Monday, July 4, 2011

An Ironman Race Recap!

Saturday Night Dinner in Spokane 

Driving to Coeur D'Alene, I was a ball of nerves.  I kept thinking of all of the possible things that could go wrong during the race (choppy water, flat tire, broken chain, a massive bonk on the run).  If I didn't finish, my biggest concern was that I would disappoint the many people who have been so supportive throughout our entire training.  I didn't want to let them down.

Yet during our pre-race pasta dinner with Dave's parents and my own, my nerves started to be overshadowed by excitement and joy.  Getting to spend time with people that I love in such a beautiful part of the country was amazing.  During our carbo-load, I was able to truly appreciate kicking off our Ironman weekend with such supportive and loving family members.


Swim 2.4 Miles (Emilie 1:44:52/ Dave 1:19:24)

At 7:00 am, Dave and I stood on the Lake Coeur d'Alene beach with 2,400 other athletes, staring out into the calm water of our first leg.  I started to tear up in my goggles, in disbelief that this moment had actually arrived.  When the gun went off, everyone charged the water, having their breath taken away by its 55 degree temperature.  After ten minutes of a congested and chaotic frenzy, things started to open up.  I found a rhythm in my stroke and settled in for the swim, passing the many volunteers on boats, jet skis, and surf boards lining the course.

Coming out of the water after the first lap, I couldn't believe I was already half way through the swim.  A length that seemed like hours during training flashed by in what seemed like minutes during the race.  I ran over the timing pad on the shore, then eagerly headed back into the water for my second lap.

When I sighted the red swim finish chute from the water near the end, I was filled with excitement for having completed the swim in a decent time.  Knowing that I was well within the cut-off time limits, I felt really good about the swim portion of my race.  The cheers from the many spectators became louder and louder as I got closer to the shore.  When the water was shallow enough to put down my feet, I stood and looked up to see a sea of encouraging, proud faces surrounding the swim exit.

 



Transition 1 (Emilie 11:54/ Dave 12:01)

My legs were a little wobbly running onto the shore.  Volunteers were helping me stand and guiding me in the right direction.  Wet-suit strippers pulled off my suit, I ran to grab my transition bag, and then headed into the changing tent.

In the changing tent, one kind volunteered helped me the entire time.  She took out the contents of my bag and handed each thing to me as I needed it.  My fingers were still frozen from the water, making my transition much longer than I expected.  I could not move my fingers, so the volunteer was a huge help in getting the velcro open on my shoes, getting my socks on, etc.  When I was finished changing, she even put everything back in the bag for me so that I could quickly continue with my race.

After being slathered with sunscreen by more volunteers, I ran to my bike.  The transition area was pretty empty by then, so it wasn't hard to find.  I spotted my parents, feeling encouraged by their big smiles and cheers.  Then I made my way to the bike exit, ready to begin the second leg of the race.

  
    
Bike 112 Miles (Emilie 7:20:37/ Dave 6:13:20)

The first twenty miles of the bike course was relatively flat and full of spectators.  I was feeling very good about my pace and my spirits were high.  While many people were passing me on expensive tri-bikes, I was holding my own on my road bike and felt confident that I would make the cut-off times.

Then, after twenty miles, the course climbed up into the hills behind Coeur d'Alene.  It was here where my pace slowed and I began to feel the exhaustion of the day set in.  There was hill after hill, climb after climb, on roads without much crowd support.  Most athletes struggled up those hills and I saw some people walking their bikes.  While I didn't need to do that, a few times I had to take it down to the easiest gear and still had to stand to get up and over the hill.

Entering town after the first lap, I was relieved to be back by the crowd and the flat portion of the course.  I tried to eat as much food as I could on the bike: gels, gu, Power Bars, etc.  This started to make my stomach very upset, but I knew it was important to take in as much nutrition as possible.  Those hills were waiting for me once again and I wanted to be ready.  

The second loop was much slower than the first.  With every mile, my average pace was decreasing.  I started to calculate cut-off times in my head and was worried about finishing in time.  The hills seemed bigger and longer the second time around, but with each one, I knew that I would never have to climb it again and I was one step closer to the run.

I ended up finishing the bike with an average mph of 15.25.  This was much slower than I expected, but considering the hilly course, I am happy with my time.  Seeing the bike finish was exhilarating and energizing.  Unlike the swim, which seemed to go by so fast, the bike was a long and challenging leg that I was happy to be done with.

 



Transition 2 (Emilie 4:28/ Dave 6:37)

This transition was much faster than the first for two reasons: my fingers were not frozen this time and there was much less to change.  Volunteers grabbed my bike and gave me my transition bag.  Again, one volunteer helped me exclusively in the changing tent to switch my shorts and shoes.  I was covered with sun screen, once again, by volunteers and was sent on my way to start the final leg... THE FINAL LEG... of my Ironman journey.

Run 26.2 Miles (Emilie 5:19:55/ Dave 4:18:51)

I had a race plan for the run; I would walk the water stations and the hills, but run everything else.  I was able to stick to my race plans and keep a slow jog the entire time.  I drank the chicken broth and cola at the aid stations, ate some pretzels and chips, and just kept my sights set on that next mile-marker ahead.

The run was really a struggle for me.  Blisters were forming on my feet in places that I had never had problems before and my stomach was still upset from the bike.  The two most uplifting times on the run were seeing Dave when we passed each other, and spotting our parents.  Their enthusiasm and pride filled me and I tried to figure out a way to carry this spirit through the last ten miles.  When I was running, each time there was a spectator cheering on the course, I would pretend that it was someone that had encouraged me during training.  All of my friends and family, people at the Burn Center, work colleagues, SJS survivors, and other survivors that have reached out to me along the way, they were there, cheering me on.  Each face along the course was a different supportive face from my life, one right after the other, unfolding in front of me as I passed the mile markers one by one.  I started to become very emotional, having such an amazing group of loving people in my life.  It was a very humbling, incredible experience. Even as the sun set around mile 20, the loved ones of my life helped me run those final few miles in the dark.

  


  

Finish (Emilie 14:41:46/ Dave 12:10:13)

Crossing the finish line of an Ironman is as unbelievable experience.  Spectators there know what this means to you.  They get it.  They are sharing this victory with you.  

I started to tear up during that final .2 miles.  I couldn't believe that I was staring at that Ironman chute with so little left to go.  I saw Dave and our parents on the side lines, waving their arms and jumping up and down.  Each step filled me with an overwhelming cascade of emotions: pride, relief, appreciation, pain, satisfaction.  I was exhausted, and yet I was more alive than I have ever been.  

As I was getting closer, I heard the announcer proclaim, "Emilie Nickoloff, you are an Ironman"... yet at that moment, I was so much more.  I was an SJS survivor, coming out of a coma just a few years ago, taking slow walks to the mailbox covered in burns without nails and sections of hair, scarred eyes and a shortness of breath, knowing that at any moment I could find myself fighting for my life in the Burn Center once again.  There I was at that Ironman finish line, an SJS survivor, proving to others, but mostly to myself, that being a survivor means more than just surviving, it means living.  

 

 

 

 


Thank you for all of your donations.  Together, we raised over $1,500 dollars for the University of Colorado Burn Center.  Burn patients, their families, and the community will greatly benefit from your contributions.

Your encouragement over the last seven months has meant the world to me.  You were there in the uplifting faces of the people along the sidelines for the last ten miles, helping me to put one foot in front of the other.  I am overwhelmed by your support and am filled with humility and gratitude.  Thank you for your kindness and compassion.  You have helped to make me a better person.

Tuesday, June 21, 2011

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.

Monday, June 20, 2011

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


POSTED: 4:35 pm MDT June 16, 2011
UPDATED: 10:15 am MDT June 20, 2011
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.

Monday, June 13, 2011

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.

Wednesday, June 1, 2011

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.

Monday, May 23, 2011

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. 

Wednesday, May 18, 2011

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.

Monday, May 9, 2011

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.



Monday, May 2, 2011

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.