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Author: OwningMyStory

A Letter to Myself on the Day of Diagnosis

A Letter to Myself on the Day of Diagnosis

Dear little Abbey,

I don’t remember when you’ll understand what it means to have Ehlers-Danlos Syndrome, but at age 7 you already know the ways you are different.  Your first knee dislocation was scary, but you didn’t know it wasn’t a normal injury for someone in elementary school.  When you dislocate your knee a second time while coloring on the floor, you are scared.  Even at your age, you know coloring isn’t supposed to hurt.  You’ll be afraid to sleep at night because you are scared to dislocate again. It breaks my heart now to think of how scared you were.  However, the fear will subside and it won’t control you. You are so strong, little one.

After another dislocation you’ll start to feel different from your friends.  Your doctor will not let you play outside at recess for a while, so instead you’ll stay inside.  Your classmates won’t understand.  Your teacher will try to explain it to them, but it embarrasses you.  You’re resilient though and this won’t phase you for long.  You’ll be back to the soccer field before you know it.

Speaking of soccer, you’ll also get these huge knee braces to wear when playing and you’ll hate them. Sorry about this.  A team parent will make a joke about the braces when they think you can’t hear them. This will make you hate your knees for the first time and you’ll cry later that night.  I promise their words won’t stick with you forever, but you won’t forget the feeling of being called out for your differences.

You’ll go through multiple tests and doctors appointments each year, but most people won’t even know this part of your life because you don’t let it define who you are.  There will be lots of pain you won’t understand, but you’ll learn to distract yourself by entering the world of books.

You will affirm your strength at age 8 when you dislocate your knee while Mom gets her haircut.  You will be scared and in pain at first, but instinct takes over and you’ll put your kneecap back in by yourself.  Having the power to decrease your pain levels without the hospital will feel so good. You’ll dislocate your shoulder and fingers a few times in elementary school as well, but you put those back in on your own too.  Can you believe how brave you are going to be? I’m so proud of all you’ve done.

You’ll start playing lacrosse in middle school, despite doctors warnings about sports.  You love it and will work so hard to improve.  Eventually by Junior year of high school, you’ll make the Varsity team.  You also join the cross country team in high school and really find your passion. Your body isn’t meant to run, but the feeling of having control over your pain while you run sets you free. You’ll work hard to get faster and will battle many injuries.  Eventually you’ll be voted Captain and you’ll thrive in this leadership role.  You have such a great life ahead of you, little one.

2013 will be your year of knee surgeries. You’ll have 3 major knee surgeries within a year and three days.  It will be the biggest challenge you’ve ever faced.  The recovery is hard, excruciatingly painful and long.  You’ll cry yourself to sleep the night before the second surgery because you don’t think you can handle going through it all again. But you do great.  The third surgery will come as a surprise after the screws break from the previous surgery.  This hits you hard because it will cancel your first racing season as a novice coxswain for the University of Minnesota.  You can handle the pain, but you didn’t know if you’d still have a place on the team after you recovered.

Luckily, you’ll be surrounded by teammates and an amazing coach who will support you and stand up for you.  Minnesota Rowing makes sure to have a spot on the roster waiting for you. Your teammates work hard to continuously support you every year.  A spine injury will eventually end your career with the team, but you’ll cherish the time you were able to participate.  You’ll run two half-marathons after these surgeries and complete your first triathlon.  You are unstoppable.

Little one, pain will accompany you your entire life.  I wish I could take that away from you, but you will take it in stride.  Your life won’t be defined by Ehlers-Danlos Syndrome. You will push your limits and defy the odds. You will accomplish so many great things and be surrounded by constant love and support from friends and family.  Hang in there.  You can do this.

I’m so proud of you.

Love,

Abbey (age 21)

 

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.