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In Her Shoes: Logging Miles with Lupus

Kassandra and her daughter, Samantha. "Despite a wide call for photos, it seems that no one has taken any pictures of me running! I have a wonderful group of friends and loved ones who provide a fantastic cheering section at races, but apparently no one has ever brought a camera to an event," Kassandra says, " In the age of selfies, this seems a bit surprising. I would have someone take a picture of me running now, but it is negative eleven degrees outside. Isn't that an absurd temperature?"
Kassandra and her daughter, Samantha. "Despite a wide call for photos, it seems that no one has taken any pictures of me running! I have a wonderful group of friends and loved ones who provide a fantastic cheering section at races, but apparently no one has ever brought a camera to an event," Kassandra says, " In the age of selfies, this seems a bit surprising. I would have someone take a picture of me running now, but it is negative eleven degrees outside. Isn't that an absurd temperature?"

One section Tales From Another Mother Runner is called In Her Shoes, which is first-person accounts of different running situations and tales. We love running stories as much as—or maybe more than?—running itself, but we had a surplus of In Her Shoes stories...if we put them all in the book, it would've been bigger than a dictionary. So we're going to run these every other Friday for a while.

Kassandra's miles are harder to come by, thanks to lupus.

I love the idea of training in a very measured, consistent way. But I have lupus, a chronic autoimmune condition. I need to let my body guide me, or I risk making the situation worse. It is easy for me to push through pain. It is far harder to back off, run less, and rest when my body needs me to.

Unlike that good running fatigue, my lupus-related fatigue feels like I’ve suddenly hit a dense wall of fog that I hadn’t seen a few steps before. It’s that surprising. My body wants to stop immediately. So if I’m running outside, I have to make sure one of my loved ones knows my route, and is available to come get me in a moment’s notice. I can’t really just head out the door for a run.

If I didn’t have lupus, and I were super-fatigued and in a lot of pain, I would probably rest. That would make a lot of sense. The thing with lupus is physical activity can actually help decrease the inflammation. It becomes this difficult balance: Should I be resting, or should I be moving?

As a perfectionist, attorney, mom, and woman, I want to think I can do it all at all times. Lupus, which I was diagnosed with two years ago, has been both incredibly humbling—I have to be aware of my limits—and life affirming. I feel such gratitude when I can engage in the things I love. Even though I might want to stay in bed in the morning, I broaden my perspective and think, “Wait. My body is ready to go. I can handle this today.”

I am eagerly training for my first marathon, putting in the miles. Lupus compels me to do a lot of things I should do as a runner anyway, like practice yoga, keep my nutrition on point, eat an anti-inflammatory diet, and pay attention to hydration.

I don’t know what my pain level will be on marathon day. But I want to show up, even if I can only run 12—or 22—miles. I want to be able to live without regret and not let my condition define my experience.

—Kassandra (She was unable to run that marathon. "Lupus thinks my joints are particularly tasty," she says, "However, I am running religiously in the pool and am undergoing intensive physical therapy to encourage my body to cooperate. I have high hopes for a fall marathon this year.")

Feels a little insensitive to ask a question like "Are you suffering from lupus?" at the end of this post, but we're in awe of mothers like Kassandra who have another layer to conquer in order to run. Are you one of those women whose body doesn't always want to cooperate—but you're still going for it?

20 responses to “In Her Shoes: Logging Miles with Lupus

  1. Thank you so much for the inspiration to push through this challenge. I was diagnosed with lupus and 2 other autoimmune diseases a few weeks ago and I am trying to understand what my new “normal” will look like. I have not been able to run now for a few months and it kills me. This gives me motivation that my body will get to a point where it will let me run again. I will not let my diseases win.

  2. I too am running with lupus. I’m also a wife to an Ironman and firefighter (which results in a lot of alone time with our four children), I teach a fitness class at our local community center, I coach the High School cross country team, I’ll be running my 10th marathon this September, qualified for and competed in the Boston marathon this year, I’ll be running my first ultra race this fall, & I throw in a triathlon here and there to hold me accountable to also participating in activities that have no impact on my joints. Finding out I had lupus made me mad enough to want to push my limits, and on the other hand I’m so unbelievably grateful each time I’m able to step out my door and move. Like Kassandra, when I’m done I’m done! My body hits a high wall that requires some intense downtime. I feel like I’m always pushing the envelope, asking my body everyday “what can we do today?”. Our bodies are such a gift, and training with lupus has forced me to be hyper aware of this. Seeing the other woman around me who push past pain and adversity inspire me to keep on keeping on. Most importantly, I do this for my kids. I desperately want them to see and learn what a long and healthy life looks like.

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  4. Nice to be able to relate. That’s the hardest thing about lupus. I was diagnosed 4 years ago. Just took up running last year. Had a great year running, however this year set out to run a half marathon in May and within the first few weeks of training found myself in the biggest flare since my diagnosis. So here I am struggling with life let alone training. Will have to downgrade my half to a 10k most likely.
    Toughest part for me is trying to get others to understand my pain and fatigue. It’s always nice to be reminded you are not alone .

  5. I can’t imagine how challenging it must be Kassandra and others with lupus, or heck any chronic condition. Thanks for the dose of inspiration and the reminder to be grateful for my body the way it is.

  6. Once an All American athlete, fitness buff, cop. Now a brain surgery survivor (twice) mother, wife and still a fitness buff (though limited to my disliking

  7. I was diagnosed with lupus 14 years ago. Then fibromyalgia three years after that. I wasn’t very active when diagnosed because the fatigue was disabling for me. But after I started my doctor’s recommended treatment I began feeling less fatigue and decided it was time to take care of myself. I read everything I could about lupus and I started walking. Joined the Y and haven’t looked back. Started “running” when my sister in law wanted to get rid of her treadmill. I became addicted to the endorphins. About four years ago I started bicycle riding and now try to do a little of both as often as I can. Three years ago my daughter asked me to run a color run with her. It was so much fun. Since then we’ve run several more races. Because of the support from family and friends I have signed up to run my first half marathon this year at the age of 56. It also helps that my rheumatologist is a runner. I really feel that the running and biking have helped me keep a positive attitude while dealing with the lupus and fibromyalgia.

  8. Hi there. Great post. I was diagnosed with Lupus in 2000. I’ve always been an athlete. I was a Division I 4 sport athlete at Duquesne University and am now a member of Team USA and represent our country for long course triathlon. I’m also a coach and a race director and hold races with an autoimmune category. I was featured on the cover of USA Triathlon Magazine in July for how I’ve handled having Lupus while still doing all the things I do for the sport of triathlon. I’ve managed my Lupus pretty well, but this past year through me for a loop when I was diagnosed with Celiac Disease. I also have Raynaud’s and in December, I started with more symptoms that are now being considered vasculitis. I’ve been hot with an angiogram, prednisone and 3 days of IV steroids that were terrible to get my symptoms under control. This all happened the end of January. I’m now back to training for Long Courseorld Championshipns that will take place on June 27th in Motala, Sweden. I’m back to over 15,000 yards a week in the pool, 30 miles a week running and 250 miles a week cycling. It’s never easy. Knowing when to sleep in. When to take a day off, when to run a little easier or miss a workout is hard. Your body should tell you what to do, but letting your brain listen is another story. We always want to do more. We are athletes, It’s not easy. It’s never easy, but in the end you must listen to your body. If you don’t, a flare up is inevitable. I know when a flare-up is starting. I get sores in my nose and my mouth. When they start, I’m best to just start a prednisone taper and take the next few days off or a bit easier. For those of you new to Lupus, learn what symptoms are a sign of your flare-ups. Knowing this will help you manage your Lupus. If you want to learn more, visit my website at http://www.getfitfamilies.com

  9. Recently diagnosed with type 2 diabetes. Been interesting to figure out what that means for me and running. Had to fire my first doctor, but my I love my new doctor. First visit wanted to know about my running/exercise plans and called me an athlete. Me.an.athlete. Wanted to cry

  10. Thanks for the inspiration. I suffer from Raynaud’s and starting to show signs of scleroderma. These are also autoimmune disease in the same group as Lupus. I have found running has helped me control stress and mental health. One foot in front of another.

  11. I am in tears reading this. I was diagnosed a year and a half ago with lupus too. I have stopped running because I don’t know how to manage this. I identify with everything Kassandra says: I too am a perfectionist and a professional, a mom and wife. I too have found information and advice on fitness (running) to be lacking. God bless you in your positive outlook.
    How can we “talk”? I would love to support one another….

    1. Going to email Kassandra, Becky, and make sure it’s cool I connect you. Would love to get you guys to chat and support one another and get you some more happy miles. xo

  12. Thank you for this! I have found information about how to deal with autoimmune issues and running hard to find. I don’t have lupus (though I have the blood test results for it) and feel stymied by trying to figure out how to gauge what is causing pain at any given moment. Kassandra, I would be super curious to hear more about the approach you are taking in PT – I am never sure if PT is really helping. Are you in the Strava groups? I would love to “talk” to you.

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