6.24.2014

It Doesn't Go Away

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.

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13 comments:

Kendra Loisel said...

You are so strong girl. You are doing the best you can and that's all that matters. It is not an easy life to live, but it is yours and you are making the best out of it!

Amanda aka Manda said...

It is SO hard to explain a chronic condition. But you're right, we just have to make our "normal" bc it'll never be anyone else's normal. Thanks for the reminder to live life and live it one day at a time!

Shannon Q. said...

I think I've said this before...but you are very wise for such a young woman. Proud of you for rocking your life to the fullest in spite of....

Jodi Tivey said...

You are simply amazing dear girl!

Danielle Tipton said...

Thank you! I have a 12 yr old with MCTD and dermatomyositis, an 11 yr old with psoriatic arthritis, and I was recently diagnosed with RA & Sjogren's. I know my pain is nothing compared to what my kiddo's feel. I have a hard time explaining it to people sometimes, too. You have summed up what I usually tell people. :) Live it! Thanks for the positive message!

KARI Conway said...

I love you girl! You said it perfectly! Hugs from my " pain" to yours 😉...

Tayler Morrell said...

Having a husband with MS, I can begin to relate. It's very hard, not only on the person with the actual autoimmune disorder, but their family. It hurts seeing how much physical, mental, and emotional pain my husband (or you) go through. The best advice I have for spouses or friends is to be strong for them and just be there for them.

Jamie Vespa said...

As always, I am so in awe of you. I can't even imagine going through the things that you do and I can't imagine myself being as strong if I was in your shoes. But then, I couldn't really know how I'd handle it unless I really was in a similar situation. But I am still just humbled by your strength & wisdom :)

Amy said...

girl, you are such a beautiful inspiration, you just have no idea how much <3

Kristin Conklin said...

You are such an inspiration Kenzie. It's hard for me to imagine what you have to go through each day with your chronic illness, but I appreciate your willingness to always be open, honest and just be YOU! You are true gift and you live out loud one of my favorite quotes: "walk into your story and own it." (Brene Brown) Be well, Kristin

Hallie Oceanside said...

aww Kenz, I could go on about how much I love you, your positivity, and your inspiration.

You are one amazing lady my dear!

K8tlyn28 said...

Stay strong girl! Keeping a positive attitude is the key to surviving any chronic illness, and you seem like you have a great attitude and outlook on life. I work with a lot of arthritis patients and I'm always trying to help people who don't have chronic arthritis take preventable measures. Praying for a cure!

Danielle said...

You are such a strong girl and your strength need ceases to amaze me. Seriously! This is totally random but I feel like God is wanting me to reach out to you. I am adding you to my prayer list bc I want you to feel better and not have to deal with any of this (though you really are a trooper!). Could you give me your email? I think I may be able to help. I promise I'm not a stalker! Just a follower of Christ wanting to help another sister out. Thank you! God bless. My email is vincent.danielle@ymail.com and my name is Danielle, it it is easier for you to email me. Thank you so much girl and God bless!!