More than just my feet!!!

Have you ever had a person in your life that has brought the best out of you without even knowing that they have?  Someone that pushes you to try your hardest or go farther than you ever thought you could then pushes again?  Stands up, claps the loudest of anyone in your cheering section, lets you shine in your very own moment and melts into the background without a word?  Honestly, very few people are as lucky as I am.  I have that, but she doesn't even know it.

I have been friends with this woman since we were in the 7th grade.  We've had highs and lows throughout the years.  We've inspired each other by our strength during the darkest moments in our lives.  The loss of babies, best friends, a marriage and even our health.  We have spent hours flipping through yearbook pages, laughing at inside jokes, had embarrassing moments with orange soda and non-aerosol hairspray, sat at bedsides with our hands folded in prayer and cheered from the sidelines during the biggest accomplishments of our lives.  We are the epitome of best friends.

I have had a dream for years to complete an Olympic Distance Triathlon.  I knew it the moment I crossed the finish line of my very first sprint triathlon.  I knew it again after my first duathlon and then as I trained for my first half marathon.  There is nothing quite like pushing yourself until you can't go one more step, power through one more revolution or cut through the water with one more stroke and then forcing yourself to run one more kilometer, pedal one more mile and swim one more yard.  Leaving everything you've got out on that course is the most satisfying feeling in the world.  There honestly is nothing like it. 

So now, she has done it again without even trying!  All she had to say was that she had signed up to do her second half iron man and my mind was reeling.  Could I do a distance like that?  Am I strong enough?  Am I determined enough?  Am I dedicated enough?  Could it be possible?  And honestly, all I could think of was what the hell am I afraid of anyway?  All you have to do is have a plan and carry it out.  And that's what I intend to do.  I'm gonna give  it a shot!  I'm going to train for the High Cliff Half Iron Man on June 18, 2011.

I was asked the other day by a fellow Survivor, what the correlation was between an athletic event and Stevens Johnson Syndrome since the majority of Survivors will never be able to do something like that.  What was the point?  And who did I think I was, anyway?  I should be focusing on attacking the big pharmaceutical companies rather than wasting my time, effort and energy on running in order to do something of value for the fight!  I guess I could think that way.  I could easily sit inside my house and hide from the rest of the world, get angry and bitter because really, what is the point?  Why would anyone in their right mind do what Christina is inspiring me to do?  The simple answer is because we can.

Thank you, Chris.  I am honored to follow in your white water, tire tracks and footsteps.  Thank you for giving me the courage to believe that I can get big parts of my old life back.  Thank you for pushing me to achieve things I never thought possible and for clapping the loudest!

Time to get moving...again!

Hey Everybody!!

I hope everyone is doing well!! I have taken some time off from running and have somehow started to refocus my energy!! I ran this morning on the treadmill and I can see the amazing difference it makes in my mood! I feel really good today!

So, I have pulled out my old food journal/exercise schedule. I picked out a bunch of runs, duathlons and triathlons I would like to train for next season. It's giving me something to tunnel my workouts towards and I am getting excited about it. I start a spin class on Monday morning, at 5 am I must add, and other than the fact that it will be dark when I start and probably when I finish, I am really looking forward to it. I used to spin quite a bit before I got sick, but it's been a really long time coming! I know it's going to kick my butt, but I need it!! Training so much for the half marathon has left my body weak in other areas, so I'm hoping to change that.

It feels so good to have my focus back! I know I will have good days and bad days, but having a direction in which to move forward makes all of the difference in the world!! It's as though I have been able to pull the dark veil off of my face to the see the sun again after the half marathon excitement had ended. I don't think I was prepared for the feelings of emptiness and loneliness after everyone had gone home and the dust had finally settled. But now, I am pushing forward to next season, to a healthy life, and to reclaiming the strength my body once had. I have a long way to go, but that's ok. I'm ready to tackle it and to continue bringing awareness to SJS. Because ultimately, that's what all of this is about. To recover, to live a new life and to help other people avoid going through this too. Yeah, that's a good life!

Singing the Blues

So I have been struggling with some post race depression ever since I finished the half. I kind of knew that it would happen or that it was at least a possibility. So much time, energy, and emotion went into that race that it was pretty much inevitable. However, I thought I would be through it by now.

I am planning to do the Noodleini 15k on November 28th. Mike is doing it too, but this time we are running our own races and he will be finished way ahead of me!! So I've been plugging away at a training plan to keep me ready for the 9.3 miles. But I have battled an unending problem with my dang feet once again. They are just so damn bruised. Plain and simple, that's it. I can't walk without shoes or slippers in my own house, including the carpeted floors. I have always wanted to be thin, but fat feet has never been on my list of problem areas! I want a little cushion on those bad boys, but it's just not gonna happen. I've recently been avoiding more runs than I have completed and I can feel it in my mood.

I somehow need to find it in me again to keep on track. I know it's in my blood and I know it makes me feel better. I have to remind myself of why it is I run. There are so many reasons. More reasons to do it than to stop. Time to refocus and get things back in order. I know I will, I always do. Let's just hope this song ends soon and one with a quicker tempo starts again real soon!

Play by play!!

I knew that this was going to be an experience that would make an everlasting impact on my life. What I didn't realize is that it would change my life for the better in the way that I'm sure it has, even one day after the race! The entire weekend was a whirlwind and I'm having a hard time wrapping my head around all of it.

It began with Rachel. I picked her up from the airport Friday afternoon and it took only my first glimpse of her to know that we were meant to be friends! I couldn't wait to wrap my arms around her and let her know what an amazing thing it was that she was actually here! We hugged right away and, of course, I cried!! I was beside myself! After grabbing her bags and loading into the car, I drove her past a couple of things in town and then took her to lunch. We talked and talked, compared notes and shared our stories. We marveled at how similar they really were. We got sick just weeks apart from each other and both of our hospital stays were 3 months long. We compared trache scars and blotchy spots of skin, told each other the things that we hate about how we now look and all about our every day struggles as SJS survivors. We then headed back to the house and continued our conversation. Sharing basic information about our families, friends, jobs and homes. And then, it was "go" time!!!

With the rest of my family, we headed out to the baseball stadium for the Kids Fun Run and the National Anthem. I was REALLY nervous for some reason! I had done this before, but I was pretty anxious this time. I was pleased with how it sounded and standing behind home plate was pretty cool! The kids ran their races well and it was fun to see so many people I knew. We had a great time! Afterward, we went out for dinner and were joined by my parents. Rachel was introduced to her very first Leinenkugel's Honey Weiss and loved it!! Trust me, it wasn't her last over the weekend! Lol!

After dinner, we got to go meet Kate and her husband, Jon, who had just arrived at their hotel from their flight from Atlanta. Again, I was excited and nervous to finally meet her! Couldn't wait to hug her and share stories! It was amazing to see her and to meet their little boy, Coen. Plans to meet up the next day were made and we called it a night. We were all exhausted from a day of traveling and intense emotions!

The next morning, Rachel and I ran out of the house to get to the start of the 5k. My good friend, Renee, was running it for the first time and I couldn't wait to see her! Unfortunately, we couldn't find her in the crowd of runners before the race and I had to just watch the clock and and wait for her to cross the finish line! She did it!!! And I got so emotional!! I know she did it because she felt "inspired" to do so, but the great thing is that she did it for herself and for getting healthy! She ran like a pro and I couldn't be more proud!

After the race, Rachel and I headed over to Brady's football game and hung out to watch the Huskies play hard!! Rachel was a trooper as I drug her around town and made her watch my kid play tackle football in the cold!! Sorry, Rachel!

When the game was over, it was more running around. Spaghetti sauce for a big pasta dinner had to be made and we still had to get out to the tech to pick up our race packets. We met back up with Kate and John and grabbed our race packets and some lunch. Then we raced home to get ready to meet Heidi and Ethan!!! We were heading to Erb Park to meet the Maidl family and their race team for Super E. We got to the park and realized we had beaten them all there and watched as they all drove up. Mike said, "that must be Heidi in the van with the door half open and her leg sticking out while it's still moving!" And, of course, it was!! As though we were filming a movie, Heidi and I ran across the field to greet each other and nearly knocked each other over in the middle of it! We had spent hours conversing on Facebook and numerous phone calls to talk about our experiences! It was AMAZING to finally meet her! And then, we were all introduced to one another. Derek, Lisa, Kevin, Joan, Amy, Kelly, Catherine, Molly...and so many I am missing!!!! There were friends of Heidi's from high school, aunts, uncles, parents, siblings, friends of the family. All there to support Super E and raise awareness the next day. Absolutely amazing!!

After only an hour of visiting with our new friends, it was time to head home in order to carb up!!! We had an amazing time with plates of pasta and hours of conversation about the funny accents we all had, training for the big race and our own experiences with SJS. We laughed about Kate's crazy delusions (hers just happened to be funny) and shared notes and tips on skin care, eye care and how we have learned to deal with the changes in our appearances. It was so incredibly healing for me, for Rachel and Kate, and for Mike and Johnathan too. Our friend, Brian, listened to our stories and was educated on more than he had ever bargained for!!! Lol! He was a trooper and we all enjoyed having him there. It was an early night for all of us. We knew we had to pack up our stuff for the race and boy was it strange to see so many people setting out socks, shoes, dry wick clothes, bib numbers and chips!! The excitement in the air made it hard to breathe!!

With alarms set, we crashed and got up way before the sun was even thinking of coming up. The morning was chilly, but it appeared that the rain was going to hold off. We dropped off two cars at the finish and traveled to the start line to get ready to be interviewed on Channel 5 before the race. When we got to the start line, Team Super E was already there and ready to rock those 13.1 miles! The interview was great and we knew we had gotten the word out to many more people.

Before we knew it, the National Anthem was being sung and the gun was going off! It was "go time" and there was no turning back! Mike and I ran with Heidi and my brother, Sean, was up ahead a bit riding a bike. He planned to to ride along and stay with us as much as he could. The first few miles came quickly and I was feeling great. I had found a rhythm and my breathing was perfect. I wanted to run 12 minute miles, but had no idea if I could actually keep that pace throughout.

Between miles 3 and 4, I was happy to hear yelling and screaming from the Cover 2 CoverGirls Book Club!! I was so glad to see my book club ladies cheering me on. That is until I could smell their cups of coffee!! So jealous!!! Lol! I ran over to them and slapped their hands and wanted to say thank you for being there, but the words failed me. I just couldn't speak and the emotion of what I was trying to accomplish started right then and there. And I knew it wasn't going to stop anytime soon.

The miles continued to fly by and we saw so many people along the route wearing the blue Team SJS shirts!! Cheering us on and willing us to keep running. At mile 7 I got to see the most beautiful sight of the entire day! Standing with their Oma and Opa, were my two little boys! They were cheering for their mom and dad and I felt then and theere that I had definitely been a positive role model for them. I had set a goal and stuck with it to follow it through!! They smiled these big smiles at me and I just wanted to kiss their little faces, but we kept going, reminding them that we would see them at the finish.

At about mile 10, I started to feel a little tired. I knew that i had never acomplished a run farther than that and that it was a tiny miracle that I hadn't started feeling sick up to this point. I found myself diving into my own mind, thinking of all of the SJS Survivors I had met online and the ones that I would never get to meet beccause they were not surviving here on Earth, but Heaven instead. I thought about my own mortality and how close we had come to losing the battle. It was closer than we had all wanted to admit, but at this moment it seemed so far away. As we ran on, we ran over the Oak St. bridge and passed by Theda Clark Hospital. I had spent my first two days in that hospital before they transferred me to Milwaukee. It seemed so fitting that I should run past the hospital that helped to save my life. There was no noise in my head at that time, even though I could see Mike and Heidi's mouths moving. I had found a quiet moment to pay tribute to the amazing doctors and nurses that did everything in their power to keep me here on this Earth. Without their quick action after I was finally diagnosed, I would not be here today!

We reached mile 12 I knew that all I had to do was make it around the park!! We were greeted by our good friends Jason and Stephanie. It was great to see them!! And a team member who had already finished, Kevin Carr, came back and ran that last mile with us. He was a great support and encouraged us to enjoy this part! In the final yards of the race, I looked up to see the finish line like a safe haven in a storm! I was happy to see it yet sad that this day was nearly over! I couldn't believe that 9 months of training was coming to an end. I reached over and grabbed both Mike and Heidi's hands and knew that I could not have run this race without them! Heidi was my push to keep going and to get out there on days when I felt like staying in bed. Mike had been my biggest cheerleader, my coach and my kick in the ass when I needed it most! I saw my kids standing on the side along with my dad, my mom, my father-in-law and the Team SJS supporters. It was a glorious moment and one that I will always be proud of!

So I had done it! I had run 13.1 miles on nerve damaged feet, with a stomach that wanted to jump out and wring my own neck and with sight in only one eye, but a heart that knew nothing of those things. All my heart knew was that I could do it, that I did do it and that I would do it again. SJS did not beat me, I beat it that day! And I continue to beat it every day! I did it. Wow, I did it!!

It's Do or Die Time!!

Holy crap!!!! There are only 7 days until race day! Oh man! I'm starting to wonder what the hell I was thinking when I decided to attempt this thing!! Seriously, Kendra? Really? You know it's 13.1 miles, right? You know you have never run more than 10 miles and that the last time you attempted 11, you got so sick you quit after 7, right? You have such a sensitive stomach that you are not allowed to eat dairy for three days before the race, no red meat or tomatoes the night before and that even chicken soup is too greasy for you. All you are able to eat is a grilled chicken breast and plain pasta!! Who eats like that? You remember that 2 years ago you nearly died? You remember the intense pain you had in your feet that caused you to wake up in the middle of the night to put socks on so the tingling would stop, right? And you know you can only see out of one eye. Did you forget that part? For all intensive purposes, you are blind in one eye! How about the months of physical therapy you needed to do in order to get out of that wheelchair? Or the balance exercises to get rid of the cane? Oh, and the hats you wore to cover your bald head!

Yeah, I remember all that. I remember my limitations every day. I fight the joint pain every day and wake up every morning coughing the junk out of my lungs that has collected over night. I have a special routine of eye drops, cleaning lenses and praying that when I get the lens in I can still see. I have fears of one day losing my vision all together and what that would mean for me and my family. So yeah, I remember all of those things.

But I also remember that I am not alone in this! I am not the only survivor of this terrible illness and I am beyond excited to know that I will be meeting three of them in less than a week! I can't wait to pick Rachel up at the airport after her flight from Boston. I can't wait to get Kate's call that they are at their hotel after their flight to Milwaukee from Atlanta and their drive from the airport. I can't wait to see Ethan with his mom and dad, brother and sister from Val Paraiso, Indiana. Although all of these horrible things happened from my SJS experience, there are also blessings that came after it's passing. I am thrilled to be a part of the SJS community. I wouldn't trade that for the world! I just wish we all knew each other under different circumstances.

Today was my last long run before race day. Although I was very unsure about how I was going to feel, I tried to remain as positive as possible. I had taken most of last week off of running because my schedule wouldn't allow it. With my increased hours at work and the kids activities after school, I struggled with not having the time. So today was a pretty big test for me. Mike and I set out to do 7 miles around 10:30 this morning. The sun was shining and there was a pretty strong breeze. There was no humidity in the air and it felt great! A beautiful fall day in the amazing midwest!

Because of the miles I missed last week, I felt sluggish. I knew we were running a pretty good clip, but it took effort today. I had a few brief moments where I thought maybe I was going to have some problems, but the moments passed and Mike and I just kept going. Our conversation went from the houses we were running past, the plans for the weekend and books we are reading. And when we had run all but the last few blocks, I felt a wave of emotion that I have not felt before.

This was it! All of the training and preparation, the frustrations, the ice, the reading up on what to eat and what not to eat, the phone calls and emails with Rob to figure out my insides, the sweat, the Gatorade, the time, and the climb. That is what this was for me. A climb from the bottom to the top and all that that has entailed. And today, "I can almost see it, that dream I'm dreaming."

Thanks for taking the ride with me through all of this. I have so many loyal readers and I am so grateful that you have been here with me the entire time. We have made it to this point and now it's do or die! Let's get 'er done, shall we?

No "I" in TEAM!!

Hey everybody!

I just wanted to lift up another incredible woman who is running for the cause. Her name is Patti and her son, Danny, was stricken with SJS the same year I was. I am happy to report that Danny is doing very well and had very few side effects from his illness. Danny received amniotic skin grafts on his eyes to save his vision, and it worked!! So happy for him!

Patti and her family live in Colorado and she is now training for the Denver Half Marathon. She is on a serious mission to raise money for the SJS Foundation in Westminster, Colorado. Please consider making a donation to help us keep this Foundation up and running!! Without it, there are many of us survivors who may not be here or may be worse off than we are. It gives me such a sense of comfort knowing that there are others out there who have suffered what I have and completely understand what I am feeling. Through the Foundation, many of us keep in contact with each other and support each other in our every day lives as well surgeries, procedures, fears and anxieties. I would be lost without my SJS family!!

Patti keeps me updated regularly on her progress and has her own blog of her fight to get the word out about SJS. You can check it out at www.sjsawareness.blogspot.com. Please extend to her the same love and support that you have shown me through these past two years! Together, Patti, myself and the SJS community are working hard to keep you from learning about SJS the hard way!

Love and Peace!
Kendra

Back to the beginning...

Yesterday, I got the call from my friend Stephanie that the shirts we had ordered for the race were done! I couldn't wait to go and pick them up and as soon as I got there I knew why! They turned out awesome!! I am so excited to see a sea of blue shirts in the crowd and in the mob of runners and walkers! Now, it's time to get them out to everyone that ordered them! My living room floor looks like an Umpa Lumpa threw up on it!!

I had a bit of an emotional thing happen today. My physical therapist, Kari, had ordered a shirt and so my son and I went to take it to her today. Unfortunately, Kari wasn't there, but I did get to talk to Kathy, the incredibly sweet and wonderful receptionist. As we chatted briefly, I looked into the gym where Kari and I had worked so hard to regain my strength and flexibility. It all came flooding back to me!

My first day at therapy, Mike walked next to me as I pushed my walker through the door. Now, I had known Kari before I got sick. We had actually worked together because I had shoulder surgery . I hadn't even finished therapy from that when I got sick. I had no hair, translucent skin, atrophied muscles and blurred vision. I remember going into one of the rooms and needing help to get up on the table so Kari could figure out where we were starting from. Little did she know we were starting from less than zero!!

Three days a week, I made my way to Peak Performance, thanks to my father-in-law. He would drive me there and then go run errands while I struggled through weight lifting and stretching. I always started by walking a little to warm up. I remember being so proud when I walked a quarter mile on the treadmill for the first time. Although it was hard work and sometimes very frustrating, we laughed a lot!!! We had to, otherwise I think we both would have cried or given up! We finally made it to a point that I had to just keep going on my own! Thanks in part to crappy insurance, of course, but I probably could have found any excuse to stay there in that comfortable gym for ever. I had to push myself and make a go of it alone!

That's when I hit rock bottom! I spent nearly all of my days at home alone. No motivation anymore and no one to process this nightmare with. I sat around, cried, watched tv and knit all while eating to kill the pain. I gained the weight back that I had lost while in the hospital, but I also gained an extra 30 pounds to lug around. I was lonely and miserable and fat! I was angry all of the time and bitter that I was having to go through all of this. It was a very dark time for me. I knew that I had to make a change or surviving in the hospital was nothing more than living so that I could come home and suffer through the rest of my life. I made the choice to choose a different life for myself and my family.

And that is when it all started! I had set the goal of running the Fox Citiies Marathon 5k. It was my goal to run 3.1 miles outside on the pavement, like everyone else that day. But I had to start all over again and began by walking on the treadmill. It was a long haul and after training on the treadmill for as long as possible, I had to give it a shot! Running outside was 10 times harder than I thought it would be. I felt as though I was running on sand and the muscles in my legs felt like useless rubber bands. It was going to be one of the hardest things I've ever done! But I did it! I ran it, walked through the water station, but finished it all on my own!

So tonight, here I sit with ice on my heel and aches in my joints I hoped I had avoided, waiting for the big day! Only one long training run left, and that's 11 miles on Sunday. The excitement of the day is gettng more and more intense as the days pass by. And the horror of the reason I am doing this is getting further and further away. What a great time to be alive!!

Moving forward!

I have to say that earlier this week, I was very apprehensive about my scheduled 10 mile run today. My continued stomach and intestinal problems have weighed heavily on my mind and the question of if I should even attempt the half marathon popped into my head. It was kind of an ugly start to the week.

And then, without warning, I received a message from a friend of a friend who said that he wanted to help me if he could. I had already talked to dozens of people about my hydration issues and thought that it was probably going to be repetitive information of what had worked for him, what works for most runners, blah, blah, blah. All I could think of was that I was not like other runners and I had survived an illness he had probably never even heard of. Really, what could he do?

But then I thought about it and realized that I have a lot to learn and who am I to not even listen? So I sent him a message back and all of a sudden I felt a new sense of hope that this might actually be the thing that helps me conquer those 13.1 miles! Rob and I spoke over the phone, he lives in Hawaii and I am oh so jealous! He listened to my concerns, asked me tons of questions, told me he couldn't promise anything, but said he would do what he could to help get me ready for that looming race day in 4 weeks.

I learned that although I had lost 30 lbs during this process, my body was still adjusting to my new weight and probably functioning as though I hadn't lost it at all. Rob reiterated for me that my internal thermostat is still not functioning properly and overheating in our hot and humid Midwest summers is highly likely, which then leads to a large loss of fluids and electrolytes. He told me what foods to avoid three days before my long runs and those to avoid the night before. We talked about how to get hydrated and then how to keep it that way! As I listened and took notes, I realized how running is so much more than mapping my route and strapping on my old shoes! Sure, that had worked for me before, but it wasn't working for this old body anymore and not at these distances.

So I avoided dairy the rest of the night, ate a plain old chicken breast and a few green beans, drank Gatorade and water until I thought I would explode, felt a sense of pride when I peed the correct shade of clear, and then crawled into bed memorizing my route for the next morning. I woke up early and started the rest of my new pre-run regimen. I ate a quarter of a plain bagel with peanut butter and sipped some water, got my fuel belt ready and headed out the door.

The sun was out, but the temperature was cool and the humidity farely low. I knew it would gradually get warmer as my run progressed, but for the first few miles I wasn't bothered by it. I concentrated on my breathing, taking long strides instead of short ones and sipped at my gatorade every mile. After an hour of running, I decided to try a salt tablet and followed it up with water. As the blocks turned into miles I didn't feel the need to mentally segment my route, and I wasn't praying for the end to come. I felt strong and comfortable and I settled into what I was doing without a problem.

A half hour later, I took another salt tablet and pushed on to finish the last 3 miles. Hoping to finish with a 13:00 pace, I was amazed to see that I had done even better than that! I finished my 10 mile run feeling strong and better than I have felt in months in 2:02:41! I checked my watch twice to make sure I had read it correctly, and I had!! It was a GREAT feeling!

For the first time in a long time, I finally had some confidence in myself that I was going to be able to run this race. People may believe that my body isn't ready for this race, that I am overdoing it, that this is too much for a "beginner," that I need more time to heal and recover. But I will tell you that in my heart and soul, I know that I can do this and I can do it well. I am ready! I am a mother, a wife, a friend, a daughter, an advocate, a counselor, a fighter, and a survivor. Maybe I am starting from a place that most have not had to start from, with atrophied muscles and nerve damaged feet. Maybe I do have sight in only one eye and skin that is scarred and damaged. But I have something that not everyone has, and that's the belief in myself that I am worth the time, the energy, the effort and the discomfort to reach a goal. And now I know that I am yet another label to add to my laundry list; a runner. Yep, I am a runner!

Two Steps Forward, One Step Back

Mike and I ran the Menasha Otto Grunski 10k this morning. I had never run a race longer than a 5k before, so I had been looking forward to giving this one a whirl. The weather was pretty good at the start with cloudy skies and a tad lower temperature than we've had for several weeks, however, the humidity was still pretty high.

As you probably know from previous posts, I have had weeks of intestinal issues on my longer or more intense training runs. I have tried everything I can think of to eat and drink the right things in order to make that problem go away. I have been sick for afternoons as well as for the entire next day. It has been not only frustrating, but has taken a chunk out of my self-confidence. It seems all I do now is dread the long runs and question my ability to do the 13.1 miles.

Today's run was no different, unfortunately. I spent my entire day yesterday avoiding dairy, measuring ounces of water, and running to the bathroom hoping my bladder wouldn't burst. I got up early this morning and drank even more water and ate half a bagel with peanut butter. Thinking that all of these things would make a difference in today's run. It did, I guess, until well into the third mile when I started feeling a little nauseated. Halfway through mile 4, my bladder had decided it had had enough. And let me tell you, trying to find a wooded area in town while being followed by other runners and walkers is quite the feat (notice I didn't admit to how many runners and walkers were behind me)!

So, although I finished the race and did so at approximately the time I had hoped to finish it, I have spent the rest of my day on the couch or in the bathroom. And I must say that I am happy with the remodeling job Mike and I did in that room approximately 4 years ago! Like I said, I've spent a lot of time in that room over the past several weeks.

So I guess the thing that I am learning through all of this is that I must have patience for this too. My recovery from SJS has been a test of that patience for the past two years. Whether it be the healing of my skin, yet another surgery, waiting in doctor's offices for hours, traveling across the country in order to see better, or just the time it has taken me to realize that I have actually fought this battle and won, it has all taken patience. A virtue I have not been accused of having...ever.

I am pretty emotional about the run. I get nervous when I remember that it's only 35 days from today. I get jittery when I think about whether or not I can go the distance. And I dread the thought that I will finish 13.1 miles and then be unable to enjoy the high from doing so because I will be all alone in the watercloset! Not exactly my idea of a celebration for the months of training and the sheer number of people we made wonder "What the hell is SJS, anyway?"

I guess we will see what happens the morning of September 19th. Time to reevaluate my goals for that day. Is it really all about running the half marathon or is it celebrating life with my fellow SJS peeps going the extra mile with me? Or the thousands of people that we may bring to light on the subject? The possible lives we may save or affect that day? Sometimes I think it's good to take that one step back!

Point of no return!

Sunday was my first scheduled 10 mile run. I was camping with my family and some friends for the weekend and knew that I would be running in unknown territory, but it was beautiful! We were out in the country, mostly old county highways and gravel roads. Mike was with me and there for the encouragement as well as my pack mule and GPS! Loaded with water, gatorade and a large feeling of doubt churning deep down in my gut, we headed out for the hardest run thus far.

It was hot! Not sure how hot, but the humidity made it harder for me to breathe. I was having problems with my lungs and coughed a lot. Usually producing phlem I just couldn't get rid of. Frustrating! But we continued on and ran between cornfields and soy beans and were grateful for a light wind that cooled us as we went.

As the miles went by, I asked Mike to tell me how he got through all of his years of training for the two marathons, numerous half marathons and the MC 200 that he has completed. I've always admired his strength and endurance to get out there and run mile after mile after mile. He's always made it look easy! However, I was learning that even for Mike, it wasn't always so easy. He reminded me of some of the long runs that just didn't go his way and the injuries he had to nurse in order to push forward. He admitted that he had his tough runs as well, but never doubted that he would finish the even he was training for. It was always about how he finished. Whether he sprinted, jogged, walked or crawled, he would finish and that was all that mattered. It was good to hear that!!

As we continued on, I would have moments of panic that would over take me. I'd get angry and frustrated at how hard it was and declared that I wasn't going to be able to do it! I didn't need to run this half marathon anyway, I could walk it. What was the point? Why would I push my body this hard and I was going to be sick for the rest of the day anyway! Was it even worth it? Of course, that flew like a fart in church with my husband!! Of course I could do it ,even more so, of course it was worth it.

I began to realize how scared I really was to do this thing! Would my body be able to take it? Was I getting sick after my long runs because my body was sub-par? Did I really have the strength that everyone has been saying I have? Would I fail?! Would I train for 9 months to just get to the point that it just wasn't going to happen for me? And the bottom line-Was I just going to live until I got sick again and die this time?

You're mind can play some pretty nasty tricks on you after you have been through a serious traumatic experience. And my mind was doing just that. It has been a bit of a struggle for me to push past my irrational fears and to keep going when at times all I have wanted to do was quit. I could have quit. Easily, could have said that I was not going to run it after I made the decision to do so. I could walk it and have the same result, no biggie! I still would have completed 13.1 miles, still would have gotten the word out to people with the help from the rest of my SJS Team. It would be fine to do it that way.

Fine for other people maybe, but not me. And Mike was quick to point that out! He told me to "knock it off" and "quit telling yourself you can't do it and just do it." I would never be ok with determining to run it and then not doing it to the best of my ability. What would that say about me? What would that say about the incredible people I share the title of "Survivor" with? It's just not an option. Quitting is just not an option and being afraid is not a good enough excuse to not give it all I've got. That's all there is to it!

We ran some more, and then ran some more. I was pretty sure we were never going to make it back to the campground! We were nearly out of water and what we had was so warm it was gross! The gatorade had been gone for awhile and I was glad since it too had gotten warm. Mike pointed out that we were at our last mile and that it wasn't far now. I felt my legs moving and my feet pounding the pavement, but felt nothing else. I could no longer speak but answered Mike's questions with a grunt to let him know I was listening. My insides were cramping and all I wanted was a bathroom and a cold shower! I thought I was going to collapse on that final 1/2 mile, but I kept my feet going. I found a little bit of energy from somewhere down in my soul and finished those 10 miles.

So I did it! And, yes, I was sick for the rest of the day. I still have not figured out how to prevent that from happening, but I'm not quitting. I have 6 more weeks until the race and need to run at least one 10, 11 and 12 mile run. So I'm taking it a little easier this week and am doing a 10k on Saturday. For this week, that will be my longest run and for me that's ok! I'm focusing on controlling those irrational fears and allowing them their place, but not letting their place take over mine. It may not be a really strong and wonderful finish, but yet it might be. It still comes down to putting one foot in front of the other, no matter how I look at it. So that's what I'm going to do! In my training, in the race and in my everyday life. Because surviving is more than just being present, it's all about moving forward. And I'm moving on!

For my husband...

I have been wanting to find a way to thank my husband, Mike, and to let people know just what he has done for this family and for me over the past two years. However, it's been a challenge since the focus has been on me for so long. When people go through times like we have, it's not unusual for family and friends to think of the "patient" first. And although I truly appreciate the thoughts, prayers, and kind words of love and support, I want you all to know how incredible he really is!

I still have not been able to figure out exactly how he kept our family functioning during the 3 months I was in the hospital. I know he had a calendar and scheduled days for people to come and stay with me at the hospital so that I wasn't alone. I know that he was there himself for several days out of the week and drove back and forth from home to Milwaukee. He stayed with numerous friends overnight each week so that he could be at the hospital as much as possible, and he kept everyone in the loop through a beautiful Caringbridge site that he updated nearly every day.

Mike would go to work a few days during the week and would take care of our two boys' every need. He's told me that night time, after the kids were asleep, was the hardest and loneliest time for him. I can't imagine lying in our bed alone wondering if my spouse was going to make it through another night, if the phone was going to ring and the call be from the hospital with devastating news. How does someone survive that?

Well, he did. And he did so with true grace and determination. If ever there were a man that walked this earth with more strength, courage, generosity and love I have never known one. And that has continued through this entire journey we have traveled together.

After he brought me home, he took care of every little detail. Setting up doctors appointments, physical therapy sessions, eye appointments, picking up prescription after prescription, cooking, cleaning, bathing the kids and putting them to bed, helping to get me showered and dressed for the day, going to work, paying the bills and constantly worrying if it was all going to work out! Once I was strong enough to start doing some things on my own, we had to learn how to be husband and wife again instead of caregiver and patient. There's a big difference and it was a difficult transition for awhile. Yet his patience and love was unending and he pushed me forward to do things on my own. He supported me in my decision to run the Fox Cities 5k last fall and was there at the finish line to catch me in case I needed him to. I am proud to say that although it took me 40 minutes and 57 seconds to run those 3.1 miles, I was standing on my own two feet at the end.

And he is supporting me and encouraging me through yet another goal. This half marathon is not about me. It is, of course, about raising awareness of this illness. At least, that is what it is about for all of those people who have signed up to run or walk it, have ordered shirts and who have encouraged me through Face Book posts and spreading the newspaper article link all over the internet. But honestly, on the day of the race, I will be running next to the man who has been there for me when I knew something was terrribly wrong that first terrifying night, who was there when the doctors said I had to be transferred to another hospital with a burn unit, when I couldn't breathe on my own and and my body was giving up, when I couldn't dress myself and he had to do it, when the panic attacks were so bad I thought I was having a heart attack, when I had no hair and he still thought I was beautiful, and when I told him the crazy idea I had to run 13.1 miles. I will be running it for him. So that he knows that I am who I am and as strong as I am because of him! He has carried me through more than any person should have to carry anyone, and he saves my life every single day.

Michael, I can't know how much you have really given up for me and our family. I can't imagine what this process has done to you, but I do know that I am eternally grateful to you for your love, support, encouragement and strength. You have been my rock, my training partner, my cheering section, my coach, my best friend and the love of my life. Thank you for helping me, thank you for taking care of me, thank you for supporting me, thank you for loving me and thank you for beating this illness with me! We did it, Baby! We did it!!!

Never felt so alive!!!!!!

Today has been an absolutely amazing day!!! Actually, the entire weekend was great. We spent the weekend camping with a group of amazing friends and boating for two days! Although we got rained on the first night, we were able to spend plenty of time out on the water and the rain never dampened our spirits.

This morning, I woke up to see the sun rising over the water and the complete silence of a full campground. Other than myself and my husband, because I woke him up trying to get off of the air mattress we share, we were the only two people awake! Although the air was heavy with moisture, the temperature was cool and perfect for a run. We ran the entire campground a total of 7 times to make our 9 miles. I felt great during the run and could tell I was pushing myself for a better time. I wanted to stick to my 12 minute pace for a long run and with the help of my husband, I knew it would be possible. And it was! We finished up the run in 1:48:06! It was a great feeling!!

And then, as we were packing up the tent to get ready to head home, I got the phone call from my mom! The article was on the front page of the Sports page in the Post Crescent! I was so excited! I wanted to see it so bad, but when I walked up to the registration building at the campground, there were no newspapers to be found! I was going to have to wait until we got home to see it.

My husband stopped to buy a paper on our way home and as I looked at the picture on the front, I had a hard time recognizing myself! It was the picture I had emailed to the photographer, Bill, after our shoot. A picture of myself wrapped in pig skin and gauze, a feeding tube from my nose, no hair and frail skin. Oh my God! Was that picture really going to be seen by people all over the city? It has got to be one of the ugliest pictures I have ever had taken and I was plastering it all over the newspaper, and on a Sunday too!!! Ugh, what was I thinking? Of course, underneath that picture was the photo Bill had taken on that Tuesday training run. The one that looked like me and the one I could recognize. The article was awesome and it highlighted all of the signs and symptoms of SJS as well as gave websites for where to find more information. I am so happy!!!! http://www.postcrescent.com/article/20100725/APC0212/7250579/Woman-doesn-t-allow-ailment-to-outrun-her

So this weekend is the Green Bay Packer 5k. I can't wait! Part of the course is in Lambeau itself! Being a Packer fan, how can you not be excited for that! Then it's another 9 mile run on Sunday. It's starting to be a little unbelievable to me that I am able to run as far as I am. Honestly, I never knew I had it in me!!

We've sold nearly 50 shirts for the cause and I am hoping to sell more! It would be so great to see all of those blue shirts on race day! Let's just hope I can run through the emotion of that day! It is going to be another amazing one!!

Team SJS Race Day Shirts!!

Well, here they are! The team shirts are done and ready to be ordered! If you are interested in helping spread awareness and would like to order one, let me know!!

A special thanks goes to Jason Allwardt for his creativity, time, skill and generosity for designing these shirts! He asked me what I wanted, ran with it and practically read my mind! I wanted something that symbolized the uphill journey that all of us SJS survivors and family members go through as well as the mountain known as training for the half marathon!!! I am so grateful to my dear friend! Thank you, Jason! And I also want to thank his beautiful wife, Stephanie, who is doing the printing of these bad boys! Without her and Eagle Graphics, these may not have been a possibility! Thanks, Steph!!

Now that the shirts are well underway, I am unable to contain my excitement! This entire journey over the past 6 months has really become more than just a dream! It is becoming more and more real every day! Getting to run the half marathon is a dream I have had for about 5 years, but never thought that I could do. I would quit or give up on myself just when I thought it was too tough. Now, quitting is not even a possibility! Oh don't get me wrong, I have thought about it! But my heart just won't let me.

And to share this with my dearest friends and family is almost overwhelming! I have been amazed by the outpouring of love and support from so many people. The number of people who are signing up to do these 13.1 miles is incredible. And for those who aren't able to be here or do it, are supporting me with kind words, ordering shirts and donating to the Stevens Johnson Syndrome Foundation or the Boston Foundation for Sight. My heart is so full of gratitude! I have never felt this way before and I feel so lucky to be able to feel it! Two years ago today, I was on a respirator and the smile I gave my mom before she left the hospital that day was the most energy I could exert! Not anymore!!

Only 66 days until race day!! This weekend is an 8 mile run. So it's full steam ahead from here on out! Let's do it people! Let's do it together!!

Blah, blah, blah...

Had a really nice training run this morning. Only did 3 miles, but ran it quicker than I have since being sick. Ran it in 32:51 which is a 10:57 pace. Pretty proud of that!! The weather was nice, but glad I got it done early enough in the morning. I think it's gonna be a hot one today! So it's an afternoon at the pool for me and the boys!!

Nothing else major going on. Waiting for the newspaper article to be published. Can't wait!! The photographer came this morning and took some pictures. So, we'll see if any of them turned out. I told him to do what he could to make me look about 30 pounds lighter! We'll see if that happens!

Photo Op!!

So tomorrow, a photographer from our local newspaper is coming to take pictures of me running for an article they are doing on my training for the half marathon! How cool is that? I'm pretty excited about the article, since I have been trying to get as many people to learn about SJS as possible over the past two years. A little nervous about it as well. I hope the article doesn't just bring light to the fact that the marathon is coming up soon in the Fox Cities, but also gives valuable information about Stevens Johnson Syndrome. My SJS family spends so much time and energy in their own communities to getting the word out there that I hope I don't let them down!

My friend, Eva Uhlin from Sweden, was on the Today Show a few months back and was interviewed by Matt Lauer. It was so great to get the story on the show! Eva did an amazing job, but I was so disappointed in Matt's coverage of her illness. He talked about how Eva's face fell off and focused so much attention on the gruesome details of the illness but very little effort was put into the signs, symptoms, causes, warning signs and absolutely no direction on how to find out more information on it! Ok, disappointed is an under statement! I was pissed!!!! Matt, you really screwed up on that one!! no pressure on Dan from the Post Crescent!! Lol!

Anyway, I got to do my long run amongst the rows of corn and miles of highway in the great state of Iowa on Sunday! It was cloudy, humid and threatening to rain for the entire route, but it held off. Actually, I would have welcomed a few sprinkles since it was so humid!! The air was very still on the way out, but on the return leg it picked up a little and helped to cool us off. My husband ran it with me. It was great to have him along since I was feeling pretty overwhelmed at the thought of this run. The week before, if you remember, I was plagued by a side stitch that wouldn't go away and the heat was nearly unbearable! It's been amazing to me just how much your mental strength plays a part in running long distances. It's usually when I have a "bad" run when my mind isn't in the game. And that was how I was feeling before we set out.

It took me until the turn around at mile 3.5 before I settled into the rhythm of my feet hitting the pavement and my breathing slowed. My legs never felt tired, however, and I was glad for that. It was a great boost in the self-esteem department and I just might be ready to tackle that 7 miler again on Sunday! We'll see how it goes tomorrow!

I'm past the halfway point!!

Well I sure hope everyone had a fantastic Independence Day!! I know that we had a crazy and busy schedule of driving, eating, boating, eating, driving, eating, swimming, eating... It was well worth it, but I can honestly say that my stamina is NOT what it used to be!! I have had about three days of recovery time from all of the get-togethers and fireworks. It seems that my week has finally begun looking a little more normal and I am well into the swing of our summer activities.

I am happy to report that even though the holiday weekend was hectic, I stayed on track with my training schedule! Saturday morning, before we left for the lake, I got up and ran my first 7 miler!!! Which means that I am now able to run further than half of a half! Nice, huh? Even though it was fairly early in the morning, the humid air hung like a water soaked wool blanket that I couldn't find my way out of. The sun was out too, which made it even hotter. I could feel the heavy air in my lungs and felt a struggle I hadn't had to face quite yet since being ill. The damage to my lungs is still fairly unknown, but I can say that humidity and extreme cold can make breathing difficult, so every inhale felt as though I were drowning. A sluggish run would be a good way to describe this one, but I did it, walking only once to stretch my legs a little.

The other news I have to report is that I received a call from my dermatologist with the results from my recent skin biopsy. I am happy to report that it is a benign lichenoid keratoses, which is a big medical term meaning that I don't have skin cancer!! A few weeks with a pretty strong steroid cream and I should be good to go. So make sure you are all wearing your sun screen before going out for your runs as well as any time you're out in the sun. It's just not worth the risk!!

I have continued my maintenance runs during the week and look forward to another 7 mile challenge this weekend. We are going to Iowa to visit my brother and so I get to run in a different environment, which I am looking very forward to! A change in scenery is always an added bonus. I have also signed up for a couple of other races to help keep myself motivated during this long stretch of training. The Green Bay Packers are hosting a 5k coming up at the end of the month and I'm going to tackle the Otto Grunski 10k in August. That will be the longest race I have evver done before the half, which seems to be sneaking up on me! Hard to believe it is well into July already.

Tomorrow holds a 4.5 mile run and another 4 on Friday morning. Then I'll get to rest up on Saturday for the 7 miles through cornfields in the great state of Iowa on Sunday. Gonna bring an extra cooler along to fill up on that incredible Iowa sweet corn! Don't worry, I'll brag about how great it is when I get back! Happy running everyone!!

Yet another training run and an anniversary I'd love to someday forget!

So it was the day after my big triathlon and I was scheduled to run 6 miles. I can honestly say that rolling over in bed and pulling the covers over my head was what I really wanted to do!! But somehow, I was able to pull my sore and achy body out of my bed and make my way to the kitchen where I start each and every day by putting my "eyes" in.

It's really not a difficult process, but it is tedious and some days it just gets old. I have to remove my right lens from the cleaner, rinse it, put it on the plunger, fill it with Celluvisc, top it with preservative free saline that has to be refrigerated and then stick it to my eye. Ok, one down. Then I have to take my prosthetic out of the case, put it on the plunger, stick it to my eye and then cover the outside with vaseline so I am able to blink. If the vaseline is too thick, I have to put artificial tears in right away and then I seem to be ok. And then of course, I have to reverse the process at night and include all of the cleaning that goes with it. And I must remember to sober up some if I've been drinking so I can do this without hurting myself or breaking anything!

I knew that although I was sore froom the day before, that I was lucky enough to have a friend who wanted to run with me. Kelli had been a sprinter back in the day and told me she had never run that far before. She could run fast, that I knew, but I thought for sure that if I could do this, she sure as heck could too! It wasn't long before she knocked on the door and we were on our way!

I don't recall paying much attention to the actual running itself. Just ask Kelli; my mouth was running a mile a minute!! Wouldn't shut up!! Couldn't, actually. I was so excited that she was willing to take on this crazy dream to run the half marathon that I was bubbling over with gratitude. We talked about everything from hair (we're both stylists), to running issues, to our men's motorcycles, to SJS, to training schedules. It wasn't long before we were on the home stretch and i couldn't believe how the time had flown by. It was absolutely amazing!! I think I experienced a true runner's high! kelli knocked those 6 miles out of the park and I was truly proud of her accomplishment. It isn't easy by any means and not everyone can do it! But we did! And we did it well!

Today, June 29th, is the 2 year anniversary of the onset of my Stevens Johnson Syndrome. I started the day out with a 3 mile run and what a beautiful day it is today. Sunny, not too warm. The weather guy called it "fall-like" and I think I might have to agree with him on that. I am notably far less stressed and anxious this year than I was last. I think I'm ready to just keep moving forward and not look back. The running has brought so much comfort and relief to me over the past 6 months. I am so grateful that I have that. That I am able to do it, even if it is slower than what I would really like it to be.

I may not always be this stable. I may have future problems with my eyes that only time will tell me, but for now I am comfortable. I am happy with my life and where I see parts of it going. The important parts, anyway.

So here's to my fellow SJS peeps on this beautiful summer day. A toast to your determination, and your fighting spirits - to your devotion to spare others from our nightmare!
May the road rise to meet you,
may the wind be always at your back,
may the sun shine warm upon your face,
the rain fall soft upon your fields,
and until we meet again
may God hold you in the palm of His hand.

Triathlon Day

Well, today was a big day!! I completed my first triathlon in 4 years and since getting sick. My original goal was to finish and finish strong, and I think that's exactly what I did!

The weather last night was stormy and I was a little concerned about the weather forecast for today, but it held up fine for the entire event. It started out a little dark and cloudy, but the sun came out just in time to start the swim; which was in a man-made pond that was warm as bath water! Ok, maybe not quite that warm. It was a 400 yard swim and honestly I haven't been in the water to do any type of training in over a year. Being a swimmer in high school and always feeling like it was my strongest event, I wasn't nervous about it at all. When the horn blew for Wave 4, I ran into the lake and dove forward, hoping and praying my goggles would stay in place! I wasn't worried about the swim, but I was worried about my eyes!

As I pulled my way through the water, I noticed the lack of vision in my left eye. I don't really notice it normally, but I did during the swim today. It was a bit awkward and I was conscious of it for the entire distance. I pushed on and and finished the swim feeling good.

Running to transition from swim to bike, I felt the pain in my foot from my toe. I had to run on sand and then grass and the ground was very uneven. I made it to transition, threw on my shoes and helmet and grabbed my bike. Luckily, the foot felt fine on the bike and I didn't think about my toe again until the run. Now, the bike! What do I say other than I plain ol' stink at it! The bike has always been my toughest event, which is kind of unusual for a triathlete. I just don't have the power in my legs that I need! So I chugged along while people continuously passed alongside of me. I felt a little frustration building, but focused on the odometer reading instead. The course was fairly flat, only a couple of notable hills, and surrounded by farm country. It really was a beautiful ride and for most of it I was all by myself. Pretty much bringing up the rear, accept for the two bikers I happened to pass! As I watched the miles getting closer to 15 on the odometer, I realized that I was still quite a ways out of town and only a few miles left until 15. What the heck? I was reassured that I hadn't taken a wrong turn by the orange cones along the road, but thought for sure something was off. Well, by the time I reached transition 2, my odometer read 24.5 miles! Ok, something was definitely wrong with my dang odometer!!! Uh, frustration continued!!!

So it was bike to run and I had to get my legs under me. There's no other way to describe the feeling of getting offf of your bike and breaking into a run other than your legs feel like wet noodles! That and you feel as though you are running in place since you aren't moving any faster than a snail's pace! As I trotted along, I saw my best friend running towards me. She had already nearly completed the run and I had just started! She kicked my ass today, but encouraged me to keep going as we passed. I noticed the pain in my foot, but by this time, I was so numb that it didn't much matter.

I just kept on, wanting to walk but not giving in to that feeling. I knew that eventually my legs would loosen up and the run would somehow get easier, and it did. People were encouraging me, saying I was looking good and that the turn around wasn't much farther. It was hot and humid as the sun beat down on us and it was all mind over matter at this point.

Within the last half mile, a young woman came upon me and began running next to me. I decided to try to just keep up with her and run alongside so that I had some sort of a pace. She looked much stronger than I was feeling and I'm glad I did just that. Her name was Micky and this was her first triathlon. She was from Milwaukee and we laughed about how she went to school in Oshkosh while I went to school outside of Milwaukee. Small world, we thought. I told her it had been four years since my last tri and we talked about my past experiences with the sport. I told her about having to start over with my training and how that all happened, the SJS story in an abbreviated version. Her response to me was very supportive and we ran the last bit together until she was met up with a friend and I told her to sprint it out!!! And they did!

The finish line was a few yards ahead of me and I could hear my husband cheering, my friend yelling encouragements and could see my dad taking pictures. It all began to hit me as I took those last steps; I had just completed a triathlon! I had conquered yet another fear - swimming with my prosthetic. I had taken back another of my old life's passions and it felt just as good today as it did four years ago. That uncontrollable smile came over my face yet again; making me feel incredibly stupid! But I was proud! Proud of my accomplishment. I had done it; and I had done it for me. It was an incredible day, an incredible accomplishment, an incredible feeling! Yet another step forward.

Taking the Plunge!

Ok, so here's the deal! Saturday is the Mighty Wolf Triathlon in Winneconne, WI. It's a super sprint and I've done it one other time - back in 2006. It was the last triathlon I participated in and I have decided to give it another try! Since I conquered my fear of getting on my bike and I know I can ride 15 miles, why not?

Like I said, it's a super sprint - 400 yd swim, 15 mile bike, and 3 mile run. So it isn't anything that is standing out in my mind as completely overwhelming! Besides, triathlons are my first love! Running is great, but splitting it up with two other events just adds so much more excitement for me. I can't wait!!

However, having said all of that, I am a little concerned. With my left eye covered by a $5,000 shell and my right eye with a $600 lens, I hope my goggles hold up!! Can't imagine losing either of them in the bottom of a damn pond! And then, my toe is still not right. It isn't healing, although the discoloration is gone. Every time I step down wearing my running shoes, a shot of pain radiates through the bottom of my right foot. Ugh!! I swear, it's always something!

Although I am a little more anxious than I would have been had I not gotten sick and had to deal with these little annoyances, I still feel confident that I can do this! My heart flutters uncontrollably every time I take back a piece of my old life!

I always thought that people who claimed they were not "disabled", but "differently abled" were just stuck on symantics. That there were better things to do in this world than nit-pick at words, labels, definitions, etc. However, I can now say that I get it! I GET IT!!! It makes sense to me! Because I am going to do this triathlon, just like the other athletes who will be standing on the beach with me in their swim/tri suits, caps, bib numbers and spitting in their goggles to prevent them from steaming up, and I am going to finish. I will just be doing it "differently!" I will be swimming with one usable eye. I will be biking with a mirror on my left side to see those who will most likely be passing me by, I will be stopping along the way to add artificial tears to my eyes so that I can blink, and I will be running with a broken toe! A toe that breaks often due to atrophy and nerve damage and constant pain. But I will swim it, I will bike it, I will run it, and I will finish it just like everyone else; with one foot in front of the other!

The Climb

Sunday was my first scheduled 6 mile route. I was a little surprised at how relaxed I felt since I had pretty much freaked out at the thought of 5 miles! But I was ready on Sunday. Ready to take my time, ready to walk if necessary and ready to just do it so that it was under my belt.

There's a song my husband downloaded for me onto my ipod the night before so that I had it with me if I felt things got tough along the way. A song that has kind of become my theme song since getting sick. It really fits in anywhere along my route to recovery. The little things I would accomplish in the hospital like being able to roll myself over and hold onto the bedrail while the nurses changed my dressings, or the morning I got my feeding tube removed because I had shown them I was able to consume enough calories on my own. Walking the full length of the burn unit with my walker without sitting down to rest, putting on real clothes instead of a hospital gown for the last several days on the unit, and conquering the steps in physical therapy so that I could finally leave the hospital and get back to my life.

I can almost see it
this dream I'm dreaming,
but there's a voice inside my head saying
"You'll never reach it!"

Then it fits with the continuation of physical therapy 3 times a week for 4 months after my release and all of the inredible things I did there. Graduating from a wheelchair and walker to a cane and then eventually letting go of that too. Walking on the treadmill without losing my balance and then jumping one footed on a trampoline. And now it fits with this dream and goal of running my first half marathon.

Every step I'm taking
every move I make
feels lost with no direction
my Faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb...

I started my run and hit the play button. Miley's voice belting through my headphones, I couldn't help but look straight ahead at the road in front of me and break into a smile. I felt so stupid! I just couldn't stop smiling! Why in the hell am I smiling?

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on...

And somewhere around mile 4, with two miles to go, it finally hit me! I was smiling because I could - could wake up every morning, could watch my children grow, could love my husband, could make our house a home, could go to work and love every moment of it, could call my friends on the phone or have lunch with them, could dream big again, and I could run! Run outside on the pavement like I used to and it didn't feel like running on loose sand. I didn't have to run on a treadmill anymore because I didn't have the strength to run anywhere else or because I was afraid of falling, or I was afraid of my eyes drying out and the pain that came with that, or the bright light from the sun. I could just put on my shoes and shades and run.

As I rounded the corner to our house, with the first 6 mile run I had EVER accomplished behind me, I realized how far I had actually come. Not how much farther I had to go, but the distance I had covered from the beginning of my new life to now. That's how I see it, anyway. My 3 months in the hospital were not about cheating death, but about the opportunity to live my life in a new way. To see the litttle things people talk about, but never truly understand. You hear talk about appreciating life and the things we all take for granted, but nobody ever really grasps that until it's forced upon them. And I'm no different. But I can now say that I do see things differently and in a new light. And as I see it...

There's always gonna be another mountain
I'm always gonna wanna make it move
always gonna be an uphill battle
sometimes I'm gonna have to lose

Ain't about how fast I get there
ain't about what's waiting on the other side
It's the climb - keep moving, keep climbing, keep the faith, keep your faith
It's all about, it's all about the climb!

Thanks, Miley!

You're kidding, right?

It's been a disappointing week for training! Although we were away on a nice family vacation, I only got one run in. I ran 3 miles on the treadmill on Monday and then on Wednesday, sprained or broke my pinky toe so bad I couldn't wear a shoe. No running for me in flip flops! I have very little movement in my toes, which makes them stiff and very brittle. There's been so much nerve damage and atrophy that I can very easily injur them. In fact, this is the second time in three months that this has happened.

So now it's Saturday. Last night I got a shoe on and ran 2 miles on the treadmill, but I struggled with that. I just can't seem to step down on that foot! And, on top of that frustration, I am scheduled to run my long run today. 5 miles. It's the last one scheduled until I bop up to 6 miles next week. Honestly, I'm feeling pretty down today!

I try to remain as positive as possible all of the time, at least in front of other people. But I have to say that today is not one of my good days. I'm watching the event ticker count down the days and am worried that I'm NEVER going to be ready in time! Seriously? What the hell am I thinking? What is it in my little brain that has made me think that I can do this? I've never run that far, even before the SJS! What makes me think that my tired, weak and "old" body can take this? Uh, I just don't know. Today, I just don't know.

Summer Vacation!

Wow! I am a few days behind!!! I should tell you that the doctor's appointment went as I thought it would. I was told there wasn't anything she could do for me and that I needed to see a dermatologist. Really? Isn't that what I said in the first place? Seriously!

So anyway, I have my appointment with the dermatologist on June 29th, and until then I am going to just remain as calm as possible! Nothing I can do about it right now, and even if there is something wrong, it's out of my hands for now.

It's day #4 of our family vacation here in Wisconsin Dells. We're staying at a nice resort and keeping the kids busy while having some down time in the evening for myself and my husband. The weather today, however, is lousy and we're sitting in a McDonald's utilizing their free Wifi trying to answer emails from the office, from home and , of course, checking Face Book!! Too damn cheap to pay $7 a day to be in my computer!! Crazy!!!!

My training has continued even though I am on vacation! I ran 5 miles before leaving town on Saturday, 3 miles on the treadmill yesterday and plan to do 3.5 tomorrow. I was so proud of my run on Saturday. I whittled a little time off of last week's long run and never had to walk! I felt pretty strong throughout the entire thing and was relieved! Of course, yesterday was different. My 3 miles on the dreadmill were killer and I couldn't wait for it to be over! I thought for sure it would be so much easier, but I missed the changing scenery and the feel of the breeze. The only changing scenery in the fitness room was people coming in and out to check out the facility, knowing full well they would never step in that room again during their one week vacation, and the only breeze came from a box fan carefully positioned on top of the elyptical machine that looked as though it hadn't been used...ever! Why are hotel/resort fitness centers so unwelcoming? Like the silver and grey machines are there laughing at you! Like you're not a real athlete if you are using them on vacation! What? Don't real athletes ever take a break from the realities of the world?

So, here's some cool news for you!! Before we left town, I was asked by the Fox Cities Marathon to sing the National Anthem before the Kids Fun Run at the Fox Cities Stadium on Friday, September 17th! I was honored to sing our Nation's Anthem last year before the full marathon, so getting to do it again will be great! I'm looking forward to being a part of this awesome event!!

I am hoping everyone is enjoying the first week of the kids being on summer vacation! I, for one, am about ready to send them back! Don't get me wrong, we have had some great moments on our vacation, but my moody 5 year old is driving me crazy! One minute he is fine, the next he is crabby as all get out!! As he is right about now! Maybe a run in the rain tonight will do me some good!!!! Or maybe a short stint in the outdoor hot tub where no children under the age of 16 are allowed! Yeah, that sounds good!!!

The scare?

I called and set up an appointment with my doctor today. Not really a big deal, usually. But I think I might have something to be worried about. Ok, not really worried about it yet other than worried that I might have to worry about it... eventually.

I've read on several websites that SJS survivors need to be monitored for skin disorders or cancer. I've never thought much about the few little spots I have that are a now, to me, a little questionable. I just chalked it up to the fact that I lost my skin and now it's back. Although it's scarred, bumpy and discolored. However, I have about 3 areas that are kinda weird looking. Not like a weird shaped mole or something like that, just areas that haven't healed or were healing at one time, stopped and are now getting bigger. What the hell?

Seriously? I nearly die from losing my skin and now it grows back only to scare the shit out of me that I may die again! What am I? A cat? Ah!!!!

I know, it's probably nothing and it's good that I'm getting it all checked out today. The doctor may biopsy it and have me wait for the results to come back. During which time my mind will race, jump to conclusions, and basically freak me out! Great! Can't wait for that!

So what the heck is a girl supposed to do in this situation? Be strong, don't freak out, just wait and see, blah, blah, blah! Ok, no problem. Will do! And tomorrow, after this appointment is over and I'm waiting to hear something from the doctor... I'm going to run. Run 3 1/2 miles like I'm scheduled to do. With my awesome New Balance running shoes, my wrap around shades, my ipod and my artificial tears in hand. I'm gonna run. And the next day, I'm going to run again. I'm going to run until I can't anymore and I'm going to love every minute of it, because I can. I'm going to enjoy it because I can.

A Little About SJS

This picture was taken about 2 days prior to me getting sick.

So I thought I should tell you a little bit about this Stevens Johnson Syndrome. Well, it's like this - it's and adverse drug reaction (most often times) and it effects the mucous membranes of your body as well as the top layers of your skin. Now I don't have a medical background and do no claim to be anything that I'm not. This is all about my experience! Got it?

It all started for me after I was on a medication for 16 days. I was taking it because I had been fighting depression and my doctor thought this would help. My husband and I were at a local Country Music Festival camping with our friends and having the time of our lives. The short of it is that I started to find a red rash on different parts of my body. I went to see a doctor who thought Benadryl and rest would help. That the reaction would just take time to work it's way through. Within 24 hours, I was admitted to the hospital with blisters over most of my body.


I was eventually moved to a burn unit, where I stayed for approximately three months. The process of SJS is almost like a second degree burn from the inside out. My blisters filled with fluid, they spread over 95% of my body and the skin began to slough off of my body. I was intebated twice, had a feeding tube for nutrients because I could not eat or drink. The lining of my lungs, esophagus and mouth began shedding as well. The doctors prepared my family for the worst, but remained optimistic.

The biggest fears were infection, organ failure and pneumonia. You see, when your body has no way to protect itself from the outside world, it is likely that infection will kill you. As it turned out, all three of these things happened to me! I had sepsis, which they treated me for with antibiotics. Once they had that under control I started to make a change for the better. They were able to keep me awake for longer periods of time and even get me up and around. However, the fluid in my lungs began to cause problems and I developed pneumonia. After that spell, my kidneys began shutting down and I gained 65 lbs. of water weight. The medication they were trying to use to take the weight off wasn't working, so they hooked me up to dialysis to pull the water off a drop at a time.
I know these pictures are pretty graphic, and I'm sorry about that. I don't want to freak my readers out, and I know some of you have seen them. But for those of you who haven't, this is reality!

I went into the hospital in the early morning hours of June 29, 2008 and came home in the late afternoon of September 16, 2008. I had seen my boys only once during that time and I am happy to report that even though I had a trache, and I was still bandaged, I remember seeing them! I was so happy! The pig skin they used to stimulate my skin growth worked and I can say that now have a full body of skin!!!! The weight eventually all came off, and then some, but I was going to live through this!!

When my husband drove us home from Milwaukee, my yard was covered with Welcome Home signs! I had never been so glad to see my sweet little house!

The road to recovery has been a very long one and things have come up since then that I have had to deal with. The worst of which are my eyes. I no longer make tears on my own! I have to use artificial tears and the vision in my left eye is nearly gone. I can see shapes and colors, but that is all. I now wear a prosthetic over that eye to keep the light out of it because it is so sensitive. I wear a sclera lens in my right eye which keeps fluid on the eye all of the time and I am able to see 20/20 out of that one. I am so grateful. I have had two surgeries since coming home and there may be more down the line. But that is not unusual for those of us who have survived this rare disease. A disease that can happen to anyone at anytime. They told me it was a 1 in a million chance, but now it is being reported that it is somewhere between 2-6 out of every million. It's still rare, only about 300 cases in the US every year. But through the Internet, i have met so many!! People who are now my friends that I may never meet in person, but know the struggles I face every day.

I hope this hasn't scared you, just made you aware of it. There is information out there for you if you want to learn more. I hope that you will take the time to look it up, read your own medication bottles and those of the ones you love. Take into consideration the love and joy you have each and every day in the little things. Together, we can spread the word and make some noise so that others may be spared! And don't forget to keep putting one foot in front of the other! That's what I'm going to do! I've got 3 miles to put in yet today!!

Got 'er done!!

So I hope everyone had a fantastic Memorial Day weekend!! For the first time in a long time, the weather was great!! We visited some friends yesterday and planted a garden with them at their house. The kids were in the pool from about noon until 8:00 and got out only to eat in between! Brings back lots of memories of doing the same thing as a kid. And us parents even got in on the swimming for awhile. It really was a fantastic day.

Earlier Sunday morning, I rolled out of bed and started getting ready for my run. Luckily, my husband said he would do this one with me so I didn't have to do it alone! I pretty much woke him up and told him to get a move on! I wanted to get this run over with and especially before the heat got bad. So off we went!! I always wear my headphones, just in case I need a little musical motivation! Usually Paramore, Nickelback or Miranda Lambert - all depending on distance and pace! If I want to start out and keep the same solid pace for a shorter run, I listen to Paramore. If I'm struggling with energy or just plain tired, I crank up the Nickelback to rock out the rest of it. And, if I'm looking for a nice and easy pace, Miranda always makes the time fly!

But on this run, I figured I would only use it if I needed it. My husband kept me thinking about things other than the pain I was having in my right knee and my left hip. I can say that my lungs never felt like they were going to explode, and that's a good thing! Although my legs were pretty tired. The route we ran was nice and flat with enough shade to cool us off when we needed it. And once, right when I asked for a little breeze and shade, I got exactly that! The wind picked up at just the right moment and when we turned the corner, there was a beautiful shade tree just ahead. We laughed and chalked it up to God being with me the entire time. As He always seems to be.

Well, I did it!!! I slowed to walk about three times, but for no more than a couple of yards each time. And not once did I have to use my music! I was so proud of myself!!! I couldn't believe I had done it! Couldn't believe my legs pushed on and never failed me! Couldn't believe that I had done it in 1:04:36 which was only 4 1/2 minutes longer than I had hoped for - but my husband could! What was amazing to me, was just another everyday accomplishment to him. Not because he doesn't think it's a big deal or that it's something just everyone can do. And not because he takes it for granted that I'll just do it - but because he has seen all that I have overcome and worked so hard to regain! He knows the pain I've suffered better than anyone because he was there to witness it. And he was there for all 5 miles to see each and every step and to give me the gentle encouragement I needed, but only a few times!

He was there - like every time I've ever needed him and will be whenever I need him again! He is my strongest cheerleader and bigggest fan! He is my strength and my courage, each and every day. He is my husband, he is the father of my two beautiful boys and he is my best friend! He is my champion!! He believes in me when I can't seem to do it for myself and I love him for that. I am so grateful! Grateful for him, for our sons and for the first 5 mile hurdle to be over!! I have two more 5 mile long runs scheduled before the next big hurdle of 6 miles. So I think I can relax a little bit over the next two weeks. Just keep plugging away. One foot in front of the other!