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Category: My Story

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 dream of mine.  Not everyone has agreed with this dream of mine, so ahead of race day, I wanted to share with you why I’m trying again.

To those who have supported my fundraising for the Muscular Dystrophy Association – I run again to use my muscles to fuel a stronger future for those with muscle disease.

To my heroes with muscle disease who I run to honor – you have taught me more than I ever thought possible about embracing disability, adapting life and setting big goals. I run again for you. 

To friends and family – I run again because I’ve felt your love and support of letting me choose what’s best for my body.

To those with rare diseases – I run again to help show a bad outcome does not define your story.

To those with disabilities – I run again to help pave the way for others to believe in themselves and their abilities, even if the first try doesn’t go well. 

To my MDA Team Momentum teammates, coaches and staff – I run again because of your support, coaching, encouragement and inspiration. I’m so honored to run alongside you.

To those who don’t support my decision to run again – I run again regardless, not to spite you, but because I am in control of my choices. My heart knows my limits and I’m not going to give up on a goal because others don’t believe in it. 

I am starting this race with the full acknowledgement that a finish just may not be in my cards. However, this won’t stop me from giving it my absolute all to make it happen.  We are never guaranteed an outcome when we train, yet we’d make it nowhere if we let that stop us. 

It’s for these reasons I didn’t let my story end on that lonely curb at mile 22 last year. 

I hope I run past that same curb tomorrow and smile. 

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 will not live to see their 5th birthday.  One rare disease, spinal muscular atrophy, is the number 1 genetic killer of kids under the age of 2. Additionally, 80% of rare diseases are genetic in origin and in total, 1 in 10 Americans are living with some form of rare disease.

That’s a lot of data, but these are the points that are often brought up when discussing rare disease.  Although accurate, these numbers are missing life. Every statistic brings together the lives of many people fighting rare disease in a world that does not offer a lot of options to such patients.  Data is helpful when looking at big picture, but it lacks a soul – a story.

This month I launched a “Rare Stories Interview Series” on my blog, where I’ve had the honor of listening to other rare disease patients tell their story.  In time, I will feature each patient’s story, as means to give faces to these large statistics.  It is my goal to give more rare disease patients the incredible experience of sharing their story with the world while bringing awareness to their conditions.  I created my blog, OwningMyStory.com, just over a year ago, as a way to finally tell my story of life with a rare disease.  As a kid with Ehlers-Danlos Syndrome, I never wanted to talk about this thing that made me different.  However, as I got older, I realized by denying this part of my story, I was losing an opportunity to impact the future of rare diseases.  I was tired of pretending life with a rare disease is easy, and as a result the experience of finally being open about my health and challenges I face was extremely cathartic and increased my confidence immensely.

I wanted to then give other rare disease fighters the chance to feel the power of “owning their story”, especially those who might not have the means of sharing their story any other way.  In a community based on uncommon diseases, stories like this build community.  They make us feel less alone in our fight.  One woman told me “it’s because of advocacy like this that [she] still feels hopeful of the future”  while another said “[they’ve] kept quiet for years about [their] rare disease, and this project is the outlet [they] needed.”

The stories I’m working on represent a small portion of the statistics, but are the soul of the numbers. Our stories give this data meaning.  So, I urge anyone working in rare disease advocacy or health policy to take the time to listen to rare disease patient stories. The rare disease community may sound small, but as we come together to share our stories, our strength grows.  We find power as we realize our stories are more alike than different.

As Brene Brown writes, “When we deny the story, it defines us. When we own the story, we get to write a brave new ending.”  It’s now up to us to write a new ending for the story of rare disease.

Thank you.

 

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
  • joined a summer handcycling group for weekly rides (I loved handcycling!)
  • enjoyed a long weekend of camping with friends
  • started working part-time this fall to minimize back pain from sitting during work hours
  • attended a Rare Disease Advocacy Summit to learn more about advocacy efforts in my area
  • learned how to sit ski and classic ski from Paralympic coaches at a local clinic in December
  • signed up for another adaptive sports group to sit ski in 2018

 

Reading my list of 2017 highlights makes me excited to see what a big year 2017 was, but it also feels incomplete.  In between those accomplishments were many battles (both large and small) I fought in order to reach my goals. The list below isn’t necessarily what I want to remember 2017 by, but I can’t discredit the important part they played in helping me grow this year.

I also:

  • finished almost 9 months of initial PT for my spine stress fractures in April
  • started using a prescription pain medication daily, which has greatly improved my quality of life and activity level
  • developed tendinopathy in my forearm (brachioradialis tendinopathy)
  • completed 4 weeks of OT and Hand Therapy to reduce pain in my forearm + hands so I could type and write again
  • added additional finger and thumb splints as needed, to reduce hypermobility and increase hand strength
  • started using forearm crutches to relieve pressure/pain on my spine when standing and walking, which has been an amazing tool
  • had two minor GI procedures under anesthesia
  • injured my knee in June
  • spent 3 months recovering from knee injury at my favorite PT clinic
  • completed a round of antibiotics for non-specific inflammation in my large intestine
  • developed a secondary infection from the antibiotics and completed another course of medications to kick that infection
  • spent another 3 months at a new PT clinic focused on my spine pain with small improvements

Life with chronic illness is full of these lists – the “normal” things you do alongside the battles you fight to make those happen. EDS tags along on every adventure I have, but it doesn’t have to always take center stage. My body will always be prone to overuse injuries (just from existing) and is likely to continue developing early onset arthritis from repeated joint injuries. A few of my vertebrae will likely stay “functionally fractured” from lack of healing, low bone density and juvenile degeneration, and my knees are likely to continue to cause problems down the road.  These are the facts of my body, but I’m not willing to live contained by those boundaries.  It’s my job to understand the way my body functions, so that I can select goals and activities that work for me without ever saying “I can’t”, but instead “let’s see how I can make this happen.”

I’m most proud of myself for breaking out of my shell and getting involved with adaptive sports in 2017.  I used to feel like I never had “enough” of a disability or impairments to be able to benefit from adaptive sports. However, my local adaptive sports coordinator and program volunteers have never once made me feel like I didn’t belong. They have been so willing to learn about my limitations and adapt whatever equipment we were using to work with my body. It’s been such a freeing experience learning there are ways to participate in my favorite sports without hurting my joints or increasing injury risk.  Joining adaptive sports has taught me I have the power to be creative in adapting to and overcoming anything that gets in my way. It’s opened up a whole new world for me, and I’m excited to see where 2018 takes me.

 

In This Moment

In This Moment

Life has been a whirlwind of activity lately, and since May I’ve:
– graduated from college
– ran a half-marathon with MDA Team Momentum
– moved back to my hometown
– spent a week volunteering at MDA Summer Camp
– started two new part-time jobs working with youth summer recreation programs.

EDS has also been along for the ride on this journey, and caused some excitement of its own in my life.  Since May I’ve also :
– used a wheelchair for the first time to conserve energy and reduce pain while visiting a museum with a friend
– injured the already worn cartilage in my right knee
– started physical therapy for my knee (again) along with my spine at my favorite clinic
– joined an Adaptive Cycling program, where I am learning to handcycle
– started wearing finger splints to reduce pain in my hands from hyperextension

Both lists are a highlight of what I’ve been up to recently and things I am proud of (minus the new knee injury), yet it’s the first list I find myself sharing with others because it is easier to understand. My second list might seem to describe ways EDS has intruded further into my life, but in reality these are moments I chose to be in control. They are times I accepted that asking for help does not make me weak.  They are good moments. Having a chronic illness helps me recognize the importance of finding the good in each day. Not every day is great, but I believe good can be found in each day.  Sometimes my highlight is just being able to sit without pain for 15 minutes while other times it’s attending an event with friends without being distracted by symptoms.

Celebrating accomplishments, whatever they look like, can get us through anything.  I believe our simple accomplishments should be celebrated the same as our large ones.  In the midst of a tough day, where my biggest accomplishment might only be not needing to take extra pain meds, it’s dangerous to think that this isn’t enough. Whatever your accomplishment is in this moment, celebrate it and trust that it is enough.

Another powerful part of staying in the moment is it’s ability to calm our worries about the future. I struggle with this one a lot, but I work hard to calm my mind by staying present in today. I’ve recently started the “trek” of working with my medical team to determine the cause of some symptoms that have plagued me this past year, resulting in unexplained weight loss and prolonged periods of feeling unwell among other things.

As a result, I have been scheduled for a set of outpatient diagnostic procedures next week that require me to be put under general anesthesia.  Although I have responded fairly well to anesthesia during prior surgeries, patients with EDS have an increased risk of complications, meaning every procedure carries a slightly higher risk than average. It is this part that scares me, but I trust in the medical team caring for me. I’ve also never had these tests performed, which only adds to the unknown. I don’t usually enjoy the unknown parts of life, and this procedure definitely falls into that category. However, staying grounded in the known facts and gratitude of today helps take the worry away about tomorrow.

As my favorite Harry Potter quote reminds us,

    “What’s comin’ will come, an’ we’ll meet it when it does.” – J.K. Rowling, Harry Potter and the Goblet of Fire

Time passes whether we want it to or not, so it’s best I focus on today and meet the future with a brave smile when it comes.

Strength: Redefined

Strength: Redefined

I strive to be strong.  I love being active and find joy in pursuing physical activity.  As a result, the main definition of strength I connected with was about having increased physical power. This kind of strength is visible and something everyone can understand. It’s what every athlete strives to be.

However, life with Ehlers-Danlos Syndrome doesn’t always let me be the type of strong I want to be.  I have athletic aspirations that I am not certain my physical abilities will allow. I want to run full marathons, complete an Ironman triathlon and ride my bike across the country. On my good days, these dreams stay alive while I train and and gain the physical strength needed to achieve my goals.

It’s on the bad days when doubt comes creeping in. These are the days I don’t feel strong. The days when I wake up with intense joint pain that won’t fade despite my every attempt.  The days I come home from classes and all I can do is lay on the floor because its the only position that slightly eases my back pain.  The days I’m exhausted and have barely eaten because it hurts too much.  These are the days I grieve the life I wish I could lead. Even on these days, the athlete in me still yearns to get active even though it’s not possible.  It’s hard to know when to push through something or just stop and listen to your body.

Once during a fairly rough string of days, I was telling my friend how weak I felt because I wasn’t feeling well, but still really wanted to get my workout in. I was frustrated of letting my body control my decisions and wanted to feel the strength of a long run again. It was then she suggested that maybe I just needed to redefine what strong meant to me.

It made sense, I was struggling with the mental aspect of the bad days because I felt like I wasn’t as “strong” as I would have been on a good pain day. So by default, I felt weak.  When in reality, these bad days are actually when I am my strongest.

I’ve realized strength isn’t only about winning races or lifting lots of weight.  Maybe strong is just being the best version of myself.  Strong is knowing pain will accompany my life, but still setting high goals to achieve.  Strong is accepting the bad days and understanding limitations.  My life might not be “average”, but that doesn’t mean I don’t get to feel strong.  Strong is different for everyone.  What’s your definition of strength?

 

Smiling Through the Rain

Smiling Through the Rain

2016 did not go as planned.  I’m learning to understand this is okay, but getting to this point has not been easy.

Although I wouldn’t put this past year in my “top 10 list”, there were still some incredible moments.

I joined MDA Team Momentum, ran a half-marathon and raised over $3,000 for the Muscular Dystrophy Association.  I volunteered for an amazing week at MDA Summer Camp.  I bought a new road bike.  I completed my first triathlon.  I visited a friend in Washington and saw the mountains.

Looking back on these moments make me proud of the life I’m living.  Many of my greatest accomplishments come from doing things I was told I would never do.  I thrive off the ability to be in control of my body and push my limits through various endurance sports.

Despite being able to overcome the symptoms, every so often EDS knocks me down.  It comes with the territory of having a rare, chronic illness. This is what happened in 2016.

Chronic pain is an unfortunate symptom of EDS.  Each patient feels this pain differently, but for me my spine, knees, ankles and hands bear the brunt of my pain.  My spine pain was a late addition, but began in 2013.  The pain was tolerable until I pushed myself past my limits with a new physically demanding job in 2015. This did not end well and my pain soon became intolerable.  Some days just a deep breath was enough to aggravate my spine.  Initially, I was diagnosed with Juvenile Degenerative Disc Disease, a herniated disc and a stress fracture.  Super fun.  A round of steroids and an injection brought my pain back down to a tolerable level.

Through all this I maintained my position as a coxswain on my University’s rowing team, a position I loved.  However, during Spring of 2016, my spine pain increased again. Sitting in the boat for practices and races became increasingly difficult, but I was determined to continue until I thought that it was no longer possible.  I wanted to live my life on my terms, not ones set for me by EDS.

Unfortunately, this was not in my cards.  A new flare in the Fall of 2016 brought me to a new orthopedist who requested another MRI, a DEXA scan, multiple x-rays and blood tests.  And this is where 2016 really went downhill.

I learned I developed another stress fracture as well as a chronic compression fracture, resulting in a 50% loss of vertebrae height.  It was also revealed that my EDS has caused low bone density, which is why I have a fracture that usually occurs in the elderly population.  At first, this information wasn’t that hard to digest.  Just another thing I’d live with, I was used to it.

That is until at a follow-up appointment my doctor and athletic trainer determined I was no longer medically eligible to continue being a coxswain for my Senior season.

This hit me hard.  Most of my friends were on the team.  My social life involved being with my teammates. I loved the thrill of racing on the water.  And now, in the span of one 30-minute appointment, it was all taken from me.  The visions I had of my senior year.  My hopes for the season.  The identity I’d built for myself as a collegiate athlete.  For the first time, I was not in control of my health.  My health had taken control of me.  My health determined when my season ended, not me.  My mind and body are not in agreement and this reality scares me.

This was is harder to understand than the physical pain.  I’d love to talk about these emotions in the past tense, but I’m not there yet.  The initial shock, confusion and “lost” feelings have lessened, but thinking about the upcoming Spring semester and season I won’t be a part of still makes me sad.

I’d like to be cleared to run again.  I’d like to be able to sit through a class without pain.  I’d like to be in control of my body again.

This is where my writing project comes in.  I’m writing to gain personal clarity, and help others along the way. This is my story.  It’s not pretty, simple or easy to understand.  It’s often complicated and confusing.  But it’s also full of love, beauty and amazing accomplishments.  Ehlers-Danlos Syndrome will always be a part of my story, but it doesn’t get to be the main character.  It might be raining now, but I might as well smile.