Relentless Forward Progress

Relentless Forward Progress

October 7th will forever be known to me as the day I chased my biggest dream and succeeded. It was a day where I proved to myself that I can dream big dreams AND achieve them too. Ehlers-Danlos Syndrome challenges me constantly and often controls my life, but on October 7th I overcame all doubts and worked hard to take back control of my fragile body. It was an honor to use my race to not only defy my personal…

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Not My Ending

Not My Ending

One year ago I began the Chicago Marathon, but never saw the finish line.  I vowed to make that day “not my ending” and I write to you today from cloudy Chicago to make good on that promise. In 15 short hours I’ll be standing once again at the starting line of the Chicago Marathon to once again pursue my dream. Although I’ve grown to become proud of last year’s race, I wasn’t ready to give up on this deep-seated…

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The Thing About Pain

The Thing About Pain

September is Pain Awareness Month and I want to change the way we view chronic pain. This is my spine. It happened from no injury, accident or sports. Due to EDS, my bone density is lower and daily life eventually took it’s toll on my vertebrae. Gravity is my biggest enemy, as the pressure of it can make my vertebrae feel like someone is smashing them together.  I get nerve pain in my leg from the slipped vertebra, and my muscles…

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Fragile But Unbreakable

Fragile But Unbreakable

I used to get really upset whenever someone would refer to me as “fragile” after I had yet another injury or surgery. The word itself, in relation to a person, means “not strong or sturdy; delicate and vulnerable” (Oxford Dictionary).  For so many years, I’ve wanted to nothing to do with the word “fragile.” However, the new slogan for EDS Awareness Month “Fragile But Unbreakable” has completely changed my relationship with this word. After living with Ehlers-Danlos Syndrome for 23 years, I’ve finally…

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Strength of Words

Strength of Words

This post is a little different than most of what I write. It’s a collection of other people’s words that have given me comfort, made me think or left me in awe last year.  I’ve loved reading since I first learned the skill, and often collect quotes and lessons from my favorite books. Tomorrow, April 28th, I am participating in the 11th annual Dewey’s 24-Hour Readathon and using the event to continue raising money for the Muscular Dystrophy Association for…

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Rare Disease Day 2018

Rare Disease Day 2018

Below is the video and transcript of a talk I gave on “the soul of rare disease statistics” at a Rare Disease Day Reception to lawmakers and rare disease families at the Minnesota State Capitol on February 28th, 2018.  I am very thankful to the Minnesota Rare Action Network and the National Organization for Rare Disorders for the opportunity!     95% of rare diseases do NOT have an FDA approved treatment, and 30% of children living with rare disease…

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Rare Stories: Meet Allison

Rare Stories: Meet Allison

  Imagine someone gently pulls on your arm to get your attention. Only, instead of turning to the person, intense pain erupts as your shoulder is pulled out of place from the simple movement. A situation like this is Allison’s reality and is what led to a doctor referring her for a connective tissue disorder evaluation. After five years of fighting symptoms, she received a diagnosis of Ehlers-Danlos Syndrome-Hypermobility type (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia that causes large heart rate spikes upon…

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Rare Stories: Meet Henry

Rare Stories: Meet Henry

Despite only recently celebrating his 5th birthday, Henry already has developed a strong fighter spirit.  This little warrior has Merosin-Deficient Congenital Muscular Dystrophy and lets nothing get in his way.  CMD can be hard to describe to young children,  but his school counselor has written a story about him that they share with his school classes each year to teach the kids. Henry says he usually just tells his friends his name and “that this is my wheelchair.” Most kids…

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A Year of Adapting

A Year of Adapting

2017 highlights: started my blog and sharing my story with the world earned my Bachelor of Science degree in Kinesiology ran two half-marathons with Team Momentum (in May and September) enjoyed spending the summer working at a youth recreation program completed 22 of the 26.2 miles of the Chicago Marathon in October biked 57 miles in my favorite local bike event spent a week volunteering at MDA Summer Camp with my favorite kiddos, for the 7th year in a row…

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Daring Greatly

Daring Greatly

I’ve been at a loss for words to write about my experience with the Chicago Marathon. I’ve written, re-written, and spewed incoherent sentences onto many pages. Nothing felt right. I felt like a failure for not reaching the finish line and I couldn’t find an honest way to write this. I wanted to be okay with the experience and inspire many with a profound piece. I wanted to talk about all the awesome that happened during the race, but forget about…

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