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Running to Raise Awareness in June

 

 

Jen’s Run to Conquer the Lake & Scleroderma 

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I’m Back!

Back to run Conquer Lake in beautiful Lake Country BC!
Excited to say this will be my second year running this race.

When I reflect back to my earlier years fighting scleroderma, it’s hard to imagine how sick I was. There were certainly no conversations with my doctors about running again. We were focused on survival and managing symptoms. Running started to feel lost in all the complications I was battling.

It seemed like a life time ago that I had crossed any finish lines. It was another thing scleroderma was taking from me that I had to manage mentally. Although it was immensely heart breaking to imagine the thought of never running again, I knew that I had to keep fighting and never give up. There was always a beacon of hope in my horizon. Hope for a successful drug therapy and small miracles in my path moving forward. Maybe I would beat the odds I had been given? If my lungs could remain stable maybe I’d even run again?

Fast forward to 2022- My body was responding well to drug therapy and my lungs were stable! I spoke to my doctors about the possibility of running again. They all approved and supported my vision. I clearly remember the plane ride home from Vancouver to Kamloops . As we flew into Kamloops I could see the trails I used to run and started planning my new training journey. I knew it wasn’t going to be easy training in my scleroderma body but I had survived many battles already that this

 disease presented. I started with 400 meters of running and walking 800 meters. I slowly increased my distances over the year in 2022. I knew in all these moments that I was always a “runner’ and scleroderma could not take that from me. I decided it was time to go BIG and enter a running race! Although this was a personal journey for me there was a bigger message I wanted to help share with others battling this horrible disease. It can be done. Even with scleroderma! It doesn’t have to be by way of running. Follow your hearts and do what you love to do every day.

Each one of us living with scleroderma inspire each other along the way. We are all fierce warriors who win battles every day.

Gratitude fills my heart every day. I am happy to share positive awareness in our scleroderma community and inspire hope in my own little way. I am excited about June awareness and raising funds for continued critical research. Let’s do this!

With some determination and my coach Kacie I made it to both the start and finish line last year! It was the race of my life! Can’t wait to do it all over again this year!

See you at the finish line,

Jen & “Coach” Kacie

Diary entry: June 7 2023

Scleroderma, the life-threatening and rare disease I was diagnosed with 7 years ago, made its way into my lungs and literally took my breath away.

Before my diagnosis, I was a competitive marathon runner. I relied on my lungs, body and inner strength to get me across the finish lines. I was fit and unstoppable! When my doctors said I would never run again, I was devastated.

3 years ago, in collaboration with my doctors, I was blessed to find a drug therapy that has helped to slow down the progression, stabilize my lungs and significantly improve the quality of my life.

With approval from my doctors, I decided it was time to lace up my running shoes, embrace my limitations and focus on what I can do. I have set a goal to run a half marathon this June! Aside from my personal reasons for embarking on this journey, I want to inspire hope for others living with this presently incurable disease.

There’s no owner’s manual on training in this new scleroderma body. I have had to take direction from my multifaceted healthcare team and learn how to adapt and accommodate the damage scleroderma has done to my body.

Decreased lung capacity, skin tightness, and unexpected injuries have sidelined some of my training. Despite all the challenges scleroderma presents physically and emotionally, I pride myself on staying positive, hopeful and courageously resilient moving forward.

I can hardly wait to cross the finish line in June!!! It will be an epic day! These are the moments we live for.

A mile is still a mile no matter how long it takes!

See you at the finish line,
Jen & “Coach” Kacie


Diary entry:
June 11 2023

While it’s been challenging training with injuries, infusions, viruses and damage Scleroderma has previously done to my body, I will be at the finish line.

A couple of weeks ago, Rheumatoid Arthritis became a possible diagnosis. Tests are still being done to confirm, and I’ve been put on aggressive meds to hopefully stop permanent joint damage. My body hasn’t appreciated running as much.

My healthcare team have been the backbone of my support, along with my incredible partner Wes, who’s been by my side every step of the way. And I can’t forget my adorable “Coach” Kacie, who keeps me focused on that finish line!

If you’ve been moved by my story, you can show your support by donating to my fundraiser! 

See you at the finish line,
Jen & “Coach” Kacie

 

Diary entry: June 13 2023

I’ve had to conquer scleroderma many times over, and in training for a half-marathon I’ve had to conquer pain and exhaustion. I haven’t met many challenges I wasn’t able to overcome!

That’s why, when choosing the right half-marathon to participate in… Conquer the Lake felt RIGHT!

Conquer means to gain mastery over or win by overcoming obstacles or opposition. And that’s exactly what we’re going to do on June 18th!!

This year, Conquer the Lake donates the race proceeds to Elevation Outdoors, a non-profit organization in the Okanagan that aims to enhance the lives of underprivileged youth by providing specially designed outdoor sports programs that are accessible to all.

I’m looking forward to crossing the finish line and CONQUERING THE LAKE!

See you at the finish line,
Jen & “Coach” Kacie

 

Diary entry: June 16 2023

I am not sure if anyone in BC with scleroderma and lung involvement have ever run a half-marathon… so I hope that I can inspire others to get out and try and do what they are passionate about.

It’s so empowering to get parts of your life back with this disease. That’s a big part of why I wanted to do this run.

Through a running support group, I met an Australian woman who is an ultra-marathon runner and was recently diagnosed with scleroderma. I have also been following Greg Cohen Project Scleroderma, an athletic trainer and distance runner suffering from scleroderma. They, along with so many others, continue to motivate and inspire me to keep running.

A mile is a mile, no matter how long it takes.

See you at the finish line,
Jen & Coach Kacie

 

Diary entry: June 23 2023

Despite the 8:30 a.m. start time, I was wide awake at 4:30 a.m., nerves setting in. At 7:15 a.m., I picked up my race bib and finally met Jennifer Andrews, the run director. We exchanged countless emails, but meeting in person and hugging her was incredible.

At 8:15 a.m., the announcer delivered a heartfelt welcome, mentioning my name and that I was running for scleroderma awareness. They shared parts of my journey, and emotions overwhelmed me. Tears flowed as the reality hit me: the run was happening. Feeling pressure at the start, I found my groove once we began running.

Signs I made last year lined the course. Other runners cheered, “Jen, you’ve got this!” and “Way to go for running for scleroderma!” The supportive atmosphere from runners of all levels was heartwarming. Many inquired about scleroderma upon seeing the shirts I had made.

The last 2 km became emotional. Memories of fellow scleroderma warriors and my own journey flooded my mind. Gratitude washed over me for being present and not where I once was. It became a personal experience. Sprinting the final 600 meters, I saw Teressa, Angie, my mom, and family, realizing I had met all my goals.

Crossing the finish line was indescribable. I raised positive awareness for scleroderma in the running community and received invitations for future runs supporting awareness. Embracing Teressa at the finish line was emotional, knowing she understood my journey as someone living with scleroderma.

Scleroderma did not win that day. The experience was profound, reinforcing the importance of awareness in the face of this relentless disease. We celebrated a victory for scleroderma on June 18th, proving that it can be overcome. The excitement of doing it all again next year fills me with joy.

See you at the next finish line,
Jen & “Coach” Kacie

 

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