Coach Amanda’s Personal Fight Against Lupus

Amanda May, one of our newest coaches at RaceStart, also happens to be one of the most authentic people that I’ve come across. She radiates positivity, confidence, and is passionate in everything she does.  Recently, Amanda shared that she was diagnosed with Systemic Lupus Erythematosus  (and subsequent diagnosis of Rheumatoid Arthritis). Her story truly moved me. I would watch her train and think, “that’s one bad-ass woman…athlete…person”.  Amanda’s just one of those people that makes you want to DO better. BE better- whether it’s in the gym or just be a better human. She believes in people and genuinely wants to support other athletes and their goals.

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I have not known Amanda very long, but these are just some of things that I admire about her. I strongly believe that it’s so very important to surround ourselves with others who inspire us….who make us want to be better.  Based on that reason alone, I knew Amanda was going to be an amazing coach and addition to our RaceStart team – Along with her long list of credentials:

  • USAW Level 1 Certification
  • USAW LWC Referee Certification
  • 5 years competitive Olympic Weightlifting experience
  • State titles in three weight classes
  • Wisconsin Weightlifting State Record Holder
  • Collegiate swimmer

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Read about Amanda’s journey and her diagnosis in her own words….

“It’s Lupus Awareness Month! Every year I like to take some time to think about my life since my diagnosis (and subsequent diagnosis of Rheumatoid Arthritis) in 2010. What. A. Trip. There have been a lot of tough days / weeks / months since then – but more importantly, there has been so much good that has come of it.

I was diagnosed right after my freshman year of college. I have always been very active in athletics, so when I could barely make it through swim practices in college, I knew something was off. I was swimming my slowest times in meets since 8th grade club (yep, you read that right). By the end of the season, I had gained weight, was losing hair by the handful, and was constantly running on E no matter how much sleep I got. When I went home for the summer, I began to get increasingly sore. Every workout felt like I was having a heart attack. My athlete mindset told me that I was just out of shape; that I had to push harder, and the soreness was a good indicator that I was making progress.

Finally, one morning I woke up to go to work and thought I was paralyzed. I couldn’t move anything except slight movements of my head and hands; just enough to get my phone to call my parents for help. We immediately started the process of figuring out what was wrong with me. Luckily, being 19 at the time, there was a lot of urgency around finding an accurate diagnosis. It takes 6 years on average for most people to get diagnosed with Lupus – it looks like a million different things depending on the symptoms and blood tests on any given day. I was lucky to have only one misdiagnosis of a very rare form of Leukemia (my poor mother) before they diagnosed and started treating me for Systemic Lupus Erythematosus. My main systems involved in my SLE are skeletomuscular, cardiovascular, and respiratory (fun fact: my pleural cavity was full of fluid for such a long period of time before treatment that each of my lungs is about ¼ scar tissue – there’s a reason I REALLY hate cardio!). I was formally diagnosed with Rheumatoid Arthritis about six months later.  It took about two years of treatment after that to have more than a handful of days straight relatively symptom-free.

I have had some bad flares that have lasted months since my diagnosis, and my daily “normal” is nowhere close to feeling 100%. As a result, I have learned not to take my good days for granted, because they’re probably numbered. I am impulsive when it comes to travel and experiences, because there may come a time when I don’t have that luxury. I lift heavy things competitively, because at one time I was told I would never be an athlete again.

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But there are some really horrible days and chunks of time, and I definitely get frustrated a lot. Every dropped jar, every time I physically cannot open a drawer much less get dressed (shout out to Matt for crushing the caretaker duties), all the days that the barbell must take the backseat… I can get pretty down, BUT… I never feel bad for myself. And I never think “why me”. There are people out there suffering a lot more, with less support and fewer resources. There are so many people dealt far less fair hands. I am surrounded by strong, inspiring humans who spend their days overcoming the odds. I am lucky to have had a quick diagnosis, a rock-solid team of doctors, and a support team like no other.

If you want to learn more about Lupus (and some really exciting new R&D!) head to www.lupus.org, and as always, take a minute today to thank your body for all the cool things it does when it’s functioning normally.  Physical activity and a [mostly] mindful diet have been huge for controlling my symptoms… Never take the things you have control of for granted!”

~ Amanda May, Wisconsin Weightlifting State Record Holder, Coach

Thank you Amanda for sharing your story, being vulnerable, and giving us perspective.

Coaches like Amanda are an encouragement, and commit their lives to helping others achieve their fitness goals – no matter the obstacles they face.

Take a look at our exclusive discounts on memberships this Spring for new members and students .

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