Putting the Frosting on a Diagnosis

When I was diagnosed with MS, I had four children under the age of six. Yep, 4 under the age of 6. 

When I began experiencing numbness and tingling in my limbs, I was convinced I had a pinched nerve. I only went to the doctor because my HMO required a referral to see a specialist.


I thought: “Oh, I’m just out of alignment….I need a chiropractor….I’ve been carrying a baby on my hip forever.”

MS wasn’t even on my radar.

When I heard “you have MS,” all I pictured was a wheelchair. It was devastating.

A diagnosis that you’ll have to live with for the rest of your life feels very daunting at age 29. I was a young mom with four kids and lived in a three-story house. I just kept thinking: “I can’t be in a
wheelchair.”

To push back in defiance of my MS, I signed up for my first triathlon—which was a good coping mechanism for me.

I couldn’t control having MS, but my training was something I could control. I knew fitness needed to be a big part of my life to help me stay as active as I can… and for as long as I can.

I want to be an inspiration for my kids and to be a role model for other moms who are diagnosed with this disease. Sure, MS creates challenges. But it doesn’t mean your life is over.

Exercising helped me at such a hard time; I want to encourage people, inspire them, help them—take the scary out of doing an event.

So I created Tri 2 Beat MS, a triathlon created specifically for children, to foster a healthy lifestyle and sense of accomplishment.

Children ages 6-15 compete in age divisions for a 25-yard swim, 2-mile bike ride and .5-mile run. We currently have around 170 kids each year, but my goal is to reach 225 participants. All the money raised benefits those living with MS. 

I love triathlons, and like their mom, my kids love to swim, bike and run, so this event was a natural fit for our family. They are so excited to be involved in finding a cure for me and inspiring other kids to get active. It’s been a way for our entire family to work together to create a world free of MS.

I don’t want my diagnosis to be the boss of our life, but it’s helped my children in many ways to be empathetic. I wanted my diagnosis to build character in my kids—not take away from their growing up experience.

I’m one lucky mother. My kids are so stinking awesome.

I recently started an Instagram page called “Hugs and High Fives” to provide virtual patient outreach as there are a lot of moms with MS that are like me.

They’ve got busy lives filled with everyday activities on top of coping with MS. They may not have time to go to a traditional self-help group, and, maybe, they don’t want to.

They take their medication and may want to talk about MS some of the time, but the rest of the time they want to talk about Target and clothes and decorating. So that’s what we do. We can vent about MS, but we can also share other fun parts of our life.

I have a theory that no matter how dry the cake, with enough frosting you can choke it down.

I started the hashtag #frostingfridays. Sometimes I share my new Nikes, sometimes it’s my hubby, sometimes it’s the sunshine. It’s fun, because there are lots of hard things in life and perspective is just so powerful.

We can all choose to find the frosting in our days. In the end, MS has given me such perspective.

I hope my journey through life with this chronic illness can show others that you can find something sweet even on hard days. Maybe it’s not the card I wanted, but it’s the card I was dealt.

Whatever struggles you have–this life is the cake you got, and it’s up to you to put some frosting on it!
Tags Activism & Advocacy, Healthy Living, Parenting      2 Appreciate this
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Leann

Leann Stickel

Leann Stickel is a wife and mother and lives with her family near Peoria, Illinois. She was diagnosed with multiple sclerosis in 2009 and loves being active. To make a difference in the MS movement, Leann has started a triathlon for kids and launched an inspiration Instagram page about her diagnosis.

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    7 Comments

  • Diane Thielen   May 24, 2019 6:44 PM
    I was diagnosed 32 years ago at the age of 25 and it was devastating. I thought I would be in a wheelchair by 40 and no longer able to play the piano. There were no medications in 1987. I was also told not to have children. Now I am a Nana and have had a stable course of MS for 32 years so the diagnosis isn’t always the worst case scenario. Stay active and enjoy each day!
  • Adele J Pitt   May 24, 2019 8:40 PM
    Leann.... this IS inspiring and awesome and courageous! You are a shining beacon to many others, I am sure! And I totally agree with you.... Life is not for giving up.... it is for LIVING and doing! And if we just inspire or help one person, it is worth it!
  • Ann Stickel   May 24, 2019 10:09 PM
    An inspiration you are. And we love you.
  • Barbara Floyd   May 25, 2019 12:05 AM
    I have grandchildren with their birthmother and grandmother both with MS at age 32. Would love to let them know about your triathlon. They live in IN.
  • Karen   May 27, 2019 12:09 PM
    Great article, Leann! Thank you for sharing your story and the ways you fight for yourself and for others with this disease.
  • Karishma   May 30, 2019 10:42 PM
    Such a well written experience... Love love love your spirit Leann. Staying fit and active with a healthy body and mind is what we all need to have as mothers. Thanks for shairing your story. Really inspiring !!
  • Anne Angeli   Jul 18, 2019 6:00 PM
    Hi Leann-

    I just got your name from Louie Prouty. Our family cabin in next to theirs in MN. She told me a little about you, and thought I should reach out to say “hi”. Hi! 😊 I’m 48, & was diagnosed August 22, 2006. I’m doing pretty well currently taking Tecfidera. I’m married w/ a 15 year old son. We live in Merton, WI (west of Milwuakee). I’m in MN right now, but maybe we can chat more once I return to civilization. 😏
    - Anne