Here We Go!

I have spent the day packing for our trip to Coeur D'Alene.  At this point I have thought of every conceivable scenario on race day and hopefully have prepared myself properly.  I have visualized the transitions in my mind, calculated my nutrition plan, and thought of all weather possibilities.  I packed back-up everything just in case something unforeseen were to happen.  I have taken too many last-minute trips to various stores to count.  But now, as it stands, there are two packed bags and a wetsuit on my bed, waiting to start our journey north.

After an early morning bike and run tomorrow, Dave and I will start off in the Subaru for the 17 hour drive from Denver to Coeur D'Alene.  We did a similar drive to the half-Ironman in Lawrence, Kansas last summer. There is something special about driving to an out-of-town race for me.  You are able to enjoy the countryside and each other's company more completely.  You embark full of anxiety and excitement and leave full of stories and satisfaction.  With a few books on tape, podcasts, and lots of music, the time should pass quickly.

Friday and Saturday will be spent in Coeur D'Alene doing all we can to prepare for the race.  We will pick up our race materials from the athlete check-in and begin to assemble our transition and special needs bags.  Driving the course, swimming in the chilly water, and attending course talks will also be on our agenda.  Both sets of our parents will be meeting us up there, so we will have the opportunity to have a nice meal together on Saturday night.

I'm sure those few days in Coeur D'Alene before the race will be intimidating and nerve-wracking.  When you check-in on Friday at an Ironman, they give you a wrist band that you need to wear the entire weekend to have access to parts of the course and the transition areas.  The weekend of the race, you see these wrist bands on almost everyone.  When this happened during my first (and only) half Ironman, I started to feel like I didn't belong there, like I was an impostor.  I felt like the other people with the wrist bands were real athletes and I was just a tourist.  I think we all feel this way the first time we do anything, but we need to move forward despite this feeling.  Through a confidence in ourselves and a faith in our training, we stand on that starting line as equals to everyone else, excited to begin the fun and challenging day ahead.

I hope to blog one more time before Sunday.  If not, I want to thank you for all of your support.  In the past few weeks, I have received numerous cards, emails, comments, and Facebook messages wishing us well.  All of you will be with me throughout the race, helping me put one stroke/pedal/foot in front of the other.  Your immense encouragement has made such a difference in my life.  Also, a BIG thank you to Karen and her family for housesitting for us.  They will be visiting from Arizona, staying at our house while we are away this weekend and also for a week after our return.  I can't wait to spend time with you, Greg, and beautiful Eli when we get back!

Athlete Tracker

You will have the ability to follow us online the day of the race.  I'm sorry that the directions I'm about to give you are very vague, but I don't really know too much about it.  If you are reading this and have followed an Ironman athlete on race day before, please post any details that you know of in the comments area of this post.

On Sunday June 26th, go to either ironman.com or ironmanlive.com (I'm not sure which one will work best).  There should be an athlete tracker link for the Coeur D'Alene Ironman.  You can start tracking us as early as 7:00 am (Pacific Time) and the race closes at midnight.  You will be able to look us up by last name (Nickoloff), but if not, my bib number is 244 and 1177 is Dave's number.

To donate to the Burn Center, do 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.

The Channel 7 News Story

I hope to be smiling this
big during the Ironman!

I am very excited to say that Sunday night's Channel 7 (ABC) nightly news included a story about my Ironman journey after SJS.  Below is a copy of the text and a link to the Channel 7 site where you can see the entire video.  At first I was nervous to do the interview, but now I am really glad that I did.  So many amazing people have reached out to me since Sunday (other survivors, family members of survivors, triathletes, etc).  You will all be in my thoughts during the race... IN 6 DAYS!

Link to the Story

Woman Overcomes Rare Disease To Compete In Ironman

Emilie Nickoloff Hopes To Raise Awareness About Stevens-Johnson Syndrome

Doug Schepman, 7NEWS Reporter

POSTED: 4:35 pm MDT June 16, 2011

UPDATED: 10:15 am MDT June 20, 2011

DENVER -- Running on the Cherry Creek Trail, Emilie Nickoloff and her husband, David, are training for the race of their lives, an Ironman triathlon.

The Ironman is a "2.4 mile swim, 112 mile bike ride, and then a marathon, 26.2 miles," Nickoloff said.
She's in the best physical condition of her life. It's a stark contrast to four years ago when Nickoloff was admitted to the University of Colorado Hospital burn unit with a rare and potentially lethal disease.

"I had a fever of 104 and finally, we decided it was time to go to the hospital," Nickoloff said. "We noticed there was a rash forming on my arms. It started to spread all over my torso."
She was diagnosed with Stevens-Johnson syndrome.

"It's an autoimmune reaction," said Dr. Gordon Lindberg, medical director of the University of Colorado Hospital burn unit. "You take a medication, and for reasons that we don't understand completely, the body forms an allergic reaction to the skin, and the skin sloughs off."

The reaction also affects the mucous membranes, especially in the mouth, nose and eyes. In severe cases, patients can lose their vision. Nickoloff's vision was saved through cutting-edge amniotic membrane transplants.

"I woke up from a coma blind, and it took about a month to get my sight back. So people were telling me that I had burns all over my body, but I didn't know what that meant," Nickoloff said.

Lindberg said Stevens-Johnson syndrome patients are put into a medically induced coma so they don't feel the extreme pain of bandage changes and wound care. The UCH burn unit treats SJS patients from a five-state region. Still, it only treats between 15 and 20 cases each year. The rare nature of the disease left Nickoloff feeling isolated.

"I was trying to reach out to people, but there really wasn't anyone to reach out to," she said.
Now, having made a full recovery, Nickoloff is volunteering to share her experience with other SJS patients in treatment.

"I'll be talking with them and explaining my experiences and what it was like to come home and start the long recovery process," Nickoloff said.

She is also supporting SJS patients by raising money and awareness for the disease by competing in the Ironman triathlon; all the while, she is choosing not to dwell on the possibility of another reaction. In her case, doctors are unable to identify the cause of her reaction.

"A medication is out there that could kill me, potentially, and I don't know what it is," Nickoloff said. "But instead of being inhibited by that fact, I can still go out and accomplish great things everyday, and I hope that other people with Stevens-Johnson syndrome can take kind of a fearless approach to moving forward after the disease."

To learn more about Nickoloff's story or to track her Ironman training, read her blog.


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.

Three Goals Down... One to Go!

I had four goals when I started this process close to seven months ago:

1.  Raise money for the Burn Center Fund and the Burn Service Crisis Intervention Fund

     Currently, the University of Colorado Foundation has received 31 gifts totaling well over $1,000 in the name of "Team Emilie."  The generosity of loved-ones and strangers alike has amazed me.  Thank you so much for helping us to support burn victims and educate the community about burn safety through your contributions.  There is still time for donations to help us raise even more.

Dave at Grant Ranch Lake
for an open water swim.

     Next weekend, Dave and I will be attending a University of Colorado Hospital Burn Center golf tournament fundraiser where we will be acknowledged for your contributions.  Meeting others also dedicated to giving back to the hospital is something I am greatly looking forward to.  I promise to post pictures after this exciting event.

2.  Reach out and inspire other Stevens Johnson Syndrome Survivors

     Through my blog, I have met two SJS survivors directly and interacted with many others in online groups I have joined over the past few months.  Kendra is one of the amazing SJS survivors I have met along my Ironman journey.  She is a runner from Wisconsin who brings together other survivors to participate in races with Team SJS.  The highlight for their team is running the Fox Cities Half-Marathon every year.  One of these years I hope to join them.  Check out her touching blog: One Foot in Front of the Other

3.  Spread awareness of Stevens Johnson Syndrome

     You would be amazed at how many hits my blog gets daily.  I average about 20-40 hits a day with over 1,800 all time pageviews.  Undoubtedly, many of these pageviews are the same few devoted people time and time again (Mom, Jan, Karen).  To my regulars, I appreciate your dedication and enthusiasm.  Yet other pageviews are people that did not know about SJS and are just learning about its devastating effects.  Thank you for your curiosity, compassion, and willingness to learn.

The finish line at the Elephant Rock
100 Mile Century Ride.

     I have also helped to spread awareness outside of this blog.  Dave and I were interviewed for a human-interest news story by Channel 7 ABC ( I will upload it to the blog when it airs).  I also posed in a photo shoot for a University of Colorado Hospital print ad to be run in the 5280 magazine for their August 'best doctors' issue (I have a tiny headshot in the ad).  My friend, Angie, also did a spotlight of my story and SJS on her blog, Ripple Affect: Awareness Leads to Action.  I never thought my little story would get this much exposure.    

4.  Complete an Ironman

     Oh yeah, then there is the Ironman.  Wow, only 13 more days!  The travel details are set, our workouts are tapering down, and all last-minute gear has been purchased.  I have dedicated most of my free time over the last seven months to training for this iconic race and now it is almost here.  My head is plagued with anxiety and doubt, but underneath all of that is a confidence and enthusiasm filling my entire body.  I feel energized and prepared; I know that I can do this.  I AM READY!  Coeur D'Alene, here we come!

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.

Ironmaybe

I am a very anxious person, always finding things to worry about.  My imagination plays out the 'what ifs' in my head and I become preoccupied with the potential for disaster.  My feelings toward the upcoming Ironman, 25 days away, are no exception to this tendency for worry.  The race has begun to consume my thoughts.  While this does have the benefits of distracting me from other stress in my life (starting a new job next year, finishing my final three graduate classes this summer), it also makes me very nervous for the big day, June 26th.

My biggest Ironman fears pertain to the looming cut-off times for the race.  I am not an accomplished athlete- all races that I have done in the past have been at slow, comfortable paces with little concern for my finishing time.  While the 17 hour Ironman cut-off time seems generous at first, when looking at the cut-off times for each leg individually, my anxiety grows exponentially.

2.4 Mile Swim: Course closes 2 hours 20 minutes after the official start

A dorky picture I sent to my mom
when I first bought my swim gear in 2009

Due to chronic ear infections as a child, I never learned how to swim.  While I could doggie-paddle for survival purposes, any formal introduction to strokes and technique was abandoned to maintain my health and well-being.  When I decided to attempt triathlons two years ago, I knew I needed to learn how to freestyle swim.  I would watch You Tube swimming videos and lie on the floor of my living room, trying to figure out how to kick, stroke, float, and breath all at the same time.  I later moved into the pool at a local gym, only able to make in a few strokes before holding on to the wall.  Clearly, swimming is my biggest weakness and to this day, I have never taken a lesson.  I am self taught, moving through the water at a snail's pace.

Last weekend, Dave and I went to Grant Ranch Lake to practice open water swimming for the first time this season.  The chilly mid 50's water temperature did not detour us from finally taking our swim training out of the pool.  The Ironman will have a similar water temperature and we need to get used to that initial shock of the cold.  I swam 2.3 miles in 1 hour 45 minutes (although it was probably much longer because I can't swim in a straight line to save my life).  If it were the race, I would have 35 minutes to spare... this does not seem like a lot of time.  With the other swimmers bashing into me during the mass start, I could lose some of those precious minutes.  If I stay too long on the beach waiting for things to clear out, I could lose even more.

112 Mile Bike: Course closes 10 hours 30 minutes after the official start (8 hours 10 minutes for the bike alone)

Today I completed my ride at 16.2 mph.  If I complete the bike portion with an average of 16 mph, the bike will only take me 7 hours and I will be finished in plenty of time.  Even if I average 14 mph, I will successfully make the cut-off time.  While this seems very manageable, this bike also has the most unforeseen variables: an unrelenting headwind, multiple flat tires, a broken chain, a fall.  Ironman Coeur d'Alene is also a very hilly course with two large climbs.  The hills plus any of the other variables could greatly reduce my average mph making a 14 mph ride much tougher than usual.  I hope that my  Elephant Rock Century Ride this weekend (with over 6,000 total vertical feet of gain) will be good practice for what is to come.  If I can finish that ride with an average pace of over 14 mph, my confidence will be restored.

Dave, Karen, and I at the finish of
the Las Vegas Marathon

26.2 Mile Run: Course closes 17 hours after the official start   (6 hours 30 minutes for the run alone)

I think to myself, "Just make it to the run... Just make it to the run."  Running is something I love; I have completed multiple marathons, half-marathons, 10Ks, and 5Ks before.  I know that I can easily do a marathon in under the required 15 minute miles.  I've hit the metaphorical "wall" before and run through it with determination and perseverance.

But then I see videos like this one and think that I might be oversimplifying this marathon just a bit:

Watching two professional athletes fall apart like that at the finish makes me wonder what might happen to me.  While I won't be going nearly as fast as those two amazing women (this is a very extreme case- thank goodness), my worrisome imagination does get the better of me.  I certainly hope I will be able to keep it together until the end.

I predict for the next 26 days these apprehensive thoughts will be floating around in my mind, popping in and out of prominence.  I hope that I have what it takes to complete each leg of this race successfully and in the required cut-off time.  I do not want to disappoint myself or the many people that have supported me along the way.

These unavoidable doubts that have been circling around my anxious brain.  We all have doubts in life when facing an enormous challenge or attempting something new.  Taking risks, allowing ourselves to become vulnerable, feeling nervous and unsure- that is what life is all about.  These butterflies in my stomach and frogs in my throat (yes... already) remind me that I'm stretching my boundaries in new, exciting ways.  If I reach those cut-off times or not, I know that I have become a new person along the way.

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.

Putting Together the Pieces of My Ironman Journey

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. 

A View from the Cheering Section

A blog entry from guest writer (and my amazing dad) Carl Cindric:

This week, Emilie asked if I could share a father's perspective on her goal of completing an Ironman just a few years after her battle against Stevens Johnson Syndrome.

The two situations are completely different and yet they show the extremes of where life can take you.  The Ironman and SJS have been the Alpha and Omega of my daughter's physical life.  As a father I will take immense pride when the horn sounds and Emilie jumps in the water for the first leg of the Ironman.  As a father I've also felt the despair seeing my daughter fight for her life and feeling like there was nothing I could do to help her.  Now I know where the gray hair really comes from.

By competing in the Ironman, Emilie has lived the mantra that we as parents tried to teach her at an early age.  Set a goal... Determine what's required to achieve that goal... Do the training needed to achieve the goal... NOW GO FOR IT!!  Emilie's success will not only be measured in time splits and finishing rank,  her real accomplishment will be measured in what she has learned about herself as she has prepared for this monumental challenge.

The first time I entered Emilie's hospital room and saw her in a coma I couldn't wrap my head around the surrealistic scene.  I was overwhelmed with the total devastation of Stevens Johnson Syndrome.  I searched for a simple component to that situation that I could understand.  I needed something, anything, to ground my emotions.

As the dawn breaks over Coeur D'Alene, my wife and I will join Dave's parents and every other spectator to cheer on the Ironmen and Ironwomen jumping in the lake that chilly morning.  We will cheer their determination, we will cheer their fortitude, we will cheer their resolve to push their bodies to a point that most of us simply can't understand.

And we will give a special cheer for a young woman who has traveled an unbelievable journey.  Emilie, we love you and support you... and we will be at the finish line with open arms.

Thanks Dad!  Love you too!

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.

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.