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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
  • 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.

 

Pain with a Purpose

Pain with a Purpose

It’s probably no surprise that running is not usually a recommended activity for someone with the frequent injuries and joint issues associated with Ehlers-Danlos Syndrome.  It seems to confuse a lot of people that I can have chronic pain and other EDS symptoms, yet still be able to run.  Since I recently started training for my third half-marathon, I thought this would be a good time to explain why I choose to run despite any extra pain it may bring me.  Managing EDS is all about balancing my energy and pain levels with my daily activities.  Some days running is possible, while other days I have to modify or sit out to recover.

When I run I am the same as every one else.  If we cross paths on the trail, you won’t see my scars, the medications I take, the weakened bones or the frequent dislocations.  All you’ll see is a fellow runner working to improve their endurance, strength and speed. I love that about running.  I can leave the troubles of managing a chronic illness at the door and feel like any other runner.

Although I can leave these troubles, that doesn’t mean I train the same way as a “normal” runner, or that I can ignore symptoms.  Due to frequent injury, I often have to start running again from ground zero.  I’m in a constant cycle of being “uncleared” and “cleared” to run from my medical team.  I have to respect these guidelines (for the most part…but that’s another story) and try my best to avoid running while injured.  I also spend more time on post-run recovery than a typical runner in order to protect my joints, my easily knotted muscles and to reduce pain.  This recovery process involves lots of icing, TENS unit sessions, heat, elevation, anti-inflammatory medication, compression, icy hot (or similar brand) patches and foam rolling, depending on the site of pain or soreness.  It also means I can’t run every day. I can usually manage 2-3 runs per week, but I’ve learned to work around this limitation and fit my race training into my abilities.

Running also gives a purpose to my pain. Soreness after a run is comforting to me because I know exactly what caused it. This might seem like a weird statement, but Ehlers-Danlos Syndrome rarely gives you pain that makes sense. I often don’t know why I hurt. I’ve dislocated joints while sitting on a couch or coloring on the floor, activities that are not supposed to hurt. However, running gives this pain a purpose, which is something other parts of my life cannot do.  EDS rarely makes sense, but running always does. Running might cause me more pain than the average runner, but I know my body and understand which pains are dangerous or signal oncoming injury.  Running has taught me that I am in control of my body, even on days when it feels like my body controls me.

I firmly believe running has helped me manage my EDS symptoms. It’s helped me strengthen my muscles to support unstable joints.  It’s given me the confidence to realize I can do anything I want in this world, no matter the limitations that have been placed on me.  It’s also been an incredible outlet for managing stress.  There is just something about my legs pounding the pavement that allows me to forget about my life and just run.

I have incredible friends who support me every mile, whether by joining me on long training runs or by helping me during the post-run recovery phase. I’ve also met incredible teammates through MDA Team Momentum, who join me in using our training miles and races to raise money for the Muscular Dystrophy Association and run for those who can’t. Running might be hard for me, but I certainly don’t take any step for granted. I know this ability can be taken from me at any moment, so for now I’ll keep running and using my miles to help this world for as long as I can.

Finding My Brave

Finding My Brave

This past week I feel as if my bravery has really been put to the test.

Due to my recent pain spike, my treatment plan was adjusted and my pain medication was increased to 100mg every 4 hours (or 3x a day) and Tylenol as needed.  My previous dose (100mg 2x/day) did not leave me with many side effects, but this new dose caused a lot problems.  I would take it around 4pm and by 6pm it was difficult to concentrate, my head was heavy, my stomach hurt and I really did not feel like myself.  I hated this.  It made studying nearly impossible. I’d have to read the same sentence 3 or 4 times just to understand it.

The ridiculous part is that my pain significantly improved while on this dose, but the side effects made me feel so awful I couldn’t even benefit from this result.  I reached I point where I knew the side effects weren’t going away and it was back to the drawing board for a new medication.

I felt like I lost my bravery during this medication adjustment period. At a certain point, constantly feeling like crap started to wear down my mental toughness. I was tired of fighting my body.  I was scared and worried that nothing would ever be a good solution to my pain. I didn’t want to go back to a new medication. These thoughts did not make me feel brave.

I took to writing to search for clarity on this feeling and started my writing process by reading some quotes. It was then I realized bravery doesn’t mean you aren’t scared. Bravery is being afraid and still moving on despite the fear. You are human.  You have feelings and vulnerability within you.  It’s equally as brave to admit you are tired of the fight and need a break, as it is to forge head on into the fire.

The world is filled with scary and difficult things.  I don’t know why I often tell myself that being afraid means I’m no longer brave. Because you know what? I am scared.

I’m scared of medications that make me feel like a shadow of myself.

I’m scared we will never find solution to my spine pain.

I’m scared about the lack of research for EDS.

I’m scared of having a rare disease.

I’m scared of pain, even though I face it every day.

So yeah, I’m scared.  But when I fall, I always get back up.

I might be scared now, but I’m still brave.

Fighting Through the Flares

Fighting Through the Flares

“Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.”  – Lou Gehrig in his “Farewell to Baseball Address”

I have been struggling health-wise with the transition back to college from winter break, but for some reason Lou Gehrig’s speech keeps coming to mind in the midst of these struggles. It’s easy to get stuck in a rut of negative thoughts when I’m not feeling well, but Gehrig’s speech reminds me that despite EDS, I have been living quite a lucky life. On hard days I strive to channel the strength and confidence Gehrig had when giving his powerful speech. Because if you look around, we are all pretty lucky to be here.

Lou Gehrig’s “Farewell to Baseball Address” is one of my favorite speeches in history.  Gehrig gave this speech as a way to announce his retirement from baseball after being diagnosed with ALS, a progressive, terminal disease that would ultimately take his life less than two years after this speech.  This speech captures the essence of getting a bad break and not letting it define you. Every single time I read the speech, I am left in awe of the strength and courage it took for Gehrig to get up and speak about being forced to leave the sport he loved with such poise and confidence.  He could have easily spoken about how terrible his life was, but he chose to make it about happiness.

Being diagnosed with a disease or illness doesn’t alter your ability to love your life. There is no need to feel immensely sorry for people with a disease or illness, as our lives have the same capacity for happiness as anyone else’s. It might look different from yours, but it’s still there. If you are newly diagnosed it might not feel this way, but if you look close enough at your life you might be surprised at what you find. Gehrig talks about the things he finds “lucky” in his life and they range from playing alongside the greatest ballplayers to simply having a mother-in-law who takes his side (against her own daughter) in friendly squabbles. He shows us that you don’t have to have it all to have it good.

I’m sure Gehrig wasn’t just blindly optimistic after receiving his diagnosis, he probably had his dark days and times when he struggled to cope with the reality of a terminal disease.  However, he decided his legacy would be of courage and optimism.  He decided to view life on his terms, not ones set for him by ALS.

It’s stories from other chronic illness warriors, such as Lou Gehrig, that keep me motivated to fight through the flares. As Gehrig said “I might have been given a bad break, but I’ve got an awful lot to live for.”

Visit: http://baseballhall.org/discover/lou-gehrig-luckiest-man

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.