Culture

She Battled Through Lupus And Frequent Immune Infections To Finish

Ashlie Huss decided to fight lupus by running a half and raising money to support research.

This Runner Refused To Be Stopped By Her Diseases

I am a runner whose greatest strength and greatest weakness are my own body. I’m also a dreamer, an overachiever and an optimist. I love tutus, all things sparkly and dancing in the rain. If you saw me, you wouldn’t see the diseases ravaging my body, with the most prominent being lupus and CVID.

You can’t really see the severe pain, fatigue, bouts of nausea or the multitude of other things I deal with daily. I take hundreds of pills every week to try and remain “functional.” There’s no cure, and lupus is a potentially life-threatening disease.

Once I was diagnosed in August 2011, my whole world was thrown upside down. The active lifestyle I knew was no longer the life I could lead and I was thrown into a new world.

In spring 2014, I was sick of being tired and tired of being sick. I missed my athletic ways and knew I needed to make some changes in my life. I was inspired by someone that recently finished Disney’s Princess Half to try running.

Related: Magical Photos From The Disney Princess Half

I quickly fell in love. Through running, I found a much-needed sense of peace and a sense of normalcy. It has inspired me to keep dreaming, to keep fighting back and to make long-term goals.

I went from, “Maybe I should try a 10K,” to knowing I wanted to run a half, and Disney’s Princess Half had to be my first. In the midst of training for that, I kept on getting infection after infection. I knew something was going on; that’s when I was diagnosed with Common Variable Immune Deficiency (CVID).

CVID essentially means there is something innately faulty with my immune system so the infections I get are much more frequent and more severe than most. There is no cure and my treatment involves sticking needles in my stomach every week to give myself immunoglobulin-replacement medication.

With that diagnosis, I became overwhelmed by everything—new medications, treatment protocols and even more restrictions. I became even more aware of all the germs all around me. Running helped me cope with that diagnosis, as it was the only time I felt free—free to truly breathe, free to live. It gave me a much-needed break from the constant barrage of even more medical stuff. When I’m out there, I love how my biggest concerns are where I want my disease-ridden body to carry me and listening to the beeps of my GPS watch.

For my first half, I knew I wanted to spread lupus awareness, so the back of my shirt said “Even Princesses Get Lupus.” That was my first time ever wearing anything that mentioned lupus and it was such an empowering experience. I got so many comments from those that had lupus or knew someone with it.

After I crossed that finish line, I was hooked. The race itself was such a struggle, as I was getting over two infections, but that didn’t matter. I did it and I accomplished something I used to believe was impossible.

Since then I’ve ran many more halfs, but I had even bigger goals and dreams. I knew I needed to do more than spread awareness at Princess Half this year. I worked with the Lupus Foundation to create Team No Lupus. This gives individuals the chance to participate in endurance events all throughout Florida while fundraising for the Lupus Foundation. This was HUGE, as they have never done anything like this before and it was only due to my partnering with them and persistence that this happened.

Related: 5 Fundraising Tips For Your Next Charity Race

Princess Half Weekend 2016 was our first event and we raised over $5,000! I’m so incredibly proud of everyone who made this possible. For the rest of the year, people are participating in different running events while raising money for Team No Lupus. I’m excited for the future and what Team No Lupus will be able to accomplish! I also have dreams of doing something similar with the Immune Deficiency Foundation.

Doing this makes me feel like I’m doing something tangible to fight back. I could just sit idly by and watch these diseases ravage my body, but that will never be me. I’m a fighter and I’m going to keep fighting every day for the rest of my life.

I want to do as many races as I can until my body will no longer let me run. Until then I’ll keep running for a lupus free future and for all my lupus and CVID warriors out there. I know that every day I’m able to get out of bed to run is a “good” day. Every step, every mile and every medal is a celebration of courage, life and defying the odds.

Read more about Ashlie’s journey on her blog Even Princesses Get Lupus and on Twitter @a_huss.