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Author: OwningMyStory

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.