12.15.2014

Embrace What's Difficult

Well, this week's the week. Surgery came fast, finals came even faster. Stressful things have been on the radar, but so have exciting and happy things! Back in November, I applied for a scholarship to the MedX Conference at Stanford University next fall. The conference aims to connect healthcare professionals with patients battling all sorts of chronic illnesses in order to create a better and more approachable system for all. It's no secret that my journey with chronic pain/illness has ignited a deep passion for advocacy inside of me, so I knew this conference was something I was more than interested in. Much to my surprise, my application was accepted, I got an interview, and shortly thereafter I discovered that I was selected to receive a scholarship to attend the conference next fall!


It is such an honor to have this opportunity and I know that God will bless my time there just as he blessed my time at the juvenile arthritis conference this past summer. I said it once and I'll say it again: I never know when or where God will use me to raise awareness for this disease and if I'm being completely honest, there are a plethora of days that I complain, cry, and absolutely HATE it. The calling, the purpose, the questions, the funny looks, the pain. There are days that I plead with God to just take it all away. But sometimes, for a brief moment in the midst of wonderful opportunities such as these, I realize I am glad. Thankful even, that He chose me to do this work.

Yesterday, I submitted my official biography to them and thought it might be beneficial to share here for newer readers or people who want more of a big picture approach to my diagnosis! 
At the age of 14, I was a carefree and energetic girl who had just entered into her teenage years. I worked hard in school, ran on the cross country team, and competed on the speech team. I thought I had everything figured out (until I didn't) and very quickly, my life was flipped upside down. After one of my cross country races, I suffered a heat stroke which brought on a migraine that lasted weeks. I began to lose mass amounts of weight as pain and swelling began to affect several areas of my body, more specifically my joints. I was unable to get out of bed most days and was so fatigued that doing something as simple as getting dressed resulted in the need for a half hour nap. As my parents and I sought help from the healthcare providers in our area, I was diagnosed as clinically depressed. I felt as though I was being passed off as certifiably crazy. It seemed that nobody would believe me, take me seriously, and/or get me the help I needed. 
In response to the pain and emotions I was dealing with, I decided to start my blog (Life According to Kenz) in July of 2011 with the intent of writing about my struggles with chronic pain. Multiple scans and appointments filled the next month and I was finally diagnosed with juvenile enthesitis-related arthritis, cervical disc degeneration, and chronic migraines about a year after onset. My blog quickly became a place where I very openly shared my thoughts about different treatments I was undergoing and also a place where I could begin to work through the feelings associated with being diagnosed with a life altering, chronic condition.  
Since then, my blog and I have come a long way. I have become extremely active in the online health community on Twitter and Facebook and I have also found a deep passion for advocacy. After 5 years, I received news that my arthritis is officially in remission, but contrary to popular belief, that does not mean my story is over. This past fall, at the age of 19, I was diagnosed with fibromyalgia and will be undergoing two surgeries in December 2014 to fix some of the permanent damage my original diagnosis of arthritis caused.  
Every day on this journey has been a mountain to climb and a storm to weather, but I have never been more sure of my purpose or faith in this life and in something so much more magnificent following it. God has given me the ability to create a life I am more than delighted to live despite pain and that will always be my greatest joy. My sole hope is that as I connect with people in the online health community, they would feel encouraged and know that they are not alone no matter what battle, illness, or disability they may be facing. I am more than honored and beyond excited to be attending MedX as an ePatient Scholar in 2015, but more importantly, I am just so grateful for the online health community and how instrumental each and every person I've interacted with has been in getting me where I am today!
One of the young women who has greatly influenced my passion for advocacy is Samantha Petersen, a 17 year old from Connecticut. Samantha was diagnosed with scoliosis at the age of 11 and has used her diagnosis turned passion to form SHIFT Scoliosis, an organization she created to provide screenings and support for all people with spinal conditions. Samantha has been selected by Medtronic as a 2014 Bakken Invitation Honoree. Her motto is: "Embrace what's difficult," and I could not be more excited for all that she is going to do within the health community as she continues her advocacy! People like Samantha encourage me to do more and give more in every aspect of my life + health journey.


Who/what inspires you to do more and give more? Share it with me in the comments and be entered to win a $100 Visa gift card to donate to your charity organization of choice, courtesy of Medtronic!

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Full disclosure: this article is financially supported by Medtronic. All thoughts are my own.
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49 comments:

Amanda aka Manda said...

This is AMAZING Kenzie!! SO incredibly excited for you! It's amazing to have someone like you advocating for those of us with chronic pain/illness!

Sarah @ Seriously, Sarah? said...

That is such a great opportunity! I would love to participate in a conference like that, because I sure have a lot to tell some doctors :)

Bianca @ The Pierogie Mama said...

What a powerful story. My dad battled a very rare cancer for 9 years and participated in many medical trials. Some helped, some didn't. His battle taught me to always be looking for the next step, there very rarely is a dead end (and of course, God opens a window when he closes a door..). Congrats on your achievement!

Amanda said...

My Children inspire me to do more!

Danita Carr said...

Wonderful! So happy for you.

Mandi said...

That's AMAZING!!! Way to go!

Sarah Halstead said...

My son Carsyn.

Jen said...

This is so amazing!!!! :)

Tayler Morrell said...

Congrats!
My husband with MS inspires me.

HS said...

My kids inspire me to do more for a better world.

Danielle Tipton said...

I am very excited for you about this conference opportunity, as well as your missions trip to Jamaica. I subscribe to many JA/RA/MCTD blogs, but I read yours more because of your warmth, depth, courage, but especially your love of God and how you find ways to incorporate Him into your writing. You truly are a blessing. We are hoping to make the JA Conference this year since we live in Florida. Perhaps we may meet! I love going to the conferences because it feels like home, Ya know?

As for people who motivate me, probably not the way you are thinking but it's definitely my kiddo's. My daughter was diagnosed with JA at 6, & finally with MCTD & Dermatomyositis at 8. She just turned 13. While she still has major anxiety, she is especially my hero. She perseveres even when she's is really bad. Last year, I was diagnosed with RA & Sjogren's. I am always amazed at how much stronger she is than me, & she helps me to not complain. My son has PsA (from 8, now 11). He doesn't complain either. I am very blessed to have them in my life. I know its not what you're going for, but it's very true. :). Take care, & please keep writing!

Lisa Brown said...

my husband inspires me to do more for people; we give to our local food bank regularly and donate to charities that care for the elderly in hospices in our area.

Mami2jcn said...

My mom definitely inspires me to do more. She's involved with a charity that helps children in Colombia (she's actually there volunteering).

Elena said...

My husband inspires me. He is such a generous person

Elle said...

My mother inspires me to give more and be a better person.

lil_lady_dz said...

My sisters inspire me to do more, especially in my community, they are always giving back and have taught me the importance in it. We now give back together, this year we have been gathering coats and donating them so everyone can stay warm here in Michigan.

Censie Sawyer said...

My mom. She is always there for our family. She is our glue.

kellyr78 said...

My kids inspire me to give and do more because I want to set a good example for them.

Amanda Sakovitz said...

My mom definitely inspires me to do more. She always puts others ahead of herself.

Thomas Murphy said...

My dad inspires me.

rounder9834 @yahoo.com

Karen Glatt said...

My sister and Dad inspire me the most because they are always giving and helping others!

Courtney Fisk said...

Your story is just beginning. You will do great things! My son is my inspiration. Diagnosed with celiac the years ago, he had always been positive even though he feels sick all the time.

steve weber said...

my family inspires me to do more.. I volunteer at least twice a month.

stephanie jones said...

my daughter nspires me

freebiel0ve@yahoo.com

sonyamorris (Sonya Morris) said...

My oldest daughter inspires me and many more around her. She is partially paralyzed from Transverse Myelitis and has endured countless surgeries including a Baclofen Pump made by Medtronic. She just completed her first semester at college (living on campus as well) trekking to each class on forearm crutches or in a wheelchair. She never has a bad attitude although you know we all have pity parties from now and then. She is amazing!

Cassandra Eastman said...

My husband, he's so giving of himself which is a great reminder for me to be the same.

Amy Orvin said...

The animals in my neighborhood inspire me to do more and give more. I feed everybody from raccoons and possums to cats and birds. They are all welcome in my yard as long as there is no fighting. I have been working with everyone for 5 years so I pretty much have them trained to be good , most if the time.

LauraJJ said...

Oh what an inspiring story! Wow!
My grandson is the one who inspires me to help others!

Birdie Bee said...

My children and grandchildren inspire me to do and give more.

Kristen said...

I have a friend who trains Hearing Dogs for the deaf. I can see how much work it takes, but it is so worth it as the match ups can be life changing for both the person and the dog. She always inspires me to do more.

Ashley T. said...

My husband inspires me to do and give more.

Tj and Amy said...

MY father was such a great example before he passed he always gave whether it was a simple gesture or smile he didn't have much but gave so much I hope to be like him one day.

terry maigi said...

My mom inspires me to do more! She is absolutely amazing! She raised 5 children, and homeschooled all of us! She is always giving her time and resources to help others. Constantly volunteering and helping children in foster care!

Courtney B said...

my husband inspires me to do more because he's always so positive and happy! and always giving to others!!

Madonna said...

I have been in a position of needing help before and remembering how hard it was to get back up is what inspires me to help others. I think of those who helped me and I want to always try to help others.

Unknown said...

My mother inspires me to do more since she is generous!

Tammigirl said...

My 88 year old grandparents, who still do so much for so many are a great source of inspiration. My mother, who is also very giving,inspires me as well. My husband, my kids, our little dogs, neighbors, the clients at the sharing center... lots of people inspire me to be helpful and giving.

Melanie Montgomery said...

My mom.
She inspires me everyday to care more and be a better person.

jenmalonee said...

My mother does. Like has never been easy for her but she always keeps pushing on and looking for the positive aspect in life.

Ann Raye said...

My mom inspires me to do more. She makes sure that I challenge myself and am happy with the choices that I make.

whittikere(at)yahoo(dot)com

Donna said...

My mother and children inspire me to do more.

mijulin said...

my mom inspires me to do more.

Marie

Tracie M Trump said...

My neighbor Gina who loves and rescues animals and also gives to those in need! tracietrump40@gmail.com

Dana Cerrito said...

My kids inspire me to do good! I am their roll model!

Nicole Miller said...

My husband inspires me to do good and be my best self!!

Teachers Market said...

My parents inspire me to give more. They are the most unselfish and giving people I know.

Rhonda P. said...

My parents are my heroes! They give of themselves each and every day as they spread God's love and salvation with everyone they meet!

DeniseL said...

My coworker Karen inspires me to do more and give more. She is absolutely amazing, always thinking of how she can help others even when she's in need herself.

lindilala said...

My mom inspires me to do more. She’s such an amazing hard working and such a great supporter of everything that I do. She makes me feel like nothing is out of reach.

Linda