me. They laugh because I'm Kenzie... And Kenzie gets a little crazy sometimes. But you know, I'm okay with that... Clearly.
The hardest thing for me to explain to people is what I want out of life. Before graduation, my classmates and I had to fill out a piece of paper that asked where we we pictured ourselves in 10 years. I wrote... "Happy. In love. In Africa... With a pile of kids!".
Apparently, that's crazy. But why?
What my family (and most all the people who surround me) do not understand is that if I never have a beautiful, elaborate home, an expensive car, the typical all-American family, or what the world sees as a "real job," one day... I will be okay with it. If I don't spend 4 years at my dream school experiencing the total college life, I will be okay with it. If I am dirty, hungry, exhausted, and sharing God's love with children who might not otherwise know it, I will be okay with it.
As long as I am chasing His call with reckless abandon, I promise you with every inch of my being that I will be MORE than okay with it.
How? The Bible tells us to do two very important things: love God and love others the way we want to be loved. I don't know about you, but I don't want to be starving or lonely or homeless or parent-less or naked. I don't want to drink dirty water, sleep on the floor each night, be denied an education, or sell my body to pay the bills.
And THAT is why I am okay with giving up my dreams in order for God to make His dreams my own. That is why I'm okay with God's call. With surrendering. With investing into His kingdom, both literally and figuratively. With giving up everything I am to be everything He wants me to be.
Yes, maybe this looks crazy from the outside. Maybe I'm not like everyone else. In fact, I KNOW I am not.
I'm not Amy who has been called to serve in Missouri.
I'm not Elissa who currently lives in Russia with her family.
I'm not Misty who set aside three months to spend time working in a church in Alaska.
I'm not Tiana who is volunteering in a Guatemalan orphanage for two months.
If I know I am not like everyone else, then why is it so hard, for Heaven's sake, to simply understand that God wants me - all of me - in Africa? Why is that such a foreign idea? Why is it shunned? Why is doing God's work not "as good" as doing man's? Why does this world have it all backward?
Truthfully, I don't know and I don't think we'll ever find out on this side of Heaven. But I do know that God has a history of using the ones who said "yes." The one's who appeared to crazy. When Mary was asked to mother the son of God, I have a hard time believing she was fearless. When Jesus told Peter to walk out onto the water, I don't believe he took a running start. The thing that set those two (and so many others) a part was the mere fact that they said "YES." They were people just like you and I, but because they were willing to follow Christ no matter the cost, He used them in ways they never would have known had they let the fear of what other people thought control them.
You see, God's call isn't complicated. It's clear... And YES, sometimes it's daunting. But it's never confusing. When we pray and ask, He shows and tells. His call is simple, we just make following that call complicated. We try to justify and simplify when God has already given us the means to do abundantly more than we could ever ask or imagine. I've been guilty of it for a long, long time - but today, I want to be forgiven of that and I don't want to forget the freedom that comes along with saying, "Yes, Lord. YOUR way," ever again.
Maybe I'll be right here in 10 years. Maybe I'll be in a different state. I might even be happy. In love. In Africa... With a pile of kids! Whatever God has for my future, I want that. And I have never felt a call stronger than the one leading me to Africa.
So, I'm okay with it, God. I'm officially okay with you shattering this life to pieces and putting it back together so much more beautifully. I'm more than okay with it.
They roll their eyes.
"I want to adopt at least 3 children!"
They laugh.
They don't laugh because they're unsupportive, because they wish to mock me, or because they don't believe in me. They laugh because I'm Kenzie... And Kenzie gets a little crazy sometimes. But you know, I'm okay with that... Clearly.
Apparently, that's crazy. But why?
What my family (and most all the people who surround me) do not understand is that if I never have a beautiful, elaborate home, an expensive car, the typical all-American family, or what the world sees as a "real job," one day... I will be okay with it. If I don't spend 4 years at my dream school experiencing the total college life, I will be okay with it. If I am dirty, hungry, exhausted, and sharing God's love with children who might not otherwise know it, I will be okay with it.
As long as I am chasing His call with reckless abandon, I promise you with every inch of my being that I will be MORE than okay with it.
How? The Bible tells us to do two very important things: love God and love others the way we want to be loved. I don't know about you, but I don't want to be starving or lonely or homeless or parent-less or naked. I don't want to drink dirty water, sleep on the floor each night, be denied an education, or sell my body to pay the bills.
And THAT is why I am okay with giving up my dreams in order for God to make His dreams my own. That is why I'm okay with God's call. With surrendering. With investing into His kingdom, both literally and figuratively. With giving up everything I am to be everything He wants me to be.
Yes, maybe this looks crazy from the outside. Maybe I'm not like everyone else. In fact, I KNOW I am not.
I'm not Amy who has been called to serve in Missouri.
I'm not Elissa who currently lives in Russia with her family.
I'm not Misty who set aside three months to spend time working in a church in Alaska.
I'm not Tiana who is volunteering in a Guatemalan orphanage for two months.
If I know I am not like everyone else, then why is it so hard, for Heaven's sake, to simply understand that God wants me - all of me - in Africa? Why is that such a foreign idea? Why is it shunned? Why is doing God's work not "as good" as doing man's? Why does this world have it all backward?
Truthfully, I don't know and I don't think we'll ever find out on this side of Heaven. But I do know that God has a history of using the ones who said "yes." The one's who appeared to crazy. When Mary was asked to mother the son of God, I have a hard time believing she was fearless. When Jesus told Peter to walk out onto the water, I don't believe he took a running start. The thing that set those two (and so many others) a part was the mere fact that they said "YES." They were people just like you and I, but because they were willing to follow Christ no matter the cost, He used them in ways they never would have known had they let the fear of what other people thought control them.
You see, God's call isn't complicated. It's clear... And YES, sometimes it's daunting. But it's never confusing. When we pray and ask, He shows and tells. His call is simple, we just make following that call complicated. We try to justify and simplify when God has already given us the means to do abundantly more than we could ever ask or imagine. I've been guilty of it for a long, long time - but today, I want to be forgiven of that and I don't want to forget the freedom that comes along with saying, "Yes, Lord. YOUR way," ever again.
Maybe I'll be right here in 10 years. Maybe I'll be in a different state. I might even be happy. In love. In Africa... With a pile of kids! Whatever God has for my future, I want that. And I have never felt a call stronger than the one leading me to Africa.
So, I'm okay with it, God. I'm officially okay with you shattering this life to pieces and putting it back together so much more beautifully. I'm more than okay with it.
6.04.2014
Ringing in Summer with Floral + Bright Colors
WHAT I'M WEARING :: KIMONO //c/o Oakleigh Rose :: T-SHIRT // Kohl's :: EARRINGS // Molly Suzanne :: SKIRT // Groopdealz :: SHOES // Apricot Lane
I'd typically describe my style as classy, simple, and chic. I like bright colors, but neutrals are within the realms of my comfort zone. This summer, I've made it my goal to step out of that comfort zone. Now that what is officially my summer is HERE, I've been dying to add more flowy, bright colored pieces to my neutral wardrobe. In enters this kimono from Oakleigh Rose!
The best part about this little number is that it is so incredibly versatile. I've worn it as a swimsuit cover up, I've dressed it up, and I've dressed it down. The lightweight fabric couldn't be more perfect for a Minnesota summer, but earlier this spring, I was able to wear it with layered t-shirts underneath to keep me warmer (as pictured) and still look totally spring-ish! To top it off, it matches my favorite NYC lipstick to a T!
I absolutely adore this piece and know I'll be rocking it all summer long - on the boat, at the campground, and every place in between. I've already picked out the next three items on my wishlist from their website!
What pieces are on your summer wishlist?
Linking up with The Pleated Poppy, Style Elixir, Because Shanna Said So, Get Your Pretty On, & Tucker Up!
Labels: reviews, summer style, what kenz wore
Subscribe to: Posts (Atom)