10.12.2014

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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4 comments:

Rachel Ginger said...

Hello, Beautiful.
I have an arthritis related post planned for this upcoming week, so I loved seeing this post from you!
This was so nice and refreshing to read. I was diagnosed with rheumatoid arthritis just before my 18th Birthday, and while people learn to live with things like that, when you're as young as we are it can throw you off a little. As much as I wish this post didn't need to be written (As that would most likely mean you didn't have it at all), it is always helpful and uplifting to see and hear that others are in the same race as you.
Keep doing what you're doing and raising awareness! You have no idea how helpful it is. Your story is going to change people's lives, and your passion for it will change the world.
Hope you have an amazing weekend!

Rachel Ginger

Amanda aka Manda said...

I know I tell you think all the time but you are SUCH an inspiration to me. I'm so proud of you and all that you do to help educate people about not just arthritis but autoimmune diseases. I'm so glad to have you as an ambassador to represent us! Love you sweet friend!!

Rachel Lynne said...

You are such an inspiration and I think it is absolutely amazing that you can embrace what you have been diagnosed with and use it not as an excuse, but as a reason to create hope for others and spread more awareness. You are brave and beautiful darling! And what a sweet friend you have :) I wish I would have worn blue! I will have to wear it this week to still represent :)

Travis Love said...

it's awesome to see that you have family and friends standing with you as you overcome your situation! Your writing is quite impactful, and I look forward to reading more from you.