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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 spasm from being overworked.  I’ve been told it’s unlikely I’ll ever sit without pain again. This is life with chronic pain.

My PT at Gillette today told me “your smile is so genuine, despite the pain you so obviously feel”, as we discussed my activities/abilities while I fidgeted relentlessly trying to get my spine comfortable while seated.  Her message resonated with me, in that I don’t believe smiling while also feeling pain makes the smile any less authentic. A smile through pain is a conscious choice to choose joy, however fleeting, in that moment.

It’s a common phrase in the chronic pain community to say that you paste on a “fake smile” to get through the pain while out in public, but I don’t find anything “fake” about a warrior carrying on through their battle and enjoying life despite the rain.

I want you to understand that people with chronic pain look like me. Pain is confusing and often awkward to talk about because it makes people sad and uncomfortable. However, this is my life and I am happy.  Pain has been with me since I was a young child and I adapt. Chronic pain is this thing that lurks in the shadows some moments and other moments it jumps in front of you and DEMANDS attention. Pain will accompany me whether I’m running/walking or just sitting, so I often choose to be active.  Others may choose differently and both are okay, but the pain is real and our smiles are genuine.

 

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.

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?