Members of Team SJS just minutes before the start of the 2010 Fox Cities Half Marathon!

Friday, August 17, 2012

Every Month should be SJS Awareness Month

First of all, thank you Governor Walker for Proclaiming August as Stevens Johnson Syndrome Awareness Month in the State of Wisconsin!!!!  Thank you for recognizing the need for education and awareness.

Believe it or not, the 3rd Annual SJS Weekend is just around the corner and I am looking forward to spending time with fellow Survivors from around the world.  All of us together, spreading the news of SJS and what it can do, is never wrong.  There will be new faces this year and familiar ones as well.  Survivors of all ages and their families as well.  It's a weekend of laughter, of "tears", of strength and courage.  We come together to support each other, to build each other up and to help save lives with the power of knowledge.  Knowledge that most of us were never armed with.  Don't be confused by warning labels on medications or the empty words of doctors telling you that it is a "rare" illness, that it's a rash, that it is not likely to happen to you.  Maybe it isn't.  Maybe it won't happen to you, but it may happen to someone you love or someone you know.

There is no cure  for Stevens Johnson Syndrome or TENs.  There is no way to know how severe it will be for each person.  It is different for everyone.  Some of us had the rash, some of us blistered, some of us lost skin, some of us lost our vision, some of us can't cry, some of us lost finger and toe nails, some of us will never be able to have children, some of us can't even sit in the sun or handle bright lights, some of us now have COPD, some of us died, some of us survived for a few years and then died because of complications due to SJS, most of us live in constant fear of it happening again, and some of us have had it happen.

There is no opinion about any of that.  All of that is FACT!  I may not know all of the scientific reasons for why this happens or how it happens, but I DO know that it happened to ME!  I DO know  that I live with this every day.  Not some days, EVERY DAY!  And I DO know that I am doing a pretty damn good job of living my life.  Along with my family and friends, I have built a new life.  One from scratch, honestly.  I have started from the basics and progressed to training for a full marathon.  There are times that I wonder if I truly am capable of 26.2, but most of the time I know that I am.  I am a Fighter, I am a Survivor, and I will finish it.  The good with the bad, the things I am proud of and the things that I am not will be carried across that Finish Line.  But I will NEVER let ANYONE knock me down for good.  I may rise to the occasion, I may fall, but I will get back up.  Of that you can be certain!

Monday, July 16, 2012

Tomorrow's a big day!!

Now we're into the part of the training schedule that has made me a bit nervous from the first time I looked at it.  14 miles tomorrow.  Ok, it's only .9 more miles than a half marathon, which I have done.  No biggie, or at least it shouldn't be.  But I am shaking in my Nikes a bit.  The weather is still horrible and today there is a heat advisory until 9 pm tonight.  Tomorrow is going to be tough on the lungs and a big mental game.  Here's where the 20% physical and 80% mental comes in, right?

So, I'll keep you posted on how tomorrow's "longest run ever for me" goes!  Now to hydrate and figure out how to get to bed at a decent time!  Say...6:30 pm?

Thursday, July 5, 2012

How many miles are in a marathon?

It's official, summer is halfway over!  My dog, Toby, is horribly traumatized by last night's glorious display of our country's birthday.  No, he wasn't with us at the park, but the full evening of fireworks put on by the city and fellow neighbors has me wondering if he will need medication just so he can go outside to do his business from now on.  Poor thing. His constant panting and shaking and running back to the safety of the house reminds me of someone else I know.  I am into full swing marathon training now and there are days that  are filled with panting, nervous shakes and  pulling the covers back over my head to hide from the ever lurking race day.  Don't worry, Toby, I get it!  

According to the counter on my blog, I have 94 days to get ready for this thing.  And so far, things have been going...yep just that...going.  Following my training schedule has proven to be a bit more difficult than I had originally thought.  Three nights a week at the baseball diamond for my boys' games, volunteering to take on the responsibility of the concession stand, working 3 evenings a week at the salon and the unbelievable heat we have had in Wisconsin this year has only added to the difficulty of training for something of this magnitude.

My running partner, Deb, and I have also each had some physical setbacks. We have completed 2 half marathons together and have struggled with each one due to the extreme heat and humidity, not to mention the unbelievable amounts of hills in the Fort Atkinson race.  Jeez!  Oh, and we finished Green Bay this year not knowing that it had been cancelled due to the amount of runners needing medical attention along the course. We knew the heat was bad, but no one had told us that the race had been cancelled a mere 7 minutes prior to us crossing the finish line, so, as Forrest Gump would say, we just kept running. Although our times did not count that day, we knew what we had conquered on that course.  

Deb had a serious scare with a bronchial spasm that brought both of us to tears and she has had it happen a few more times.  I am dealing with runner's knee in my left and an achilles tendon issue in my right ankle.  None of these things would stop us from running at this point.  Marathon training brings on a laundry list of issues that you need to deal with as you progress in miles.  People bruise and lose toenails, ice packs are a common theme and resting on a running day will mess with your head something fierce.  It's just the nature of the beast.  Without all of these things, running a marathon would  mean nothing and everyone would be doing it.  

Our long run this week was a 12 miler.  So we have a long way to go before we hit those really scary numbers like 17, 18, 19 or the big whopper 20!  And then, once we do the 20 miles, on race day we still have 6.2 more miles to go.  Just an easy 10k, right?

My friend, Jenny, asked me this week on the long run if I ever thought I would be running a marathon.  Jenny was there cheering me on the day I finished my first sprint triathlon, and I thought for sure I might die then!  But 7 years later, I have survived TENs and have 5 half marathons under my belt.  I told her that I decided to run those 26.2 miles to push my body past the point that I ever thought it would be able to go just to prove to myself that I am no longer sick.  I am no longer teetering on the edge of  having a pulse and no longer breathing.  Because, honestly, that is what scares me the most some days.  I was just too close to that edge.  One misstep, and I would have missed those baseball games, those fireworks, those moments with my husband and children that I deserve to have.  I would have caused them pain that no children or husband or mother or father or brother or friend should ever have to feel.  This marathon is about continuing to beat an illness that has won in so many other cases, but not mine.  This  marathon is carrying me farther and farther away from death's door and I for one am grateful for it.

So here I sit, resting on a scheduled run day with ice packs on both legs and a heat advisory until tomorrow night at 10 pm.  My mind is racing, doubting that I will be ready.  But I know that I won't be and that will be ok.  Very few first timers can say that they were trained well enough for the big show.  This one is for finishing, for feeling ok when it's over (because I know  I'm not going to feel real great), and for being able to put that 26.2 sticker on my car.  That's what this one's about.  Who knows, maybe one day there will be another and that one can be for everything else.

Thursday, May 17, 2012

Enjoying the Journey

It's been nearly 1 year since I met my friend and running partner, Deb.  I had always wanted to find someone to run with that was willing to continue and follow through with training schedules.  Someone to hold myself accountable to if need be, someone to do races with, to have a similar pace so I didn't have to feel guilty for holding him/her back or feeling like I had to push harder to keep up, and someone who loves this sport as much or more than I do.  Well, I have found that in Deb and much, much more.

This Sunday, we are running our first half marathon together.  We have trained through the cold and dreary months, changed our work schedules to be able to run together, have each recovered from surgeries and/or hospitalizations, texted and emailed words of encouragement and support, gotten to know each other's families, are now in a book club together, agreed to sign up and train for our first full marathon, and then after that get matching tattoos of our 26.2 accomplishment.  Nuts, right?

Yeah, maybe, but I will say that my friendship with Deb, and so many other runners that I have met in the community this past year, is more than I ever expected from this sport.  For a long time, I felt very alone after my illness.  Of course, I always had my SJS family that I could chat with through Facebook or even call if things were bad.  But I always felt different when it was just me in my community.  If Mike and I would go out, all I could think was that people were staring at my scarred skin or my prosthetic eye wondering what in the heck was wrong with me  or if they could figure out which eye was real and which was fake.  I was self conscious of putting tears in my eyes every few minutes and I felt as though when people heard my story, they felt pity for me.  I HATED that!  It's tough because you want people to know what you went through in order to educate them about the illness, but you also want to just go back to living a "normal" life and not be just a Survivor of a horrible, flesh eating disease.  I wanted to be me.  That's it.

So when I started at the No Boundaries Half/Full Marathon Training group through our local running store, Fleet Feet, I was amazed to find that the people who were there were incredible in their own right.  Some people were losing large amounts of weight, others were running their first marathon in honor of a loved one who  had battled an illness or lost that battle.  People were running for themselves or for others and no matter what, they weren't giving up. I found myself drawn to their determination, pulled into their passion to train hard and finish strong.  They became my friends and I am forever changed by this community.

Thanks to all of my running friends, I am as "normal" again as I will ever be. When I am with them, I am just another person who runs.  They encourage me, support me, cheer me on and pick me up when I fall.  They are my angels on Earth.

As for Deb, she keeps me grounded.  She pushes me to my limits and has been the main reason I feel whole again.  She doesn't see me as being blind in one eye, she doesn't see me with my nerve damaged feet, she doesn't care that that I have scarred skin, although she has reminded me on a few occasions to wear sunscreen.  She sees me as her running partner, her friend, the idiot who thought it would be a great idea to do our first full this year!

The weather forecast for Sunday is extreme heat and lots of road construction along the route.  So we'll see how we do.  We have goals lined up as A, B, and C.  A is to finish, B is to not end up in the medical tent and C is to just have FUN!  Trust the process, enjoy the journey, right Deb?

Tuesday, April 3, 2012

Not enough time in a day!

I have said this before and I will say it again, running is one of the best things that has happened in my life!  I have  found a strength I never thought I had, the ability to be an athlete when I never could be when I was younger, I have made some of the dearest friends I ever could have asked for and I have been able to keep depression at bay which in turn has made me a much healthier and better person.  I am so grateful and love it so much!  However, there are some pitfalls to this sport and at this point, I may have fallen into a few of them.

My race schedule this year is bigger than it's ever been.  I swore up and down I  would NEVER do a full marathon, and this year I have signed up and paid for my first one ever!  I must have been under the influence or completely out of my mind when that became a good idea in my head!  There are numerous half marathons as well as a couple of 55+ mile relays of which I am a part of.  It is all so exciting when you're planning your season of races at the beginning of the year, but when you get down to it and the training is getting heavy, it is easy for me to get bogged down with life.

I have a relay coming up in 2 week and then a half marathon in just over 6.  And for some reason, I am feeling ill prepared for that half marathon.  I know that I have been having a difficult time fitting in my training with my family's crazy schedule as well as my unusual work schedule.  My house feels a little something like one of those hoarder shows with papers from school projects, magazines, dishes in the sink, dog toys all over the floor, folded laundry stacked in piles on the dresser, clutter on the kitchen counter, a bathroom that needs to be cleaned and floors needing to be swept.  The fridge needs a good over haul, the dishwasher needs to be emptied, wedding invitations need to be responded to, grocery lists and weekly menus need to be made and there is a sticky film of maple syrup on the dining room table where each of my boys eat their meals every day. To put it in a plain and simple way, I am NOT focused!!

I can't seem to complete one task from beginning to end anymore.  I start one thing, the phone rings, the dog barks, the stack of papers on the counter draws my attention away from tending to the sticky mess on the table and I am forever lost.  I now have a half of a stack of papers that I have sorted with 14 more things that need to be signed and put back in the mail, a dog sleeping under my feet at the kitchen sink where the dishes have somehow multiplied and a quarter less sticky spot on my dining table, but a sticky spot none-the-less.  And that is all on a day that I don't have to work!  We won't even talk about what doesn't get accomplished on those days!!  

How in the world am I to refocus my little world into manageable bits and pieces so that I don't go and completely lose my mind?  It used to be that I would go for my scheduled run and be happier, a little more energetic and motivated, but lately that hasn't been the case at all!   Now I feel like I am drowning in tasks needing to be done, unhappy family members needing more and more of me or my time, friends wondering what in the hell happened to me because they haven't seen or heard from me in weeks, and a training scheduling pointing it's long, skinny finger at me with a scowl on it's face judging me for not getting the miles in while all I want to do is point a different finger right back at it in the vertical position rather than horizontal!

Am I over trained?  Am I trained enough?  Am I headcase or just an every day, average, working mother of two boys with busy schedules, a husband wanting more time with his wife and a little more accomplished around the house?  Is it time to back off on the miles and hit the cross training a little harder?  Is it feasible or realistic to think I can do all of the events on the calendar?  Am I being selfish because that's what I want to do?  Am I bad wife and mother because I have focused so much time on my training in the past?  Is it all just catching up to me?  

I have no idea!  I don't know the answer to any of those questions right now.  What I do know is that I need a shower from this morning's workout!  And a nap would be phenomenal, but that isn't going to happen!  So I think I'll take that shower, defrost some chicken for dinner, grab a cup of coffee, and just take a deep breath! That, I know I can handle!  And maybe,  just maybe, I'll finish those dishes.  Completing something is better than nothing, right?

Friday, March 30, 2012

Surf City Half Marathon

So, nearly two months after the fact, I think I might possibly have a few minutes to write about my incredible trip to San Diego, the events leading up to the trip and the footprint it has indefinitely left on my soul.  I can honestly say that training for that half marathon was the most focused I have been before any event, other than maybe my first triathlon.  It was the most incredible and gracious gift that I had ever been given.  My coach, Rob, handed me an opportunity I didn't know how to refuse, even though my head was telling me that he was crazy for doing it and that I wasn't anything special!  Why would he want to train me, fly my husband and I out to San Diego, let us stay with him and then run a half marathon with me?  Little ol' me?  Really?  Besides, he'd never even met me!!  After being there, meeting my incredible coach for the first time in person and getting to know him better and better, I still can't wrap my head around it.  There are just people in this world that make you want to become a better person.  They do the most selfless things and ask nothing in return and want you to believe that you are worth all of it.  I know this, because Rob is one of those people!  I like to believe that God has brought Rob into my life so that one day I can show someone else the grace that he has shown me. There's just no other answer.

So, the week did not start out the way we had planned!  Not by a long shot!  The short of it is that at the end of the previous week, I began having some problems with my bad eye.  The eye that I wear the prosthetic in. I was in a lot of pain. The type of aching pain like a sinus headache, something I have never really struggled with before, and then there was this horrible swelling under my left eye as if someone had cold clocked me a good one!  It was red, warm to the touch, painful and swollen for several days.  The stupid thing is that I really didn't think too much of it until 4:00 am on Sunday morning when the pain woke me from a solid sleep.  It was then that Mike and I made our way to the hospital.

Thinking it would be one of those, "here is an antibiotic (enter nervous tics and traumatic fear) and some pain meds, come back if it gets worse" kind of deals, but within an hour, I was being admitted.  Admitted??  What??  And then I was being wheeled in for a CT scan of my head.  Three IV antibiotics, pain medication that brought on intense nausea and vomiting, and a pretty scary CT scan left me with a diagnosis of Periorbital Cellulitis.  Of course my first reaction was that this had something to do with FAT!  Had to, right?  Cellulitis sure sounds a lot like cellulite to me!!  But basically, the area around my eye was infected and the fear was that the infection had traveled into the bone between my eye socket and sinuses.  If that was the case, we were looking at 6-8 weeks of IV antibiotics.  We wouldn't know anything for a few days when they would repeat the CT scan to see if there were any improvements.

Of course, my first words were, "Well, I have a plane to catch on Thursday and a half marathon to run on Sunday, so just make that happen!"  Hmmm....I don't think that was even close to being on the radar of the three doctors who were now in charge of my care.  A hospitalist, an ENT and an Infectious Disease doc.  They told me I couldn't fly, then they told me I might be able to fly, but wouldn't be able to run, they told me they would have to put in a PIC line and I would have to go to a hospital in Sand Diego twice a day for IV antibiotics while I was there, then they told me an oral antibiotic just might do the trick.  I had no idea what was going to happen!  The thought of sunny days, warmer temperatures and those looming 13.1 miles seemed so out of reach at that point.  I spent my days pushing my IV pole around the unit, visiting with friends and family and trying to stay positive.  I was going to California, damn it!  And I was going to run the race of a lifetime too!  I had cheated death on more than one occasion, a set back of cellulite or whatever the heck this was, sure wasn't going to mess with my half marathon!

A few changes were made to my antibiotics and, of course, the fear of SJS returning took hold of my heart and mind and ran with it.  I was scared and angry and hopeful all at the same time. Each and every time they would come in with a new bag of fluid, I thought this could possibly be me staring at the culprit of another bout of that terrible illness.  The fear is unlike anything I have ever experienced before I got sick, but lives with me every time I have to take a medication. But after the second CT scan on that Tuesday morning, I was on my way home that afternoon with a bottle of antibiotics, steroids and the best case scenario I could have asked for.  The infection  seemed to be responding to the treatment and I was getting on that plane in two days!!!!

So that's what we did!  Thursday afternoon, Mike and I got on the plane and within a few hours, we were shedding our jackets, driving past beaches and palm trees on our way to Rob's house!  Holy crap!  We were really in California!!!

So many things happened while we were there, but the reason we were there was to run the Surf City Half Marathon in Huntington Beach!  The doctors had told me that they wouldn't recommend me running the race, but I wasn't in any pain, the swelling was gone and I saw no reason not to do it.  So after a week of not running, the three of us went for a short two mile run to shake the cob webs out and fill our lungs with some awesome California air!

We ran the two miles and I was feeling a bit weak.  Of course, our pace was a bit quick for me, but ran along the boardwalk and I could feel the salty ocean air in my face.  The Pacific was so close I just had to walk across the sand to touch it.  The sun, nearly ready to set, was warm on my skin and if I could make tears, I'm sure I would have had one or two for the beauty of it all.

Checking out the Expo with Rob.

 The morning of the race was absolutely incredible!!  The sun was shining, the temperatures were in the low 60's, so getting to run without three layers of clothes was incredibly liberating!!  There were  nearly 20,000 runners between the full and half marathon, so this was a pretty big deal!

Rob and I had talked earlier about a plan.  My initial plan was to run the first 3 or 4 miles at a  slower pace, about 11:00 or so.  Then, after I settled in and could figure out how I was feeling, pick it up a bit and save some for the finish.  My goal was to finish in 2:30:00 and  feel good! That was my plan!

So when the "gun" went off for our wave, although I'm still not sure we started with the correct wave, I was doing everything I could to pull back the reigns a bit.  There were so many runners that I spent a lot of time bobbing and weaving trying to stay between Mike, who was on my right, and Rob, on my left.  I figured if I placed myself between these two big guys, I wouldn't end up kissing the pavement if someone cut me off on my blind side.  And, as it has in the past, my plan paid off!  No road rash on this girl!!!  The first three miles were straight out on the Pacific Coast Highway.  We would catch glimpses  of the beach or Ocean on our left and it was amazing.  I could see that my pace was holding steady at a 10:30.  A little quick, but I was feeling so strong and holding back was difficult with this many people around, so I listened to the Forrest Gump in my head and "just kept running!"  We turned to the right after mile three and ran through a residential area with a few slight hills and lots of curvy streets.  The scenery was beautiful and there were lots of cheerleaders along the route.  Spirits were high and at about 6 we turned back onto  the PCH for another 2 miles North before hitting the turn around to bring it 5 miles back in.  By this time, I was ready for that turn around.  I was holding that 10:30 pace pretty well and I was beginning to wonder where the heck mile 8 was!!

We reached the turnaround and headed toward the finish line.  At this point, my pace slowed and looking down at my Garmin started to become a bit of a problem for me.  I could feel some frustration building as I watched my pace get closer to that 11:00.  I wanted that 2:30:00 so bad, I was quite sure I could taste it.  Rob helped me through some discomfort in my right leg, telling me to widen my stance and shorten my stride. It was helping.  I found myself looking to the ground because I was feeling a slow and gradual incline and at mile 10, that was the last thing I wanted to tackle.  Rob said it was just a bit longer before the incline leveled off, but it never did!  Those  darn last 5 miles were all up "hill".  Again, Rob told me to look straight ahead and watch the bobbing heads in front of me, but that made it all worse!  I knew we were climbing, so looking down was all I could do at that point.  I was getting sore and tired.

And then, like a bat to the forehead, it hit me!  Yet again, I was in a situation where I was finding that I am so much stronger than I ever thought that I was or could be.  After three days in the hospital with a very serious infection, I was thousands of miles from home running a half marathon with my incredible husband and coach!  Yeah, I had run 13.1 miles before, but never feeling as strong as I was that day.  Sure, I was tired and my muscles were burning, but I was going to set a new PR that day, I could feel it in every step and I knew it with every beat of my heart.  Well, that and I was watching the time on my Garmin!  Must have been the Prednisone!  Hmmm...I don't think that is the steroid of choice, but hey, it just might have worked for me that day!

So as we neared the finish line, I savored every brief moment.  Although my body was ready to stop, I didn't want any of it to be over!  I had trained so hard, I had come so far and although finishing was the ultimate goal, I didn't ever want to get there.  Could this be the runner's high they speak of?  Or was it just that I had grown in ways that surprised even me?  The simple parts of life were becoming large, palpable, taking on a life of their own?  Was I truly learning to live again?  Without fear, doubt, anger, anxiety even?  No, not completely, but maybe with less of it than I used to.  And learning to live again after nearly dying, has got to be the scariest thing I have ever done.  Because now you know what you stand to lose.  You are aware of all of the beautiful things around you that before you never even knew were there.  And that in itself is worth living for!

We finished that race, not in 2:30:00, but in 2:25:44.  We had crossed the finish line more than 4 minutes faster than my original goal and nearly 15 minutes sooner than my previous Personal Record!  I had set a new PR for myself and on top of all of that, I felt AMAZING!  There were no dehydration issues, no stomach pains, and other than some tired muscles, I was perfect!  It was a day to celebrate for sure!

Mike and I enjoyed our trip to California so much.  So many highlights from that trip!  Seeing dolphins swimming in the ocean, stepping foot in the Pacific Ocean, getting to know my incredible coach, eating amazing food, setting personal bests, and continuing to learn more about myself.  But one thing that I will NEVER forget is getting to meet Silver Medalist and 2009 New York City Marathon winner, Meb Keflezighi.  Actually, we ate pizza with him!  Oh yes we did!  Meb and Rob happen to be dear friends and Rob asked Meb if he would be willing to join us for dinner.  He also shared part of my story with Meb, who also came into running with an incredible story of his own, and told him of my Surf City PR.  The surprising thing to Mike and I about Meb was how humble he was.  He congratulated me on a great race!  Ha!  He congratulated me!!!  Just a girl from Wisconsin who averages a 10:30 pace all for the sake of raising awareness of an illness almost no one has ever heard of.  A girl who had just weeks before watched Meb  win the Olympic marathon Trials on tv!  I watched him in my sweats, sitting on my couch, finish 26.2 miles in 2:09:07!  It was in that moment that he taught me, and I finally learned, that everyone has a personal best and that a mile is still a mile no matter how quickly you complete it!  In the presence of one of the best distance runner's of all time, I believed I was a runner!  I too am a runner!  Thank you, Meb!

To say that California was amazing would be an understatement!  California was life changing for me and maybe even for my husband.  With all of the wonderful things that we were able to do, I was also reminded that he will always be my biggest supporter!  He believes in me, encourages me and holds me up when  need it most.  What a blessed life I have!

Saturday, February 4, 2012

Pre-race Jitters?

In order to catch you up on the most recent events, I have to tell you a bit about my last week. I had been suffering a bit with some pain under my left eye, the bad one. Nothing major, so I thought, until it swelled to a rather large and disturbing size. On Friday morning, the swelling was down and I went to work as usual. Saturday morning I met up with my relay team, Team Opus, for a get together training run after doing my own 4 miles. It had snowed the night before and it was very windy, so I found the run challenging and I was tired.

Again, didn't think much of it until later in the afternoon when the pain around my eye increased. I took the prosthetic out and rested as much as I could, went to bed that night and figured I'd be fine in the morning. Well, at about 4:00 am, I was sitting up in bed, grabbing my eye telling mike something was terribly wrong. A quick call to the Nurse On Call and we were off to the emergency room.

Two thoughts were going through my mind at this time. 1) I am leaving for California in 5 days and 2) please let them give me an antibiotic that won't kill me and send me home. A CT scan later showed that the culprit was periorbital cellulitis probably caused by a sinus infection I didn't realize I even had. I like to tahink it's because I have a strong pain threshold, but it's probably more me I was just too stupid or stubborn to think that anything was wrong. So, I was shocked to find out that oral antibiotics would not be the way to go for me at this time since the infection was pretty extensive. The doctors were concerned the infection had travelled into the bone, which needed IV antibiotics. Probably would be out of the hospital in 24 hours.

The fear I felt in that hospital is something I could probably never explain to someone who has not had the experience I had during my TENs ordeal. My anxiety was high and all I wanted to do was get out of there. My thoughts of getting to run Surf City turned hazy and I had to realize that my body just might not be able to overcome this quick enough. I had three different doctors working with me. A general hospitalist, an infectious disease specialist and an ENT. All of them were giving me different ideas as to how to treat the infection. All of them pretty much told me I wouldn't be going to California. The first round of pain medications made me horribly sick that first day. I couldn't keep anything down and the nausea was a grim reminder of the months I spent on the burn unit. I was hooked up to three different antibiotics, hoping to kill the bacteria causing all of this, yet I continuously prayed that I didn't notice any itching or the start of a rash! The fear was bigger than I was at this point.

The doctors came in, told me I would be there a few more days and that if the second CT showed that the infection had travelled, that I would be facing 6-8 weeks of IV antibiotics. The race may not be out for sure, according to one doctor. We would just have to make arrangements with a hospital in San Diego to get my IV's each day. The thought of that perked me up a little, but it sounded a tad ridiculous. On Monday, late afternoon, the ENT informed me that he didn't believe the infection had travelled and that there would be no reason for me to not go to California. Although, he didn't think it would be wise for me to run the 13.1 I had been training for since September. It all depended on the next morning's CT scan. I could either be going home and able to make Thursday's flight, or I would remain where I was until a scan came back where oral antibiotics would be sufficient.

Needless to say, sleep was the last thing on my mind and it was the longest night of my life. So many friends and family had come to visit me during those two days! I was surrounded by love, support, laughter, tears and of course, banana cream pie blizzard, Starbucks coffee, and blueberry muffins! It was all of those things that saved me from going crazy!!

Tuesday morning, they came to get me early for the CT scan. I was so releived to just get it over. Although they warn you that it will feel as though you have peed your pants, it really does cross your mind if you have!! Thank goodness, I didn't have that problem! Lol! Now, it was just a matter of waiting for the results. Waiting...waiting...waiting.

Well, I guess you can figure it out that the scan came back with marked improvement and I was out of that hospital by 12:30! Elated to be going home, my energy level was minimal and Zi knew that it was going to be tough to get everything done on time to make our flight. That, and the fact that I had yet one more setback before it was all over.

By Wednesday afternoon, I was sure that there was something wrong again. My mouth was raw and my stomach tender to the touch. I thought for sure it was the antibiotic and that I was having another asks reaction. I nearly stroked out as I drove to the walk in clinic to see yet another doctor. The thoughts of returning to the hospital crossed my mind. I had ADR. scneider on speed dial on the burn unit just ready to tell him I was coming back! That this time around, I would probably not survive the SJS and that I wanted to make sure they just let me go. Make me as comfortable as possible and let me say good bye! Oh, the crazy nutso things you think of when you have danced that closely with death! When I got to the clinic, Dr. burned came in, took one look in my mouth and informed me that it was a typical side effect from the antibiotics. All of the good and bad bacteria were being killed off and so another medication and I would be fine! Now, what pace was I planning to run that half marathon in???

Wait...WHAT? What the hell did you just say? I'm not going back to the hospital? I'm not going to die? And, hold on, I can run the half marathon??? I told you I though I was going to have a stroke, right? Well, if ever there was a time to do it, it would have been then! So I grabbed my prescription, picked my jaw up off the floor and headed out of the clinic. I was going to California!!!!!!

And so, here we are! Mike and I flew out on Thursday, just as we had planned. It is now Saturday, the morning before the race. My coach, Rob, is taking us to zhuntington Beach where we will check into our hotel and then go for a much needed run. Of course, a very short and non strenuous one, but I haven't run in a week. I need to get my head in the game and a few miles on my feet may just help with that.

The weather here is absolutely beautiful and I see God's blessings on us in everything. This is the chance of a lifetime and I am taking it!! I will be a part of 20,000 runners tomorrow and representing Team SJS all of the way out here in sunny California. I will keep you posted on the day's events and tomorrow's fabulous race!!! We're on our way, friends! We're on our way!!!!

Tuesday, January 17, 2012

This is My Life!

So last Saturday was what I consider to be my  last "long" run before the Surf City Half.  I have 10 miles scheduled for this weekend's long run, but that distance no longer seems daunting to me.  I have run 13 miles two weeks in a row.  One week was with my husband and dog with light layers and no snow to be found, the second was a solo run with plenty of snow and ice and included frozen water bottles.  Both times made me feel as though I were more than ready to knock this one out of the park!

Last week, while I was struggling to hurdle snow banks, trying to keep my fingers and face warm, and prayed that my Yak Traks would get me home safely, I tuned into a song that was blaring in my ears through my headphones.  I run to music when I'm alone and so many times I have found inspiration from it.  The lyrics maybe or the beat of the bass drum or the riff of a guitar solo.  Music moves me, plain and simple.  But at this point, 8 miles in on a very cold and probably the toughest training run of my measly career, I heard something a little different.  It wasn't a song about inspiration or motivation.  It wasn't a song with a hip hop beat and fast tempo.  It wasn't even a more recent song, no this one has been around for awhile.

I heard the singer start out saying that "Yesterday is a wrinkle on your forehead."'  I found myself nodding thinking that I used to have more wrinkles, but those were lost with my illness.  Lucky me! "Yesterday is a promise that you've broken. Don't Close your eyes, don't close your eyes."   "...And today is all you've got now. Yeah, and today is all you'll ever have.  This is  your life, are you who you want to be?"  I felt the cold from the barely 20 degree temperatures reach through my many layers and goose bumps formed on my skin.  I felt a shiver ripple through my body and realized it wasn't the fact that I was wet, cold and in pain that made me shiver.  Instead it was the fact that I was hearing what Switchfoot was trying to convey.  Was I who I wanted to be?

My head began to flip through the scrapbook in my mind.  Flashes of my kids, husband, parents, and my big brother came and went.  Pictures of my book club, my co workers, my SJS and running friends.  Then memories from my first 5k after beating the odds.  My first half marathon and last year's disappointing performance.  An ugly confrontation with another Survivor about Team SJS and his belief that athletic events such as the Fox Cities Half/Full marathon are inappropriate for Stevens Johnson's Survivors.  His belief that I am not doing enough and that my focus should be on "Big Pharma."  It all crossed my mind and then I thought about what I was trying to accomplish on this cold day.

"Yesterday is a kid in the corner.  Yesterday is dead and over.  Don't close your eyes...This is your life, are you who you want to be?"  I felt a smile creep across my face and I heard myself say out loud, "Yeah...I think I am."  Quickly looking up to see who may possibly be around to hear me talking to myself with a stupid smile across my face, I realized I was completely alone.  Which actually made me think about how crazy I might actually be!  There wasn't another runner around as far as I could see!

I thought again about all of the things I have done in my life.  All of the mistakes I have made, and trust me there are some big ones, the trust I have given to people who never deserved it and the pain I felt from their betrayals. My own desperate actions that have affected the ones I love and my process to make those things right again. The choices I have made to overcome my physical and emotional obstacles left behind from the illness that nearly took my life, but I wouldn't let it, and the incredible people I have now chosen to surround myself with that make me a better person just being who they are.   Yes, this is MY life and I'm who I want to be!!  The good and the bad, the beautiful and the ugly, I'll take it all.

So how about it? Are you who you wanna be??

Sunday, January 8, 2012

Does a PR count if you're just training?

Today was absolutely unbelievable!  Hours later, and I am still flying high!  My husband and I started out with our dog, Toby, about 9:00 this morning.  The sun was shining so bright in the sky, the temperature was about 22 degrees and there was very little wind.  We had dressed in multiple layers, strapped our numerous bottles of water and G2 to our belts and shoved our pockets with Hammer Gel and then we were off!

I was armed with my brand new Garmin and watching the miles go up one at a time was an absolute thrill.  We passed the time by talking about our once in a lifetime trip to California in less than a month.  We are getting to stay with my coach and now good friend, Rob, and his beautiful daughter, Megan.  Neither of us have ever been to California, other than a layover at LAX on our way to Hawaii years ago.  Mike said the part he is looking forward to the most is the warm temperatures!  I laughed since we still haven't had more than an inch of snow this winter.  Extremely bizarre weather for Wisconsin in January. 

I thought about what I was looking forward to the most on this trip.  There are so many things to look forward to!  Finally meeting Rob for the first time after two years of working together, getting away from the cold weather for a few days, running along the Pacific Coast Highway looking out at the ocean, spreading awareness of Stevens Johnson Syndrome by representing Team SJS among thousands of runners, or reaching my own personal goal of beating my PR from two years ago at the Fox Cities Half.  I told you, there are just so many!!

I ran the most solid run I have ever run at that distance!  My fears and anxieties of feeling sick on this run never crossed my mind.  I just went out and ran!  Mike and I talked and laughed and I enjoyed every minute we had together.  He even paid me the biggest compliment he ever could have.  We talked about my dream to run a full marathon this year and the questions I had about whether or not I could do it.  He never paused when he said that he knew I could do it and that I had more determination than he ever did when he trained for the three that he completed.  I will never forget that moment and will always be grateful that he believes in me the way that he does!  Everyone needs someone that believes in them more than they do themselves, but not everyone is that blessed.

When we reached mile 11, I started to really feel it in my legs and my hips.  My joints began to feel as though they were on fire.  We both got a little more quiet and I concentrated hard on the task at hand.  Just 2 miles to go.  2 more miles and we would be home.  One foot and  then the other, breathing in through my nose and out through my mouth, concentrating on my posture, not letting the fatigue take over.  I thought about the other two times I had run this distance and how terrible I felt then and how good I felt now.  Sure I was uncomfortable, but I was running, no walking and my stomach was not giving me any problems!  

As we rounded the final corner, I looked down at my Garmin, looked up and then looked at it again!  Are you kidding me??  Really??  I was killing my PR!  Not by seconds, not by a few minutes.  I hit 13.1 miles and realized I had done it 15 minutes faster than my PR!  15 minutes!!!  I wasn't doubled over in pain and I wasn't sprinting for a bathroom either. I felt great and I felt proud!  I worked hard for that moment, even though it was a training run and the only other person to share it with me was Mike.  But honestly, I couldn't think of another person that would have been more proud than him!

So next week, we get to do it all again!!  Another 13 mile training run on the schedule!  I'm pretty sure Rob is trying to kill me, but I'll do it again.  And then in 4 weeks, I'll do it again!  Here we come California!  Here we come!!

Monday, January 2, 2012

2012 - The Greatest Year Yet?

Over the past few weeks, I have thought, off and on, about all of the amazing things in my life.  I think we all do something like that around this time of year.  There is a list a mile long including family, friends, my job and now that my health issues have (knock on wood) settled down a bit, it is time to be thankful that I have that again.  For the past three years, surgeries, specialists, medicated eye drops, long drives and doctor's office waiting rooms have been a constant.  Something that I had just figured would be a way of life for me for the rest of my years here on this planet.  Luckily, I have had several months of stability.  Nothing has gotten better, but nothing has worsened either.  I am still able to live a fairly normal life, albeit with major changes in the way I do things, but nothing is going to stop me from doing the things I love!

So it is with that in mind that I start thinking about what my goals for 2012 will be.  I'm not a big resolution maker, since those seem to fall by the wayside within a few short weeks or months.  Instead, I think of all of the things I would like to accomplish in the year.  For me, if it is more of a task list, I seem to be more successful at it than if it is a list of things I'd like to change.  A technicality maybe, but it seems to work a bit better for me.

Of course, there are several areas in my life that I would like to make task lists for, but today, I am working on my running goals for the year.  The biggest goal and the one that sticks out in my mind the most is the completion of my first full marathon!  Deb, a dear friend of mine, and I have decided that this is the year for us to tackle those 26.2!  I have to get that sticker for my car window, that's all there is to it!!

The Lakefront Marathon in Milwaukee is on October 7th this year.  It's the race that we both decided on and for me, there could not be a better choice!  As I was looking at the route to decide if this was one I would like to spend 5 or more hours on, I could see that St. Mary's Hospital is located between miles 7 and 8.  The place where I spent 3 months fighting for my life and the place where I lost so much muscle and weight that I left the hospital with a wheelchair and a walker to help me in my process of relearning how to walk and keep my balance.  It's hard to believe that I was ever that sick and that I have come so far since then.  Thinking back, I remember when I first started running again, that first mile on the treadmill where I felt as though I had a cinder blocks on my feet and one misstep would land me in a heap on the floor.  I was so proud of the moment that I had worked up to running outside.  I felt like a true runner again!  I ran 2 miles in 26:46, a 13:23 pace.  I felt like I was flying!  Since then, I have run those 3.1 miles at a 9:56 pace.  Just getting stronger!

Running the Lakefront Marathon, no matter the time, will be a sense of completion for me.  I was sick, I survived, I healed, and now I'm better than I was before I ever heard of Stevens Johnson Syndrome.  It will be an emotional journey, but one well worth the ride!

I'm also planning to tackle 2 more half marathons, a 55 mile relay, and the Fox Cities relay for Team SJS.  I know there are more that I want to do, but those are the ones I have put on my list so far.  My other goal for the year is to see if I can reach 1,000 miles running.  This year was a little over 600, so we'll see how close I get.  

So here is to yet another year of living life to it's fullest, conquering those fears that still linger and that self-doubt that rears it's ugly head from time to time.  Here's to helping other SJS Survivors to realize their own potential and the possibility of achieving their own  goals.  Here's to one foot in front of the other... one day at a time!