Our Saturday Century... and then some

     For this week's blog post, I thought I would take you on our Saturday 100 mile bike ride/three mile run.  I packed my camera in my bento box, along with my many gels and bars, so I could take pictures of all of the beautiful places Dave and I were able to see.  For those of you that are from the Denver area, you will be able recognize some of these landmarks and locations.  Those of you not from here will be able to see the beauty of the greater Denver area.  

     Before we even set out, I had an unfortunate allergy problem.  As I was getting my bike ready for the ride (pumping up the tires, greasing the gears), I experienced an allergic reaction in my eyes.  They were swollen, stinging, and blood-shot.  This was not Stevens Johnsons Syndrome, but just a typical springtime allergy.  That being said, my biggest concern was with taking medicine to treat the allergic reaction.  Considering that I don't know what caused my SJS, I try to stay away from all medicines when I can.

     Dave had to go to Walgreens to get some allergy medicine while I laid on the couch with an ice pack over my eyes.  Dave questioned the pharmacist on the possibility that a medication would cause Stevens Johnson Syndrome before he purchased anything.  When he got home, we researched the medicine he chose further on the internet.  We were even tempted to call my sister-in-law, Sarah, who is an amazing doctor in Wisconsin, but decided we had enough information for me to take the drug.  After about an hour, the swelling went down and we were finally able to leave for our ride.  We did not get out of the house until 11:30.

Mile 0- Starting out from our townhome in Southeast Denver.  

Mile 7- View of the Denver Performing Arts Center as seen from the Cherry Creek Bike Path

Mile 9- Dave at Confluence Park by the REI Flagship Store

Mile 10- Go Broncos!

Mile 22- A mid-ride seat adjustment

Mile 22- Hudson Gardens in Littleton, a great place to refuel

Mile 30- Beautiful Chatfield Reservoir

Mile 35- Starting the climb up Deer Creek Canyon

Mile 55- Finally made it to the top... lively downtown Evergreen

Mile 56- Beginning the fast decent into Morrison via Bear Creek Canyon

Mile 60- Lair o' The Bear Open Space (a place my mom and I would "hike" when I was recovering from SJS)

Mile 65- The entrance to Red Rocks Amphitheater 

Mile 65- The Incredible Red Rocks 

Mile 70- Slightly lost at Bear Creek Lake Park

Mile 70- A view of the Denver skyline from the front range

Mile 75- We even rode to the top of a "high point" for good measure- Mount Carbon (5,772')

Mile 101.6- A pretty slow average pace, but considering the 3,700 vertical feet of gain and an early morning allergic reaction, I'll cut myself some slack 

Mile 0- Not quite done yet... On our way back out after the ride for a quick 3 mile run (if you look closely you can see some sweet bike short tan lines)

We had a wonderful weekend in the breathtaking Colorado outdoors.  Dave and I are so fortunate to be surrounded by the majestic mountains and peaceful scenery along the front range.  I encourage you, wherever you may be, to take full advantage of all of the natural beauty that surrounds you.

In fundraising news, we have raised $1,000 for the University of Colorado Burn Center.  This money will help to support burn patients and their families, as well as to spread awareness about SJS and other types of burns treated in the Burn Center.  Thank you so much for all of your generous contributions.  With 48 days left until the Ironman race, I look forward to seeing how much more we can raise together!

Help to continue our fundraising efforts by linking to either this blog or the University of Colorado Foundation site from your Facebook page or personal blog.  A BIG thank you to Angie Caruso for highlighting this fundraiser on her blog, The Ripple Affect.  Angie highlights a different charity every week in her posts and this week, with the help of Karen Trone, showcased our Burn Center fundraiser and helped to build awareness of Stevens Johnson Syndrome.

To donate to the Burn Center, go online to www.uch.edu/donate.  In the designation field, choose "Other" and type "Burn Fund (Team Emilie)."

Or you could mail your check to "UCHF-Burn Fund (Team Emilie)" to UCHF 12401 East 17th Ave. Mail Stop F485 Aurora, CO 80045.

Reaching Out to Reach my Goal

Stevens Johnson Syndrome was a very isolating disease for me.  I felt so alone as I tried to comprehend what had happened to my body and how it could potentially happen again.  

When I awoke from the coma, I was surrounded by loved ones telling me stories about myself that I did not experience with them.  I was in an induced dream world while they were sharing the horrifying experience of watching my body slough off much of its skin.  After we returned home from the Burn Center, Dave would try to tell me stories about the breathing tubes, feeding tubes, bandage wraps, and injections, but I felt like I could never understand it the way he and my family did.  I had so many questions, yet seemed so removed from the answers, like the entire ordeal happened to someone else.  I was asleep while they watched, gowned and gloved at my bedside, as my body fought to stay alive.

Upon returning home, I would ask my mom or Dave to research Stevens Johnson Syndrome on the internet and to read to me what they found.  Each website revealed the extreme rarity of this life-threatening disease.  I tried to find others that I could relate to, that could help me understand what I was experiencing, yet my results were slim.  Beyond a few informational sites and one small foundation, very little else was out there for me.  There was not a support group to attend, a motivational survivor to listen to, a 5K to walk, or the right color ribbon to wear.  I didn't understand what I had and the doctors, as amazing and knowledgeable as they were, were unable to give me definitive answers.  They did not know what caused this and they did not know if it would return.

As friends would call to get updates, they were confused by my condition.  They would speak horrifically about the research they had done on the internet and the pictures they saw on Google, yet I could not help to explain anything.  At this point, I was still blind and on the couch, hoping to heal from a disease I did not understand.  I quickly tried to change the subject with them, deflecting attention from my embarrassing, weak, scarred condition.  My family told me my skin had fallen off in the Burn Center and had now begun to heal, but I could not see and did not know what this meant.

When I returned to teaching after two months of sick leave, I did not tell anyone the extent of my condition.  To the students, I said that I was sick and that I was much better now.  To staff, I told them that I had a very rare allergic reaction and little else.  I did not want them to do the same internet research, discovering the truth about this terrifying disease.  Then, at lunch, I would lock the door to my classroom and sleep at my desk out of exhaustion.  I would put band-aids on my fingers to hide the nails that were falling off, trying not to scream if I snagged one on a desk during a lesson.  I would wear my hair the right way to cover the bald spots and put in eye drops every chance I got to tolerate the burning pain.            

It took years to actually open up to people about what happened to me.  Vague answers started getting more specific and I began to speak freely about the pain and the fear I'd experienced.  Now, as evident on this blog, sharing the details of my condition is something I can do comfortably.   My willingness to share helps me to create a resource I did not have during my own recovery... a survivor reaching out to help educate me about Stevens Johnsons Syndrome and support me through my darkest times.

I now accept a responsibility to future patients with Steven Johnson Syndrome.  I must talk openly about what happened to me in order to help them understand that they are not alone.  Part of the purpose of my blog is to begin that discussion and disclosure.  The more people that know that this disease is out there, the less isolated and confused someone will feel that gets it in the future.  When ready, we need to share our stories to fulfill our part as a community of survivors.

I am also a SOAR (Survivors Offering Assistance in Recovery) volunteer at the University of Colorado Hospital's Burn Center.  I am trained to talk to burn patients and their families from the perspective of a survivor.  While the other SOAR volunteers experienced external burns, I offer a unique experience as an SJS/TENS survivor. While I am not a medical expert, this peer support can help give guidance and outreach to those that need it most.

This fundraiser helps to fund programs like the SOAR volunteer program, community outreach on burn information, and support for the families of burn patients.  It is important that these patients do not feel alone and have a chorus of support surrounding them during their physical and mental recovery.

I would like to extend my deepest gratitude to the Optimist Club of Monaco South.  Collectively, they were able to raise $400 for the Burn Center under the leadership of my generous father-in-law, Dick Nickoloff.  Thank you so much for helping to raise awareness of Stevens Johnson Syndrome and supporting patients and families going through difficult times.

Dick and Dave at the finish of the Denver Half Marathon!

To donate to the Burn Center, go online to www.uch.edu/donate.  In the designation field, choose "Other" and type "Burn Fund (Team Emilie)."

Or you could mail your check to "UCHF- Burn Fund (Team Emilie)" to UCHF 12401 East 17th Ave. Mail Stop F485 Aurora, CO 80045.

This Seemed Like a Good Idea Five Months Ago

The amount of Ironman training Dave and I put in on a daily basis has really started to get out of hand.  It consumes every free minute that we have.  When we are not working or fulfilling other responsibilities (graduate school in my case, coaching soccer in Dave's), we are either on the bike, in the water, or slogging down the paths around our home.  At the end of my workouts, I do my obligatory stretches, shower, eat an alarming amount of calories, and then fall asleep far too early on the couch, only to have Dave remind me that I would probably be more comfortable in bed.  Then, right in the middle of a dream where I am most likely either swimming, biking, or running, the alarm clock goes off and the routine starts again:  work, train, eat, sleep.

Our social life has come to a screeching halt.  Even when we do go out to the occasional dinner, our ability to maintain an interesting conversation is uncharacteristically low due to the constant exhaustion and soreness.  The mountains, which we once explored almost every weekend, are now enjoyed only from a distance on the running path.  Our home, which is usually neat and orderly, has become an absolute disaster area of training gear, dishes, and piles of mail.  I almost took a picture of our kitchen table to show you the state of things, but then decided against it out of absolute embarrassment.

This is an overview of next week's training, to give you some idea of the amount of time and energy we are putting into this race:

Monday: Rest Day
Tuesday: Swim 68 laps (2.1 miles), Run 7 miles
Wednesday: Bike 12 miles, Run 2 miles
Thursday: Swim 68 laps (2.1 miles), Bike 21 miles hills
Friday: Swim 68 laps (2.1 miles), Run 7 miles
Saturday: Bike 96 miles, Run 3 miles
Sunday: Run 17.5 miles

I guess the obvious question pertains to the reasons why someone might put themselves through this seven month ordeal.  Is this all for a t-shirt, a medal, and the ability to add Ironman on one's list of accomplishments?  I promise you, if that were where the benefits of doing an Ironman ended, I would have thrown in the towel months ago.

There is something empowering about gearing up your body to its absolute peak fitness level and pushing it to its limits.  You realize new things about yourself at mile 80 that are not revealed to you at mile 25.  It is invigorating and exciting to commit your whole physical and mental self towards accomplishing a task where failure is a possible outcome.  So often in our lives, we try to protect ourselves from failure by never asking too much of ourselves.  Training and racing an Ironman goes against these safer principals and calls for us to take risks and test our abilities.

Everyday we explore new parts of the world and ourselves.  Our lives are filled with curiosity and wonder.  We continue to evolve into new and, hopefully, better people.  Pushing ourselves, testing our limits, and taking risks is a part of that process.  Even if we fail externally, we have still succeeded in our own personal growth.  Our accomplishment lies not at the finish line, but privately within.

Try something new outside of your comfort zone.  It doesn't have to be an Ironman by any means, but I do hope that it involves taking risks and discovering new things about yourself.  Go forward with confidence and commitment.  Uncover all of the amazing things you are capable of!

To donate to the Burn Center, go online to www.uch.edu/donate.  In the designation field choose "Other" and type "Burn Fund (Team Emilie)."

Or your could mail your check to "UCHF- Burn Fund (Team Emilie)" to UCHF 12401 East 17th Ave. Mail Stop F485 Aurora, CO 80045.

My Support Crew

While buying new tires for my bike this week, the sales clerk asked what race I am preparing for (a frequent question for me these days).  When I mentioned the Coeur d'Alene Ironman, he immediately became excited.  He shared that he also competes in Ironman races and would like to qualify for Kona some day.  As he was selling me tires, he suggested that I buy new ones for my bike and keep an extra set on hand the day of the race with my support crew.

My support crew?  I started to laugh.  Amateurs like me don't have support crews.  People make assumptions that just because I'm doing an Ironman I'm some sort of accomplished athlete that stresses over mile splits and cadence, with a coach and physical therapist on hand at all times.  Nope, not this triathlete.  My best marathon time is a 4:20 and I have only done two triathlons in my entire life.  I am more concerned with the cut-off times of the race than what the professionals will be doing.  A support crew is hardly necessary for slower "athletes" like me.

Yet this concept of a support crew resonated with me.  Maybe I did have a support crew after all...

I think about the half Ironman I completed last June.  My "support crew" was there beside me every step of the way.  My dad made bright orange t-shirts for himself, my mom, and my in-laws to wear so that they could be easily seen while Dave and I completed the race.  As I treaded water waiting for my swim wave to start that day, I looked toward the shore and saw a big group of orange cheering me on.

These are the same people that have attended most of our other marathons and races.  My dad has actually attended all of the marathons I have completed.  They have always been there, with water, words of encouragement, and a GU-shot on hand.  They have never questioned my motivation or judged me for making these huge commitments to races, but rather stand proud of the woman I have become.

And then I thought of Dave, who has helped me throughout all of my training.  He has offered advice, motivation, and helped me refocus when I've needed it most.  He has completed almost all of my workouts with me, pushing me forward and helping me finish training sessions and races, even when I felt like giving up.

And Karen, my best friend since the age of five.  She is always ready to run any race with me, giving me  encouragement mile after mile.  I remember setting the goal of completing a marathon after having Stevens Johnson Syndrome.  She asked me which race I wanted to do and made it a priority to be there, in Las Vegas, with me and Dave throughout the entire race.  The three of us crossed the finish line together, arms raised, having shared a special accomplishment between us.

I think about the role these people played when I had Stevens Johnson Syndrome.  They sat in my room in the Burn Center, along with my sister, supporting me every step of the way.  Even though I was in a coma, their loving voices would enter my dreams.  When I went home from the hospital, they were there at our townhome helping me recover one day at a time.  Karen and I watched Anne of Green Gables curled up on the sofa, my mom and I would go on short walks together every morning, my dad would bring me much needed ice cream to sooth my blistered lips, and Dave would hold me nightly as I cried.

I think about what that sales clerk asked, about my support crew.  I absolutely have one for the day of the Ironman and a lifetime beyond.  I am so fortunate to have a group of people that care so deeply about me.

We all have support crews in our lives.  Are we fully aware of them?  Do we share with them our appreciation and thanks?  In what ways can we support them in return?

These are the questions that have stayed with me this week.  To my support crew during the Ironman, Stevens Johnson, and an entire life of ups and downs, thank you so much for holding me up every step of the way.

Some of the proceeds of this fund-raiser are going to help to the support crews of Stevens Johnsons Syndrome patients in the University of Colorado Burn Center.  Many of these support crews are from out of town, staying for multiple weeks, and without any family or resources in the Denver area.  Your donations will help to make sure that they are given assistance during this difficult time.

To donate to the Burn Center, go online to www.uch.edu/donate.  In the designation field choose "Other and type "Burn Fund (Team Emilie)."

Or you could mail your check to "UCHF- Burn Fund (Team Emilie)" to UCHF 12401 East 17th Ave. Mail Stop F485 Aurora, CO 80045.

Rediscovering What's Important

Over the past few months, the stress in my life has been growing.  With Ironman training for multiple hours every day, graduate school work constantly building up, and budget cuts in my field of education, I have been drained and unsatisfied.  My workouts have been uninspired, my papers for grad school have been lackluster, and my enthusiasm at work has diminished.

This past week, my husband and I travelled to Ambergris Caye, a small island off the coast of Belize, with my parents.  This location is well known for its snorkeling adventures, Mayan ruins, and breathtaking tropical setting.  Every day we woke up to the sun shining over the sea with cool breezes blowing through swaying palm trees.  We were able to enjoy each other's company while exploring the islands: swimming with sharks and sting rays, reef fishing, manatee viewing, etc.

Dave and I tried to keep up with our training somewhat by going on island runs or completing some longer ocean swims, but I would say we pretty much took a week off of training.  This is very unorthodox to most serious athletes.  Training schedules are meant to be strictly followed to maximize one's fitness level; taking a week off is a huge setback.

Yet on the 75 mile bike ride the day after we got back from our trip, I felt the best I have in months.  My mind was clear and focused, my body energized and strong.  I find myself actually looking forward to the 14.5 mile run I am about to go on in a few hours.  I am refreshed and balanced.

While I know that taking a week off training is not advisable and that I will not be able to take such a hiatus again before the Ironman, this past week helped me to reflect on how my mental energy has been poorly spent.  In the last few months, I have allowed negative stress to overcome my productivity... and my well-being.

Right after a life threatening illness like Stevens Johnson Syndrome, there is a reevaluation of one's values.  The daily stress we experience is minimized and the bigger picture is fully understood.  Love, happiness, and appreciation become the center of our priorities.  What a gift!  Yet as we get further from that experience, the clarity is lost.  The "daily grind" seeps back into our existence and stress is created from meaningless things.

Belize helped me to recenter myself.  Over the course of the week, my stress dissolved and my core values were in focus once again.  While I can't always afford an international tropic vacation or have the ability to put all of my responsibilities on hold for a week, I do need to become better at finding time and methods for realigning myself with what is truly important on a more consistent basis.  I cannot allow myself to drift from the most meaningful and fulfilling parts of my life: family, friends, and the joy of living.

Some people do yoga, others get massages or go on hikes in the mountains.  We all need to find regular ways to let the meaningless stress drain from our bodies, leaving us with a crystal clear focus on the most significant aspects of our lives.  While I will not be going back to Belize any time soon, I will embrace my new resolution to refocus myself more regularly on what is truly important in my life.  This does not mean that I will give up on training or on school, but rather that I will move forward with a better sense of balance and perspective than before.

I encourage you to take some time for yourself.  Rediscover what is truly important in your life.  Let the daily stress you carry fall away and center yourself on the love and happiness that surrounds you.

To donate to the Burn Center, go online to www.uch.edu/donate.  In the Designation field choose "Other" and type "Burn Fund (Team Emilie)".

Or you could mail your check to "UCHF- Burn Fund (Team Emilie)" to UCHF 12401 East 17th Ave. Mail Stop F485 Aurora, CO 80045.

Overcoming Fear

When I first came home from the Burn Center after my induced coma, I was scared of everything.  The doctors did not know what caused my TENs reaction, so no matter what I came in contact with, there was an underlying fear.  Although most Stevens Johnson Syndrome reactions are to a medication or a virus, we really had no idea.  I was skeptical of all new products that were in my vicinity: soap, foods, lotion, medications... anything.  I felt that another reaction would happen at any moment.

My fear was so consuming that I joined a group where survivors of all sorts would talk about their difficulty in coping with the stress of their experiences.  Dave would accompany me once a week to this group where we would listen to people share stories of their struggles and small successes.  Cancer survivors would talk about their fear of remission and veterans would discuss the lingering impact of their service in their everyday life.  While seemingly a random group of people, our lives were connected by our inability to move forward from a place a debilitating fear.

In our weekly sessions, they asked us to identify the source of our fear.  What am I really scared of?  After much discussion, I came to the conclusion that I was scared that my body was trying to kill me.  They asked me how I came to that conclusion.  I responded that my skin sloughed off, my hair fell out, and my nails fell off... all evidence of the fact that my body was trying to kill me.  My health was no longer a source of strength, but an overwhelming weakness to which I was powerless to control.

They asked me to dig deeper- was my body really trying to kill me?  My skin healed, my hair and nails grew back, I became stronger every day.  How can this be the same adversarial body that was intent on my end?  They helped me realize that my body was doing the exact opposite of my original fear.  My body was fighting to keep me alive.  Throughout my TENs experience, my body had the strength and resilience to fight for my survival.

This realization/transformation was endlessly empowering.  I was amazed at the ability of my body to fight this beast and recover.  It is true that what I am allergic to is still out there, that some unforeseen mistake may cause TENs to return and I will be fighting for my life in the Burn Center once again.  Yet I am filled with confidence that my body will do everything it can to keep me alive.


The human body is amazing.  My dad just did his first triathlon despite the arthritis in his feet.  My sister deals with the fear and uncertainty of undergoing repeated knee operations, yet keeps a positive outlook and remains optimistic.  My friend Marilyn overcame breast cancer and continues to be her kind, caring self.  We all have our stories of struggle and survival.  Something is out there that could hurt us at anytime, be it an allergic reaction, cancer, or anything else.  But that does not define us.  What defines us is our fighting spirit of survival and our commitment to growth.  It is impossible to stave off death; it's inevitable.  But I refuse to live my life in fear and rather embrace the opportunities for love and adventure every day.

Ask yourself the questions that were asked of me.  Is there something holding you back?  What are you scared of?  Then dig deeper- what is the source of that fear?  We are amazing individuals that can achieve wonderful things by believing in ourselves and letting go of our doubt.

To donate to the Burn Center, go online to www.uch.edu/donate.  In the Designation field choose "Other" and type "Burn Fund (Team Emilie)".

Mail your check to "UCHF- Burn Fund (Team Emilie)" to UCHF 12401 E 17th Ave. Mail Stop F485 Aurora, CO 80045.

Finding Productive Ways of Passing the Time

My friend and colleague Audra is currently training for her first marathon and came to ask my advice about how to keep from boredom when spending mindless hours exercising.  Any good coach would tell her to think about her form, to visualize herself on race day, to keep track of her pace, etc.  Although this would probably improve my performance, this is not the approach that I take when exercising.

I asked the same question as Audra to my friend Karen years ago when she was training for her first Ironman.  What did she think about during a six hour bike ride?  How could she swim 80 laps in a 25 meter pool and not go completely insane?  Her response laid the foundation for my own approach to keeping my mind busy during exercise.  I find it one of the most productive aspects of my workout.

Karen revealed that for every mile of her run, she thought of someone different that she loved.  She would focus on the amazing qualities of that person for the entire 9ish minutes, and then when the mile changed, she would move on to another loved one.  This helped her get through many long runs and I immediately adopted her strategy.

When I swim, ride, or run, for each mile or lap, I focus on a different loved one in my life.  I think about their amazing qualities, all of the ways they have helped me grow as a person, and all that I can learn from them as I evolve.  Sometimes I think of favorite memories with this person or points in their lives when they have really revealed their inner strength and grace.  The time goes by amazingly fast and my heart is fuller when I am finished.

I have been practicing this mental exercise for over two years.  I have since moved from just merely loved ones to more specific categories.  Each workout I do now has a different theme:  the most creative... courageous... intelligent... thoughtful... etc... people I know.  I spend my entire workout thinking about their special qualities, being thankful for their presence in my life, and learning from their distinguished example.

For me, having a life threatening illness really heightened the value of the relationships within my life.  SJS has elevated my sense of appreciation and admiration for the amazing people around me.  I am constantly filled with overwhelming awe of who they are as individuals and gratitude for what they have taught me about life.

To give you an example of what this type of exercising looks like in action, I will tell you about my 13 mile run today.  It is no secret that I am looking forward to starting a family eventually.  Today, before my run, I was thinking about motherhood and the amazing ability for women to put their own unique spin on loving and caring for their children.  When Dave and I set out, I began to think about the wonderful moms I knew.  I thought about their special gifts as mothers and what I can learn from them as role models.  By the end of my run, I was filled with deeper appreciation of these women and able to learn from their powerful examples.  Although I know many wonderful mothers, these were the 13 rock star moms that kept me company on my run today:

I encourage you to try this exercise.  Whether you think of a different person each mile, each block, or every few minutes, this reflection will help to open your heart and mind to the exceptional people that surround you.  By the end, you will finish feeling humbled by their unique abilities and endlessly fortunate for the relationship you hold with them.  You will be overwhelmed with the fullness of your life.

Please support the University of Colorado Burn Center by going to www.uch.edu/donate.  In the designation field, choose "Other" and type "Burn Fund (Team Emilie)".