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!!